Prednisone Actemra and MTX

[Lauren103]

Does anyone have experience taking prednisone, Actemra and MTX all at the same time?

[PMRpro Ambassador]

I'm sure I have heard someone say they have. But it seems crackers to me unless you have PMR/GCA and RA at the same time. Actemra fulfilled a study to reduce the need for pred. Why add another immunosuppressant to the mix - two is plenty.

[Blearyeyed]

Do you have more than one condition ?

I have seen some research on the use of all three but as Pro says I believe that was in managing RA and either GCA/ PMR and another autoimmune condition .

It hasn't as far as I know been established commonly for use , especially not in the UK.

As yet I can't remember anyone on the forum using the three drug approach on a long term basis .

[jinasc]

Like PMR Pro, why two steroid sparing agents.................

I assume that Folic Acid is also in the mix. are there any more drugs?

I would be adding up all the side effects, starting with pred 83....

[piglette]

Have you actually been offered all three? Do you have PMR/GCA or something else such as rheumatoid arthritis as well?

[Lauren103]

I have PMR and GCA; I have been taking prednisone for almost 3 years. I have been taking Actemra for 1 year. I have had very few issues with side effects while taking Actemra. I take it by injection once a week. The Actemra holds my inflammation markers down but I have trouble when I get to 5 mg. It could be withdrawal from prednisone also. My markers stay low but I have symptoms of PMR and headaches. Not anything like I experienced at the beginning of my illness- but, worrisome. My doctor is excellent. He suggested MTX as there have been people with positive results. I am resisting that option and hoping I will finally get to a very low dose of prednisone - zero would be great - but honestly, I don’t know if it is achievable. It’s been a long time on meds and I had this condition for about a year before the diagnosis. I know that some people don’t ever get completely well again.

[PMRpro Ambassador in reply to Lauren103]

If Actemra doesn't get you off pred then I have great doubts that mtx will either. Only about half of the patients in the clinical trial got off pred entirely and doctors need to be aware of that. And if you have been on pred a long time then the 5mg and down point will take time, with or without Actemra which doesn't replace adrenal function.

Look at it from my point of view: I had PMR for 5 years before I was given pred (not diagnosed despite being pretty textbook in presentation except blood markers). I have been on pred for 10 years now. I feel good, I live well, just been to the USA for a week with no adverse effects, and work on getting to a lower dose. But I don't crucify myself when I can't. I tried methotrexate as a steroid-sparer which made me feel worse than without pred. I'm in better condition than many people my age - but only because of pred.

[Lauren103 in reply to PMRpro]

Hi

Yours was an interesting reply. Thank you for writing. I’d like to ask if you find yourself having to increase the dosage at times, or, have you stayed under 10 mg for the majority of the 10 years. I forgot if you mentioned whether you had GCA as well as PMR.

[PMRpro Ambassador in reply to Lauren103]

I have PMR - officially. But I and a few doctors are agreed I probably had large vessel vasculitis.

Have I increased the dose at time? Oh yes, I don't compromise and although I did get down to below 5mg for several months a couple of years ago it was too far and I went back to 5mg - but then had a flare that sent me stepping up until 9mg was the "right" dose for some months. Then I had a proper flare that took me back to 15mg. I wasn't able to get below that without some cardiac problems getting worse (I have atrial fibrillation and quite bad bradycardia at times). In the end I had a pacemaker inserted in May this year - and got back to 10mg with ease. 9mg is a step too far at present though. In the first 4 years I really struggled to get below 10mg but I don;t think I had to go back to 15mg at any point. Then I was switched from prednisolone to methyl prednisolone which was awful and after some months even 20mg wasn't cutting it. I was switched to a form of prednisone and the same pred miracle happened immediately with 15mg and reducing the dose wasn't too difficult.

[NEPatriots12]

On a 3 year journey so far.

I have been taking Actemra infusions since Dec. 2018 and Rheumy added leflunomide in March since I had very negative mtx reaction in past. I have positive CCP test indicating PMR/RA combo.

This has allowed me to reduce from 16mg pred to 5mg currently without flares. Fingers crossed that I can continue slow taper. Good results so far, only side effect is some hair loss with lefludomine, but it grows back.

[Lauren103]

Hi

Thanks for your reply. Are you still taking Actemra?