In the process of diagnosis

[Jilly]

Hi, I'm Jilly. I am 27 years old, a mother of three young children, wife of a US Marine, and professional photographer.
I am in the process of trying to find out what has been going on with me. My primary care doctor (who is excellent, btw) and I both think I likely have RA, but am in the early stages of it.
I have had a rough last few weeks. I started having some pain/aches in my right index finger almost a month ago. It wasn't anything major, but after a week without it getting better, I decided I better see the doc about it. He sent me home with rx nsaids and told me to come back in a week whether I felt better or not. That week is when things really started to go bad. By the time I went back to see the doctor, practically all of my fingers were hurting on both hands, both wrists too, and my right shoulder was a little bit too. I knew something was up - and so did my doctor.
He ordered some basic bloodwork ( CBC, sed rate, RF, c-reactive protein, and ANA) at that appointment and wanted me back in a week again.
The week that followed was shear agony. I know I don't have to explain it to all of you, but this has been pain like I never knew existed. And the unrelenting nature if it - I think that's what makes it the worst. It just doesn't stop.
Anyway, I went back for my follow-up yesterday and all the bloodwork was in the normal range, but at the very top limits of normal. That's frustrating because i was really hoping for a smoking gun, so to speak. But it did't really change anything. My primary doc still thinks it's RA. And at the very least, he knows it is not something HE can manage, so he has referred me to a rheumatologist. I'll find out when that appointment will be in a few days.
In the meantime, I'm kind of in limbo. The only thing my primary could do was try to ease the pain until I can see the specialist. So I am currently only taking a pain reliever and anti-inflammatory.
I am on a crash course trying to learn everything I can about this disease. Until a few weeks ago, I had never really even heard of it other than seeing it mentioned in commercials for meds on tv. I have no family history of it, and I don't know anyone who has it either. So I am really looking for information and others who understand what I'm going through. I'm hoping this message board will be a good place to start.

[kageyd]

Welcome, and here's a start, which I try to provide to all newcomers. Sorry you're here!!! But glad you're seeking help, you'll need it. Diagnosis comes at all ages. 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.

First of all, READ, as you've been doing. 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. Also, the Arthritis Foundation has many excellent pages about RA. The Johns Hopkins site is also very good.

Some words of advice to get you started:

1. You’re already on the right track away from GP to a Rheumatologist. Do everything in your power to get in the hands of a Recommended Rheumatologist if you have any questions about the one you will see (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% certain 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. Genes, yes, but you can’t help those. 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 that slow down 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. Also, some people are judged advanced enough at diagnosis to be started on one of the biologics, like Enbrel for instance; I find that that is not common, but it does happen. And increasingly the biologics are being used in combination with methotrexate or others.

4. You can’at rely just on 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. At least 20% of RA sufferers test negative. In general, the higher your initial RA factor and the other blood measures 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). Many people start on methotrexate. Because your pain is so severe, you may be started on Enbrel or one of the other biologics. Read here to find out how things are working for others. Paula is just starting on Enbrel in a few days; she and Star73 are both relatively new here and feel very much in your shoes.

8. The biologics (Humira, Enbrel, Acembra, others...) are more likely to have side effects that tend to be more serious and, when they do occur, tend to show up several years into their use at which point you may have some very serious illnesses. Yet the disease itself can be awful, so the danger of side effects may be well worth the reduction in the inflammation and pain.

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. People are here for you. Kageyd

[star73]

hey Jilly! Sorry you are having these problems but glad to meet you! You might ask your primary doc for a steroid pack...called a Medrol Dose Pack...that will relieve your symptoms for a little while and it also helps to know if you have inflammation. Which tests did show something?

My RA tests (RF factor and CCP) were negative. So was my ANA. My inflammation tests (ESR and CRP) are elevated. You can still be diagnosed with RA without having the "smoking gun" but I know how frustrating that is. I dont want to overwhelm you right now with information and I'm glad you are seeing a rheumatologist. Hope to hear back from you! :)

[Jilly]

I did take a steroid pack after the second visit (start it right after they took my blood). It was a 6 day pack and it WAS medrol, lol. It did help for about 2-3 days.

My RF titer was on the borderline of being positive and my sed rate was slightly high. I'm not sure about the other tests as those are they only two he talked about specifically because they were so close to being positive, yk?

I have a blog where I've been keeping track of my symptoms and medications. It's nothing special, I know, but I'm hoping that having a written record of when and how things happen will help me and my doctors. This is it: cantwrite-canblog.blogspot.com (http://cantwrite-canblog.blogspot.com/)

Thank you both for welcoming me! I know I'm not posting a whole lot right now, but believe me, I am reading like there's no tomorrow! There's a lot of good information here and I am trying to absorb as much as I can as fast as I can.

Once I feel like I have a better handle on this disease and know a little bit more about it, I'll be a more regular poster.

[Paula]

Welcome, Jilly! Well, as both kageyd and star73 have mentioned, RA tests are not always conclusive - I would guess your rheumatologist will want to do xrays and also the anti-CCP RA test. I certainly understand your frustration - my RA onset was only in the past few months as far as pain/stiffness, but I tested positive for both RA tests and xrays show wrist bone erosion already. I am starting Enbrel injections in a couple of days...my doctor prescribed steroids, but I am squeamish about the weight gain side effect, so I am just dealing with the pain for now unless it gets worse.

I wish you much luck! Education on the disease and medications has been enormously helpful for me, and this board has some very intelligent folks! Look forward to hearing from you in the future, and I will read your blog!

Paula

[juice67]

Hi everyone -

I am a 43 year old working mom - I have an almost-5-year-old who just started kindergarten! This past summer I suddenly became very ill with high fevers in excess of 103 daily - for 5 days, full body rash, swollen painful joints, vasculitis, etc - ended up in the ER and prescribed a 6 day medrol pack. By day 5, I was in excruciating pain in all of my joints - I could not move at all. I was tested for everything from Parvo to Mono to Lupus and RA - all bloodwork was normal. I was referred to a rheumatologist who prescribed 60 mg of prednisone - tapering over 5 weeks to 0 - which was 8 weeks ago. I still have pain most of my joints - and swelling after 12 weeks, and my rheumatologist is now thinking I have seronegative RA. I was prescribed Naproxen - after a week my hair started falling out, and there was really no improvement in my symptoms. I was prescribed Nabumetome (another NSAID), and my hair is still falling out in clumps. My rheumatologist now believes that I either had a virus that triggered the RA, or the "virus" was actually the RA coming on like gangbusters - I would be only the 2nd patient she has ever had whose RA symptoms "started" with high fever and systemic body rash. SHe has given me until November 1 (6 weeks) for my symptoms to resolve - at that point she wants me to go on Methotrexate...which I am VERY nervous about! I am very frustrated by the lack of concrete blood results, and the intermittent nature of my pain - it makes me feel crazy! And then, I go to stand up after sitting for a while, and it all comes back to me - OW! I have been doing a lot of reading, and have been looking for a forum like this - thank you! Jessica

[star73]

Hi Jessica! I don't come here hardly at all anymore as there are great Facebook pages with TONS of people with RA who all post and support each other...so jump over there ...look up RA chicks..it's great! I do also want to suggest you go to www.roadback.org It sounds to me like you have an infectious cause of your symptoms and the folks there can help you. There is lots of information there to read also. Many people there take antibiotics for their RA. It's just a suggestion. But, with your symptoms, you definitely have something going on. Most rheumatologists won't look at the infectious cause. Good luck! I hope to see ya over on RA Chicks :)

[juice67]

Star73, thank you very much for the advice - and the link! I had never heard of the bacterial component in RA, and I will def check it out - it sounds like it could be very helpful! I will check out Facebook! Thank you!!! Jessica