Drug overload

[Tucki]

I’ve been on prednisone for a year now, starting at 60mg , tapered to 7, had a flare and up to 15mg. Added TCZ about 6 months ago. Dr thinks I need to add methotrexate now to help with getting off prednisone. Seems like a lot of drugs to take but would like to see the GCA go into remission. Any others used these drugs together and had success?

[jinasc]

S/he must be joking adding metho to TCZ - you need to discuss this with your Rheumy before you add another drug.

This is from Professor Bhaskar Dasgupta:

10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.

[PMRpro Ambassador]

Only about half of GCA patients put onto TCZ are able to get off pred altogether - the other half required a low ongoing dose of pred, usually in the 8-10mg range. This is because there are 3 potential causes of the inflammation in GCA and TCZ only works for one, the creation of the inflammatory substance IL-6, Biologic drugs are VERY specific so if you have the other underlying causes, they carry on regardless and require pred to manage them.

I do wonder how much of the pharmacology some doctors remember. And whether they have read the Giacta trial results about the numbers TCZ works for,

[Tucki in reply to PMRpro]

Thanks for the info, I didn’t realize there were 3 factors in gca. My pmr/gca issue started with a reaction to a “wonder” drug Repatha that my cardiologist insisted I take to control cholesterol, I couldn’t tolerate statins so after 2 years of trying to get me to take Repatha I gave in.After the 3rd injection, I was in an ambulance on the way to the emergency room, couldn’t hardly move and pain was excruciating. Morphine eased the pain, sent home and 3 days later right back in ER. This time the Dr looked into Repatha and found some people had bad reactions to it and started IV steroids and that really helped. After going home and pain was coming back, my GP sent me to a Rheumatologist and she quickly confirmed pmr and after a scan gca. So I guess that’s why drugs just scare me a little. But without prednisone in the beginning, I don’t think I could have survived. Thanks for all the good info I get from this forum.

[PMRpro Ambassador in reply to Tucki]

One of the good aspects of pred is that after over 60 years of use, there really isn't a lot to be learned about unusual adverse effects! New drugs don't have that cushion - as you found. Particularly since doctors often don't link the strange effect to the drug. I develop atrial fibrillation in response to i.v. diazepam, often used to manage agitation or muscle spasm. The first time it was being treated for severe back muscle spasm - alongside high dose NSAIDs and pred. They blamed the pred and stopped it. When it happened the following night after anotherlot of i.v. diazepam they believed my husband - who had looked it up. Now it is in large letters on my medical file!

[SheffieldJane]

I have put my faith in Tocilizumab alongside Pred. I was able to get down to 7 mgs of Pred with the aid of Toc. from 40 mgs in just over a year, with no flares.I think that I will get off Pred entirely as long as my adrenals hold out. Tocilizumab also has an impact on the underlying disease. I agree that Methotrexate seems like overkill. However, there is plenty about this drug in the FAQs on here. So have a read. We are limited in the period of time we can have on Tocilizumab and may want/need another steroid sparer at some time in the future. You have tapered quite rapidly in a year and this can lead to flares. I would do a slow, careful taper from now on and I wouldn’t add Methotrexate yet.

[Tucki in reply to SheffieldJane]

Thanks for responding, I’m having a hard time getting my TCZ as it’s going to covid patients now. Hopefully that will get better soon. It seems a lot of Drs try to rush the tapering of prednisone, and mine wants me off asap, but does not want me to suffer so is good with going up during a flare. I never dreamed a year ago I would still be dealing with this. Now that I got all the lemons together, I’m going to work on making some lemonade, or better yet, how about Limoncello!

[phebamom in reply to Tucki]

My previous infusion of Actemra was delayed for 3 weeks because of the shortage.

[SheffieldJane]

Sounds good to me!My Tocilizumab delivery people don’t anticipate a problem but are delivering 4 weeks supply at a time rather than 12 weeks as they did formerly.