Not entirely happy to be joining this club

[ginai54]

Hello,

Today I was diagnosed with RA. I'm 55 years old, and have a grandmother who had it, but not until she was 80- are many people my age? Reading about medications, they all seem dangerous and unpleasant- I have an appointment to go back for medication on Friday, so I don't know anything about how aggressive this is, or what stage I'm at, but I really want to avoid steroids- is that realistic? Are there any meds w/o awful side effects, and what do others find to be effective?

I'm a former dancer, and very physically active, so this is really disappointing bad news- and frightening. Any words of wisdom would be appreciated.

Thanks
Luisa

[kageyd]

Hi ginai54. Your 'welcome' is understood, none of us are happy to be here.

For reasons about which I have no clue, the regular posters here, at least half a dozen, have simply disappeared since about December 12. Maybe they all took holiday breaks but some of them posted 2 or 3 times a day, so - I miss them. Meanwhile I'm relatively new, and I intend to keep checking in pretty much daily to see if there is anywhere I might be of help.

Diagnosis comes at all ages. Two of us here, me and Mac (one of those who has disappeared) are in our 60's; I'm actually 69. My reading is that RA is very common as people age, but it is often missed on diagnosis because RA "looks like" so many other illnesses - osteoarthritis, fibromyalgia, various spinal conditions, and on and on. Many of the people who have posted 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. To you, as a dancer, something like this is really bad news.

Some words of advice:
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 almost, 99%, that nothing you ever did in your life "caused" RA. Do not be guilty.

3. I am lucky to have an excellent relatively young Rheumatologist who is on top of her field. She says 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 prednison - 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 people think it they don't.

5. Read, read, read. If you can't find URL's that help you out, let me know and I'll pass along a few of mine. This is a complicated, poorly understood diesease, and you need ACTIVE help, not just once every 6 month consultation, with your rheumatologist, especially at the beginning.

Oh, if you 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.

I'm a retired social worker to the elderly, and my "helping" genes are still very active, so feel free to post questions as you like, and if I can help I will. I'm sorry you have to be here, but RA is definitely not a death sentence, just a nuisance that you will handle - I can tell from the tone of your note that you are a fighter. Having been through a lifetime of puzzling illnesses while still being an accomplished professional, a mother, and a pretty decent spouse, I appreciate "fighters."

May it be ultimately a Happy New Year. Kageyd (pronounced cagey-dee, an old nickname from work that stuck).

[kageyd]

Sorry, I was rushed this morning, and meant to say more.

Of the three drugs you're likely to be started on, 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 you are just diagnosed and are 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 halfway there to max dose, with another few weeks to go to get to the 3000 a day that most regard as max.

The biologics (Humira, Enbrel, 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.

RA is a VERY difficult disease to treat, but with huge individual variations from awful to oh-just-so-so. I've fought through osteo (artificial hip plus many other surgeries) for 40 years, atrial fib with two ablations (now under control, may lose it at any time...), mild celiac (also under control), a cerebellar stroke just a year ago (no lasting effects, luckily), coumadin for life (and thus i can't use NSAIDs) and am very experienced at dealing with doctors and meds. I've led a grand life despite all the above, still travel a lot (retired now), and can only advocate that YOU take charge and don't 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, to others for their wisdom and experiences.

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

[ginai54]

Yesterday the rheum gave me Plaquenil? (something like that) and said that I had "mild" RA, and she'd see me in 6 weeks. I was relieved not to be put on anything stronger, but I'm wondering what others experience is with this drug, effectiveness and side effects etc.

Having read everything I can find online, and being scared witless, wondering can a person have "mild" RA for the rest of her life, or does it inevitably deteriorate? I know everyone is different, but.... have others been mild for years? Decades?

Thanks,
Ginai54

[naturelover]

Hi ginai54,

There are certain things not to say but to accept in life. One of that is having RA. My wife of young age and my sister in her mid 40 are having RA and experiencing the pain for the past one year and 3 years, respectively.

My sister is diagnosed with mild RA and at the initial stage she was administered with heavy dosages which does given relief and after sometime, as its nature, the pain use to dodge whole night and while waking up. But she took everything in her stride, no exaggeration, and she is doing well. Apart from normal course prescription, she and my wife both are very much in diet and avoid that is not good.

I would suggest you got the very detailed expert advice through Kageyd. On my part I would suggest you to go through the below link which just some time back I adviced for one of our other member too.

About RA: http://www.rheumatoidarthritis.com/diagnosing-ra/default.aspx


About Plaquenil: http://arthritis.about.com/b/2007/08/15/plaquenil-safety-10-things-you-should-know.htm

[ginai54]

I really appreciate the input and the links. I just started the medication today, and I guess we'll see what happens.

Thanks again
Ginai54

[adhityaen]

Very recently my mom also got diagnosed for RA and she's bit worried about that. I can really see the pain she is going through. Hope, she and other members does get some relief from the pain.