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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PubMed had a paper of a very small study done on people with PMR who had flared while they were taking steroids. Interestingly, they all showed an increase in the cytokine, IL6. I mention this because MSM, a supliment that is considered safe and easily obtainable, is known to down regulate IL6. I think we all should all be taking it, but that is just my opinion.
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IL-6 regulation is an interesting topic. I take a biologic called Actemra which is an IL-6 receptor antagonist to control my symptoms of PMR along with other autoimmune problems. I was able to taper off prednisone after taking it for 13 years of PMR. Now I want to wean myself off Actemra even though I haven't had any side effects. I have tried stopping Actemra but my symptoms return.
Glad the MSM is working so well for some people. I tried it, and it really upset my gut in spite of starting it at a very low dose. Wish I could take it.
Very sorry you had that reaction. Wonder why?
I am not sure if PMR completely goes away or just goes into remission. What have the rest of you been told??
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.
Actemra is a IL6 receptor antagonist so is not illeminating the source of the IL6 but rather interfering with your reaction to it. I am in the process of reading vollumn II of the LDN research book and it indecates that biologics may effect the immune system adversly. In a sense, you need to normalize your system before getting off of Actemra. Low Dose Naltrexone really helps with that. Also, the MSM (which doesn't require a script and is Genrally Regarded As Safe) actually lowers the output of IL6 (as does LDN, through its affect on the microglia). I would suggest you take MSM awhile before you try again and also read up on LDN and ask your rheumy for it if you think it is right for you. It is very safe, too.
I am tapering off as I started with 20 mg for the diagnosis of PMR. Maybe I can see some light at the end of the tunnel (or hoping) after reading yours. Tell me, what is a biologic just for future reference? The more knowledge I have the better off I am.
A biologic is a catch all term for the created in the lab monoclonal antibodies and the like against specific things the body produces. They have them for all sorts of disease at present. Actemra is just one of many and it is specific for interlukine 6 which is a cytokine that is produced by the T cells in our immune system. It is one of many cells that produce an inflamatory respnse, which can be a good thing for a short time fighting an invader. (Virus etc) It is not a good thing when it goes on for awhile and starts a problem with healthy tissue. This is what autoimmune diseases are all about. So you want to find a way to calm the immune system and turn off these unwanted inflamatory responses. Easier said than done.
How Actemra works isn't well understood. It is way over my head to explain how Actemra works. One simplistic theory makes sense to me. It is called the "bathtub theory" that explains the mechanism of action for Actemra.
The diagram made more sense when I realized the red y-shaped thing was a molecule of Actemra attached to an IL-6 receptor.
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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