Rheumatoid Arthritis Forum

How realistic is this?

Milesawaygirl — Sat, 19 May 2012 06:39:16 GMT

I was dx with seronegative RA in February and started on 10mg of MXT, I had review with rheumy yesterday and dose increased to 20mg. My inflammatory marker has halved but I am still in a lot of pain and have adjusted my life so doing a lot less. Rheumy seems to think in 3 months time I will have no pain but from this forum FB groups etc. managing RA seems far harder than that. Is he given me false hope? Rather than making me feel positive I feel like I don't trust him.

Mag

Need a good rheumatologist

str0kerace — Sat, 19 May 2012 02:35:27 GMT

Hi, I'm new to the site and would like to know if anyone has any recommendations for docs in my area. I live in spartanburg, sc but there are absolutely no good docs in my area so was wondering if anyone could recommend one in charlotte, nc or greenville, sc.
To be clear I want a doctor who isn't afraid to step out of the prednisone box. I currently only take remicade and maintain for the most part with a good clean alkali diet. The doctor i have now thinks its a good idea to be on prednisone for the rest of my life. I'm only 32 and have been battling this for 16 years. Thanks for the insight.

RA flare up???

angeez — Thu, 17 May 2012 04:03:04 GMT

I am 33 and was diagnosed with RA almost 2 years ago. My pain is in my feet and hands. Had an initial injection of depomedrol which was a life saver, felt so much better within 24 hours. Started on Metho. but noticed major hair issues even with Folic Acid. Dr. switched me to Plaquenil with good relief. Well 6-8 mo. ago my hands started bothering me again. Stiff every morning for atleast an hour, difficulty ringing hair out in shower, ringing out a wash cloth etc. then at night before bed they would get very stiff again with swellling. Is it normal to be in pain and have stiffness and swelling? Dr. gave me another injection of depomedrol which worked for a little bit, but once again my hands are really causing me pain. I hate the fact of going back on metho. Any input on this???? Thanks so much!!!!

MED's

y.villegger55 — Mon, 14 May 2012 22:26:27 GMT

I was on Metotrexate for 4 weeks it made me very nausa.Today I went to Doc.and he changed me to 10mg.Prednisone,and also to Sulfasalazine,now I hope this will work I still have lots of pain,my rhumatoid is flare up.

Seronegative?? -- help please

kels — Sun, 13 May 2012 04:58:35 GMT

Hello - So I am new to this forum, but I have questions that I am hoping that others can answer. I was told about 3 weeks ago that I have RA. My labs (RF, anti-CCP, ANA) were all negative in feb of this year. Even my ESR was normal. But exactly two months later I had a carpal tunnel release done and the surgeon took out synovial samples. The pathology came back as Hyperplastic synovium with chronic inflammation - aka classic for RA. The symptoms I was having at the time did match although i would have said mildly. But in the past three works the symptoms have gotten worse. I have even noticed some changes in one of my fingers. I am hoping it is not the start of a boutoniere deformity - but I haven't been able to find any pictures of what it resembles early on. I am currently waiting for my appt with rheumatology - but I really want answers sooner rather than later. So i guess my big questions are:
1) how did i go from no inflammation (normal ESR) with mild symptoms (carpal tunnel was the biggest complaint) to "hyperplastic synovium with chronic inflammation".
2) should the bloodwork be re done already to see if any of the markers have changed?
3) does anyone know how quickly hand deformities start and what the early stages look like?

any help is greatly appreciated.

thank you

New here-Introduction

Vincentg89 — Fri, 11 May 2012 21:04:29 GMT

My name is Vince and I am 22 years old. I was diagnosed yesterday with rheumatoid arthritis. I started 10 mg of mtx and was put on soma for muscle spasms in the spine area. It's a very scary thing to be diagnosed with this condition and many people my age do not understand how serious that it really is. I have had a rough few months. I first was diagnosed with mono, but was experiencing joint pain months before I was even diagnosed with mono. After the mono faded away my condition got worse. My wrist, feet, and back pain was unbearable at times. The mtx seems to be making me pretty sick. I'm experiencing nausea and I'm a bit more achey than usual. I am supposed to start whichever biological drug I choose in the next month or so. If there is any people in my age group on this forum, I would just like to know which biological drug works best. I will take any of the advice I can get. I am keeping positive and changing my life accordingly to live a little easier. It's nice to see that there are groups available that which we can share what we deal with. For people that have been living with this longer than I have, I am truly sorry. I am debating whether I should go with Humira. Anybody that is currently taking Humira would be extremely helpful if they shared there experience with this drug! Pleasure to speak with all of you!:D

new here, diagnosed 11+ years

curley joe — Sun, 29 Apr 2012 23:49:12 GMT

Hello! after several years prednisone, joint replacements, remi-caide, methotrexate, pain meds, i am about 7 years on humira & recently changed from methotrexate to sulfazine ec. RA VERY active now, and was hoping to hear how some of you have responded to sulfazine.... I'm almost 3 weeks in and nearing a full load of it in my system. I'm sure i have some experiences along the way you might gain some useful info from. Hope everyone having a easy go at it as you read this

Ibuprofen, Naproxen, now what?

Orcinus orca — Wed, 25 Apr 2012 03:16:32 GMT

I've been on increasing doses of Ibuprofen and most recently naproxen for as long as i can remember (started around 6-7 i believe along with prednisone and methotrexate)

My new adult Rheumatologist says my RA is no longer "active" but the blood work he took was on a beautiful sunny day during a very low stress period in my life, and I feel it doesnt represent my day to day pain and various other symptoms.

My first appointment with him was awkward, almost like he looked at me and saw me walking and scoffed at the idea of a hip replacement, so we took x rays.
After looking at the x rays his tone and demeanor changed and he asked me how painful it is to walk.

I work as a cook in decent restaurant and am required to be on my feet for 6-8 hours at a time, sometimes more, and i'm absolutely wrecked by the time i'm home. I cant even make the 1/4 mile walk home because the hip pain is so bad.

Every morning my hips hurt so much its a struggle to even get out of bed anymore, i take a hot bath, stretch, take ibuprofen, eat a good breakfast but its always there.

Now this is going to sound really bad to most people, and maybe everything i just said is to justify what i'm about to say but - my co-worker can get me hydrocodone 5mgs at a ridiculously expensive price, but i still pay it just so i'm not limping, my hip isnt throbbing for work, and i can wake up in the morning knowing i'm not going to be quietly suffering giving off negative energy. I take them for no other reason than to not be in pain and i'm going broke doing this.

How can I explain to my rheumatologist that ibuprofen may have worked 3 or 4 or 10 years ago, but it does absolutely nothing anymore and i've never felt so hopeless in my life.

I dont want to get my hips replaced at 23... I want to keep going as long as I can, does a moderate amount of hydrocodone taken as needed not seem like a better alternative to hip replacement this early in the game?

Betneton for Benign Essential Tremor Treatment

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New to site

y.villegger55 — Fri, 20 Apr 2012 13:44:52 GMT

Hello,new to site not to RA-- Recent had blood work and my number was 122 and my inflamation is also high.Doc just put me on Methotrexate 2.5mg once a week.I been reading on this med.and scared now to take in.So that I not going to start it today till tommorw when my hubbie is around.IS it going to bring my imune down,and what about this hair lost i am reading about?Need help.

Confused

pharmgirl — Fri, 20 Apr 2012 06:18:15 GMT

I will try to make this very quick... I just found out this week that my Rheumatoid Factor came back positive. Does that mean I have RA? I have joint pain in a few places and fatigue, that is why my PCP ordered the blood work. I was also told that I didn't need to see a Rheumatologist right away and that I would start with pain management with my PCP 1st and go from there. I never really knew about RA until my doctor's office told me I have it. Please help me understand more!!

Enbrel vs Humira

njb — Mon, 09 Apr 2012 23:07:15 GMT

Hi, I was first diagnosed with PMR and have been on methotrexate and prednisone since October. My mtx dose keeps going up and prednisone down.
I am still in pain. I was finally diagnosed with RA and now they want to change my meds. Mtx with either enbrel or humira. They gave me brochures to make a decision. My husband and I have scoured the net but they basically say the same about both of them. I would like to know what some of you have experienced on these meds and what works best for you. Thanks

Folic Acid

jnn — Sat, 07 Apr 2012 04:42:47 GMT

Just curious how much different people take. Trying to get a feel for what the min-max is. I find 5 mg 6 days a week works for me. Wasn't able to take it yesterday because naprosyn upset my stomach and the folic acid added to the irritation and today was injection. Feeling blah, but hopefully back to old schedule next week.

Do you know any great gout online resources?

Gouty — Wed, 28 Mar 2012 16:39:56 GMT

Hi. My name is Daniel. I saw a gout page on Facebook and it has a lot of great advice. A lot of people with gout are using the page and it seems to be helping. They�ve talked gout news and a lot of ways to battle the pain. The facebook page link is https://www.facebook.com/GoutStudy. I hope it helps, take care! :)

Effects and Limitations of Mobic

Stillshotprod — Thu, 22 Mar 2012 03:16:07 GMT

I've just recently been diagnosed with RA (though I have lived with it for several years now).

I was first prescribed a Methylprednisolone dose pack which, while making me very sick, worked very well to relieve inflammation, stiffness, and pain in my hands.

Two weeks later I was given a corticosteroid injection which didn't help in the least.

I am now taking 15mg of Mobic every day with mixed results. As far as inflammation of the surrounding tissue, the medication works fairly well. When it comes to joint stiffness and pain, the medication does not work at all.

Basically, my hands "look better" but don't actually feel ANY better.

Is this normal? Am I expecting too much from Mobic? Do I need to be on a separate medication for stiffness and pain or should Mobic relieve all of these symptoms (inflammation, stiffness, and pain)?

I can't actually afford Enbrel or Methotrexate yet so I'm doing what I can with anti-inflammatories and pain killers.

Suspect!

unsure481 — Mon, 12 Mar 2012 01:45:29 GMT

I do not intend to waste anyone's time; I have not yet been diagnosed, but my doctor strongly suspects that I have RA. We are waiting on my insurance to kick in before ordering tests that would lead to an official diagnosis. However, I am in pain and very scared. I am not crazy or a hypochondriac or anything of the sort.

Rheumatoid arthritis is prominent on one side of my family, but I never considered that I might develop it. I am only 30, but my symptoms (of whatever this is) began at 29 in one of my feet. It subsided but later returned in my hands and then back into my feet-- both of them. Next I noticed problems with my ankles and wrists... and by problems I mean discomfort and swelling. Then came the popping of my joints, especially after being still and then getting up or otherwise moving around. Now I am very alarmed by the pain at the base of my skull. It is horrible. And although it causes relatively little discomfort, I'm having a tingling/numbness that comes down the side of my arms into my outer 2 (ring & pinky) fingers. Also, I have a bump on my pinky toe that could be a nodule. Or I could be just totally losing my mind. :confused:

I realize that no one can make a diagnosis other than a doctor. I'm just searching for answers, possibilities, and understanding ears/eyes.

Joint Journal for Windows Phone 7

martellaj — Mon, 05 Mar 2012 23:26:07 GMT

Hi, all. First time poster. Last year, my girlfriend was diagnosed with Rheumatoid Arthritis. I developed an app for WP7 called Joint Journal to help keep a more accurate, detailed report of her day to day pain so her doctors could get a better idea of how she's doing. This app is now on the Marketplace for you to use! If there's an interest, I'll continue developing this tool for everyone.

Any questions, problems, or concerns can be sent to JointJournalFeedback@gmail.com. Thanks! Have a great day! :)

Enbrel...and having to get a Hysterectomy

TealBait — Sat, 03 Mar 2012 23:57:06 GMT

Hi....I was DXd with RA last month after 20+ years of being told I had Fibromyalgia. Now...my Gyno has told me I need a Hysterectomy...like this month. I was approved by my Rheumy to start taking Enbrel as soon as my patience assistance meds come in. So I have not started it yet. Has anyone here took Enbrel and then had a Hysterectomy? I believe I am going to put off taking the Enbrel untill I am healed from surgery.... because my immune system is whack anyway as it is. Anyone with any input , I would greatly appriciate:D

~~~Janet~~~

Explanation on CCP Test please

Linda000 — Sat, 03 Mar 2012 16:48:41 GMT

C-REACTIVE PROTEIN: 6.3 mg/L (0.0-10.0)
CYCLIC CITRUL PEP IGG: 1.53 Index

Could someone explain to me what the 1.53 index mean. Is this high and is RA monitor by this. Does this mean I will have a severe case of Ra.

Also the c-reactive protein was 1.0 2 weeks ago. And yesterday had risen 6.3. i suppose it went up because dr tried to lower predisone. i went down hill when he did. so we have upped it again until other ra drugs hopefully kick in.

Just wonder if someone could help me understand these labs. and if the predict the future.

tia linda

newbie

denise — Wed, 29 Feb 2012 13:22:00 GMT

Hi
I have lived with RA for 10 years and am now receiving infliximab alongsid emy metho for the past year
Problem being is, I have chronic sinus problem so get a lot of bunged up feelings and has had to miss quite a few infusions - again, I have had a tickly cough for 3 weeks, the sort that makes you cough when you laugh or breathe in even tho not much at night. I think it is nasal drips as I am under a ENT consultant
does anyone else have this problem as I am due my infusion tomorrow and really need not to miss is as pain is a problem at the m o
Another query - I have a 6 month old grandson and he has just had some immunisations, the day or so after he had them, I held him and his 'dribble' went on to my lips - I know that faeces you have to avoid for a few weeks but what about other bodily fluids? how do mothers cope who have young children?

New and Puzzled

twirlgrl — Wed, 22 Feb 2012 16:33:31 GMT

Hello, all. I am new and pending diagnosis. Bloodwork showed elevated white blood cells and rheumatoid factor "at the high end of normal" but my pain has been off the charts and I'm extremely fatigued. I am quite puzzled about my symptoms and wondering if it is "normal" for the pain to move around and vary in severity. One day I might have pain in my knees (usually one worse than the other), wrists and shoulders. The next day it might be knees, wrists, hands and neck and maybe just knees and hands the day after that. Sometimes I start the day very stiff, feel better a short while later and then by the end of the day I can barely move. Has anyone else experienced this type of symptomatic variance? When I tell people they look at me like I'm out of my mind.

Hi all. RA combined with blood clots??

dean — Wed, 22 Feb 2012 14:29:29 GMT

Hi. My name is Dean. I, like many of you have this evil RA. I also have been diagnosed with multiple blood clots and have been prescribed Warfarin. Has anyone else experienced this? The pharmacist queried my last prescription saying that both the Methotrexate and Warfarin are a bad combination?
I am attending a NRAS meeting in March which is giving information about Biologics so maybe some light at the end of the tunnel.

Has anyone tried Phosphatidylserine?

Legionaire — Sun, 19 Feb 2012 01:25:38 GMT

I don't have RA, but I have a condition called Post Orgasmic Illness Syndrome which is thought to be an autoimmune reaction to some component in the body's own semen triggered by orgasm/ejaculation and taking phosphatidylserine (PS) has almost completely eradicated the joint pain and other pain in my body caused by inflammation.

"Phosphatidylserine has been shown to reduce specific immune response in mice."
http://en.wikipedia.org/wiki/Phosphatidylserine

"It has been known for some time that PS can inhibit macrophage production of proinflammatory cytokines and NO, and that it can block macrophage killing of intracellular parasites"

"Using three different immunogens and several different assays to measure immune responses, we determined that PS stereo-specifically inhibited responses of Ag-specific CD4+ T and B cells in vivo, and that these effects could be mimicked using an activating Ab directed against the PS receptor. Furthermore, these inhibitory effects could be reversed, at least in part, with anti-TGF- Ab, implicating TGF- as an important mediator of the inhibitory response to PS. PS-containing liposomes did not appear to block maturation of bone marrow-derived dendritic cells in response to bacterial endotoxin, TNF-α, or other stimuli as determined by alternation in expression of surface markers or by ability to present Ag to CD4+ lymphocytes. PS-containing liposomes also failed to block the Ag-induced migration of dendritic cells into regional lymph nodes in vivo. Taken together, these findings suggest that PS inhibits the immune response by inhibiting inflammation in tissue."

http://www.jimmunol.org/content/174/3/1393.long

New member, newly dxed.

TealBait — Sat, 18 Feb 2012 23:48:10 GMT

Hi, I am a new member, newly dxed with RA. I am 45 yrs old, female. I was origionally dxed with Fibromyalgia in 1992...but a new doctor has said it is really RA. Makes alot more sence, because fibro meds never worked, and I have more RA symptoms. I am scheduled to start Enbrel. Along with predisone. I am already on Pred. I have liver problems, so there are certian meds I cannot take. I am also supposed to have a hysterectomy in the very near future. Just found that out at my gyno appointment the other day. I am kinda scared to start the Enbrel if I am going to have surgery. Have not discussed this with either my Rheumy or Gyno doctors. I would like to know if anyone else here had a hysterectomy while on Enbrel or another type immune supressor. Thanks!!!:p

Is herbal medicine are best or no side effect ?

Berry — Fri, 17 Feb 2012 07:08:33 GMT

Is herbal medicine are best or no side effect ?
I collect information on this topic and if any one have information and facts share with me detail.
New York Workout

Breneton for Burning Mouth Syndrome

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Turmeric help?

sandyd — Wed, 08 Feb 2012 10:32:29 GMT

Hi,

I have severe RA on many joints and on Methotroxine, Sulphasalzine, Amitrypline as well as other medications for other non related illnesses (Diabetis type 2 and others)
Anyway, somewhere I read that Turmeric was helpful to relieve inflamation, etc.
Has anyone here any thoughts on this, or taken it and does it help?

Any helpful replies appreciated.

Hip Surgery Advice required

uttam — Tue, 07 Feb 2012 13:25:08 GMT

I am a Psoriasis (Ps) suffurer from last 35 years and PsA/RA suffurer from last 15 years. My PsA has specially been bad and I am totally immobile, taking lots of medrol and MTX. Now lately my hip has started paining and the Xray shows Sclerosis/degeneration and the docs here suggest hip replacement but they are worried about the Ps and infection. They says since I have severe Ps specially in HIP area, this may be an issue during surgery. Internal infection may also be an issue. Anyone here has any information regards this or someone who had a hip surgery. How safe is this, should I go for the surgery? Also they say I will have to stop medrol and I cannot do that as i will be almost fainting with pain.

Hi from Cyprus

Tess — Mon, 06 Feb 2012 10:20:58 GMT

My name is Tess and I am from the Uk but moved to Cyprus 9 years ago. I was diagnosed with RA 2 and a half years ago. I have been in pain ever since. Mainly fingers, base of thumb and wrists and both feet. Recently shoulder pains have made dressing/undressing a very slow painful process. I am desperately seeking alternative treatments to steroids etc as none have seemed to do any good. RF 240 on test last year.

Methotextrate

Howitt44 — Sat, 04 Feb 2012 15:19:55 GMT

I don't know if I spelled it correctly, but this is the drug that is normally prescribed for people with RA as a firstline med. I've heard that other drugs are usually taken along with the metho. I had a friend who was diagnosed with lupus and she took this drug for years. She had a bloodcot in the lung as a result and almost died. She is now on oxygen and still has lupus. I was diagnosed with RA two years ago and my rheumatologist wants to put me on it. I have read a lot about the side affects of the drug and it seems to cause lung problems. I already have asthma, so this scares the heck out of me! My dad died with emphysema and my aunt died of COPD (smoking). I've seen people suffer with lung problems and I don't want any part of it. I know that RA can attack the lungs - that is always a possibility. Is it true that insurance will not accept drugs like Enbrel unless you have tried Metho first? Right now I'm not on anything. My blood tests are all good except my RA factor. It was even lower the last time I went in. I've discovered that I can do a lot to help myself with diet, excercise, meditation, massage and supplements. That's the route I'm taking for now. I might decide at one day to take harder drugs - like the biologic. But even they only have a 2 to 5 years success rate. I'd like to hear other opinions, please!
Thanks
Cindy

Research Study at UCLA

Nora_UCLA — Thu, 02 Feb 2012 20:11:11 GMT

For those living in the LA area, UCLA is conducting a 12-week research study using milnacipran for the treatment of rheumatoid arthritis and related pain. If you are 55 years of age or older, not currently receiving any medical treatment with effective medications, you may qualify. Evaluation and study drug are provided at no charge. For more information, call UCLA at (310) 794-9523 or message us.

Hello

epitomeofinnocence — Wed, 01 Feb 2012 14:55:48 GMT

Hi my name is Kelsey and I am 21 years old.

A couple weeks ago I went to my doctor about the pain in my neck and shoulders that I've been experiencing for the past year or so. She did some blood work and found that my ana's are positive. She suspects Lupus but said it could be RA. Since I don't have any of the other symptoms of Lupus, I'm worried that it might be RA.

I'm terribly afraid of how this is going to affect my life, my aerial silks, it already hurts to play guitar.

Any advice?

RA Diagnosis at 55

Howitt44 — Wed, 01 Feb 2012 14:00:56 GMT

Hi, my name is Cindy and I was diagnosed with RA about 2 years ago - very mild. I continued to lose weight, exercise and eat right (cutting sugars, soda, etc). I didn't want to be on prescription medicine at the time, so rheumy sugggested we monitor it and see how I progress. Well, the last few weeks I have had increased pain in hands and ankles and feet. I have read and reread everything I can get my hands on about this disease. I also have read about all the current medicines used to halt progression. My rheumy gave me a prescription for a sulfa drug, but at the time I chose not to fill. She told me to contact her if I chose to start taking it. Well, now I'm considering it. I don't want to take methotextrate (the lung side affects scare me. I have asthma, so lung function is not too good anyway) I am a the point where I am really waying all my options. I'm even considering a fast to find out what foods irritate my RA. Has anyone else been on the sulfa drug? I think it's called sulfasalazine. This drug seems fairly mild. I would appreciated knowing if other posters have taken or are taking this drug. Thanks, Cindy

Stiffness

TommyB — Wed, 01 Feb 2012 00:40:27 GMT

I read a lot about stiffness, but I'm not sure exactly what it means. That sounds like a dumb thing to say, but I'm the kind of guy who has to think things through. Is it a resistance to movemenet, resulting in requiring more muscle exertion to move the joint? Is it a hesitancy to move the joint, because it feels tight or achy, but you could move the joint more or less fully if you just made yourself do it?

Can you describe your stiffness to me?

I will start by describing four kinds of feelings and situations which I might describe as stiffness.

First, sometimes my finger joints feel stiff if they are cold. Have you ever gone swimming in the north Atlantic in the early summer months? When the ocean is extremely cold, you feel a sort of achy stiffness in your joints.

Second, if I've been grasping something long enough, it feels as though it would be hard to straighten my fingers back out. The cold makes this worse. Vibrations make this worse as well, especially if I'm grasping it very hard (like holding and using a chainsaw, or a push lawn mower, for a while). Sometimes I will straighten my fingers back out by putting the tips on my thigh and presing down, mechanically opening them rather than simply flexing the forearm muscles that normally would do so. Sometimes it feels as though I have hyperextended the joint, but in the wrong direction (hypo, I guess, because you can't hyperextend if you're grasping not extending).

Third, after I've had a long day on my feet (worked all day in a kitchen, or a concrete factory floor), once I've cooled down from the work (half hour drive home, shower, sat for a bit), it's hard or painful to walk. My knees, hips, and ankles don't feel like they want to run and jump. It hurts to move them too quickly, and my feet hurt if barefoot. So I stump around the house as though my joints were almost fused. I guess I could probably move normally if I forced myself, but it would be painful and exhausting.

Fourth, and worst, if I've been kneeling for a long period of time (yeah, like five minutes - ouch!), it is very hard to stand up. My knees don't "want" to unbend, and if the tops of my feet were flat on the floor while kneeling, they don't "want" to go back to making a L shape with my leg (if you follow). Instead of jumping right up and walking around, I leverage myself mostly up with my arms if possible, and gingerly press one foot at a time against the ground to mechanically move it (slowly!) back into the normal position. If I don't, it's very painful, though it's hard to describe what kind of pain results. Same thing for squatting (forget it).

This kind of pain comes when almost any joint has been in one position too long (I recently discovered I can't knit my fingers together behind my head to rest my neck, if you know what I mean, for more than a minute or so, because when I straighten my arms back out my elbows scream at me as though the cartilege had popped and torn, sort of like tennis elbow). Practically all my joints are very noisy and pop if in one position too long, and sometimes won't accept weight unless they pop first.

Does that sound like stiffness? What is your stiffness like, or when does it occur? And I guess a big question I have is: could you just force the joint to move if you chose to, but it would hurt so you don't?

Really, any input would be very appreciated. Thank you so much.

Newly diagnosed

jasie — Sun, 29 Jan 2012 18:47:39 GMT

Hi, am 40 and have only just been diagnosed with RA. I had one appointment with the rumatologist who diagnosed me, and I am due to go back on Thursday to discuss a treatment programme, methotrexate etc, and another co cortisteroid injection, already had one that made me ill. Saw GP last week who finally gave me co-dryamol for the pain, my hands are driving me nuts. I live in UK. Just interested in hearing from anyone who has been newly diagnosed and how you coping with the emotions of trying to get your head around a diagnosis that will not go away. The irritability for me is bad at the mo, as I have severe and enduring mental health problems as well,so on liquid lithium and wondered if anyone was on lithium and methotexate together and how you coped with it. Thanks for reading. Jasie x

Any other RA'rs in the St. Louis Metro Area?

baslafda — Sun, 22 Jan 2012 18:00:22 GMT

Hello.

My name is Stacy. I live in Smithton, IL and was recently diagnosed with OA and RA. It's moving along pretty quickly through my body and I just wanted to touch base with anyone in the area to see about Rhuematologists and touch base. I'm so stunned by how quickly this has come on. I start Metho... on Tuesday and feel like all weekend I've been "mourning" the life I had just four months ago. There are so many worse things out there to have and I keep telling myself that. It would be nice to talk with others that understand this pain. I feel like such a complainer in my house so I've begun to fake it pretty good. I really just want to wear a big sign that says..."Yes, I am still in pain". What is it about this disease that makes me feel the need to want to let everyone know how hard I am working at maintaining normalacy?

Wishing all a pain free kinda day.

Stacy

Everything to lose

lglavish — Fri, 20 Jan 2012 22:39:30 GMT

This is for all those that have RA- Please be careful as there are some people on this site that don't have RA and don't have any kind of medical degree. They often post information and 'cures' that are completely unproven and even harmful.

I often see them saying "what do you have to lose by trying it?". There is everything to lose by not getting this disease controlled early on. Precious time can be wasted and permanent joint damage can occur.

I also see these people claiming conspiracy and saying that doctors don't know anything. If there truly was an easy cure to this disease it would be well established and tested with repeatable results.

I have RA, I take modern drugs to control it, and I have my life back. I am very concerned with the amount of misinformation about this disease that plagues the internet. Below are two links, one of which is the ACR (American College of Rheumatology). They are reliable sites with a lot of really good information. Help yourself by educating yourself to make well informed treatment descisions, after all.... you are the one that has to live with it.

http://www.rheumatology.org/practice...ents/index.asp

www.rawarrior.com

Symptoms (undiagnosed)

TommyB — Fri, 20 Jan 2012 01:14:58 GMT

Very grateful for this forum, and have been doing a lot of reading. I would like to share my symptoms, to see if I'm not insane.

I do electric work and build modular homes for a living, so my arms and especially hands are extremely active. I started a second job making pizza (I've been a cook most of my life, so it was easy to pick up). I started getting tired a lot (something I'm used to, working in kitchens), but also started having a lot of wrist/hand pain. I had a physical a couple years prior, and they did a quickie carpal tunnel test (bonk my elbow, got tingly feelings up my hand).

A month after starting the second job (last Sept), it got really bad, so I went to my GP. He didn't seem to be really concerned, just said I had runner's knee and maybe some tendonitis from overexertion and maybe not being physically cut out for the type of work I do. But he sent me to get X-rays of my wrists and blood work.

Tests came back; he sent me to an osteopathic surgeon, who played with my wrists and hands and who found nothing askew in my X-rays. He asked if I ever woke up with my hands asleep (occasionally), if my hands ever got tingly (not really). Exceedingly rarely, if I've been driving more than an hour that day, I'll get an electric shock from my elbow through my fingertips. I get pain in my thumb and forefinger bones (the bone that's really actually part of your hand), and by the end of the week I cannot cut wire with my dikes. The pain is too much, so I press them against my thigh to cut through. I sometimes can't hold my thermos lid tightly enough to unscrew it because it hurts to squeeze that hard.

He figured I had carpal tunnel, gave me a shot of cordizone in the base of my thumb. It helped the thumb and forefinger a bunch, though the rest of the hand (and the other hands and other joints) were still often painful.

My GP at the same time scheduled me to see a rheumatologist (coming up March 7th), due to something in the bloodwork.

I've been reading a lot about RA, and I was very struck by some of the symptoms that I wouldn't have thought of as symptoms. For example, I'm tired all the time (I work a lot!), and I'm way more exhausted and extremely sore and stiff on days off, more than if I worked at both jobs that day. I thought I was just getting old (I'm only 35). I can't seem to get warm on days off. When I sit for a long time, it's hard to walk around - my legs are stiff or sore somehow, and I kind of stump around like my legs are fused for a little bit before I can walk normally.

I dare not kneel or squat - my knees won't take it, and my feet go to sleep painfully. If I have to kneel at work (which is often), it's extremely hardto stand, because my ankles are somehow too painful to really bend, so I stump around a bit before walking normally. I can't put my body weight on my right palm (picture doing push-ups) due to pain. My knees pop after inactivity, and one or the other will randomly give out (pressure-point-like pain) going up and down stairs/ladders (which I do all day). My knees hurt a lot normally.

On a day off I'll be extremely sore in all my joints - shoulders, spine, knees, hands - the exact feeling you get when you're coming down with a bad cold, like someone beat me with a baseball bat and then pushed me in front of a bus. And I reflect, mid-morning, that if I had gone to work today I'd be moving about fine at this time, not hardly sore at all, almost like moving around lubricates everything. Am I just getting old?

My left elbow, starting with the pizza job, has felt very much tennis-elbow, which I figured was just tendonitis due to the unaccustomed motions. But that's been five months or so, and it's still bad, or worse. I can't put my weight on it, and sometimes it pops and gives out if I try. If I lace my fingers behind my head and lean back for any length of time, the elbow aches/burns for a while after I come out of that position (this just started).

All my life, I would very rarely (once or twice a year) get a sharp pain in my chest if I breathed in too deeply, which would go away if I relaxed for a few minutes. I just called this "I have the breathing thing again."

Anyway, undiagnosed as of yet. Sorry to ramble so much. I'm sure there's more symptoms maybe I'm attributing to something else. But having read some of the generic symptoms lists online (health.com, webmd, etc.), but then some of your forum posts, I'm really starting to wonder.

Any thoughts or responses whatsoever (even, "Shut up, stop writing such long posts") would be warmly welcomed. Thank you so much.

Two Rhuematologists one says OA and other says RA. RA Factor is Negative. Help

baslafda — Wed, 18 Jan 2012 21:05:24 GMT

Hello. Four months ago I woke up with my right index finger feeling like my top knuckle was broken, I was also having bad Carpel Tunnel that night so I took a bath for relief. I new I didn't do anything to "break" my knuckle and then I noticed a nodule on that same knuckle. I investigated all my other fingers and all were fine. The next day the same pain and nodule showed up on my left index finger. I went to see my primary who referred me to a Rheumy and put me on prednisone with a follow up appointment in 6 days. By the time of that follow up appointment all of my fingers were hurting, I couldn't open my hands for the first hour or two of the mornings and I had nodules on the top knuckles on 6 fingers. My primary doctor said if she hadn't just seen me 6 days ago with only 2 nodules, she would not have believed these popped up so fast. 1st Rheum diagnosed me with OA, negative RA Factor. Gave me some mobic and tramadol. I got a second opinion (took 3 months to get in with this one) and my symptoms are worse including horrible pain in wrists and base of thumbs. I went to this Rheumy who said she agrees that I have OA but she feels confident that I also have RA regardless of the test results. She did do blood work again and all came back fine. How do I know what I have. 2nd Reumy wants to get me started on the methotrextrate (sp?) right away but I'm nervous because I've had two different diagnosis. Please give me some advice. I appreciate it.

Diagonsed???????

old toolman — Tue, 17 Jan 2012 22:07:22 GMT

In two weeks I've gone from sporadic pain, hand rist arm to shoulder then drifted to my legs. And then some combination of the above to going to an urgent care for extricating pain for four days and nights (numbing pain in the day roving joint pain at night). He took blood tests and x-rays and thought it was some sort of arthritis, and prescribed ibuprofen and pain killer. I got in to see my GP and she increased ibuprofen to 800 mg from 400mg more blood tests. That was a Friday on Monday morning I got a call from her, she said my RA factor was very high and the inflammatory count in my blood was very high changed my medication to prednisone. Also said I should not work till we find out what is going on, couldn't anyway. Trying to get and appointment with rumotoloigist. Last night was a new adventure pain eased early, that does not happen much, but it didn't last came back with a vengeance once I finally got out of bed took 3hrs walk normal. All this in two weeks any thoughts comments. Sorry for rambling

asparatame additive

kerry36 — Sun, 08 Jan 2012 06:36:44 GMT

does anybody here drink or eat anythin sugar free..as it contains asparatame it causes ra symptoms upon many other google it ASPARATAME..i never had anything wrong with me till i started sugar free drinks now i have sever joint pain and many other symptoms have stooped all sugar free drinks for 4 days will see how i go

Wishing you only the best for 2012

MikeGarber — Tue, 03 Jan 2012 07:34:50 GMT

Yo there

Just joined and thought Id wish you all a Only the BEST for 2012!

Tripterygium wilfordii

Legionaire — Tue, 03 Jan 2012 03:09:54 GMT

Has anyone tried this alternative supplement? I read on wikipedia that it is good at reducing inflammation and suppressing the immune system.

But I'm trying to order it and can't find it on amazon or on vitacost. Does anyone know what site might have it in stock?

Urgent help needed - winter vomiting bug and Methotrexate

elainee — Sat, 31 Dec 2011 15:42:38 GMT

Hi there,
I'm hoping someone can help me. I have rheumatoid arthritis and am on methotrexate injection once a week. I contracted the norovirus last week and fainted twice with it, I was so sick. My symptoms subsided after 24 hours, but I still feel an absolute wreck.
My GP came on four days ago and told me that my immune system is so low it's probably just taking so much out of me to fight the infection, so told me to stay in bed for two days. It's four days later now, the symptoms of the virus came back yesterday and lasted a day again, but I'm still as weak as a kitten and need help leaving the bed to go to the toilet!! I've never felt so low in my whole life. My GP also said, not to inject myself this week to give my immune system a chance to fight this infection.
I'm at my wits end here, any advice on how to build myself back up again? I've two small children that are being looked after by my very kind family at the moment

Needing Some Help

luvmyfamily — Tue, 27 Dec 2011 05:14:41 GMT

Not sure yet if I have RA, I have had problems for about 6 years or so now but blood tested negative for RA, I started taking meloxicam a year ago, my systems and pain will get better so I quit taking my meds and think well it is not RA then they will start back up a few months later worse with pain and aching especially the fingers,hands neck and both sides of the shoulders I have had appt to see a specialists but I cancel because I'm feeling better and the expensive of seeing him is so high, my question is can RA pain come and go?

RA and Pregnancy. Advice needed...

Lily — Mon, 26 Dec 2011 21:13:04 GMT

First of all, cookies for reading this <3

I have Sero Negative RA. I am 25. I was on the BC pill and also Plaquenil. In july I found out I was pregnant. I had been on the pill for two years, it came as a total surprised that I was knocked up. I freaked out at first but my fiance was great and so understanding. We ended up being quite excited and looking forward to it. In late August I found out I had lost the baby. I refused a D and C and ended up not miscarrying until late November. In fact I had a D and C finally booked for a Thursday and started Miscarrying tissue on the Monday and cancelled the D and C.

Anyways, over the past week I had been getting nauseous and had heartburn, both familiar symptoms from when I was preggo. However I took a preg test today and it was negative. I was disappointed even though I had decided to wait to try again.

Now, my fiance and I did NOT want kids. We both have some health issues in our family that while they are not serious we just never felt like we needed to bring kids into the world and were decided on adoption (heart disease, RA, then mental health issues on his side). But after getting preggo I just can't stop wanting to try again... It doesn't help that all my friends are having babies. Before this pregnancy I never had the urges to have a baby now I can't stop thinking about it.

My issue... I have been off the Plaquenil since I found out I was pregnant. I have been managing my RA with diet (NO dairy, or meat, or sugar, or packaged foods). Right now I am okay but in a few years that may not be the case. I feel like if I want to be physically able to care for a newborn I should take advantage of my mild symptoms NOW. That the best time to do this is when I am young and relatively symptom free. This RA could get bad at any time really. Perhaps I will really regret not having a child earlier if I am in terrible pain a few years from now.

I am also terrified of being pregnant and worried that I am going to die of complications or the baby is going to be unwell. I am overweight as well and don't want to stay on the BC pill for any longer than I need to as of course there is increased risk of complications with hormonal birth control. Fiance will get a vasectomy as soon as we either have a kid or decide not to. I would like to get off the pill as soon as I can.

Perhaps this doesn't make sense.

I would love anyones advice or personal stories of being pregnant and having RA. Much love to all who took the time to read this. I am very confused and all advice helps.

Rheumatoid Arthritis Research Study

SraKaka — Thu, 22 Dec 2011 00:49:53 GMT

Hello,
I am a freshman from high school. I am participating in the Alameda County Science and Engineering Fair and am doing an epidemiology study on the correlation between rheumatoid arthritis and meat consumption. For this I have made surveys. Please fill this online anonymous survey which should take no longer than 2 minutes. Even if you do not have RA please fill this survey out.
Here is the link (copy and paste into URL)
http://www.zoomerang.com/Survey/WEB22DMHBDJTNJ
Thank You so much :)

Is this normal to feel this way?

Anthony57 — Wed, 21 Dec 2011 02:57:53 GMT

I've had RA since the spring of 2007. The first 2 1/2 years after starting on 5 methotrexate pills a week I was doing great and actually felt as good as I did before I got the disease if not better. Then in spring 2010 the wheels came off. My RA flared starting in my fingers and then the next thing i knew I was diagnosed with pneumonia I had severe pleurisy and a low fever for months. I had CT scans and Xrays of my lungs by different doctors trying to figure out what was going on. My family doctor still insists it was pneumonia while other specialists have told me they think it was RA related. I was off the methotrexate during that time and stayed relatively free of joint pain for 3 months. The pains then came back with a vengeance in Sept 2010 and my RA doctor quickly put me back on methotrexate. After several weeks the joint pains improved but still not like it was before. But mostly I have just felt terrible for the last year and a half. I'm extremely tired and fatigued all the time, my throat has constant drainage and mucus (which I know is probably unrelated), my body temperature always runs very low now where it didn't before, and I just feel out of it a lot of times like when you are sick. You just want to stay home. But I have no fever, in fact I'm freezing all the time. One day I'll feel pretty good then feel lousy again the next. My doctor recently upped me to 8 pills a week because joints keep getting inflamed. I try staying positive but it's hard. . .I can't handle stress like I used to which is tough because of my type of work. Next year I can retire so am hoping that wil help! I'm just wondering whether these symptoms are more from the disease itself or from the methotrexate? Does anyone else feel like this with their RA?

I am 24 and was recently diagnosed with RA! I am scared to death and nervous :(

Ashleybrks23 — Wed, 14 Dec 2011 01:05:41 GMT

I was recently diagnosed with RA. I am 24 years old and have only one kidney. I frequently have pain but more so I am alway tired and never feel like I get enough sleep. Does anyone else ever feel like this ?? I am supposed to start enbrel next month. Has anyone taken this? If so what should I expect? An what should I expect from this disease?

New Member Intro

Lena — Fri, 09 Dec 2011 19:11:07 GMT

I'm 32, first started showing RA symptoms around puberty age 13 or so. My doctor at the time, who was also my mother and my grandmother's doctor, diagnosed me based on my very strong family history. My mother and both of my grandmothers and, well, pretty much all of the women in my family, have RA. The pain was very mild when I was in high school. I took ibuprofen as needed, which wasn't too often, I was also very athletic. There was fatigue, but it's hard to say whether it was from RA or being a teenager :) When I was 19 and still fit, though no longer participating in organized sports, over the winter, it worsened noticeably. That was the first time the pain was chronic and impacted my life. I went to the doctor, who prescribed naproxen and referred me to a rheumatologist. The rheumatologist was a creep who made me very uncomfortable (I later found out that he had a number of complaints against him from female patients and employees) he was also very dismissive of my symptoms. I never went back. I was young, poor, frequently uninsured and after my bad experience with the rheumatologist and considering the lifetime of illness that the other women in my family have suffered as a result of RA drugs, I decided to just deal with it on my own ... which has pretty much just meant sucking it up and taking ibuprofen or naproxen at prescription doses, when I couldn't bear it anymore. The pain and fatigue has caused me to become a much more sedentary and eventually, overweight, person. I have other autoimmune conditions, including; allergies, psoriasis, eczema and pityriasis rosea. I also have blood sugar issues. Diabetes runs in my family, on both sides, while I am not diabetic, my blood sugar is unstable. When I cut as much corn syrup out of my diet as possible, this improved a bit.

I'm 32 now and the pain and swelling has gotten significantly worse this year. My feet have been bad for a long time, with the period of time in which I can stand, steadily diminishing. My hands are always swollen and stiff unless I've been taking huge amounts of ibuprofen, which I've found myself taking way too much of and even that has stopped working in the past few weeks. The pain has spread everywhere. My feet and hands are always the worst, but my neck, back, knees, hips, shoulders ... you name it, it hurts. I woke up from 9 hours of good sleep, had four cups of coffee and I'm still exhausted. I'm hobbling around like an old lady. Today is especially bad, that's what led me here. I can't ignore this disease anymore.

I am unemployed and uninsured, so doctors and medication, even if I were willing to take them, are out of the question.

I already take fish oil, 3600 mg per day, plus a NOW brand liquid multi vitamin at half dose (because research shows that taking huge amounts of vitamin supplements may decrease your lifespan). The fish oil does help. It's not miraculous, but worth taking.

A few months ago, my husband and I tried the Esselstyn diet, which is essentially vegan, no fat added (no oils, nuts etc). This means that I cut dairy, probably 90% (we found it very difficult to stick with suck a restrictive diet). I think I might have felt a little bit better, but it was also warmer outside. I totally fell off the wagon right before Thanksgiving. Not sure if it was reverting to my old dietary habits or the change in weather, but I've been getting progressively worse.

I've decided to make one change at a time, until I figure out what works and what has no effect. I think I'm going to start by cutting dairy, since, anecdotally, that seems to help a lot of people. I'll switch back to Silk soy and almond products. Though, to be perfectly honest, I probably won't be 100% off dairy until after Christmas day.

I guess I'm just looking for a place to learn and maybe a bit of support. My husband is sometimes sympathetic, but I don't think he fully understands, I don't think anyone who doesn't have a "hidden disease" can fully understand and he gets frustrated with me ... heck, I get frustrated with myself.

I actually like to exercise. I would love to be able to knock back the pain and fatigue to the point where I can actually do the things I love.

RA and Juvederm

LoriMcQ — Tue, 06 Dec 2011 20:12:00 GMT

I am 29 and have had RA since I was 22. I have two Juvederm injections and have noticed a significant reduction of pain for at least 4 months after the injection. Has anyone else gotten Juvederm injections and do you have similar results? Just curious if this is a fluke or not.

getting correct diagnosis help

rubycat — Mon, 05 Dec 2011 19:51:16 GMT

Last week I had a dr diagnose me with gout by symptoms only. Gout generally affects males and not both sides of the body. I question his diagnosis since I am a 46 yr old female and have multiple joints affected. I have both thumb joints swollen and painful. Also, both ankles and knees. Where do I start to get a correct diagnosis? From reading I see that gout and RA are similar in presenting themselves. What tests would you have your doctor run?

Diagnosed today and scared to death!

klynn75 — Mon, 28 Nov 2011 21:37:07 GMT

Hi. My name is Kara. I am a 36 year old married mother of 3. I have been having alot of "unexplained" medical issues for years but just 4 weeks ago woke up in the worst all over body pain I have ever felt in my life. I kept calling my doctor after MRI's and CT scans at the hospital showed nothing and nearly had to demand them to do more tests to find out what was wrong! I knew I should not be feeling like this. Diagnosis of RA came in today and I can not get in to a rheumatologist until Dec. 21st. Besides being in an immense amount of pain, I am literally terrified and just looking for advice and moral support. I don't know much about his diease besides what I have read just today.:( HELP!!

Pregnancy and RA? Experiences?

Lily — Wed, 23 Nov 2011 05:45:17 GMT

I have RA. i am not on meds. I got off 4 months ago when found out I was pregnant. I miscarried and now I am thinking about trying again...

I am managing my RA with diet. It is going well. I know NOW is the best time to have a baby while my RA is relatively mild.

Well.. I'm wondering what I can anticipate with an RA pregnancy... what are the difficulties? SOmeone told me my chance of dying are much higher with an autoimmune disease.

Any and all advice is SO appreciated. Thank you!

And please tell me how it was to raise a child with RA. Mine is almost entirely in my hands.

Off Meds- Controlling Flare Ups with Diet

Lily — Wed, 23 Nov 2011 05:35:51 GMT

I just wanted to share this with you guys.

I was diagnosed a year and a half ago but have been having obvious RA in my hands for closer to 3 years. My grandmother had it bad.

I was put on Plaquenil which DID help. I've also experimented with elimination diets.

Well in July I found out I was pregnant and quit the plaquenil. I miscarried and continued not using it. also my doc was giving me two months scripts at a time and demanding I come back. I was not into that. She was also pushing for next level meds and I do not have the money to pay for them. Also am terrified of blood tests so I decided to just go ahead and alter my diet and see if that worked. Now is the time to try, I figured.

Anyways its been 4 months and the plaquenil wore off after about 2. i started controlling my diet, no meat (went vegan). no dairy, no sugar (or limited sugar) and no packaged foods. When I was eating bad after the miscarriage my pain came back for a week. it was bad. Then when I went back on the good food, it went away again.

I feel great. I still get two fingers that act up but comparing now to before its a HUGE DIFFERENCE. I do have to take it easy on my hands but thats always been a given.

Not sure if anyone has tried veganism and found it helped but I recommend it. I eat eggs, chicken and fish ocassionally so I am by no means a die hard!! I even eat cheese when I absolutely need a pizza (homemade of course)

Thanks for having me on this forum :)