What is the goal when tapering?

I forgot to mention that my cholesterol came down significantly as I tapered prednisone. In late December when I was around 20 mg per day, it was looking like I was going to have to start taking a statin. I was retested about a month ago when I was taking 6 mg, and my cholesterol had come down enough that I don't need to treat it.

"Others in this forum seem to have had good success with it."
---------------------------
Now that more people are reporting success with Actemra - I would like more people to share their personal experience with stopping Actemra. Does anyone have a "sustained remission" after stopping Actemra???

My rheumatologist wanted me to try Actemra 6 years ago. I was on another PMR forum at the time seeking information from anyone with personal experience with Actemra. There was a backlash from the patient "PMR experts" who claimed to be "entitled" to know things about PMR that no one truly knows. They were pro-prednisone and anti-Actemra for unexplained reasons. They didn't have any personal experience with Actemra and the research evidence that Actemra worked for many people was dismissed.

All I said was Actemra "seemed to be working" and I wanted to be off prednisone because of my many long term side effects from prednisone. In the short term, prednisone wasn't so bad for me. However, I didn't want to be on prednisone for the rest of my life.

I'm happy that Actemra works for some people as it did for me. I have been on Actemra for 6 years without any serious side effects. I tapered off prednisone within a year of starting Actemra. I exceeded my rheumatologist's expectations because he would have been happy if I could get down to 3 mg of prednisone. Considering I took moderately high doses of prednisone daily for 12 years ... Actemra has worked remarkably well for me.

The downside of Actemra has been my inability to stop Actemra. It was stopped once because of supply chain problems during Covid. I had a full-blown relapse and needed prednisone again. My longest period of time between infusions was 7 weeks when my symptoms started to return but I didn't need to restart prednisone that time. Overall, my quality of life for the last 4 years has been much better compared to my 12+ years on prednisone. However, I don't want to be on Actemra for the rest of my life either.

You're asking a difficult question - how long do people with PMR and/or GCA need to take medication to control their disease and prevent relapse? I just googled "does PMR last forever for some people", and repeated the question for GCA, and the search indicated that long term or even life-long medication might be needed for some people. It said 2-5 mg of prednisone is a typical maintenance dose in those cases. I'm currently taking 5 mg per day (along with weekly Actemra injections), and the prednisone side effects at that dose seem very minimal. But I know there are still lots of potential problems from the prednisone even at low doses.

Wow ... I took atorvastatin for about 10 years while I was on Prednisone daily. Within a couple of years after Prednisone was stopped, atorvastatin was also stopped.

I still have "slightly high cholesterol levels" that are now being treated with Zetia. My endocrinologist said I was "very sensitive" to even a low dose of atorvastatin. After I stopped prednisone, my cholesterol levels were actually too low. I was on higher doses atorvastatin for 10 years while on Prednisone.

The same was true for my blood pressure medications. I took 3 blood pressure medications when I was taking Prednisone. Now all three of my blood pressure medications have been discontinued. The changes to my list of medications have been amazing to my primary care doctor. She says she enjoys "deprescribing" medications.

My rheumatologist says it is "unlikely" that I will get off Actemra unless it stops working. He says sometimes the body forms antibodies against biologics.
https://www.verywellhealth.com/antibodies-to-biologics-4846279
However, there are more biologics available to me now which may work as well as Actemra.

-------------------
Another scenario is that my immune system has formed a "memory" for what it has been attacking for so many years. The immune system is capable of acquiring a long term memory for "foreign invaders" like viruses and other antigens.

For autoimmune conditions the antigens are "self antigens." "The immune system mistakenly identifies these self-antigens as foreign, leading to an attack on the body's own tissues."

In theory, immune system memory is detrimental in autoimmune conditions because my tissues will never be neutralized and go away. To the extent that my immune system remembers what it has been attacking for so many years, my rheumatologist believes I might always need treatment.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4067599/
However, newer research suggests it might be possible to "reprogram" my immune system to forget about attacking my own tissues.

My rheumatologist says the goal for treating autoimmune conditions should be to "stop it in its tracks" and not let it persist. Stopping PMR/GCA in its tracks is something prednisone doesn't do very well.

Prednisone did stop some of my other autoimmune conditions. For uveitis prednisone induced a sustained remission. I took a high dose of prednisone followed by a fast taper off prednisone. I would be in remission without any prednisone for about a year before uveitis recurred. Even so, my ophthalmologist would rather that I remain on a biologic to prevent the recurring flares of uveitis even though I may have long periods of remission.

I, too, am interested in knowing if people are successful in stopping their Actemra. Friends and family ask me how long I'll be getting infusions. All I can do is shrug my shoulders. Many of you had been on Prednisone for years, before taking Actemra. I started Prednisone in July 2024. I was very proactive in getting treatment for PMR/GCA, because I knew what I was feeling wasn't normal for me. When I had a flare during the holidays, I told my rheumatolgist to order the Actemra infusions for me. I'm hoping that my 'short' experience in taking Prednisone will help my long term recovery. As soon as I began taking Prednisone, I knew that I didn't want to take it forever. I haven't had an appointment with my rheumatologist since my first infusion. I plan to have a discussion with her about how long her PMR/GCA patients have been taking Actemra and if any of them were successful in stopping the medication, without having to resort to Prednisone.

I appreciate the insight that @dadcue, @jeff97, and others in this forum share about their experiences.

Thanks @ropnrose for your kind words. I have learned a lot from the people on this forum.

I was fortunate that my rheumatologist encouraged me from the start to take Actemra.

I haven't actually thought that much about getting off of Actemra. I assumed at some point, probably around 2 years, that I would taper down and stop needing it. But I have no idea if that's a realistic assumption. I'm seeing my rheumatologist tomorrow. I'll ask what he thinks is most likely.

For now, I am happy to know that Actemra can be easily stopped. Prednisone can't be stopped abruptly but Actemra can. During Covid, I was notified that existing supplies of Actemra were being diverted to seriously ill Covid patients. Those Covid patients had their life on the line so I had no problem with stopping Actemra.

PMR/GCA relapses do occur when Actemra is stopped. It hasn't been determined what the "best way" to stop Actemra is but it can be stopped abruptly. The available research seems to favor tapering off Actemra.
https://www.sciencedirect.com/science/article/pii/S0049017224001483
-------------------------------
I need to add something to my comment that "I had a full-blown relapse and needed prednisone again." I was only off Actemra for about 6 months. I only needed prednisone again for 3-4 months until supplies of Actemra improved. After Actemra was restarted, I went from 20 mg to zero again in less than 2 months.

In the USA, restarting Actemra is done when a relapse happens. However, some people are able to stay off Actemra. In most cases, remission is quickly achieved again when Actemra is restarted. It isn't like Actemra fails but people need to continue with their treatment.

We can thank the citizens of England for real world information about what happens when Actemra is stopped. They are only allowed one year on Actemra and when their year is up ... Actemra is stopped and not restarted.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
------------------------
I have to smile because one of the authors of this study dismissed me. I still feel bad for all the people of England because it was only a couple of people who said my experience with Actemra wasn't pertinent. Mostly it was about me being treated with Actemra for "just PMR." I was reporting in 2020 what they have recently learned in 2024.

My understanding of the initial tapering is that there is an assumption that the starting dose of prednisone is l;ikely to be too high. But it should mop up any accumulated inflammation and significantly reduce the impact of new inflammation being generated daily. The success of this should be determined by pain levels and hopefully CRP/ESR results returning to normal range.

After that tapering is based on the premise that the illness should slowly improve over time and that less medication is needed as time goes on. As others have said that gets tricky. The only way of measuring the effectiveness of this approach is if the your CRP/ESR levels don't increase or the pain doesn't rise sharply as you decrease.

One of the goals in taking the steroids is to get relief from the inflammation pain, but being pain free may not be achievable because of the way the daily medication and daily inflammatory cycles work. But if the current dose of steroids is effective, there should be part of the day when all the inflammation from PMR has been cleared up by the body and you are pain=free. Usually the most pain and stiffness occurs in the morning but that can depend on when you are taking your prednisone dose.

After being on steroids for a while, some pain is also likely to be felt from withdrawal processes when reducing dosage. This should only last for a few days and then settle down provided the new dose is doing the job.

Although all of us have a long-term goal of reducing the steroid dose to zero, that ultimately becomes something of by-product of the process. It would be great to get to zero but only if the PMR has gone away. As long as the PMR is still present, the only goal available is to find the lowest possible dose of prednisone that treats the symptoms, or find a better medication.

At one stage I went up to 100 mg daily (for 5 days only) then down to 50 mg for a longer period to treat the rising inflammation of CRP (well over 100). It looked like I was starting to develop GCA symptoms and it was decided that hitting it hard was the best option. There was no formal diagnosis of GCA and no biopsy - I think largely because the high CRP told the story. It was a successful approach and possibly quite common. But tapering is hard and slow and I'm not eligible for Actemra as I don't have a GCA diagnosis. Coming up to nearly 2 years with PMR and after 18 months of methotrexate it see,s to have stopped doing anything at all, but make me feel worse for a day or so after taking it.