Diagnosed yesterday - advice needed!

[Paula]

I received my blood tests back yesterday, and tested positive for RA - primarily affecting my right hand. When I wake up, it is extremely difficult to write, open doors, etc. for hours. I haven't been able to make a fist with that hand for many months. My doctor has referred me to a specialist. My question is this: will drug treatment ever bring back full motion to my hand? Or, should I just expect some subsiding of the pain and stiffness? Thanks, everyone -

Paula

[kageyd]

Welcome, and here's a start. Sorry you're here!!! But glad you're seeking help. Diagnosis comes at all ages. Two of us here, me and Mac, are in our 60's. Many of the people who post here are vigorous somewhat younger people in their 30's trying to raise kids, and work at the same time, and my heart just goes out to them especially.

First of all, READ. I find the about.com/rheumatoid arthritis web site a good starting point, but there are many, and each one adds a little more to your overall understanding.

Some words of advice to get you started:

1. Do not trust a general practitioner either to complete a diagnosis or to get you on the right medical path; I'm sure many are quite capable, but RA is an evolving field and only a good Rheumatologist will really be on top of the most current treatment protocols and advances in medication. Do everything in your power to get in the hands of a Recommended Rheumatologist (you might consult the Arthritis Foundation office in your area, they are supposed to be very good at helping people find the right physicians).

2. The causes of RA are unknown. The processes by which a subset of white blood cells goes wrong are well understood, but why things go wrong is just not known. Do not blame yourself; it is 99% that nothing you ever did in your life "caused" RA, not diet, not exercise, as far as we know not exposure to anything toxic, etc. Causes may someday be found, but as of today, no one knows. Do not be guilty.

3. I have an excellent relatively young Rheumatologist who is on top of her field. She, and others mentioned here, say that today RA in its early stages should be addressed aggressively with medications to halt progress of the disease. The starter drugs tend to be Plaquenil, Sulfasalazine, and Methotrexate, though some people do start with prednisone alone or with the others - but my reading suggests that the number of people who can regularly use steroids is somewhat low.

4. Be careful not to use just pain control, because things like NSAIDs don't affect the disease process, at least most doctors think they don't.

5. Read, read, read. This is a complicated, poorly understood disease, and you need ACTIVE help, not just a once every 6 month consultation. Find a rheumatologist who talks honestly to you, especially at the beginning.

6. if you ever test negative for the RA factor on your blood tests, do know that at least 20% of RA sufferers test negative; you'll need full blood work and x-rays of the major joints to identify characteristic RA deterioration. In general, the higher your initial RA factor at diagnosis, the more severe your RA is likely to be – but those are probabilities, not answers for any given individual.

7. The three drugs you're likely to be started on are plaquenil, sulfasalazine or methotrexate; in that order they are least to most likely to have side effects (though if you are allergic to sulfa in general, or turn out to be, that one would simply not work for you). Apparently many people start on methotrexate. My Rheumy said since I am just diagnosed and am not clearly suffering new pain from RA at this point (I have had osteo for 40 years, so separating what's osteo and what's RA is not simple for me...), then let's start with something moderately aggressive, sulfasalazine, and if your blood work or your pain deteriorate, then we'd move up to methotrexate. In my reading here and elsewhere, quite a few people swear by methotrex, but - no alcohol at all, and it is slightly more likely than the sulfasalazine to have other side effects. i'm a daily wine drinker, so I said definitely let's go for the sulfasal first. I’m now at full dose and thusfar see no progression in my RA – which is good!!

8. The biologics (Humira, Enbrel, Acembra, others...) are much more likely to have side effects, and those side effects tend to be much more serious and, problem when there are side effects, they tend to show up several years into the use of them at which point you may have some very serious illnesses. There is a great article in the current AARP journal on biologics in general, and you should get a copy. In your case, my guess is that the biologics are a long way in your future.

9. With rare exception, RA does not go away. In some people, especially those who start off mildly, RA may progress very slowly or hardly at all, or fluctuate with long quiescent periods. If it starts bad, it tends to stay bad, unless and until medications help, but there is no known cure. Stay tuned, though, as there is a lot of ongoing research.

RA is a VERY difficult disease to treat, and with huge individual variations from awful to oh-just-so-so. I've led a grand life despite a host of illnesses, including this one, still travel a lot (retired now), and can only advocate that YOU take charge and don't ever let any doctor just dismiss you along the way; it's your life, not theirs. Reach out on your own and, as you're doing, ask others for their wisdom and experiences.

Hope that helps, and please feel free to comment or ask any time. Kageyd

[Paula]

kageyd, thank you so very much for the excellent information!! I am 45, and somewhat floored by the diagnosis - but I suspected I had it for quite a while. I am going to the Texas Rheumatology Institute as soon as I can acquire an appointment. Also, thank you for the advice on medications - I am also a daily wine drinker, and so sulfasalazine it is! ;) I certainly hope it helps, as I can barely turn a doorknob now. My symptoms have intensified dramatically in the past six months. I am very grateful for your advice. Best of luck to all of us. I look forward to speaking with you and others in this forum - terrific support system.

[kageyd]

Happy to help. About your hand, I'd bet that the rheumatologist will tell you, "Let's wait a few weeks and see." The doc will probably make sure you are on appropriate pain meds, and I'm guessing will start you on one of the anti-RA meds we talked about. If it's sulfasal, it will take several weeks to work up to the full dose of 6 pills a day; they usually start at 2 and see how you respond. I had stomach pains and took it more slowly than usual, but am now up to 6. The others I don't know about personally. Some people say one glass of wine a day with methotrex is fine; who knows. I do better at night on the full sal dose, so I take 2 in the morning, 2 at bedtime, and 2 in the middle of the night!! I'm doing OK, if a little fatigued (another possible side effect).

Let me know how things turn out. Medicine in Texas is absolutely top rate, so you should be in good hands (let's think of them as non-RA hands!).

All my best. Kageyd (pronounced cagey-dee, an old nickname from work)

[Paula]

kageyd - I visited my specialist today - she wants me to start on injections of Enbrel after additional bloodwork, TB test, xrays are complete (in two weeks). Of course it is radically expensive, but with the drug company's co-pay I will pay next to nothing. I was startled at being put on the injections right off the bat - I did say I wanted to be sure any prescribed drugs were combatable with drinking an occasional glass of wine. She actually looked at me and said, "Well, are you planning to stop drinking alcohol?" LOL, yeah, NO. Then she acted as if the injections were my only option! I am confused already. :confused: Any thoughts?

[kageyd]

I am not a doctor, so obviously I can't advise. My thoughts are that your blood values (RA factor, Cyclic Citrulline Factor, Sedimentation rate...) were perhaps relatively high, which would be a possible indicator of a more, rather than less, vigorous RA. Hence the plan to move you right to the biologics. That's a guess on my part. Somewhere on the posts on this forum I have seen some people say that Enbrel was THE right medicine for them, and that they have been very satisfied with it, but I don't recall any who said they started right off on it - there may well have been some. Put Enbrel in the search function on the forum and see what you get.

When you Google Enbrel - side effects you will find that this, and all the biologics, have potentially difficult and problematic side effects. But of course only a percentage of patients suffer the side effects, so I have to presume that your physician will be following you very closely. You need to read up on what to look for/worry about in the way of side effects.

It is a rheumatic center, Texas is known for some extraordinarily good medicine, and I guess the main question I would ask your rheumatologist there is why you are starting with the biologics. I suspect and hope you will hear some good reasons.

(The alcohol was just for the meth - I haven't really read up on the biologics to that depth). I suspect that if my initial blood values had been high my rheumatologist might well have put me right on biologics as well.

Keep me posted, I'm VERY interested. And fingers crossed that it works beautifully for you!!! Kageyd

[kageyd]

Paula, I snooped around about Enbrel, and found that it is likely to be prescribed for "moderate to severe" RA, which is probably how your rheumatologist decided that your hands (and maybe the blood values) put you in that category. (and I also wanted to learn more about Enbrel, because it may well be in my own future).

While the side effects can be dramatic, they are also at fairly low percentages, so it's just something to watch. One "helpful hint" that I saw was to warm the Enbrel for maybe an hour before injection (I gather it's kept in the refrigerator), and then put some ice on the injection site right before the injection to reduce the "local" pain - which seems to be a fairly common complaint. You have to take quick care of infections of any kind, especially upper respiratory, and let your doctor know when/if you have any infections going on.

Let me know how you're doing. I've read several posts now where people said Enbrel really helped situations like yours, where a joint was already "frozen" and painful. My best. Kageyd

[Paula]

kageyd, that certainly sounds like what is happening - my Dr. didn't elaborate on the blood test results (which my primary care doctor had taken) other than to say "well, your rheumatoid is high." The additional blood tests I am now awaiting results on are for hepatitus and liver diseases, I gather Enbrel cannot be prescribed if there are problems in those areas. I am still reeling from the cost (although I won't pay more than $60 a year thanks to Enbrel's customer care card). My specialist did say I have early RA, since my symptoms only have been evident for a year - most of them in the past 6 months. I know progression of the disease varies widely...even in the past week, I have noticed stiffness and pain in the left hand too. I am only taking Advil now until I receive the Enbrel. I will absolutely keep you updated on how Enbrel works for me; I also read the side effects and they do seem minimal. Thank you so much for your support!!

[star73]

Hey Paula! I'm glad your rheumy is being aggressive in treating you as early treatment is best! Nobody wants the deformities that RA can cause. I have heard lots of people on other forums say that Enbrel changed their life. Hopefully, the problems with your hands will decrease soon and you can feel better. It is kinda a game play with this darn disease....some people do great on some meds while others dont. We are different! I am on mtx and Arava (Arava just started this week). It's really important to be educated on the drugs but not to let them scare you.. RA is much scarier than the meds. My rheumy told me my immune system was in worse shape BEFORE starting the meds cause RA alone is worse. I hope you get some relief soon!

[Paula]

Thank you, Star73! I am really looking forward to treatment - little movements I always took for granted, like chopping vegetables, picking up a book, etc. are causing me a lot of pain at this point. Oddly, it does not hurt to type - thank goodness for that! I did read that some doctors are putting patients directly to the "2nd line defense" drugs in an effort to stop deformity.

My wariness about drugs is related to a bad Chantix experience I had 1 1/2 years ago while attempting to quit smoking. And, having never taken prescription meds for anything more serious than a sinus infection, I do feel a little guilty about the high cost of Enbrel. Prior to RA, I have not been a burden to the escalating health care costs - but, it is what it is. Best of luck to all of us!

[star73]

awwww Paula...I am so sorry you are in so much pain :( I love to read and these days I have to prop my arms with pillows and rest the book on a pillow cause my hands just cant hold the book up very long....it is frustrating for sure!

I can understand your concern about the meds I really can but there are even potential side effects with Tylenol. There are also potential side effects with foods and other stuff in the environment. These meds may seem scary but the pics of RA hands and the deformities scare me to death! Plus, you are being more monitored on these meds than other meds. Your doc will check your lab to make sure no liver or kidney damage is being done. I am a licensed LPN but I work at home now typing. But, when I remember back when Prilosec first came out (I was only 19) wow! :) and we had to monitor patients liver tests on that. Now, its over the counter with no monitoring. I made up my mind about the meds when I saw a lady walk into my rheumy's office, she was about 80 and her knees were turned in and her ankles were obviously swollen....but it was her hands that stopped me in my tracks and brought tears to my eyes. Her fingers were twisted all over the place and on top of each other. She actually could sign her name but it was difficult. I wondered how she was able to do anything with such deformities. Right then, I decided I would not be scared of the meds. Sorry, I know I wrote a book here! Just want you to know that I am here for you and understand your concerns. When is your next appt?

[Paula]

star73, I do love to read too! You just gave me an idea on the pillows propping the book up - excellent! My hands are so painful today...not functioning at all, even opening a can of Coke is impossible. I am getting xrays tomorrow in hands, wrists, pelvis, chest, feet and spine - what fun. My Dr. said it is to get a baseline in the event there is damage to the joints in the future.

How sad about the woman you saw...my hands are already very swollen and do not look very good! I am hoping that my blood tests come back within the next week and I can start Enbrel then. I was telling a friend of mine the other day that somehow since my diagnosis, I feel an odd relief just knowing what my ailment is. Thank you for your kind words!! I hope you are doing well and enjoying the weekend!

Paula

[star73]

your welcome on the book info! another thing that helps my hands is paraffin wax. I have one of those kits from Walmart...and when my hands get really bad I dip them in and it feels great. It is a temporary relief for me but goodness...so worth it!

Oh yes..the x-rays....I guess I should say get used to them...and bone density and MRIs. It can be tiring but its good to know if there is damage going on as the damage can occur even when you feel good.

I do understand what you mean by knowing what ails you! Even though the diagnosis is RA it helps to know what you fighting!!!!!!! I was diagnosed with fibromyalgia before RA but it was the RA all along so I was glad to find a doc who really listened to me. I will admit that I have felt better on the methotrexate. I'm hoping Arava helps as much.

RA can be a difficult thing as I am learning. I was just officially diagnosed last year. There are mild, moderate, and severe cases and alot of different personal stories out there. I really dont know where I fit in cause my scans do not show damage (thank goodness) but I cant stay on my feet very long and my hands hurt and knees.etc. And I also cant run a marathon like some can. With that....I dont believe mine is severe because I am able to walk and do normal daily stuff.. Guess we can only take one day at a time! It's good to hear back from you Paula!

[kageyd]

Thanks for the info, Star73. As newly diagnosed, and with no RA factor and no Cyclic cit factor (at least not yet...), but classic RA gnarly knuckles and some shadows of bone deterioration around the knees, I'm also wondering how they will tell there is progression. How often does your rheumy order up x-rays and/or MRI's? Every few months maybe? I'm doing blood tests regulary on the sulfasalazine because she wants to watch my WBC count, which tends to the low side, but not doing any other monitoring besides my periodic reports.

I'm a bit of an outlier because of my 40 year osteo; there is just no way I can separate long standing and slowly increasing knee pain, which I've had forever, from what might be RA pain. She's going to try some cortisone injections in my knees because if that helps it will suggest that the knee pain is mostly osteo; if it doesn't help, then the knee pain is more likely RA.

This is one crazy-mixed up disease! Thanks for sharing so many good thoughts and ideas. Kageyd

[star73]

kageyd....first let me say that having OA and RA is a bummer! I sure feel for you. I hope the cortisone injection helps you!

I have blood work monthly due to the mtx and Arava. I really dont know if there is a specific timeframe on the x-rays. I guess it depends on how you are doing and if your symptoms worsen but I believe they want to monitor things yearly. I just had MRIs of my wrist and foot and the report was good (yay!) and I have to have them repeated in a year...same on the bone density. I'm not really sure about regular x-rays as I have had them several times. Sometimes I wonder if I dont glow in the dark from all the radiation exposure (grins) but I do want to know if there is damage or if things worsen so we can get busy treating it!

It certainly is one crazy, mixed-up disease! I agree with you there! Have a great day!

[kageyd]

Hey, Star, that's comforting. It's why we're here, to talk to others facing the same unknowns - and communicating, and surviving, and even sometimes thriving! Thanks, made my day. Kageyd

[Paula]

kageyd annd star73 - I had xrays taken of my feet, hands, spine, pelvis, and chest this morning. I called my rheumotologist office in the afternoon to ask when I could come back in for the Enbrel prescription (I was originally told 2 weeks from 1 week ago), and after a little probing, the assistant I was talking to said my blood tests were already in, and the xray results as well. So, I made an appointment for the day after tomorrow, my doctor's earliest time. I don't know whether to be angry I wasn't called when the tests came in, or relieved that the tests perhaps did not show any problems! Jeez!!
It certainly is a crazy disease. So, we just hold on for the ride and hope the next day is pain-free. Wishing both you lovely ladies a great evening :)

[star73]

Girl, my rheumy's office and I go round and round sometimes! I left a message for the nurse last week cause when I was there two weeks ago the nurse wasnt at her desk to make a follow-up appt...she is the one who schedules their appts. So, they told me they would call me with an appt. What happens? The nurse mails me an appt date and time.....not a good day and not a good time for me. I am off work on Mondays and those are the best days for me and plus I travel 1-1/2 hours so I need an earlier time. I have called and left a message for her ...that was last week and she still has not called me! I was a nurse in a doctors office for 13 years and no way would I have treated patients like this. Oh well....such as life! lol Please let us know what your results show and what they plan to do! :)

[kageyd]

Yeah, Paula and Star73, if the doctor is good we put up with a lot from the front office (and also let the doctor know about the snafus you have encountered). Med offices today are set up in all kinds of ways, some where the doc is part of a group with almost no individual control over the office, some where the doc knows every move of the staff, and a lot in between. My sense over many years, many illnesses, and many doctors has been -- if the doctor is good, then I cope with the office with firmness and smiles and polite PERSISTENCE. Keep us up to date as things move along... If you're getting good medicine, fight the front office battles - remind them they are supposed to be working FOR YOU. Kageyd

[adhityaen]

Hi all of my senior members, with great pain and of course, with great enthusiasm I am happy to be here to get great suggestions and ideas from our members for my mom who is undergoing treatment for pain in her foot. I couldn't make with medicines and just informing that I really got perturbed from reading such a long description of Paula and others, of course, Kayegd yours too. I just want to say that in my other posting I informed I pray to God for wellness to all and I want to just repeat the same here, again - "May God makes the Pharma companies to come quickly with great med to drive away RA, for once and for all. Let him keep us painless."

[Paula]

adhityaen, best of luck to you too!! Thank you for the prayers, we all certainly need them :)

[Paula]

Well, my Enbrel is arriving in 6 days, shipped directly to my door (the customer support is amazing at that company!) I met with my rheumatologist today - my bloodwork and xrays results were in. I had tested positive on the RF test, but she wanted to do the anti-CCP test. Unfortunately, my levels are >250 on the anti-CCP - which I gather is definitive for RA and very high. Even worse, my xrays showed erosion (already!) in both wrists. I keep telling myself I knew it was going to be bad news, otherwise my Dr. wouldn't have suggested Enbrel even before getting those test results. Still, this sucks.:(

[kageyd]

Oh, Paula, I'm so sorry to hear the bad numbers. Let us know how the Enbrel works. I read the posts on Genentech's new FDA approvel (Acembra, something like that), and it uses a mechanism different from the existing biologics, all of which attack the tumor necrosis factor (I'm not a chemist, but I think it's something along those lines). Just mentioning that in case the Enbrel doesn't do the job, there is yet another new line of attack. Also, I noted that Enbrel is often used with methotrexate, and some recent studies have shown that the use of two meds simultaneously is more effective than one alone.

...and remember the warming of the solution and the ice on the injection site to reduce at least that pain...

All my best, thinking best possible thoughts for you. Kageyd

[star73]

so sorry Paula...I know its a major blow to actually hear the words RA. On a positive note, you now have a diagnosis for your symptoms and you can get started on treatment to help slow the process. The problem with RA is you can have damage occurring even when you feel ok so its best to get on the meds and stay on them to prevent or slow further damage. We are all here for you Paula! I've heard many good things about Enbrel....please keep us posted on how you do on it!

Also...if you are able to...you may want to purchase a paraffin wax thing to help with your hands especially in the mornings. Do you have symptoms anywhere else or just mainly your hands? My feet hurt a lot...i cant stand for very long and I'm trying to find some comfy shoes that are still cute to wear :)

[Paula]

Thank you, kageyd and star73...I don't know why I am so bummed out today after hearing the 2nd test and xray results - I knew I had RA. I guess the bone damage in the xrays threw me for a loop; I was not expecting that! My Dr. seems very competent and progressive, but her demeanor is a little cold. She said "Well, I told you last time you probably have RA...and now, yes, you DO have RA." She clearly had not looked at my xrays prior to the meeting, so she was looking at her laptop, and saying "you have bone erosion in the wrists, and let's see...spine looks ok..." It was just a very unsettling experience. I have never had any health problems, so I am new at this game and need to gain some inner strength! Tomorrow will be better, this I know. :)

Thanks for the encouraging words and well wishes!

Paula

[kageyd]

Paula, I just wrote you a LONG piece on getting a second opinon, and somehow the internet gods destroyed it, so I will redo it a little later. The essence was that for your own peace of mind, given all you have said, you need some verification, especially about possible combinations of Enbrel with other meds. More later (when my anger with the internet gods has diminished...). Kageyd

[kageyd]

Hi Paula, back. I should know better than to compose long things online. As you know, I’m 69, and have had a lifetime of sicknesses, despite which I lived a fulltime professional life for almost 50 years. Atrial fibrillation, celiac/gluten intolerance, hysterectomy, artificial hip because of osteo, stroke, one allergy that triggered several anaphylactic reactions, some gastric bleeding, etc. I have always insisted on seeking out second opinions (finding my own, not letting my doctor do the referral..), and sometimes third or fourth if I felt I really wasn’t fully confident. And in every instance the second opinion gave me important new information and significantly expanded my understanding of what was going on, both in the illness and in its treatment. I’ll give one example.

I found a wonderful cardiologist in NY, just superb, for two years, who treated my atrial fib (which was really because of shortness of breath and dizziness curtailing my walking). But I was also using forums, one especially good one, to explore. I learned that ablation (a catheter-based burning out of some inner heart tissue) had helped many, but not all, patients. My cardiologist said no, no, definitely not for me. So I shut up. But I also then made arrangements to see a world-class person at Cleveland Clinic that I learned of on the forum (he took the same insurance everyone else did…only it was hard to get an appointment). He said I was a good, but not excellent candidate for ablation, but it might take more than one try. Took two years to get onto his schedule for that ablation, all the while still being medicated by my NY cardiologist (who himself is very well known). First ablation helped, but I needed a “touch up” a year later, and ever since, almost two years now, I have been in perfect rhythm (understanding that it might not last forever, not much does). My original cardiologist was not happy with my having had the ablation against his advice, and we have parted company. But now I am whole again, so to heck with him, much as I liked him.

I have had similar but not quite so dramatic experiences on many occasions. Every second/third opinion gave me more knowledge of both the source of my illness and the possible ways of treating it. I used online forums for Atrial fib to learn SO much, where people discussed the records of individual surgeons and hospitals. I am so disappointed that I can’t find in this or any RA forum discussions of where the really good rheumatologists are, and who they are. I would never have found the person who fixed me had I not learned so much from others about where to go and who to see.

I think that at some point you should try to find out who the good rheumatologists/RA specialists are in Dallas or Houston or Austin at the big, world-famous Texas centers, and haul your records and yourself in for a consultation. At the least you’ll learn that your current doctor is doing all that anyone can do; but you may also find cutting-edge people who might be on top even of as-yet-unpublished findings as to how to use multiple medications. When and if I begin to have the kind of serious pain and disability you and others here are having, I’m looking intensely for multiple opinions, because I want to be confident that I have done all I can to help myself. Even though I’m early, and only on sulfasalazine, and my main RA symptom is twisted but not yet all that painful knuckles, I’m already trying to find out the other recommended rheumies in this area. Mine is excellent, I just want to know that perhaps she is the best – or maybe someone else can put me on a better path. I believe that if I brought back an alternate scenario to my rheumy, she’d go along with it most likely, because she involves me in all of our decision steps.

I hope I’m not intruding too much, Paula, but I am such an advocate of multiple opinions that I hate to see someone with your numbers and your pain not pursuing every possible option.

I’m going to post my Rheumy’s name as a recommendation, and ask that others begin to do the same – just to see what happens. It’s perfectly legal, and as long as people are reporting accurately about negative things (perhaps without names in some instances), there are no penalties for sharing what places to stay away form.

My excellent rheumatologist here in NYC is Natalie Azar affiliated with NYU Division of Rheumatology.

Enough. Keep me up to date, and I’ll do the same. Kageyd

[Paula]

kageyd, if I wrote as eloquently as you, I would be livid if my post disappeared! Thanks so much for the information and advice; I am so new to this! If I think my Dr. is not giving me the all the information and meds I need, I will not hesitate to find a new one...I really like her staff, but she has a very "all-business" manner, seemingly devoid of concern. From the data I filled out, she should know I haven't had any prior illnesses and might need a little hand-holding. She has prescribed steroids, but I am very wary - I am in a lot of pain, but may just suck it up and wait for the Enbrel.

I am so sorry to hear of your health issues, but with your intelligence and tenacity you clearly will find the best solutions. I will post updates - 5 more days until my Enbrel arrives! My hubby is a firefighter/paramedic and working the day it arrives, so I am going to take it to his fire station for him to help me administer (because I am a coward!) :) Keep the faith, my friend!

[kageyd]

Faith is good, Paula, I'll try!! On patient records - I've simply gotten used to the fact that the best docs see SO many patients that they can't possibly remember details of our histories. They look at their own notes when we come in for what they're currently doing, and go from there, often having forgotten some history details. I do find, though, that the good docs do remember the really critical elements in our histories (the whole thing is important to us, but understandably a little less so to them). I also like to know that the docs I am seeing are incredibly busy! Who wants a doctor who is looking for patients? When possibe I try to bring my husband with me because, like most long-time couples (how about 47 years?), we tend to fill in the blank spaces that the other one leaves empty. That's easier to do when we're retired, and I'm sure would be much more difficult for your very busy spouse, yet his med training would make him an excellent listener at your appointments with your doctor. I've found that the whole family of parameds of different kinds are, with rare exception, pretty astute observers, quick to pick up on details - though of course they are not usually big into long-term treatments.

Did you read or hear that liver function tests about every 8 weeks are standard for someone on the biologics? Take care, and let me know how things go. Kageyd

[Paula]

kageyd: Well, I certainly agree doctors are busy and as such don't have a lot of time to review our records before they see us - I am always amazed when a doctor or dentist remembers me if I haven't seen them in a while! I received a nice travel kit from Enbrel today - frig pack, Sharps container, etc. They had told me if I need more supplies in the future to just call - :cool:

No, I had not read of liver tests with biologics use, and googled for it - seems like a lot of people take methotrexate in conjuction with Enbrel or other biologics, and there are side effects to methotrexate that affect the liver. I do not plan to take methotrexate. My doctor didn't mention any further blood tests - she just wants to see me around 3 weeks into taking the Enbrel.

I have to laugh at the idea of my husband going with me to appointments - as a paramedic/firefighter, he does not acknowledge serious health problems unless one is bleeding profusely. Comes with seeing a lot of hideous trauma on the streets of Dallas, I suppose.

I hope you have a wonderful weekend!!

Paula

[kageyd]

Well, Paula, we love the guys for all their good points, huh, and do our best with the rest. Pretty much the same way they feel I presume.

I've been a good "coper" over the years, and a "let's get it fixed" person, but this RA doesn't lend itself to fixing, so it's really stretchng my coping skills. And I know my Rheumy will be happy in a few weeks if there has been no deterioration (I hope!), and we both know that there is no end point. So it looks like a long stretch of crossed fingers and on with life. OK.

Didn't you love the wording of the Acai person who posted today; that got my day off to a good chuckle; let's hope they go away! At least NYC missed the disabling storm, just flurries here.

Take care. Kageyd

[dcollins30]

The biggest thing I can suggest besides pain control is exercise. It might be painful at first but if you can work through it, you will eventually find that it helps substantially.

As well as just that you can try adjusting your diet to try to accommodate your ailments. You can find a lot of information on these forums as well as on search engines.

Most of all don't worry there is plenty of support out there for you.

[Research Coordinator]

All I have to say is you all amaze me. I run a couple of Clinical Research Trails for RA and I see the impact it has on people's lives. I myself do not have RA but given that I see patients with it, I have became quite sympathetic to it.

There are a couple of Clinical Trials going right now that I am VERY excited about but then again I am a little bias as I am one of many who runs them. Don't ever give up hope....

Have a great day

[babygirl]

Yes with treatment you will gain full use of your hand. I have had RA since january of this year and it started with my left hand and had moved on to my other hand and feet and ankles and right knee. I have been doing treatment and it does flar back up in some areas or one finger or two but not as bad as it was without the treatment. I now am taking Methotrexate, and have been very sick with it, but was on medrol steriods and that was killing me and throwing my body off really bad causing me to become diabetic and taking medication for that now. No off the steriods the flar has come back but have had an increase to the meds, but it does take up to three months to see a difference in the medication. It does get a little better. In my case the doctor said I do have an extreme case. i have tried no medication, food diets and they havent worked and have heard they dont do much for help but it's always good to eat healthier diets. I hope this information helps