Input appreciated on Pred reduction for diagnosis
Posted , 20 users are following.
I am looking for input to help me with a decision that I believe may be coming up. I have not been officially diagnosed yet, but I am educated and informed and believe strongly that I am dealing with PMR. I am an otherwise healthy and active 63 year old female who eats an anti-inflammatory diet that in many cases has eliminated signs of autoimmune disease in other patients/followers (The Plant Paradox). On December 1st (almost 5 months ago) I woke up with significant pain in my hips and thighs, different from anything I have ever experienced. I was a bit baffled, but thought I may have stressed my back at an exercise class. I do have a pretty ugly looking spine with bulging discs, but this is nothing new and I have managed it well and remained very active. Shortly after I developed excruciating pain in my shoulders and upper arms, to the point where I could barely lift my left arm (right was better but still sore) and even the weight of a blanket on it made me unable to move. It literally took me 15 minutes to figure out how to get out of bed. I was seeing a chiropractor who convinced me it was all related to my back. A few weeks into it he and the GP convinced me to try some high dose Ibuprofen, which did virtually nothing for me. Still thinking it was my back, I had an MRI and xray of my shoulders, nothing remarkable, the same messed up spine and mild OA in the shoulder, which would be totally expected in a 63 year old body. I was encouraged to do epidural steroids but by this time I was questioning whether this was my spine or something else, and I opted to do systemic oral steroids (30 mg Prednisone) instead. Guess what, a miracle happened and within 48 hours I was completely normal. I continued with the steroids, trying to reduce, and if the dose got too low my symptoms would reoccur, sometimes in different locations. In February I had the opportunity to talk to a neurologist acquaintance who stated unequivocally that I was describing an autoimmune condition and not my back. This made total sense to me as I was already reaching that conclusion myself. I made an appointment with a rheumatologist but it takes a while to get in. In the meantime I found information on PMR and I seem to check all of the boxes. I had not studied the tapering protocol, was just trying to get as low on the Prednisone as I could, but again every time I would drop too fast or get too low I would relapse. 10 days ago I had my appointment with the rheumatologist. She was very non-committal, as is expected, pulled a lot of blood but the fact that I was on Prednisone was obviously going to alter some results. All of that lab work came back normal - Rheumatoid factor, lyme disease, CRP and Sed rate, but I was on 15mg Pred/day. Rheumatologist advised me to get off the Prednisone completely for 2 weeks and then repeat the lab work "to get a diagnosis", and asked me to reduce Pred by 2.5mg every 3 days until off, then wait two weeks. I am skeptical, as every time I have reduced it I have flared, not a surprise if it's PMR. I am trying to be a cooperative patient and follow her instructions, but I am concerned. Already I am getting stiffer and more sore and have just dropped to 5mg. The idea of being off completely and barely able to function sounds counterproductive. It honestly doesn't sound smart to me to allow a giant flare to happen just to look at lab numbers. The last pain locations have been my wrists and knees, which I know are not typical, and shoulders flare as well until I jump on the pain. These areas were the last to cause problems. Previously it was thighs, hips and shoulders. Rheumatologist said that the fact that my wrists and knees were sore prior to a higher dose of Pred made PMR unlikely, but that is not what I am finding in my research. So my question is...do you think it's reasonable to allow a major flare just to look at some numbers? I have read that 20% of people with PMR do not have high sed rates and CPR. I don't particularly like this rheumatologist but am trying to be cooperative. If I flare like I am suspicious that I may, I am considering raising my Pred dose back up and waiting the several months it will take to get in with someone different. I hope I haven't rambled too much and sure appreciate the input. By the way, Prednisone supply is not a problem for me.
0 likes, 45 replies
BettyE doni89057
Posted
Well I'm the first to reply but I'll stick my neck out and say that no I do not think it is reasonable. With all the symptoms you have described it seems a bit cavalier to say it can't be PMR because you have wrist and knee pain. Any vet. will tell you to always be aware that two things can be going on at the same time.
Obviously you are in the USA and I'm ignorant how your system works but some of us in UK, me included, have been managed by our GP. From what you say I should think if your Primary Care doctor ( have I got that right? ) can manage you and give the necessary pred. then that might be a better bet.
Others will be along with their input, I'm sure. Best of luck.
doni89057 BettyE
Posted
My GP is an idiot. I am in the USA and I find GPs reluctant to take responsibility for anything much beyond a common cold. They immediately refer everything and leave us hanging. At least that has been my experience. I know that there are good GPs out there, I just haven't found them. I have access to Pred so that is not an issue, but of course I want to do what is best for my body. Thanks so much for the input.
Fizzyjam doni89057
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celia14153 doni89057
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doni89057 celia14153
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What other testing should I insist on doing, or what other things are on the differential diagnosis? The rheumatoid factor that was done was for RA (negative) and Lyme disease testing was also negative. To me, this just seems like a no brainer, but I am trying to be cooperative. I am not always cooperative (ha ha) because I often found that I have researched and know more than providers for many things. Rheumatologist wanted to pull thyroid tests, which I agree should be looked at for current status, but I was filling a cancellation appointment to get in sooner and I take Biotin, which can mess with thyroid lab results. Ideally I would have quit the Biotin for 3 days prior to lab testing. I told her I was on Biotin and shouldn't we do thyroid with the recheck, so I could come off. She said Biotin doesn't affect thyroid. I said yes, it does. She left the room, was gone 10 minutes and then came back and said I was right. Oh my...
ptolemy doni89057
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doni89057 ptolemy
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Yes, my adrenals are part of my concern. We have already played up and down with dose already. I am not in a LOT of pain, yet....yet being the operative word, and why I was reaching out for input before I needed to make a quick decision on my own. It just doesn't make sense to me to come off completely, for weeks no less, just to hopefully get a number on a lab sheet. We all know that this isn't diagnosed entirely by lab work. The acute presentation, the shoulder and hip involvement at the beginning, the rapid response to prednisone, my age...it all adds up to PMR to me. Rheumatoid factor was negative, and although that doesn't rule out RA completely, that in association with the presentation and response to Pred sure seems to minimize RA as a likely diagnosis. Rheumatologist seemed to be leaning towards OA, of all ridiculous things. Yes, I have some OA, like anyone who lives to be 63, but it was a total non-issue in my life until that dreaded day that I woke up with this stuff. I am almost normal at 15mg of Pred, sure hate to mess all that up.
Danrower doni89057
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Actually, knees, wrists and elbows can also be affected by a PMR sister, RS3PE. You can google it. The treatment is the same (low dose pred). It's what I have, and more common in males. Find a competent rheumy, I has to go through 3 to find one right for me. Here in the states, this is not a necessarily "well known condition".
good luck
doni89057 Danrower
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ClaireJG Danrower
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doni89057 ClaireJG
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Yeah....I may be starting down that road. There is nothing that a doctor hates more than a patient who challenges their thoughts or won't comply with their requests. I understand that, and I don't mean to be obstinate. This just makes no sense to me. I am wondering if it is worthwhile to try to have a discussion with her about this (again) or just do my own thing until August, when I have an appointment scheduled with a different rheumatologist that a friend uses and recommended.
doni89057
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You are all so wonderful and helpful. I appreciate your input, and any further thoughts you have. At least you have validated that I am not crazy to consider coming off completely as potentially inappropriate. This is probably a dumb question, but does anyone have any idea how long it takes for a flare to influence lab tests like CRP and sed rate? The thing is, maybe it won't. I might just be negative on those things. I do know that the diet that I eat does tend to produce really low CRPs in people, but it also tends to reduce inflammation overall so that is likely why. I am wondering how much more miserable I might be if I wasn't eating this way. :P
Michdonn doni89057
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doni89057 Michdonn
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Thank you. I'm sorry too ha ha. That said, I guess there are worse things and I appear to be fortunate in that I figured this out quickly and got on Prednisone with only a couple of months of significant suffering. Fighting with the doctor really doesn't help and adds to my stress for sure. I am lucky that I am getting a long distance consult with the doctor (cardiologist, heart transplant surgeon, working in nutrition for years now) that wrote the best selling book/way of eating that I follow. He is currently presenting his paper/research on reducing inflammation markers and eliminating drugs in autoimmune patients all over the US. Now, this showed up while I was eating that way so I am not expecting a miracle, but I know a number of people personally with autoimmune diseases that he has "fixed", so his input could be valuable. I am leaning towards holding my status quo and using the DSNS while waiting for that consult and the appointment in August with Rheumy #2. Again, I really appreciate everyone's input.
Michdonn doni89057
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doni89057 Michdonn
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I've been eating The Plant Paradox diet for almost 2 years now. It has definitely been life altering for the better. Totally eliminated my high blood pressure, cholesterol issues and all signs of OA. My lab work looks stunning compared to most people. Same here...I wouldn't think of eating any other way. I truly believe I would be in a lot worse shape if I wasn't following that protocol. I am interested in seeing how the doctor tweaks my diet when I get the consult after his extensive blood work. He looks at a lot of markers that other doctors don't even understand. Thanks for the support.
Michdonn doni89057
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