Can't remember if I posted on RA community or on PMR community, so I hope you all will overlook my confused state.
My last Dr. appt., April 2019 and 6 months into treatment for RA (prednisone, MTX, and sulfasalazine) my Dr. thinks I have overlapping polymyalgia rheumatica (PMR). So, I checked out the info on that community and all my symptoms line up with that, now.
The MTX was increased to 15 mgs, sulfasalazine to 2000 mgs and usually because the pred. reduction wasn't working so pain and lots of it reducing from 20 mgs of pred. I have tried 3 reductions of 5 mgs - so to 15 mgs, over the last 2 months and can't get past it. I think this is called the yo yo effect.
So, I wonder if I have both RA and PMR and I need the pred. to stay out of pain or what? Dr. got me a rheumatologist appt. for June to see if she can sort this out.
Dr. says it is imperative to get off the pred. and told me to decrease it by 5 mgs every 2 weeks until gone. As I said, I went to 15 mgs and after 2 days, horrible pain in neck, shoulders, knees. I kept at 15 for the 2 weeks and put up with it but I can't anymore and went back to 20 mgs yesterday, and today.
Takes longer and longer for the 20 mgs to take effect. It used to be only about 24 hrs. but not now. Any related advice or experience is very much appreciated.
As I am 72, apparently the 2 diseases are hard to differentiate.
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Nanna71
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Trying to reduce 5mg at a time is crazy - no wonder you are having problems and every time you try again, the worse it will get.
If you have PMR you need pred - and all that will happen if you stop the pred is that it will get worse again. Pred is the only option for PMR and not half as bad as your doctor obviously thinks.
I'm not sure of anything. The Dr. (an Internist) diagnosed RA November 8, 2018. Now, he thinks overlapping PMR. Really, the only time I feel like life might be worth living is when pred. is taking care of the pain. Thank you for answering.
There is your answer: Please MrDr, treat the patient in front of you and not your image of the patient ... QOL is all - I will take 15 years of decent life over 30 of constant pain and disability.
Oh bless you Nanna. Stick on pred that keeps you feeling well until you see the rheum in June (ha! Poet!) and we’ll pray that s/he has more compassion and sense.
“The only time I feel like life might be worth living is when pred is taking care of the pain” Say exactly that to the rheum.
Pred is not the evil drug some gps and rheumys insist it is. It's the only thing that works and you need it for as long as it takes. You need to see the gp or rheumy again and explain how much pain you are in. I was diagnosed in Oct 18 and started on 15mg but I am only just about taper down to 9.5mg and that is on the advice of both gp and rheumy. Your taper seems way too fast. Please keep us up to date with how you get on.
Thank you for posting. I was taken to hospital by ambulance at the end of October. Couldn't move anymore, lift my foot to step over the door sill, and the pain was unbelievable, and I had been that way for about 2 months without having a clue what was happening. One doctor in Emerg. gave me 50 gms of prednisone, and then a heavy duty pain killer, saying how did the inflammation markers in the blood get missed. It is a long sad story but I haven't seen a Rheumatologist yet. I will June 7th. The referral I got was to an Internist who diagnosed RA and put MTX into the mix, then upped it as it didn't seem to be working, then added sulfasalazine, then upped that. All this while trying to wean off the pred. However, the pred is what is working. I have no idea if the other meds are doing anything. I got down to 20 mgs pred. quite nicely. Then the trouble started below that. Three times. Too much pain. The Dr. referred me to the Rheumatologist because he thinks I have now gained PMR. Sorry for writing so much. It's difficult to decide what to say and what to leave out.
Also, when I feel like I can do something it is usually splitting wood or digging in the garden, or housework so I don't know if some of the pain is from doing too much or what.
Since I live alone in a remote area, I have a lot of work to do.
So he has you on mtx AND sulphasalazine AND pred??????? Three lots of nasty potential side effects because he is unjustifiably scared of pred???????????????????????
He said the prednisone is used as a bridging med. to fill the gap until the Dmards kick in for RA. He also now thinks PMR since I have responded so well to pred. and perhaps not so well to the Dmards. So, off to see the rheumatologist in 3 more weeks. My journey with all this started way back in July, 2018. No diagnosis until November. What on earth??
There is lots of advice on tapering here. I’m finding it difficult to get down past 5mg at the moment so look up slow or dead slow regimens. good luck!
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PMR, low pressure closed angle glaucoma and prednisolone
What studies are available to show a link between untreated PMR and the development of GCA?
Now I know why I am feeling so Ill.
