Rheumy #3

Posted , 9 users are following.

I've had PMR for 2 years now.  My first rheumy moved after about 8 months and my 2nd rheumy retired in late May.  Today I had my 1st appointment with rheumy #3.  At first I thought things were looking pretty good.  He listened and said it sounded like I had a good grip on how to handle the PMR and that my reduction of prednisone seemed to be going slowly but successfully. He discussed how effective prednisone was and how the side effects varied. 

I was starting to tell him how well my reduction has been going the last months (at 9 mg, working towards 8.5 mg now) how I was finally below 10 mg without problems.  At that point he kind of cut me off and said I needed to just take pred in the evening instead of a split dose and needed to get below 7 mg quicker so the risks of side effects were less likely.  He said he was going to put me on Diflunisal 500 mg twice a day to help fight the inflammation so I'd be able to reduce the pred quicker.  He said it might be a bit expensive and I took that opportunity to say I'd check out what it'd cost me and decide if I would use it or not.  Whew - he caught me off guard.  Why does a new rheumy ALWAYS want to put you on a new prescription?  I looked up Diflunisal and it sure sounds like ibuprofen to me.  And 2 pills a day will cost me a mere $3 a day!  Forget that.  I'll be emailing him a note that I'm satisfied with my progress with just the prednisone and am going to decline to take the new prescription.  If he doesn't like it so be it.  Depending on his response I may be looking for rheumy #4.

I figure if things are going relatively smoothly right now, why mess with success?

1 like, 15 replies

15 Replies

  • Posted

    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!!

  • Posted

    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.
  • Posted

    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***!

  • Posted

    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!

  • Posted

    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.  

  • Posted

    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?

  • Posted

    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).  rolleyes

    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.  

    • Posted

      It's just so frustrating to go in, figuring it's a simple follow up appointment and probably a blood draw, and instead get hit with a new treatment regime added on!  I didn't know what the new drug was but it sure didn't feel right - I knew that much.  Once I looked it up I knew for sure I wasn't liking the direction he was taking me.  

      Monday (tomorrow) I'm making an appointment with my Physician's Assistant (we're short on doctors in our rural region).  I trust her and just want to explain what happened and want to be sure that she'll be willing to write the prednisone refills for me if I don't go back to Rheumy #3. 

      It doesn't hurt that she was a classmate of my eldest daughter and I knew her parents when they lived here.  I'll work any angle I can to keep this reduction going smooth as it currently is.  For sure there will be more bumps and hiccups but I'd rather have them later than sooner.

  • Posted

    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.lol

    • Posted

      Hallelujah!! She sounds like a real keeper! And I don't think I'd go back to Rheumy #3 if you paid me to!!!

    • Posted

      What a relief got you Rheumy 3 did sound a bit rank. I wonder if your 
    • Posted

      One interesting side note - early in my conversation with my PA, she recited the usual "the average person with PMR takes around 2 years to get over it".  I recited chapter and verse of the research and studies that showed 2 years applied to only 20% of patients at best and the other 80% were averaging over 6 years duration.  She said, "I did not realize that.  I think I better get more current on this."  I'm thankful she was accepting of my info but it does amaze me how that "2 year" statement seems to be burned into the brains of most of the medical profession.

    • Posted

      WELL DONE Raven! Good for you for being so tenacious in your handling of YOUR own health and your own life! I think we all need to take a page from your book! Keep on swimming, swimming, swimming!! Lynda
    • Posted

      Re your comment on dropping from 16.5mg to 15 and experiencing bad pain, once I arrived at 16 I could only drop every month by half mg as I am very steroid sensitive which you may be too.  Dropping a half every month has proved very successful for me, if slow.  Once I reached 7.5mg I have to stay on a half drop for 2 months.  At the slightest sign of pain, I quickly go up a half and stay there for a week or 2.  I have just dropped to 6.5 and no pain, so SLOW BUT SURE.
    • Posted

      Thank you diana, I'm afraid I too may be steroid sensitive. Everything I've experienced thus far on prednisone has happened very quickly, from the relief I felt to incredibly awful side effects! My problem now remains the fact that the pred. is quickly exacerbating my possibility of losing my eyesight in one eye. Talk about being caught between a rock and a hard place!!

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