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About to increase pred once again...need advise

Posted , 7 users are following.

Roda_4445
Roda_4445

i have had PMR for nearly 3 yrs, though my Rheumi(US) suspects RA because of the duration. I have no joint pain, all proximal muscle achiness. I have used the DSAS method at 1/2 mg increments. This is my second flare since reaching  4 1/2 mg, this time during my drop to 3 1/2 mg. Question...should I follow what I did last time ( 4-4mg daily x 3 days, 3 -4 mg x 3 days, 2 -4mg x 3 days)or is that not necessary and just increase to 5mg? I plan to discuss this with my Dr but like forum's opinion.

Other question... I have also been on Methotrexate for 6 months. Now Dr wants me to try bio logics. I feel like I'm being over drugged and really would like to get off methotrexate. Seems to have had no effect in my ability to drop level of pred. When I was at 5 mg I felt like my pain was under control. All is about getting off the pred. Aren't the biologics equally dangerous?! Love to hear opinions! Thanks.

0 likes, 14 replies

14 Replies

  • Nefret
    Nefret Roda_4445

    Posted

    I was on MTX for two years.  It was stopped at my request and really did nothing for me and allowed a flare of GCA to creep in under the door. The only side effect I had was mouth ulcers which I just couldn't cope with (I'm a wimp about anything in my mouth, including dentists).

    If your rheumy is thinking about biologics then he really must be stuck on a diagnosis of RA for you.  I wonder if you have a positive RA factor in your bloods?  That doesn't mean you have RA - some patients have a positive return for years, but never have any symptoms.

    I still have a diagnosis of PMR/GCA after 14 years but I've never heard of biologics being used for those two.  There are other 'steroid sparers' used for PMR (they have no place in a diagnosis of GCA) so perhaps you could discuss with him? 

  • Roda_4445
    Roda_4445

    Posted

    Thanks for your input. Dr is convinced that PMR is limited to 1 - 2 years, thus I must have RA. No positive RA factor. I realize there is a fine line between all autoimmune diseases, but I feel so sure this is PMR . Initial response to pred 3 yrs ago was immediate relief.

    Sure would not have been able to cope with mouth ulcers!( my husband had them for years until he eliminated all citrus including apples !)  I think Dr had used methotrexate to allow the drops in pred but also hoping it would relieve symptoms, proving RA. Not the case. Do not relish the idea of more drugs. 

    At what level are you on pred? 14 years is a long time! This doc would have a coronary!

  • dan38655
    dan38655 Roda_4445

    Posted

    I would want to test how my symptoms responded over time to moderate-intensity, long-duration types of daily exercise before adding more meds.  When more than one medication is in play, it becomes harder to discern cause and effect from any one of them, and this may force you and your doctor into more of a random guessing game in my opinion.

    The trick can be to determine what types of exercise that can be tolerated, because you want to remain comfortable enough to do the exercise daily!

    • Nefret
      Nefret dan38655

      Posted

      For those who can, of course.  Exercise of any kind is just a bit impossible for those of us unable to get out of bed without help, unable to get dressed, unable to rise from a chair unaided.  Disabled is not the right word, it's more 'unabled' than most people think
  • Nefret
    Nefret Roda_4445

    Posted

    It's a rather long story, Roda, but between then and now I have had so many other medical conditions thrown at me that I don't think anyone knows what is causing which symptom!  Apart from me, of course.  I know very well where I hurt and why, but describing symptoms is a bit like nailing jelly to a wall - the words elude me.

    Your doc is way behind the times, there is a growing admission from the medics that PMR averages 5 years to remission.  That is just an average and the numbers are probably skewed, but even so I think he needs to keep up. 

    • eddylynn36538
      eddylynn36538 Nefret

      Posted

      I have had PMR for 10 years and now diagnosed with fibramyalgia.  My doc has had 26 years as a pmr specialist but have only recently been sent to him.  He admits it a long time but thinks a lot of the problem was not reducing slowly enough when I had increased dose for a flare up, thus never really got rid of it....going down the dead slow rate now....7 weeks to reduce by 2.5mg, then start another 7 week regime.
    • Roda_4445
      Roda_4445 Nefret

      Posted

      Doc bases his belief on his PMR patients,( Dr has been around awhile)whose PMR symptoms end within 2 yrs. Does anyone know of any medical literature that's states PMR lasts 5 +? I really want to stick with dr but I need something to convince him he's wrong. UK seems to have more info on PMR than US.

      thanks, Nefret for your input. One more thing... Do you or others out there think increase of pred at time of flare works with small increase such as from 3 1/2 to 5 or must I jump up to 12 and stick to that for short time then drop slowly?

    • Dave-California
      Dave-California Roda_4445

      Posted

      Hi Roda,

      Many seem to have the frustration and resulting pain as prednisone tapering drops into the 7 to 12 mg range. I have had a similar encounter with several ‘flares’ that occurred in the 9-12 mg range. I now believe that this is because I was not tapering slowly enough. I am on methotrexate (MTX) with the intent that I would stay on MTX for the entire time that my prednisone taper was actively being reduced down to zero and so far methotrexate has assisted me in maintaining a long taper to 4mg of Prednisone with less pain.

      Many do not like the idea of being on a disease-modifying anti-rheumatic drug (DMARD) such as methotrexate but these drugs do dampen down the underlying disease process rather than simply treating symptoms and research shows that MTX reduces the activity of your immune system which typically is overactive in PMR conditions. PMR does not go ‘away’ – it goes into remission. Saying that the symptoms ‘go away’ in 2 years seems like a very incorrect statement by your doctor.

      The way to get down to the lowest remission level is to maintain a mandatory slow taper and the “dead slow and nearly stop” concept - and along with the MTX, it is working well for me.

      If a flare occurs at a specific mg pred level I think that large increases in Pred are not appropriate – I seemed to stop the flare with a small pred increase (such as 1-2mg) and maintain the increased dose for 2-3 months before restarting the taper; and the taper dose not being more than 10% of the stable level dose you have achieved (i.e. at 5mg the taper should not exceed 0.5mg).

      After 2 years of managing PMR, I’m sure the MTX is positive benefits that aids the pred ‘taper’ process and allows me continue the slow taper without the horrible pain increases.

      Dave

  • noninoni
    noninoni Roda_4445

    Posted

    You are right about methotrexate- it helps RA but not PMR and doesn't help with prednisone taper.  
    • Roda_4445
      Roda_4445 noninoni

      Posted

      Thank you, noninoni, you give me back faith in my intuition. On 20 mg Methotrexate once a week with folic acid and I still react with dead slow method if below 5 at 1/2 mg drop. You would think if RA was the culprit I would have positive response with it!
  • noninoni
    noninoni Roda_4445

    Posted

    I am a big believer in clinical trials, at least two, that are double blind, randomized and controlled.  I found two for PMR and methotrexate online, on from the NIH, and the other I read about in a review article from the Cleveland Clinic which is a reputable  source in the U.S.  Neither study provided evidence that methotrexate helped with a prednisone taper for PMR.  I then found in another place that methotrexate was not recommended for PMR patients, even though it is a drug of choice for RA. 

          Methotrexate has its own set of nasty side effects.  It was originally developed for cancer, and cancer drugs are usually nasty! Why take two nasty drugs.?

    • VickieS
      VickieS noninoni

      Posted

      I know we can't put links here, but if you have them for the studies you're talking about, could you please private message them to me? My rheumatologist tried to get me to start on methotrexate when I saw him in August. I told him I wasn't ready to try it yet, and that we could talk again at my December appt after I saw how I was doing with my taper. I'd like to go armed with info when I see him next month!
    • Roda_4445
      Roda_4445 noninoni

      Posted

      I'd like to say Ditto to Vickie's request. That possible? I totally agree - two nasty drugs makes no sense. I just need some ammunition, tho I have no problem saying - that's it ...take me off MTX and let's accept this as PMR! 

      Thanks for your help.

    • Roda_4445
      Roda_4445 noninoni

      Posted

      Just found the studies on line. Should have looked for them myself! Thanks
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