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Posts (22)

Thu, May 21 9:17am · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Fatigue is one of the components of PMR. I have been dealing with PMR for over three years. I am one of the unfortunates who has not gone into remission. I am currently taking 7.5 mgs of prednisone daily and am titrating at .5 mg per month. I am still hoping for remission.

Oct 22, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

I remain positive because my treatment for PMR is working–not as quickly as I wanted, but it is working. My positivity is reinforced every day I am able to stand up, walk, and use my arms normally. With treatment, I can do all those things I once did but nor for as long as I once did them. For every four hours of energy expended, I may have to rest four hours. But . . . I am still as active as I can be, and I am mobile. Joy!

It seems to me that staying positive depends greatly upon self-talk, ie what we tell ourselves. Negative self-talk is extremely debilitating. I try to be aware of when I allow negative thoughts to enter my awareness, and I review the progress I have made.

In my view, knowledge is power. That is one reason I joined this group. There is no substitute for firsthand experience, and I have gotten a lot of insight and encouragement from reading others' experiences with autoimmune diseases. I constantly research autoimmune diseases because that is a fertile area of study, and the latest findings are often unknown to local doctors. I have, in the previous statements in this paragraph, laid the foundation for this statement: I do not waste my time with doctors who show little or no interest in serving a patient who has an issue that requires thinking outside the box. That is a lesson I learned the hard way.

By the way, in addition to Mayo, I have used my state's university hospital because they are, generally, on top of the latest medical practices. For me, making the extra effort to get access to more specialized and knowledgeable medical advice, has paid off.

Do I wish I could do all the things I did three years ago? You bet! Do I mope about it? No. I decided to make the best of each day.

Oct 21, 2019 · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

I have PMR, but I was stuck in the loop you are in for a long, long time. Your post has elicited some wonderful advice. I can only tell you what worked for me. After consulting four rheumatologists, three orthopedists, and my PCP, I referred myself to Mayo Clinic. I found that the doctor at Mayo had far more knowledge–in part because she had treated a far greater number of patients with PMR. My diagnosis had been complicated by the fact that my symptoms were atypical for PMR. The doctors I had seen prior to going to Mayo, in my opinion, knew only what they had covered in their autoimmune class–if there is such a thing. Any deviation from the typical symptoms had no meaning for them.

Whatever your disease, I suspect that your symptoms are atypical which makes a hard to diagnose disease even more difficult to diagnose.

As a member of this group, I have observed a common thread among the membership. It appears to me that the vast majority advocate becoming a strong self-advocate and engaging in extensive research. I had a good idea of what my problem was before I went to Mayo because of the research I had done. That boosted my confidence in my ability to read my body.

Never had I ever thought that I would seek treatment at an out-of-state clinic for anything. The realization my life would have no quality if I remained in the loop motivated me to begin looking at reputable medical centers that could possibly help diagnose my problem. I had to travel by air to the clinic and had to stay in a local hotel for about three or four days. It was worth every penny I invested.

Oct 15, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Knowing that some patients never go into remission is not a comforting thought, but it is a fact.

Remaining active is a key component in treatment of this disease. My challenge has been to determine the level of activity my body will allow. Too much activity seems to trigger the PMR pain for a few days.

Accepting the fatigue component of PMR is a great challenge for me as well.

Accepting that my body will never return to its pre-PMR state has been difficult, but I am getting there.

Oct 12, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Sorry. I did not note the date of your post.

Oct 12, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

I have had PMR for three years. I have consulted four rheumatologists and three orthopedists in addition to my PCP. My initial treatment was 30 mg of prednisone. It was miraculous. Within about 4-5 hours I was pain free. When I had reduced the dosage to about 10 msg, the pain began returning. My doctor thought the PMR was in remission because all of the lab work was normal after the first four months torso. Because the pain worsened with each reduction in prednisone, I finally sought and obtained an appointment at the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% will have normal lab work. Prednisone was again prescribed and the pain went away.

After my visit to Mayo, I found it took 12.5 mgs of prednisone to alleviate the pain. Unfortunately, I have been able to reduce it to only 11.5 mgs, but my goal is to keep reducing it until it is much lower than 11.5 mgs. This I can tell you, one's body responds to as little as a .5 mg dosage. I tried 11 mgs for one month and had to move back to 11.5 mgs. I will wait a month and then try again to lower the dosage to 11 mgs.

John Bishop mentioned in his posts that it took him a year of moving between 1 mg and 1/2 mg before he finally got off prednisone. Knowing that .5 mg dosage could impact my body was most helpful. It has given me hope to keep trying.

I will tell you that the doctor at Mayo told me that she had some patients who had not been able to reduce their dosage of prednisone to less than 7 mgs.

I, too, am concerned about long-term use of prednisone, but I do like being able to stand, walk, and use my arms.

FYI, I did ask about methotrexate, and she told me that it had not been effective in her treatment of PMR. So . . . I am taking the prednisone and fighting all of its side-effects.

Oct 12, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

I have been on prednisone for three years–I am sorry to say. My PMR included neck, shoulders, biceps, hips, and thighs before a diagnosis was made. I, too, was initially treated with a 30 mg dosage of prednisone. Like, John, my response to the prednisone was a miracle. I was pain free within four or five hours. By the time I had tapered to about 10 mg, the symptoms began returning. I recognized the symptoms for what they were. My doctor, however, thought the PMR was in remission because all of the lab work was normal. This cycle lasted for a year and until I was taking 1 mg of prednisone daily.

In desperation, I went to the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% of the patients will have normal lab work. I began taking prednisone again, and the pain went away.

While I am not a medical professional, the fact that pain is now in your hips and legs suggests that you are in a PMR flair. You might explore this with your physician.

FYI, I hate prednisone's side-effects. For me mobility and quality of life have been important enough to continue the prednisone and fight the side effects. I think I have had every side-effect prednisone has to offer. It is no fun. This decision is, of course, an individual and personal decision.

Good luck to you as you seek a solution to your health problem.

Jul 22, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

I was told at the Mayo Clinic in Jacksonville, FL, that about 40% of PMR patients never go into remission. Unfortunately, at present I am one of them. Further, I learned that about 10% of PMR patients will not have elevated lab results for inflammation. Unfortunately, I am in that category as well. Currently, I am on 12 mg of prednisone. The pain came back (difficulty in standing especially) when the dosage was dropped to 11 mg. I went back to the 12 mg, and I will next try dropping to 11.5 mg for a month and see if I can then drop to 11 mg. At this point, a dosage of 5 mg is looking good! Hope springs eternal . . .