PMR - How will I know I am in remission?
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?
Thank you...
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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.
Can you tell us what the biologic is that is treating your autoimmune problems?
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.