Rheumy #3

Hi raven, I agree with you completely! "If it ain't broke, don't fix it"! Lol...I don't know why it seems many doc's want to "mess" with things. Seems to be kinda the nature of the beast! But if I were you, I'd be doing EXACTLY what you're doin. You know your body better than anyone. Fyi...I'm on my 2nd reuhmy!!

You are right Diflunisal is an NSAID like Ibuprofen. It is suggested that it should not be taken with steroids, also it does not normally have any effect on helping PMR. If he wanted you to reduce faster I am surprised he did not try a DMARD such as methotrexate, not that it always works for everyone. It is just the course a lot of rheumies take. As you say at first he sounded quite sensible then he went and messed it up! I assume he will not know if you continue taking a split dose if it works for you.

I couldn't agree with you more. And I looked up that drug because I've never heard of it and you're right it is an NSAID. It is nothing more than Ibuprofen or Aleve. And taking it regularly will likely cause you to have stomach problems. If you do end up having to look for another rheummy make sure you check them out on health grade. I have had a lot of success using health grade. When I found my rheumatologist I looked her up before I ever have my appointment and I read such wonderful things about her and I have not been disappointed. And on the flip side I was referred by my doctor to a podiatrist and I looked her up on health grade and nobody had anything good to say about this woman. But since I didn't feel I had much choice I went ahead and kept my appointment with her. Once again I was not disappointed. She was a B***!

If  I were you I would just carry on with your slow and careful taper which is successful and not bother with the rheumy.  I do my own taper depending how I am feeling.  I haven't seem the rheumy for 2.5 years as he agreed I could self dose having reduced me far too fast and my very nice GP just renews the perscriptions as and when.    I  reduced half mg every 8 weeks once I reached 8mg as it was getting harder for me and  if I start to find return of any symptoms at all, I will go back up a half, leave it for a week and try again.  There is no need to rush the taper as that won't work.  Slowly but surely is the answer and NSAIDS should not be taken with pred anyway.   I would say keep going as you are, take nothing extra and be a happy tortoise, not a hare.    I have had PMR for 2.75 years, I am on 6.5mg and my joy will be when I manage to get down to 5mg sometime in 2019.   Good luck!

PS  I forgot to say that I learnt how to do a split dose from the forum very early on which has worked perfectly for me.   If it works for you why should you change it? Some people can go 24 hours on one dose and others can't.  

I think I'd be looking for No 4! Before leaving though - send him these links:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

and point out they don't suggest adding extra medications that are very unlikely to make a difference at any stage - and certainly not at under 10mg.

My husband and I were talking about this desperation on the part of some doctors to add medication - I must have been reading an article and had a paddy about it! He's as anti as I am. After 2 years and at 9mg there are minimal side effects with pred - adding an NSAID only adds to the risk of gastric effects and possibly cardiovascular ones:

"Diflunisal can increase your risk of fatal heart attack or stroke, especially if you use it long term or take high doses, or if you have heart disease. Even people without heart disease or risk factors could have a stroke or heart attack while taking this medicine."

And pred is one of the medications listed under interactions - that's normal, NSAIDs and pred aren't a good mix. Nor do they usually d anything for PMR.  So why use one?

I wouldn't be giving this person a second chance.  If he didn't know enough that nsaids are contraindicated with pred, let alone one with serious possibly life threatening side effects, and was so keen to have you taper more quickly despite the high chance of a flare, then he isn't fit to treat PMR patients.  And he didn't even want to let you continue your own, hitherto successful, method of tapering (dose splitting).  

As long as you can get your necessary pred supply, take your time finding the perfect doctor!

P.S. Potential for those types of side effects are the reason I never took ibuprofen, even pre-pred.  

Update:  I had my appointment with my PA (physicians assistant) yesterday and it went well.  I explained in detail how I'd reached this point, how well the DSNS reduction was working for the pred and how Rheumy #3 was going to screw everything up if I followed his instructions and prescriptions.  The PA was very receptive of all the info I provided and said she would do the prescribing of the prednisone from here on out.  I just had to promise not to go back to Rheumy #3 or she could get in trouble with him if he found out she'd taken over the prescribing from him.  I said there were no worries about that!!!

So she's letting me handle my own reduction schedule, will fill my prednisone requests whenever I need refills and has another Rheumy (from further away) that I can see if I ever feel the need.  YAY!  It's crazy - something that should be so simple to accomplish but I feel like I won the World Cup.