Methotrexate / Actemra

@linda Thanks much. So good to know someone else is taking the same meds. My rheumatologist last week said I am stable for right now. So I am going to try and relax and give it more time to see how I do. I hesitate to start a new medication with more side effects unless I have to. Appreciate knowing someone else is dealing with same problem. I have been on the drug combination for 3 months so will try to be patient.

I am jumping into this conversation just to emphasize the need for caution with biologics. Someone in my family had a severe delayed reaction to a biologic. It was a week after an infusion. Not knowing what was causing his symptoms he went to the ER maybe thinking it was Covid and was admitted to the hospital. Covid test was neg. When tested for antibodies to the biologic the result was significantly elevated. The recovery took weeks. I know it was a rare occurrence but it can happen. He's taking a different biologic now.

Those are the drugs I take too…weren’t working well so Actemra added almost two months ago …think it’s working but still experiencing days of great fatigue and stiffness …more so on days just before the Actemra shot …which is every two weeks …don’t know if that’s coincidence or just body waiting for more Actemra fix .

In the first week after PMR diagnosis, I have needed to increase prednisone from 10 to 15 and today to 30 mg. I have osteopenia and am taking alendronate (Fosamax), which has improved my bone density ( it used to be in the osteoporosis range). I am told by my new rheumatologist I have no alternative to prednisone until I am in remission, then can try methotrexate. Actemra is not an option for me because I already take inflixamab, another biologic, for Crohn’s. I would love to find one biologic that works on both diseases! I’m wondering about Humira. Does anyone have experience with Humira for PMR?

How is PMR diagnosed I’ve had osteoarthritis for years but severe joint pain has my rheumatologist thinking it’s pmr I know very little about it and cannot take prednisone

I’m not as literate as others on the diagnostic process for PMR
@dada can you share your knowledge ?

Humira is a TNF inhibitor which isn't likely to help PMR. My experience with Humira was when my ophthalmologist said Humira was "optimal treatment" for uveitis.

Prior to this, Actemra (tocilizumab) was used to treat PMR. I was able to successfully taper off prednisone for the first time in more than 12 years. Soon after I tapered off prednisone I had a flare of uveitis. My ophthalmologist stopped Actemra and started 60 mg of prednisone. Humira replaced Actemra to prevent uveitis from recurring.

While on Humira, I wasn't able to taper off prednisone again because PMR pain returned. I was on Humira and 15 mg of prednisone when my rheumatologist informed me that it would be impossible to adequately treat both PMR and uveitis. I was allowed to choose between Humira and Actemra because I could not take both. I chose Actemra.

My ophthalmologist was dismayed about my choice and said it was just a matter of time until uveitis flared again. Actemra isn't an ideal treatment for uveitis. However, a monthly Actemra infusion has worked well for me. Uveitis hasn't recurred and PMR is in remission. Best of all, I have been prednisone free for more than 2 years.

What works for me might not work for you. I have reactive arthritis, uveitis and PMR. All of these autoimmune disorders are now in remission on a monthly infusion of Actemra.

Anticyclic citrullinated peptide (anti-CCP)
Antinuclear antibody (ANA)
Complete blood count (CBC)
C-reactive protein (CRP)
Erythrocyte sedimentation rate (ESR, also called sed rate)
Rheumatoid factor (RF)

This is the panel of tests my PCP did to diagnose pmr along with my symptoms.
Rheumatoid arthritis was ruled out. I do have osteoarthritis in some joints which has been diagnosed with xrays.

It’s complicated, isn't it, when you have more than one autoimmune disease needing treatment. I must take a TNF blocker for my Crohn’s, but couldn’t also take Actemra. I am so glad it’s working well for you. It’s early in this process for me, and I guess I was hoping to hear something encouraging about Humira. Thanks for sharing your history.

Yes it gets complicated quickly when the immune system goes haywire. Toss in prednisone side effects, especially the one that causes adrenal insufficiency, and things get hopelessly complicated.

I wish there was a better solution than prednisone. Nothing seems very straightforward. Every alternative treatment seems like trial and error.

Maybe Humira will work for you. Nobody knows with any degree of certainty what will work when there is a mix of things going on.

I know prednisone is used short term for flares of Crohn's. With all the GI side effects from prednisone how do they expect you to take prednisone long term for PMR?