Dr. says I have RA . . . I am not so sure
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I was told four days ago that I have Rheumatoid Arthritis. I am choosing to get a second opinion because I don't have all of the symptoms that I read about and I am not comfortable starting DMARDS or steroids or anything until I am sure. I am seronegative, but have other CRP and ESR blood tests that are concerning to my doctor. I don't have morning stiffness that is unbearable and I am not fatigued all the time. I don't have "flu like" symptoms or a low grade fever. My VectraDA was moderate, but that is not supposed to be a diagnostic test. Although, I have no idea why all of those numbers would show up that way if it isn't RA. My doc said my RA is in very early stages and I am very lucky because my x-rays and ultrasounds don't show any damage yet, but they do show the beginning of "the red angry stuff" (he pointed to one of the pictures of RA in his office as he said that). According to one of the reports he sent home with me, I have "markedly decreased radoiocarpal joint space and soft tissue swelling" and mild - moderate synovial hypertrophy in my hand and wrist (he didn't ultrasound other areas). When I have flare ups, I take a lot of Advil to deal with it and wait for it to go away (which at the longest has taken two and a half weeks). It isn't pleasant, but I go to work, use heat and ice, and I continue to function. The flare ups have been more present since July of 2016, but there are days and even weeks at a time that I am totally fine!
I get that the word "denial" applies here in obvious ways, but I do not want to start taking massive amounts of medication that could actually make me feel worse and have a possibility of serious side effects if I am not 100% sure that RA is what I am dealing with. And yes I realize that 100% surety is not always possible with RA. I have also read START TREATMENT EARLY in bold letters on many websites and in many pamphlets because it can prevent damage and increase quality of life, which is a HUGE deal if I am actually dealing with RA.
So, my question is this: Is it possible that my rheumatologist is wrong? (oh, by the way, he did tell me he ruled out lupus, showgrens (sp?), gout, and other issues). He has 40 years of clinical experience and told me that he felt confident in his assessment and that I should be relieved that we caught it so early. He told me he didn't feel any more testing was necessary and told me to feel free to get a second opinion when I was clearly unsure about his assessment. He said given everything he has reviewed, I could go 6 months to a year before I have any damage that occurs (I don't know how he knows that?), so I have time to research and think about what I want to do.
I am a very analytical person and I have been reading and researching almost non stop since my "Diagnosis Day". I understand that everyone's situation is different, but I am looking for opinions from a community that has "been there, done that". Thank you for reading my post.
0 likes, 24 replies
EileenH tcphd
Posted
"He said given everything he has reviewed, I could go 6 months to a year before I have any damage that occurs (I don't know how he knows that?)"
At a guess from the stage of the signs they have seen in the x-rays plus your clinical history. There are changes that are seen long before the actual destruction starts - like you see flaking and softening of wood before it collapses with rot.
" I am not comfortable starting DMARDS or steroids or anything until I am sure" - but you are happily shovelling Advil/ibuprofen down which has some equally serious potential side effects. One friend was told by her GP to use it for her rheumatic pain in an illness where steroids are the only real option for successful pain relief and management - after 3 doses she was in the ER with a coffee grounds gastric bleed. Just because you can buy it OTC doesn't make it safe. It also increases the risk of cardiac and renal problems.
DMARDs do what they say on the tin: Disease Modifying AntiRheumatic Drugs. Left to its own devices you run the risk of the RA destroying your joints - and needing joint replacement surgery. If you are lucky.
tcphd EileenH
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steelctygirl tcphd
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Hi maybe yes maybe no but I would not start on medications until you are comfortable doing so. Sometimes the cure is worse than the disease. Do your homework...ask lots of questions & good luck to you
tcphd steelctygirl
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martin31040 tcphd
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Hi, medication takes time to work, that's what RA is like up and down changeable day to ay, it's all an aggravation, it took sometime for me to get diagnosed, causing some joint damage, good luck.
tcphd martin31040
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penny55083 tcphd
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Excuse my ignorance but why go and see a rheumatologist with 40 years experience when you think you can do better with Dr Google. If you don't want to know if you have RA why even ask for his opinion. It is his job to balance all the tests and give you the best advice. It doesn' t matter to him if do or don't have it he has given you his best call. It is also your choice to decide whether to medicate but you also have to take the consequences. My experience is one of decreasing medication with time because it was hit hard at the beginning. Despite obvious personal reservations.
tcphd penny55083
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penny55083 tcphd
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I was very worried when I was put on high doses of steroid. The side effects of methotrexate as described on the packet were truely scary. I put my trust in my consultant and it was well placed. With the drugs he got my symptoms down to zero then started dropping the dose. It took a few months of up and down but I can honestly say that I haven't had a flare since. I am 8 years now since diagnosis and working full time with my hands. Good luck.
barbara58180 tcphd
Posted
Mine started the same. Massive flares of flingers, toes-- no fatigue, or anything else. It was a ;little by little thing. Now, I have the whole thing-- morning stiffness, bad eye inflamation, lungs, too. They didn't start heavy duty 20 years ago. Now, I am applying for disability bedcause I am too tired, need AdderLL TO STAY AWAKE, AND CANB;T SIT OR STAND LONG.
GET A SECOND OPINIOON-- BUT IF I COULD DO IT AGAIN, I'D TAKE THE STRONGEST MEDS EARLKY. IF THEIR WRONG, YOU CAN STOP THEM. IF YOU GO INTO REMISSION- HALLAUYA!!
Things get hard, and this is no picnic, although you don't know that in the beginning.
Good Luck!
tcphd barbara58180
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frances85589 tcphd
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Not everybody has the same symptoms .I didn't think I had fibromyalgia then RA but after that I just got worse.I am still bad but medication has helped me get out of bed. Before I could hardly move covers and I came stairs on bottom.It's better to treat early.
You are entitled to get a second opinion thour. Do this if you feel better with that
tcphd frances85589
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vicki76872 tcphd
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I am also newly diagnosed and didn't hesitate to start on methotrexate after reading lots...........my symptoms are mild, I think. Pain in one foot, fingers but didn't feel particularly unwell. Although am sero positive which is different to you, all other results were normal (except low bit D).
Maybe it's not a second opinion you need but a bit of thinking time, being fully informed for me was v important.
sure you will come to the right decision re treatment.
vicki
tcphd vicki76872
Posted