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methotrexate or kevzara
My dr is convinced I need to be on either methotrexate or kevzara to get off of prednisone. I am not convinced at that yet since I have been reducing down to 5mg thus far in about 6 months. I haven't ruled it out but was hoping to see how it continues without them. Is this something I should make a stand on with my dr?
If I go to one of these I am not sure which to try. The literature is confusing and somewhat scary. Is one better than the other? I want to be knowledgeable enough to make a good decision when it comes down to it. I do also realize there is quite a cost difference between the 2 choices. I guess I am looking for what some of you have done with either of these and if you found any success or issues? I do realize not everyone is the same in reaction to these. My dr isn't the most helpful at explaining stuff and so gives me paperwork on them. (I think she is too busy to take the time.) I am trying to get a second opinion on my treatment but it isn't easy to get into a new dr quickly and i am not going to stop with my present dr until I get something else definitely.
Are these taken along with prednisone or instead of?
Does one have more side effects than the other?
Is there a set time length to take these or is it lifetime?
I know these are dr questions, but she is difficult to corner on these at an appointment or respond in a message.
Thanks for any help and suggestions.
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@edinnola shared his experience starting on Kevzara and then switching to Methotrexate in this discussion:
-- What a ride it has been ...for me at least!: https://connect.mayoclinic.org/discussion/what-a-ride-it-has-been-for-me-at-least/. You might want to scan through the search results for methotrexate or kevzara while you wait for others to respond - https://connect.mayoclinic.org/search/discussions/?search=methotrexate%20or%20kevzara%20.
It isn't really a choice between two medications because nobody will know what will work the best for you. The choice boils down to WHEN do you want to move away from taking Prednisone and progress to a conventional DMARD (methotrexate) versus a biologic DMARD (Kevzara). It is more of a progression from Prednisone to a conventional DMARD or a biologic DMARD.
From my experience, if I could do it all over again, I would skip Prednisone and Methotrexate and go directly to a biologic DMARD (Kevzara) even though I only have experience with Actemra. Having the advantage of hindsight makes the call easier for me.
Depending on your rheumatolgist and/or insurance you may need to try methotrexate first before progressing to Kevzara. Your choice at the moment might be how long do you want to stick with Prednisone.
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2 ReactionsI would probably pick Kevzara if I had to do it over again. As Dadcue mentioned. Its an IL-6 inhibitor which has been found to be elevated in PMR patients. But my choice would be this instead of prednisone. You have already made the choice of prednisone. Neither of these additional drugs directly help with your cortisol restart. You will still have to fight through the taper. The purpose of the other drugs is to keep you from restarting PMR while tapering. Is it worth taking both if it might help? Probably. Kevzara can be stopped once you finish the prednisone if the PMR is inactive. Most people have PMR burn out where the drugs are not required. Dadcue has had trouble. Methotrexate might work and save you the money. Especially since you will be doing both. Sorry sort of wishy washy answer.
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1 ReactionAre these meds to be taken with or instead of prednisone?
Is there a suggested or required length of time?
How accurate are the side effect lists?
What did you do instead of kevzara? Did you succeed?
I used Dexamethasone because I had it available to me for self diagnosis. I took it for 4 months then tapered off in 6 months. I did not use anything else. Dex is similar to prednisone just a stronger version. So 2mg of dex is 10mg of prednisone. (roughly). If it were me, your already on prednisone. I dont know any of your particulars but I would try to taper off without more drugs. Either of the other two can take up 8 weeks to start working. I was only dealing with PMR. No other autoimmune. You are right at the taper wall on 5 mg. It will get harder from here but go real slow and try to wean off. If you you do take the others they may help some at this point and then stop. They usually like you stay on them for up to year after prednisone just to make sure the PMR is gone and your cortisol has restarted.
dadcue is better educated than me but side effects are really person to person. I have heard those that say they have no side effects from prednisone. I had high A1C, gastritis, High Cholesterol, high BP and weight gain in 6 months. Lots of people take statins. I can take them and have reactions in days. So its really how well your body tolerates it. With MTX is have seen high liver function tests from the comments. I dont think they know all the side effects from the Biologics yet. They are newer.
Unfortunately you can't simply stop taking prednisone. Methotrexate might help you get off Prednisone sooner if it works well for you. No guarantee methotrexate will work that well but for some people it works well. The research evidence that methotrexate works for PMR is mixed.
If you are a research nut like I am you might enjoy the following link. You are "newly diagnosed" so this fairly recent research is more pertinent to you than it was to me at the time I tried methotrexate. I think it is a study from The Netherlands.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9012047/
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My personal experience is the following:
I had mixed results when I took methotrexate for over a year. Methotrexate probably allowed me to take less Prednisone but I wasn't able to taper completely off Prednisone. My rheumatologist thought methotrexate was helping me. She wanted me to stay on methotrexate.
I didn't think there was any chance that methotrexate would have allowed me to taper off Prednisone. Methotrexate was making me ... let's just say nauseated. My rheumatologist didn't think my nausea was that bad but she wasn't the one who was retching every morning. She thought methotrexate might cause some nausea on the day I took my dose but not every day of the week. I called it "morning sickness" so maybe she didn't think I was being serious. I stopped methotrexate and refused to take it after a year or so.
My rheumatologist documented that methotrexate "wasn't tolerated" and didn't mention my liver enzymes were elevated. I remember going to my rheumatology appointment when I knew my liver enzymes were higher than they were at my prior visit. I thought my rheumatologist would want me to stop methotrexate but instead she wanted me to increase my methotrexate dose!
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I have never taken Kevzara so I have no experience with that biologic. I am taking a biologic called Actemra which probably works the same a Kevzara. My rheumatologist said Actemra was probably my best chance of ever getting off Prednisone since I had been on Prednisone every day for 12 years for PMR alone. I had many PMR relapses no matter how slowly I tapered my Prednisone. dose.
It wasn't like I didn't know how to taper off Prednisone because I did that successfully countless times for another autoimmune condition that was diagnosed 25 years before PMR was diagnosed. My ophthalmologist documented in his notes, "patient is skilled with prednisone tapers" before he handed me over to another eye specialist.
I knew how to taper off Prednisone but I was unable to taper off Prednisone after PMR was diagnosed. I was still on 10 mg of Prednisone after 12 years of PMR.
Actemra (tocilizumab) allowed me to taper off Prednisone in one year. I have been completely off Prednisone for more than 3 years. It is the first time in more than 25 years that I have gone longer than a year without any Prednisone.
I will be on Actemra for as long as it continues to work. In the UK, Actemra is restricted to one year if people are allowed to get Actemra for GCA. I don't think there are any biologics approved for PMR in the UK. The rest of Europe seems to get good results from biologics to treat both PMR and GCA but that is just based on what I read on the internet. I was told my experience with Actemra wasn't pertinent to people in the UK.
I wish there was more of an international presence on this forum. I want to hear about the experience people have from other countries. I know there are some people from other countries.
Methotrexate and Kevzara both have low success rates in controlling PMR while reducing prednisone.
KEVZARA
"At week 52, sustained remission occurred in 28% (17 of 60 patients) in the sarilumab [Kevzara] group and in 10% (6 of 58 patients) in the placebo group".
The difference here with people taking Kevzara was that only 11 more people out of 60 achieved remission after a year than if they had taken a placebo. This was reported as "significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose" by Sanofi and Regeneron Pharmaceuticals who makes Kevzara and who ran the trial.
"Significant" for the few who had some success no doubt, but devastating for the 62% majority who did not achieve PMR remission on Kevzara. Also, patients were still taking prednisone, though some of those helped by Kevzara were at a reduced dose.
https://www.nejm.org/doi/full/10.1056/NEJMoa2303452
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1 ReactionIf you want more data you could go to an independent reference lab
self or physician referred and have an IL-6 level drawn. Most insurance and Medicare will not pay. If it is elevated it would be a point for the more specific
biologic.
There may be financial assistance for the medication if you are Medicare and
have financial need. For now you could hang in and wean slowly for a few more months if symptoms allow. I was able to get free of steroids in 11 months. My second IL-6 and CRP were normal.