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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The biologic that worked for me was Actemra. Unfortunately, Actemra isn't FDA approved for the treatment of PMR. However, it is approved for the treatment of GCA and a few other autoimmune disorders including RA. I don't have GCA but I have another type inflammatory arthritis along with PMR. My rheumatologist thought Actemra might work for my case of chronic PMR and inflammatory arthritis. He just thought if Actemra works for GCA and RA then it might work for PMR and my type of inflammatory arthritis..
I'm glad my rheumatologist went to the trouble of submitting a special request to get Actemra approved for me. The request was approved.
There were other factors that were considered when the approval request was submitted. Long term prednisone use was one factor. The failure of all other treatment options like methotrexate was another factor.
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You oviously had a doctor working in your behalf. We should all be so lucky. However, I can see now that, while actemra andles the IL6 that you produce, it doesn't encourage your body to make less. That may be your stumbling block to get off of it.
Over time my rheumatologist hopes that my body will produce less IL-6. It was explained to me but I can't say I understood everything.
The explanation had something to do with immune memory. The thought was that my immune system was over reactive to something in the past which resulted in an autoimmune response. The autoimmune response persisted for a long time so now my immune system has a "memory" for attacking my own tissues.
An immune memory develops for foreign invaders and is useful for future attacks. In an autoimmune scenario, this immune memory is detrimental because my own tissues are always present and my immune system perceives them as a threat.
My rheumatologist doesn't think my immune system will forget about what it has been attacking anytime soon. However immunity to things does wane over time so maybe my immune system will eventually stop attacking me. It does provide me with some hope.
I think that you explained it very well. It is great that your doctor takes the time to explain things. Take a look at the Low Dose Naltrexone, there is a lot happening with this drug that may be of use to us. It isn't a panacea but it has some amazing uses. The LDN Research Trust has some good info.
I was told that PMR is more likely to go into remission than other autoimmune disorders. Part of the problem with achieving remission of PMR is that long term treatment with prednisone is the current standard of care. Prednisone manages the pain but doesn't solve the problem. As long as you take enough prednisone, pain from a wide variety of disorders will be controlled. The trick is knowing what is causing the pain when you taper your prednisone dose lower. It may be PMR or it may be something else.
Generally speaking, I was told autoimmune disorders have three possibilities after they start.
1) A one time event and it goes away and never happens again.
2) A more likely scenario is that it will progress into a recurring pattern.
Remission is achieved but then it starts recurring. The time between remission and recurrence varies. It could be years before it recurs again. Given that it takes a long time to taper off prednisone when it is taken long term at doses in excess of 10 mg, you need to successfully get to a lower dose of prednisone (approximately 7 mg or less) to know if it is recurring.
3) The last possibility is a chronic form. The pain may be controlled but you will always need some kind of treatment to control chronic inflammation.
My rheumatologist thinks I went through all three phases. I have been diagnosed with 3 different autoimmune disorders. When I was first diagnosed it seemed like it would be a one time event. It took 5 years before it recurred. Then it started to recur more often but I still enjoyed a year or more of remission between flares.
When I was diagnosed with PMR things became chronic. I took prednisone daily for more than 12 years after PMR was diagnosed. I did successfully taper off prednisone. I'm now being treated with a biologic that seems to control all my autoimmune problems.
Can you tell us what the biologic is that is treating your autoimmune problems?
an important message from my Rheumy is There is no Timeline… just b patient when tapering…everyone reacts differently… i went from 5 to 1 and had to go back to 5… I am a patient who's patient lol hope u r 2
I am on 4, from 40 mg. It has taken me about a year and a half to get here. Currently my doctor has me slowing down the change, and I plan to go to three mg in Jan. Interesting fact, when I was first diagnosed in the hospital, we thought it was Lyme meningitis again. That said, we ruled it out, and for 3 days, I was on 1000mg a day, just so I could walk again. After that, I was on 40 mg for about a month until I could in and see a rheumatologist.
You are doing great!
Does anybody think a stressful shock to your system triggered PMR?
Any thoughts on what triggered Your PMR?
Yes I believe mine was – I lost 3 immediate family members in 6 years / the last being my sister in a tragic circumstance. I really think the shock and loss quite possibly triggered my pmr. I guess we’ll never really know but that is what makes sense to me.
When you do not have symptoms of PMR without drugs then you are in remission. My symptoms were hip and shoulder girdle pain and fatigue. I have had PMR for about 35 years and it has always returned after a year. If you search for more of my posts using my unique name you will have a more complete story of my history with PMR.
Yes I think mine was for sure. At 71 in 2019 I decided to return alone to my home country after 45 years away . No support network left, major financial issues at first and problems with my small home. PMR set in during this time then there was lockdown in 2020. My stress was very high for a long time. I’m happy to report I’m in almost complete remission now, I’ve made friends and life is as good as it can be. But there is still some muscle weakness in my legs so I have taken a few minor falls. Very little medical support including no rheumatologist available where I am living so this forum helped get me through.
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