Plaquenil instead of Methotrexate?
Posted , 8 users are following.
Has anyone tried Plaquenil to help to taper Prednisone? Rheumy wants me to try this first.
0 likes, 10 replies
Posted , 8 users are following.
Has anyone tried Plaquenil to help to taper Prednisone? Rheumy wants me to try this first.
0 likes, 10 replies
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MaggiGrace bob14677
Posted
Hi Bob,
I was diagnosed with PMR in March 2015. Started on 10mg Pred along with multiple local kenalog (long acting cortisone) shots over the past 18 months to help with the horrible shoulder pain.
After refusing methotrexate due to my fear of yet more unwelcome side effects, my rheumatologist convinced me to try Plaquenil. I started on 400mg March 2016. After a couple of weeks I developed a "rare" side effect of my ears ringing unbelievably loud. So loud it would keep me from sleeping, and wake me up at night when I did manage to sleep. I contacted my rheumy who said that it wasn't the Plaquenil but I pointed out that was the ONLY drug I was taking besides the pred and had never had this problem before. The pharmacist I checked with said "It's caused by the Plaquenil, and this can result in permanent damage to your hearing". Ugh.
I asked rheumy if I could stop it for a few days, and sure enough the ear ringing disappeared. Rheumy asked me to try 200mg Plaquenil daily which I have done with no problem until about November 1 when the ear ringing started returning with a vengeance. (Plaquenil builds up in your system over time).
I have stopped taking the Plaquenil again for about the past two weeks. The ringing is still there but I do think it is very slightly diminishing, though it's still a problem for me.
Apparently (according to my Google doctor degree) this is a pretty rare side affect.
On a happier note - I am down to 2.5mg pred and hope to reduce completely off by March 2017 which would be my 2 year PMR anniversary. I *think* the Plaquenil has helped reduce some of the inflammation I was experiencing. I suppose time will tell.
All the best to you. MaggiGrace
bob14677 MaggiGrace
Posted
thanks and best of luck to you. I have been on Pred for nearly 2 yrs and have flared up every time I get to 8 or 7.5 mg. Trying DSNS method and currently tapering to 8 again with so far no problem. However long term use of Pred is reaking havoc with blood glucose, so we're going to try Paquenil to help tapering.
Still working on my Google MD! I'll "watch" for ear issues thanks to your heads up.
EileenH bob14677
Posted
There are a few people on the forums who are on plaquenil - most haven't found it helps, several have had side effects and there is no study evidence supporting its use. It isn't mentioned in the most recent recommendations for the management of PMR. Only methotrexate gets comment.
My feeling is it is fair enough to try any of these so-called steroid sparers providing they don't cause any side effects. But they do not replace pred in PMR - unless of course the diagnosis was wrong in the first place and it was actually LORA as they can both present identically.
I can't comment further though - no-one here in Italy ever mentions using these other drugs so it isn't a problem I have!
EileenH
Posted
Funnily MaggiGrace - my lists have ringing in the ears/ tinnitus as a common side effect of Plaquenil!
MaggiGrace EileenH
Posted
Yes, Eileen! Eye problems are a big issue apparently with Plaquenil. I am being followed closely by an opthomologist as well as my rheumy. I found it odd that my rheumy (who i adore) was unaware of the ear ringing/tinnitus issue until I came along.
It's quite maddening at times 😫
EileenH MaggiGrace
Posted
That is the understatement of the week!!!!!!!
erika59785 bob14677
Posted
FlipDover_Aust bob14677
Posted
I was put on Plaquenil as a precurser to starting on Actemra (Tocilizumab), as here in Australia you have to be classified as having RA, and tried all other drugs before being allowed to go onto Actemra. All it did for me was give me the diarrhea! My rhuemy said that plaquenil wouldn't do anything for PMR or pred reduction.
I've been on MTX for 12 months, which has helped enormously - I was unable to get below 20mg prior to taking it. Over the next 10 months I was able to get down to 7.5mg.
Three weeks ago I started a 12 month trial on Actrema - and I'm already down to 6.5mg of pred, with NO withdrawal side effects! I feel much, much better and I'm happier, and moving more.
Daniel1143 bob14677
Posted
A fascinating thread. I have had PMR for two years. Four different Rheumy's who could never agree if what I had was PMR, LORA or Lyme Disease. But PMR always won out.
Was put on Methotrexate last year with the thought that it would aid in Prednisone reduction, but felt no positive effect. After reading about its side effects, I stopped MTX cold turkey. Later, Rheumy suggested Paquenil given questions about LORA. Still don't know the answer to that one, but Paquenil has definitely helped me reduce Prednisone. Down to 2.5mg of prednisone with no flaring.
Seems Methotrexate works for some and not others. Same for Paquenil. The only truism is that prednisone always works. After that, it appears to be fate to the wind.
EileenH Daniel1143
Posted
" Paquenil has definitely helped me reduce Prednisone. Down to 2.5mg of prednisone with no flaring"
or, after 2 years, the cause of the PMR symptoms is going into remission anyway. As with pred, you will tell if you get off pred AND Plaquenil - if it is LORA presumably Plaquenil alone will manage it, no Plaquenil won't.