Well, my doctor is back to saying I most likely do have PMR. I have had flairs which prednisone has handled. Now he wants to put me on Cimzia to try and get me off the prednisone. In what I have read, 10 mg of prednisone is not considered a high dose. When you look at the side affects of the other drugs, they seem to me to be MUCH worse than just continuing to take the prednisone. Just trying to be logical about this. My bones are very good, I am 67 years old and have always been very active. On 10 mg of prednisone for the last week, I feel great. He wants me to drop down starting next week by 1mg a week. I was at 4 a week ago but had a major flair.
Would love to hear other thoughts.
Thank you !
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Plains
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If your diagnosis is PMR then I would want to know why they want to use Cimzia. It is an anti-TNF drug - a group which is expressly warned against in the 2015 Recommendations for the management of PMR. There is no evidence that TNF-alpha is implicated in PMR and the potential risks are felt to outweigh the benefits.
Thank you. I think before I introduce any other drug I want a diagnosis for sure it is PMR. He has changed his diagnosis twice. I have been having some heady feelings and soreness in one of my ears. Had severe neck pain for a week. I want him to check to see if I have developed GCA. Time for a second opinion…. I think. Very frustrating. Thank you again! I did read the article too..
Unfortunately, there is next to no way of getting a certain diagnosis of PMR - except possibly a PET-CT done when the patient isn't on any pred. But you are past that stage. PMR tends to be a clinical diagnosis having ruled out all the other alternatives. GCA isn't much simpler unless you are "luck"y enough to get a positive temporal artery biopsy which is 100% certain - but a negative is NOT certainty it isn't GCA for various reasons, not least it forms what are called skip lesions and doesn't affect all arteries or evenly.
However - what concerns me most is that a doctor isn't sure, is claiming it is PMR and then suggests a drug that is expressly mentioned in guidelines as not appropriate.
Quite frankly if you were at 4mg a day a week ago you can probably drop back to say 5mg pretty quickly. In my opinion I do not understand why your doctor wants to add another drug to try and get you off pred with all the extra side effects at such a low dose. Choosing what seems an incorrect drug is even worse. I have worked with the drug industry for over thirty years and I sometimes have had to tell my doctor that they have made a mistake in their prescribing to me. They just sat “oh errr”!
Under 7 is generally considered a low enough dose to not cause side effects, but the lower the better. The concern is also a lifetime cumulative amount of prednisone taken. So the lowest dose possible is still important. But you don’t want to relentlessly push to zero either as it causes more flares and more time at higher doses. Since you have only been at 10 for a week, I would also try to quickly drop back to 5 before you get accustomed to 10 and the taper becomes a slower challenge. If you can tolerate the 5, stay there a bit then return to a slow taper, even 1/2mg if necessary. I am approaching 3 years since my diagnosis and am finally down to 2mg. There were many times I was stuck at a certain dose for quite a while but at 2, my doctor is okay if this becomes a maintenance dose. I would not have been comfortable calling 10 or 7 a maintenance dose. That said, I would personally refuse biologics if I could get under 7 as the one alternative I did try messed with my liver function. I almost always have the worst/rare reactions to drugs so I try to avoid anything not absolutely necessary.
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