1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Remission

Posted , 15 users are following.

jeanne333
jeanne333

I have a question, has anyone ever gone into remission? This site quotes 2 or 3 years before remission; and my RA has decided that I've had PMR since 2011, that's 5 years. Just curious.

0 likes, 24 replies

24 Replies

Next
  • MrsO-UK_Surrey
    MrsO-UK_Surrey jeanne333

    Posted

    Jeanne, the answer is yes.  For some of us it has taken the oft suggested 2 years but for many others it has taken much longer, with the average seeming to be around 5 years.  After spending a year undiagnosed, it took me 5-6 years to reach remission and get off steroids altogether.
  • gillian_25383
    gillian_25383 jeanne333

    Posted

    Have been in so called "remission "several times but it has always returned -on and off 12years
  • christine_fay
    christine_fay jeanne333

    Posted

    have had several auto immune conditions over tha past 20 years. It took 2 and a half years for Graves Disease to go into remision. 8 years for Lichen Sclerosis to remit and I have had PMR since 2011 but not diagnose till 2012. I have not really gone into remission but am a lot better and can bear the tail end of it. I am no longer taking steroids but have them to hand just in case I get a bad time. I am getting better daily although have had a nasty virus for 4 weeks. However I will keep going as long as I can because the side effects of Prednisolone were making me suicidal.
  • ptolemy
    ptolemy jeanne333

    Posted

    I believe it is thought that fifty per cent go into remission within five years, although everyone seems to be told that is happens within two years, which of course it does for some. 
  • faye______00403
    faye______00403 jeanne333

    Posted

    I have a friend that has been in remission twice and off pred but

    had to go back on.  I'm 79 and know that I will be on some, hopefully,

    low dose the rest of my life.   My doc's aunt in Canada went into

    remission and got off pred.   Curious business isn't it?  We all

    react so differently....

  • Charko
    Charko jeanne333

    Posted

    I have been taking Pred for nearly four years.  Started out at 20 and came down to 1 mg this past month.  My Dr wants me off Pred entirely because my pancreas is dodgy and I am borderline diabetic from Pred.  I am taking 1 mg pred one day and two Ibuprofen (400) the next hoping to come off the pred entirely in a couple of weeks.  I might add I feel better on the days I take Ibuprofen!   My Dr would rather I take up to 4 Ibuprofen per day than any Pred. As for long term - we shall see.   I still hurt and my feet hurt and legs tingle but it is bearable at the moment and my blood work indicates I do not have inflammation at this time and I do not have RA which was a consideration at Xmas.  Much relieved.  I take 4000 icu of Vitamin D and 5000 icu of B 12 sublingual it sure helps my energy levels and the dose is not dangerous.  All the best, 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Charko

      Posted

      Charko, just a little warning to be very careful if you are considering taking Ibuprofen long term.  It can cause serious problems, including stomach bleeds - in my case it is highly likely that it caused chronic kidney disease.  I have had only one kidney for most of my life so perhaps i was a little more vulnerable to Ibuprofen than most but that kidney functioned perfectly.....until I took Ibuprofen for 7 months during my undiagnosed year with PMR, whereas 5-6 years on Prednisolone caused no lasting problems.  Take special care. 
    • faye______00403
      faye______00403 MrsO-UK_Surrey

      Posted

      Glad you posted this.....it seems everything out there causes

      someone horrible side effects....If we don't pass this information

      on to each other how will we know?  I'm a little leery of any

      NSAIDs period.  At least long term. 

    • Charko
      Charko MrsO-UK_Surrey

      Posted

      You are right and I do not intend to take it daily (200 mgs daily for me at the most and that is one pill!) if at all possible but what's worse Prednisone or Ibuprofen?  How much ibuprofen did you take daily for 7 months? I am pre diabetic caused by Prednisone and also my cholesterol has been affected... so I think Pred is worse for me.  Everyone is different.  Thanks, 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Charko

      Posted

      It was the lowest dose - 200mg if I remember rightly - taken twice a day on some days, especially when being told to take them when attending hospital appointments for scans etc just to get me off the bed, into the wheelchair and ambulance etc. As you say "everyone is different" and will therefore present differently with their symptoms and respond differently to their treatment.  I was lucky to avoid Prednisolone-induced diabetes although I did stick religiously to an anti-inflammatory diet which contained no processed foods, very few refined flours/sugars throughout.  I do, however, have raised cholesterol but had a bit of a problem with that long before my PMR/GCA days.  Good luck.
    • cindy63197
      cindy63197 Charko

      Posted

      Hang in there, that last every other day 1mg is the hardest, but after I stopped altogether, I started feeling even better (after the initial adjustment). I took my last dose in September, and I am still getting better, have more and more energy, and am stronger.
  • Handbrake
    Handbrake jeanne333

    Posted

    Jeanne, I'm not sure we have a clear definition of remission yet, if it means pain free at 0 prednisolone I managed for a month but pain crept back in so started low dose again. Charco makes an interesting point when he states that he feels better on his ibuprofen days than his 1mg prednisolone days. I have found recently that I'm more comfortable on my 1mg days than I am on 2mg days...haven't quite worked out why that is.
  • Charko
    Charko jeanne333

    Posted

    Possibly because the 2 mgs holds over longer to the next day than the 1 Mg?  I don't know if Pred is pretty much instantaneous or whether it is accumulative?  Anyone know?
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Charko

      Posted

      Pred leaves your body in just a few hours but the anti inflammatory effects last between 12 and 36 hours.  So some will be lucky and find that their daily dose lasts and keeps the pain at bay until the next daily dose whilst others will struggle because the lasting effect wears off sooner.
    • Charko
      Charko MrsO-UK_Surrey

      Posted

      Thanks this is something I have wanted to know for a long time!  So why does Pred mess with your Pancreas?   Surely not at 1 mgs?
    • Anhaga
      Anhaga Charko

      Posted

      Odd that the greatest anti-inflammatory, prednisone, can occasionally cause acute inflammation of the pancreas.
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      It sure is! But surely it would be the long term use at higher doses than the very small dose of 1mg that Charko is talking about? (just speculating Jean, I actually have no idea!)
    • Charko
      Charko FlipDover_Aust

      Posted

      Of course, but I have been on the drug for nearly four years with an average of about 5 - 10 mgs and I am a woman weighing 130 pounds.
    • FlipDover_Aust
      FlipDover_Aust Charko

      Posted

      like I said, I don't know anything about the effects of pred on the pancreas other than what I read, but I wouldn't have thought the 1mg would make any difference at this stage - the damage has already been done?

      PS I'd kill to be 58kg!! lol

    • Handbrake
      Handbrake Charko

      Posted

      good point Charko, perhaps I should try 1.5 mg
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.