Input appreciated on Pred reduction for diagnosis

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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.

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  • Posted

    Doni,

          What you described is what I have experienced on two separate occasions. I am in the second year of dealing with par for the second time. I had it from 2010 - 2013. Symptoms free and pred free for three years then got it again in 2017. My blood work never showed pmr. I have found you can reduced very rapidly from whatever dose you started at to 10mg. From 10mg down you need to reduce very slowly. I firmly believe 1/2 mg per month recuction works best.

    Dan

     

    • Posted

      Daniel, I even go slower, DSNS method works out to 52 days, then if I am feeling good start the next phase, if not stay at that dosage till I feel good. Second time at this level so I am taking my time on this round.

      Good luck. ☺️

  • Posted

    I want to thank you all again so very much for your input and helping me to come to a decision about this. It's not any easy decision, honestly - don't follow the rheumatologist's orders and live with the consequences, which could include not being their patient in a world where we wait a long time to see one, or do what your gut and research tells you is right. I have decided to compromise a bit but do mostly the latter. The doctor's rapid prednisone reduction has me down to 5mg and I am doing fine at that dose, for now. It is when I reduced myself below 5mg in the past that I would flare, and now I know better. I am going to plan to follow the 2015 protocol by The European League Against Rheumatism and the American College of Rheumatology ... for now...which will be reducing by 1 mg per month. I have an appointment in August with a different rheumatologist that came recommended to me and that I made just in case I didn't like this first one. I will be down to 2.5mg by then if all goes well. Of course, it's entirely possible that I will flare before then, but that will be more information to take to the new doctor. In the meantime, hopefully I will get the long distance consult done with Dr. Steven Gundry, who's diet I follow. I just decided that although I could try to talk things out with this current rheumatologist, really I don't want anyone with ideas so contrary to what seems like common sense to me having much to do with my care.  After belonging to this group for only a short time I can see that many of you have had harder roads than mine, at least so far. I am very fortunate to not feel "ill" or fatigued or really anything other than painful, and lower doses of Pred than many of you need to take seem to be controlling it for now. For that I am very grateful. I do wonder honestly how much of that has to do with the diet I eat. I know that diet doesn't make the problem go away, but it certainly has minimized or eliminated other inflammation issues I had in the past, and I have developed an online network of friends who have had great success with other inflammatory diseases, so it would make sense to me that this way of eating is minimizing though not eliminating my inflammation and associated pain. It is interesting that my last flare was when I was on an otherwise relaxing vacation but I ate off of the diet protocol. Who knows, but it's enough to keep me from "cheating"!  Thank you all again so much. I'll be reading and learning and thinking positive thoughts for all of you!

    • Posted

      Think positive doni, listen to your body I also believe strongly that diet plays a huge role in our recovery. Good luck on the rest of your journey. Try to smile! ☺️

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