Had the appointment today with my new rheumy
Posted , 11 users are following.
Had an interesting 1st appointment with my new rheumy today. My actual time spent with him for exam and discussion was 75 minutes! I don't think I've spent that much time with a doctor in a years time! I saw my original rheumy 4 times over 7 months and don't think I spent a total of 30 minutes with him. This rural hospital/clinic had 3 rheumies when I went for my 1st appointment last year. Now he is the only one and he will be retiring sometime next year at age 71. They have a new rheumy starting the 1st of the year but I'm wondering if I should be looking for a different clinic with better staff stability.
Got the full exam by him and wanted the whole medical story how and why I'm being treated for PMR. When I got to the point of mentioning that my fingers and toes got very swollen during my 2nd flare he seemed to fixate on that and said that it was more likely that I had Rheumatoid Arthritis as symptoms were similar to PMR. I said the joints in hands and feet were swollen for a while but never painful and his answer was well, that can happen sometimes with RA. I like to think I'm open minded and even today did try, but he seemed to really be bent on proving that the original diagnosis was wrong and I had Rheumatoid Arthritis instead, even to the point of saying that hopefully I'd have a flare up and to contact him so he could examine me without the prednisone having kept the pain and swelling down! Also wanted to take fluid from both my knees so he could look for crystals that would support the idea of RA. I told him to forget that one. I could go on and on, but the best I can say is that it was a rather surreal experience. I do think he's extremely smart but he probably should be after 43 years in the profession. I know rheumatoid arthritis could be a possibility but I'd think I would have been screaming from joint pain and swelling. I've had some but it's been the shoulders, biceps and thighs that have been the biggest sources of the crippling pain.
I think I know what I'm going to do but I'll ask everyone's opinion on his reduction schedule anyway. I'm at 15 mg of pred currently (10 mg @ 6 am, 5 mg @ 6 pm). It didn't take me much to convince him that I should drop 1 mg at a time. At first he said 2.5 mg. He wants me dropping 1 mg every 2 weeks. Seems pretty fast to me. Thoughts?? I was thinking more like double the length - 4 weeks. I got the prescription for the 1 mg tabs - that's the main thing. I suppose I could try dropping to 14 and to 13 in 2 week increments but I'm very leery about going that quickly when I get close to 10 mg. One more thing - he wants me dropping the 1 mg each time from my evening dose, so my split dose would go 10/4, 10/3, 10/2, 10/1 and down to just 10 mg in the morning 5 days before my next appointment in late November. I tried to explain that taking just morning dose didn't work for me but he just blew me off. What do you think - alternate the reduction between morning and evening? Right now I'm trusting the opinions here wayyyy more.
Sorry to be long winded again. Can't seem to help myself! I do really appreciate this site and everyone's comments.
0 likes, 8 replies
TheRaven
Posted
celia14153 TheRaven
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This tapering malarkey is trial and error with huge emphasis on slow slow slow. You can only judge by your own pain factor and your body's responses not someone else's opinion however learned it may be. Others will come in on this but it seems to me that we are educating the medical profession all over the world- 🙂- and the most important thing is to listen to your body, adjust as suits you and report back the state of play in November. Certainly worth getting a second opinion about RA. And did he explain why your polymyalgia symptoms responded to Pred? Your posts are really helpful as is all the sharing we do on here. Be as long winded as you like. 😀
EileenH TheRaven
Posted
Hum - sounds seriously out of date - there is work that shows hands and feet can be involved in PMR (from Leeds) and that RSP3E syndrome can also parallel PMR and that causes peripheral oedema as you describe. It is also described as a diseease of the elderly, just like PMR and GCA. It responds to pred, returning in some patients as the dose is reduced. It also responds nicely to tocilizumab it seems - since it is also caused by IL-6, the same cytokine that is implicated in GCA and PMR. Which to me says it is all very closely related, I suspect they aren't separate conditions but part of a spectrum.
Treatment of a patient with remitting seronegative, symmetrical synovitis with pitting oedema with a humanized anti-interleukin-6 receptor antibody, tocilizumab Toshio Tanaka et al
The RF is fairly meaningless in that you can have a normal level and still have rheumatoid disease - much the same as ESR/CRP in PMR and GCA - and raised RF but be perfectly healthy although if it is significantly raised you are probably at a higher risk of developing RA at some later date.
His reduction schedule MIGHT work for another couple of mg - but every 2 weeks is too fast, you aren't at a new lower dose long enough to know if it is still enough. And every mg you go down, the greater the % drop - you've been here long enough to know that part of the story.
But my diagnosis? He's one of a considerable number of doctors who think it is beneath them to have to deal with PMR so want it to be anything but.
mark9992 EileenH
Posted
" It also responds nicely to tocilizumab it seems - since it is also caused by IL-6, the same cytokine that is implicated in GCA and PMR. Which to me says it is all very closely related, I suspect they aren't separate conditions but part of a spectrum."
That is the sort of out of the box thinking that I wish more doctors were capable of. As it is, most just shove the pill at you, give you a dose schedule and act as though they must have said something brilliant because it came out of their mouths.
Lelee TheRaven
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daniel08939 TheRaven
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Michdonn TheRaven
Posted
TheRaven, I tapering in the same range as you, I am using a modified DSNS method and have been since tapering from 20 mg. I think I will continue using DSNS. Last time I just reduce a 1 mg every couple weeks till I flared, so I will not be going that again. Give the DSNS method a try.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
mark9992 TheRaven
Posted
Raven, I suppose the doctor could be right, but when he says he hopes you have a flare and then gives you a reduction schedule that seems calculated to do just that he does seem to be trying very hard to fit you into his diagnosis, and at a considerable cost in pain to you.
The diagnosis of PMR seems to be difficult and could be in error in either direction. How many people on this forum think they have PMR, but have something else? How many on the RA forum have PMR but don't know it, and what if some of us have both or something else entirely?
Eileen pointed out that the conditions may lie along a spectrum and be strongly related. I think that's an important point. Even if your doctor is over opinionated he could even be right by accident! Hard as it might be, I'd suggest you get a second opinion.
Mark