Posted , 11 users are following.
My Rheumy suggested two drugs to help with tapering under 10 mg. They are colchicine and hydroxychloroquine. Has anyone ever been prescribed either of these? We're they helpful?
What additional drugs would be helpful? Thanks for feedback, still smiling 🙂 and think positive!
0 likes, 42 replies
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EileenH Michdonn
Posted
Neither of them are included on the recommendations for tapering in PMR. Plenty of people have been given them - many of them found them of no help and they had side effects.
Methotrexate is the most commonly used, leflunomide is also often suggested and there is a paper where 21 out of 23 patients went into remission. I have "spoken" to the one who dropped out (one was lost to follow-up) - she said it was awful and many of the participants found the leflunomide difficult. I know a few people who have had to stop it because of serious side effects.
My own view is that you should FIRST try tapering slowly as you already do - for many people that is enough to get you to a lower dose without adding the risks of more side effects. If that doesn't work then by all means try a so-called "steroid sparer" - but with the proviso that if it causes side effects you stop. But I don't think I would start with either of the two you mentioned - they have absolutely NO evidence to show they help. There is one poorly powered study showing plaquenil does not really help. I have never come across colchinine being used.
Michdonn EileenH
Posted
Thanks EileenH, once again you have come through. The side effects of both these drugs are not for me. 55 years a diabetic, neuropathy is already a issue. On metformin for years, which does put a strain on kidneys. So both of those options were out, unless someone said yes they are GREAT! My choice is to go slow DSNS taper. The Rheumy is concerned about the quantity of Pred that I have consumed since my flare, which is considerable. She has been no help! I am still smiling and think positive. Thanks again for your information and help. 🙂
EileenH Michdonn
Posted
One of the authors, Matteson, is involved with the drawing up of PMR/GCA guidelines. He knows his stuff.
Michdonn EileenH
Posted
I did EileenH, she told me how many people she knew in the article and gave me two handouts on the drugs she would like me to take. I don't know what is going to happen, but I do know that I am not taking either of those drugs. Time will tell if I take anything else, I am going to try not to. Nice slow DSNS taper!
erika59785 Michdonn
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Michdonn erika59785
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erika59785, the Rheumy suggested
colchicine and hydroxychloroquine. I do not think I will never use either one. I been reading about the drugs, neither have been in PMR trials or studies. Couple of others have been, but not with great results. Thinking positive and smiling. 🙂
Michdonn EileenH
Posted
EileenH, yesterday found an article "2015 Recommendations for the Management of Polymyalgia Rheumatica" . The only sparring agent suggested MTX, and not in all cases. The Rheumy is concerned about the amount of Phed that I have consumed, but I still want to go slowly, I will consum far more if I have another flare. Do you have any idea what a safe cumulative dosage of Pred might be? And should the dosage be counted annually or totally? Thanks once again for your wisdom. Still smiling and thinking positive. 🙂
EileenH Michdonn
Posted
I've quoted that article loads of times - and the link is in our resources post I keep putting the link up for.
I don't know what is a "safe" cumulative dose - and I imagine that neither does anyone else. Everyone is different. A patient with PMR takes a fraction of the dose that a GCA patient does. There are people who remain on pred at PMR doses for life - and there is a new paper about the low rate of side effects at PMR doses which I know has been quoted here several times.
Your rheumy needs to get up to date with the Recommendations and stop suggesting totally unproven approaches. Or you need a new rheumy - but of course you might fall out of the frying pan into the fire!
Michdonn EileenH
Posted
I did not post the link the last couple of times I posted a link the moderator got them. I am still looking for information on "safe cumulative dose". The article is very informative, I will show it to my Rheumy, but I don't think it will do much good. I think at least half or better of the people on the forum have a better knowledge of PMR than my Rheumy. Getting another Rheumy, she is the only one for miles. Thanks again for sharing your knowledge. I'm still thinking positive and smiling. 🙂
erika59785 Michdonn
Posted
Indeed, the people on this forum have a better knowledge of PMR than most Rheumies. They don't know the pain, lacking empathy, and don't take it serious.
Michdonn erika59785
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erika59785, I really don't wish anyone bad, but do sometimes wish that some of the Rheumies, could have PMR for a day to understand what we go through on this journey. But I am doing well, staying positive and keep a smile on my face. 🙂
erika59785 Michdonn
Posted
nick67069 Michdonn
Posted
I don't know of any article that talks about "safe cumulative dose", but I do know that this article talks about average cumulative dose and minimal side effects that it had compared to non-PMR population. The title of the article is "Polymyalgia Rheumatica and Steroid Side Effects - New Findings". If you google it, you will find ti easy.
As a reference here is my stats... Started in December 2015 @ 15mg/day. Currently at 4mg/day... Cumulative prednisone amount is 4.2gr or (4226mg).
Michdonn nick67069
Posted
Thanks, Nick. EileenH and others have helped also. Keep smiling 🙂
Michdonn erika59785
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GOOD! 🙂
EileenH Michdonn
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Anything within this site and anything from the nhs is allowed - so sometimes I put up a post and ask for approval so I can then use the link again. The previous Moderator did allow things at time, the new ones seem to have a blanket policy which isn't very willing to bend! Lack of experience probably.
Michdonn EileenH
Posted