Biologic Medications-Video about how to decide what is right for you.

I have another question. I have been on Actemra with good results for past 6 months. I have recently developed a dull headache for about ten days and then 6 days ago developed an extremely bad low back ache which is making it difficult to get around. I have checked and it seems back pain and possible headaches can be a side effect - but this is not a good exchange for the joint pain and occasional right temporal headache I would get. I do weekly injections but I might skip today’s injection and go back to every other week. What do you think. Is it something else or is it the Actemra? I have very little energy or stamina also. Thank you

I have another question. I have been on Actemra with good results for past 6 months. I have recently developed a dull headache for about ten days and then 6 days ago developed an extremely bad low back ache which is making it difficult to get around. I have checked and it seems back pain and possible headaches can be a side effect - but this is not a good exchange for the joint pain and occasional right temporal headache I would get. I do weekly injections but I might skip today’s injection and go back to every other week. What do you think. Is it something else or is it the Actemra? I have very little energy or stamina also. Thank you

@randersonccc

Just my opinion about Actemra along with some personal experience. Actemra is a "targeted" biologic that seems to work well for PMR/GCA. Many people on this forum seem to concur that Actemra works well for them but results depend on the individual.

My personal experience with several other autoimmune conditions and other medical conditions that aren't autoimmune is that Actemra doesn't work well for "everything." My rheumatologist and ophthalmologist both said that Actemra might not work so well for my other conditions. Actemra was only targeting PMR. I was asked to pick between 2 different biologics that were tried. A different biologic that targeted a different inflammatory pathway didn't work as well as Actemra did.

Sometimes it is said that PMR/GCA involves several inflammatory pathways although the IL-6 inflammatory pathway is implicated the most. Multiple pathways may be true but patients must also consider that they might have other conditions that involve a different inflammation pathway and come with different set of problems.

What I'm trying to say is PMR/GCA is a diagnosis that doesn't exclude other conditions from occurring and co-existing with PMR/GCA. My assertion that other, parallel, or co-existing conditions can exist with PMR is supported by clinical evidence in my case.

Having little energy or stamina makes me think about the adrenal insufficiency I had when I was coming off prednisone. That side effect from prednisone pops up on lower doses of prednisone and can persist after prednisone is stopped. Secondary adrenal insufficiency can manifest during low-dose tapering and can persist for months after cessation of prednisone. That fatigue was overwhelming.

@dadcue very helpful. And yes I am tapering off prednisone but when I get to 1 mg by the third day I run into problems and go back to 2mg - this information is very helpful thank you r

@randersonccc

Just so you know... I was told that I shouldn't taper any lower than 3 mg when I had a low cortisol level. When I asked how long I should stay on 3 mg -- an endocrinologist said "as long as it takes" for my cortisol level to improve. I was warned that my cortisol level may never improve. That was because I had been on Prednisone for 12 years. The chances of getting off Prednisone decreases with duration and cumulative dose of prednisone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11451960/.
----------------------
It took 6 months for my cortisol level to improve. It was a novel approach because nobody ever told me not to taper off Prednisone before. I was more surprised by what my endocrinologist said after my cortisol level improved. She said 3 mg of Prednisone was a very low dose of Prednisone and no taper was needed so long as my cortisol remained at an "adequate level." I was told to discontinue Prednisone if PMR was controlled AND my cortisol level was adequate. Two things needed to happen before I could taper off Prednisone.

Actemra was keeping PMR in check so I discontinued Prednisone. I did a "countdown taper" 3 - 2 - 1 - zero in less than 2 weeks. It was great to be off Prednisone for a few weeks the first time I tapered off. Unfortunately, one of my other autoimmune conditions flared up. I was back on 60 mg of Prednisone again because of uveitis. My endocrinologist said I should expect the unexpected when I tapered off Prednisone but nobody expected a flare of uveitis!
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
---------------------------
My opthalmologist said Actemra wasn't "optimal" treatment for uveitis. Humira was "optimal" for uveitis so it was tried. I had a lot of past experience treating uveitis with high dose Prednisone. My treatment plan was to taper off Prednisone within a month or two. Humira was supposed to prevent uveitis from flaring up again.

What Humira didn't prevent was PMR flare. I was stuck on 15 mg of Prednisone again because my PMR symptoms returned. My rheumatologist said I needed to give Humira time to work. The time frame was 3 months to see if Humira would work for PMR.

Humira didn't work for PMR but I gave it 3 months. That was when my rheumatologist told me to pick the biologic that worked the best for me. It didn't take me long to pick Actemra. I went from 15 mg to zero again in slightly more than a month the second time I tapered off.

My rheumatologist said it would be impossible to adequately treat all my conditions. However, I have now been off Prednisone for more than 5 years without a flare of anything. The only time I had a flare since that time was when I wasn't on Actemra.

Good luck getting past your 2 mg barrier. My barrier happened at 3 mg. I just wanted to say expect the unexpected because nobody knows what might happen at this stage. Try to stay optimistic. I don't think any single tapering plan works perfectly for everyone. I don't recommend doing what I did because it might not work for you. I managed to dodge the worst case scenario of having an adrenal crisis but I had to stay on 3 mg for a long time.

Thank you so much for the video. It was very helpful, especially to those that might be considering starting a biologic. I have been toying with this idea. I have been off prednisone since June 2024. Biologic drugs are chemically engineered using living organisms. I recently asked the question of what living organism is used to produce Actemra. The answer….CHO Chinese hamster ovary cells. Scary as it sounds , I might still have that conversation with my rheumatologist about the possibility of going on a biologic to control the inflammation. I did find the video very informative. Thanks. Sitting on a fence post.

Thank you so much for the video. It was very helpful, especially to those that might be considering starting a biologic. I have been toying with this idea. I have been off prednisone since June 2024. Biologic drugs are chemically engineered using living organisms. I recently asked the question of what living organism is used to produce Actemra. The answer….CHO Chinese hamster ovary cells. Scary as it sounds , I might still have that conversation with my rheumatologist about the possibility of going on a biologic to control the inflammation. I did find the video very informative. Thanks. Sitting on a fence post.