New drug to try to come off prednisone??
Posted , 16 users are following.
Hi, this is a message I got from my rheumy today. Has anyone heard of this?
"I am wondering if you would be willing to do a trial of a medication called Plaquenil/hydroxychloroquine, it is a tablet to be taken twice a day, I have tried it in other patients with symptoms such as yours and it has worked in helping patients come down off of prednisone.
That be something you might be interested in"
0 likes, 8 replies
missmagwumps DebbieHurts
Posted
Debbie - are you in the UK or US ? Very interesting - I am in UK and see my rheumy early March and will def ask about this....though I am reducing pred quite rapidly ( by 1mg a week) as I have had so many bad side effects since being on Prednisolone since July that has made me worse then I was originally...I am not convinced PMR was my problem in the beginning and I have not had any significant pain - other than my usual aches and pains (and no where near as bad as people on this forum) and am now down to 4 mg a week.....
My palpitations are diminishing and they were pretty full on, I am still very fatigued but I think i am prepared to put up with this for time being......
Good luck if you take up the trial and let us know how it goes if you do or if you hear any more on the subject....thanks x
Debkimly DebbieHurts
Posted
This is a medicine that has been used for RA. I have been taking it with methatrexate for 5 years now.
BillyP DebbieHurts
Posted
GDay Deb, I am in Aussie land, and had a shot at taking Plaquenil about six years ago ( give or take a few)It has been around for a fair while, and sort of supplements the pred dose in much the same way as MTX. I have tried both to lower the pred dose, but for me, neither worked as they both made me feel terrible. But i guess you have to try these things as long as your medics know what they are doing. Give it a go and you can always knock it on the head if it doesnt work. FOR ME , it is pred only for my pmr.
Anhaga DebbieHurts
Posted
My concern is "come down off prednisone" when I believe at the moment you are still at the stage of "taper to the lowest dose" which controls the symptoms. You can but try, I suppose. What works for one may not work for another. Good luck!
TheRaven DebbieHurts
Posted
Rheumy #2 had me on that medication for about a year. My understanding is that it's a medication for RA. I was never convinced that it made any difference and finally I decided to quit taking it and see how I reacted. There was absolutely no reaction for me and I haven't taken it since, which has been at least 6 months now. For myself it was a waste of time and money.
Danrower DebbieHurts
Posted
I was on it for 2 months. Did not make any difference in PMR symptoms or prednisone dosage. Additionally, it had a very significant side effect of high photosensitivity. I had to wear sunglasses IN the house. It took 2 months for the drug to completely leave my system (it has long life in the body, Prednisone leaves the body in 24 hours, I think). I have not heard significantly good reports for plaquenil in PMR treatments.
Good luck
EileenH DebbieHurts
Posted
There is no published study evidence it works and the latest guidelines specifically mention it in Recommendation 7 as not being of any proven benefit. Individual doctors may claim it helps - the only way to know is to try.
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
My rheumy insisted he finds methotrexate very helpful - I found the month I was on it awful. I felt worse than I did with PMR and no pred!
DebbieHurts
Posted
Why doesn't anything work???