How will I know I am remission? I have significant pain each am… and am tapering 1 mg per month…
Would remission mean I have no pain?
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Absolutely I think my PMR was related to stress. I lost my mother, my brother and my son, at 51 years, was diagnosed with early onset of Alzheimer’s. My son and I have always had a close relationship. In October 2021 he informed me he doesn’t want any part of his family. No Mother’s Day card, no birthday card, and now this is the 2nd year not hearing him at Christmas. My heart is broken. I also have been diagnosed with GCA.
My understanding is once you’ve been diagnosed with PMR you will always have it but it does go into remission and can flare at a later time. I’ve had 2 occurrences 6 years apart and it has been in remission for 4 years now.
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Thanks John. I am newly diagnosed with PMR and so grateful to have found this support group blog. How long did each of your occurrences last?
My first occurrence lasted 3-1/2 years. 6 years after it went into remission it came back and I was able to taper off of prednisone in about a year and a half.
I have an upcoming rheumatology visit. I need to decide where I want to go from here.
I don't have much to complain about in terms of PMR symptoms while taking weekly Actemra injections. I was allowed to try monthly infusions which might work better than Actemra injections.
MAYBE, I don't need Actemra anymore but my rheumatologist will probably insist that I need something. How does one know when remission has been achieved? The only definition of remission of PMR that I have heard is when PMR "burns itself out" and you don't need prednisone anymore.
I have been off prednisone for 3 years. My rheumatologist has insised that I'm "better off" on Actemra and I should stay away from prednisone. No argument from me and I agree wholeheartedly.
My dilemma is that I don't want to take Actemra forever either. I don't seem to have any side effects from Actemra. I still have residual side effects from long term prednisone use for more than 12 years. I have no desire to go back on prednisone again.
I liked monthly Actemra infusions better than weekly Actemra injections. There was something about an infusion every month that made me feel like there was nothing wrong for an entire month. I probably could increase the time between injections but my rheumatologist doesn't want me to go any longer than 10 days.
There are some other things to consider. My ophthalmologist would rather I take Humira (TNF inhibitor) for recurring uveitis. My ophthalmologist thinks Actemra isn't optimal treatment for uveitis but Actemra "seems to be working" for the time being. My rheumatologist just says it would be impossible to adequately treat multiple autoimmune problems.
I have no idea where to go from here. I'm tempted to say I want to try going without any medications just to see what happens. Anyone have any suggestions?
At this point, I can see why you don’t stop the Actemra. I have gone back-and-forth with prednisone and Actemra , but never completely left prednisone. I am also talking 12 years, but most of that was with the GCA. I would definitely try getting off Actemra. You can always go back on and I prefer the shots because you can spend them out and use this medicine and taper that way.
Are you currently taking both Actemra and prednisone?
I took prednisone daily for 12 years for PMR. After Actemra was started, it took me about a year before I was able to get completely off prednisone the first time. It was probably more of an adrenal issue rather than a PMR issue because pain wasn't too much of a problem after Actemra was tried.
When Actemra was being used for Covid patients, I was unable to get any Actemra injections for a period of about six months. I needed to take 10 mg of prednisone and Humira but the pain still wasn't well controlled. When Actemra was restarted, I was able to taper off prednisone again in a couple of months the second time.
My rheumatologist doesn't want me off Actemra if I that will mean that I would need to take prednisone again. I have now taken Actemra for about 4 years except for a couple of interruptions.
I’m interested to know if you have experienced any serious side effect from Actemra. Our Rheumatologist wants my husband to start monthly infusions. He has PMR & rheumatoid factor. He has been on Prednisone for 4 years.
Hi @dadcue, That's a great question. My own personal opinion is you will know you are in remission when you have minimum to no pain when you wake up in the morning besides the normal aches and pains of old age (that's me!) and you are no longer taking medications for treating PMR. You will notice that we have moved your post to an existing discussion where others are asking the same question here:
— PMR – How will I know I am in remission?: https://connect.mayoclinic.org/discussion/pmr-8/.
You might want to run your question by your rheumatologist but it is a great question to ask.
My PMR began last June. I was taking 20 mg (4 pills) of Prednisone. I’m now down to 1/2 pill which wasn’t working too well. I’m supposed to stop at the end of this month. I’m now taking MSM which definitely helps the pain. I’m a vegetarian and I exercise almost every day. This list serve has been a great help to me.
I haven't experienced any side effects from Actemra. In fact, I would say the side effects from taking prednisone have all improved. Prednisone side effects were the main reason why my rheumatologist wanted me to try Actemra with the hope tapering off prednisone. I'm very pleased about being off prednisone after taking it daily for more than 12 years.
I also have a type inflammatory arthritis that was negative for rheumatoid factor (RF negative). If your husband was diagnosed with PMR and he was also RF positive, then that suggests he may have more than one autoimmune disorder.
My experience with multiple autoimmune disorders made it very difficult for me to taper off prednisone. Fortunately, Actemra seems to work well for all of my problems. I think Actemra would be something worth trying if a rheumatologist recommends it. Having more than one autoimmune problem makes it difficult to find a treatment that works for everything.
I wish you and your husband well.
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