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Weight loss in PMR

Posted , 16 users are following.

robert33625
robert33625

I recently ,"(2 weeks ago) was diagnosed as having Polymyalitis rhumatica, after suffering a sudden attack of symptoms a few weeks before. I was put on a low dose of prednisone fir 5 days and felt much better. Still feel good if I exercise a lot. My main concern is that even though my appitite is good I am loosing 1 to 2 pounds (1/2 to 1 kg) a day. Since I am 5ft 11inches and already down to 142 pounds from me normal 155pounds this can not continue moer than a month or I will weigh less than 100 pounds. I wonder I any patients have had similar experience and if so what happened? Did it stop?

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  • karenjaninaz
    karenjaninaz robert33625

    Posted

    Before I was diagnosed I was losing weight and became anemic before I was put on prednisone. I was eating well but I was in too much pain to do any more than basic self care. So exercise wasn't the cause. Somewhere I saw these symptoms as part of PMR. Also my right leg swelled. These symptoms I found listed in the scholarly literature. Once I was put on 15 mgm of prednisone these symptoms reversed and I have decent quality of life as I taper down and wait for the underlying disease to go into remission.

    if in the US consult a rheumatologist. GPs are often clueless. Mine blew me off as having fibromyalgia.

  • nick67069
    nick67069 robert33625

    Posted

    I think initial loss of weight is due to lack of sleep ( pain, etc). Most of the people actually gain weight after they are put on prednisone. At that point proper diet and/or exercise would help to keep the weight stable.
  • BettyE
    BettyE robert33625

    Posted

    Unusual weight loss contributed to my getting a very prompt diagnosis.  Once pred was prescribed the pain went completely within 4 hours. I was given 30 mgs. which I believe is considered quite high now.

    You say you were put on a low pred dose. How low? 15mgs. is a common starting dose. Now that you've stopped taking it has the pain returned?  If it has not but the weight loss has continues it doesn't sound typical PMR.  Has you GP arranged another appointment?

    • robert33625
      robert33625 BettyE

      Posted

      Thanks for your reply. I checked and I guess it wasn't a low dose. 50 mg for 5 days then stop. Dr also recomended. Celebrix once or twice a day. Not sure if its working great yet for thr PMR but it clears my sinuses right out which is helpfull since I have had that "old guys"problem of mucus for 12 years.

    • EileenH
      EileenH robert33625

      Posted

      A short course of high dose pred will not manage PMR - it is a chronic disorder and a low to moderate dose of pred is required for usually at least 2 years and often much longer. An Italian paper following up an earlier study using pred plus methotrexate found that 30% of patients with PMR still required pred 6 years after diagnosis. 

      Weight loss is often part of PMR, probably due to the inflammatory process that is part of the disorder - but it is rarely particularly large or fast. Usually it improves once the patient is on pred - but at a moderate dose (15-20mg to start with) - and the inflammation is under control. 

      If you are OK in terms of PMR symptoms having stopped taking the pred then I would suggest your doctor needs to do more investigations. Celebrex also won't deal with PMR pain - even if some guidelines suggest using NSAIDs the vast majority of patients find they don't even touch the pain of PMR. They also have some nasty side effects when used long term.

      What concerns me is

      a) your doctor obviously has not read up-to-date literature about PMR (if he has ready any) since what he has done does not follow any normal best-practice and

      b) unexplained weight loss of that magnitude is not commonly seen in PMR - it is far more likely to be found in something more sinister. PMR is not the disease, it is the symptoms of an underlying disease. In the case of the PMR we discuss here it is an autoimmune disorder but the symptoms can also be caused by other more serious illnesses, including cancers. 

      I'm sorry to have had to mention the elephant in the room - but I think you need a better doctor who knows what they are doing and preferably to be sent to a specialist theumatologist if this really is PMR as it isn't typical. At the very least you need more investigations.

       

  • kathy67492
    kathy67492 robert33625

    Posted

    I have had PMR for about 3 years. In the 2-3 months before diagnosis I was losing weight fast. I lost 18 pounds in one two week period, which was a lot on my 5'8", 140 lb. frame! Once I started the prednisone that stopped.

    Now, 3 years later, I am almost back to my original weight. I wish you the best on your PMR journey...you will find expert advice on this forum😊

  • Mrs_CJ
    Mrs_CJ robert33625

    Posted

    I was losing weight before I was diagnosed with PMR.  Then I was diagnosed and started on 20 mg of prednisone and I continued to lose weight. 

    Back when I was healthy I weighed just under 130 lbs (I'm about 5'4"wink and at my lowest I weighed 104 lbs, a loss of about 20%.   I felt like a skeleton and looked ill.

    I have found that as my prednisone dose goes down my weight creeps up.  After 4 years, I am currently on 3 1/2 mgs and I weight about 123 lbs.  I'm hopeful that I will regain the rest of my weight as I make future reductions!

    Good luck with your PMR journey!

  • shelley45866
    shelley45866 robert33625

    Edited

    I had exactly the same problem, started eating everything in sight until I could get in to see my doctor, who diagnosed the PMR and put me on 20mg of Prednisone, which slowed the muscle weight loss.  I have been on Pred for 3 months, still have to eat a huge amount of protein to keep from losing muscle, and still have some unpleasant surprises, such as losing almost an inch of muscle from my right arm in less than a week. Now at 15 gm of Pred, will probably drop to 12.5 when I see my doc tomorrow. You may need to switch doctors - the standard treatment is LONG TERM Prednisone, not for 5 days. Be sure you are seeing a Rheumatologist  I had the same questions - along with a lot of panic - before my muscle loss somewhat stabilized.  If you look at all of the replies to me, you will get some good info!
    • robert33625
      robert33625 shelley45866

      Posted

      Sorry to respond so late but I couldnt find my thread until now. My doctor doesn't like long term use of prednisone die to side affects. He has experience wit the 50 mg 5 day treatment which shocks the system in to resetting. I certainly had the classic symptoms but am improving every day. I use aleve and iboprofin as needed but not much pretty much at night only. Streching exercises and not sitting or staying in bed for very long and aerobic exercises seem

      to help the most. Luckly I get up often st night snyway. Thanks for your comments.

    • EileenH
      EileenH robert33625

      Posted

      if your doctor "has experience wit the 50 mg 5 day treatment which shocks the system in to resetting" - maybe he'd like to share it and his results with the rest of the world. It really isn't an approach anyone else has ever advocated. 

    • robert33625
      robert33625 EileenH

      Posted

      I agree it seems unorthodox.  will ask him in 2 weeks.   It really seems to work.  He is the head of our county hospital here in Illinois and well respected .  
    • kathy67492
      kathy67492 robert33625

      Posted

      I would be very interested to hear of this approach! Please report back to us😊

    • shelley45866
      shelley45866 robert33625

      Posted

      Did the 50mg/5 day treatment stop your weight loss?  My primary care doc did something similar ( steroid shot plus 20 mg of Pred for 5 days) - worked great for about 3 weeks, then everything returned when the steroids wore off.
    • EileenH
      EileenH shelley45866

      Posted

      PMR is a chronic condition - an autoimmune disorder means that new inflammation is produced every day for as long as it lasts. That is usually more than 2 years, on average 5 years, sometimes longer. A short course of steroid is useless - it empties the bucket that a tap is running into witout turning off the tap. There is as yet nothing to turn off the tap - you can only manage the symptoms by combatting the inflammation with pred, the only thing that works to date.
    • robert33625
      robert33625 EileenH

      Posted

      I don't pretend to be cured but the treatment made me muc much better.  I have been taking some NSAIDs but by doing as much walking, stretching and aerobics as comfortable I have little pain , and far less fatigue.   A few weeks ago a nap I the morning and afternoon was necessary, now not needed.  I'm down to one Aleve per day and have not needed any further prednisone.   I still have some stiffness and pain after sleeping but stretching seems to get the kinks out of my muscles and relieves the pain.  So everyone may not need to stay on prednisone long term as you suggested.

    • robert33625
      robert33625 shelley45866

      Posted

      I actually lost 5 pounds the week after stopping the prednisone.  I started eating more and adding Ensure at 350 calories and have gained it back.  It seems like everyone has different experiences and responses to treatments. 
    • EileenH
      EileenH robert33625

      Edited

      I had PMR for 5 years without pred - and kept reasonably mobile with aquafit in the mornings and a bit of Pilates and yoga, both very adapted for me. But the pain and fatigue NEVER went away. Painkillers did nothing for me - nor do they do anything for most people with the form of PMR we discuss here.

      PMR is not the disease, it is the name given to the symptoms of an underlying cause. The one we discuss here is almost certainly an autoimmune vasculitis but there are other forms that are due to other things. It is now being thought that there are at least 3 different sorts that respond to pred and that this is the reason for the differing lengths of time for which people have the symptoms: about a quarter are off pred in under 2 years, about half take 4-6 years and a few have it for even longer.  It is also thought there may be a reactive form - like reactive arthritis, which happens in response to some trigger like infection or environmental agent and then clears within a few months.

      You are not the only person who has been treated with shorter term high dose tapers for whatever reason - but most of them end up having to take pred at a low dose much longer term. There are several things that mimic PMR - including inflammatory arthritis and one form is very similar to what you describe.I do hope your remission continues - but only time will tell whether whatever you have has gone away.

    • shelley45866
      shelley45866 EileenH

      Posted

      Eileen, good info for me, since I am relatively new to this. You post gives me some ideas about other things for my doctor to investigate. Sound like you have done your homework - thanks!
    • alison14514
      alison14514 EileenH

      Posted

      hi, you may well not get my reply as your post was 4 years ago.

      i have refused steroids due to my bowel disease and risk if perforation I also have a lung disease and constantly struggle with

      infections. i got PMR 4 days after my Moderna and flu vaccine.

      i am hoping my PMR will be one of the shorter ones! i am taking every supplement for inflamation that has been researched as effective. i would love to hear from you ..any tips amd things that helped. i am a single Mum daughters at home 18 and 13 lots of animals. im not coping too well..the pain and inability to move my limbs sometimes is overwhelming.

      best wishes

    • EileenH
      EileenH alison14514

      Posted

      Still around - if I don't reply to anyone it is because of patient.info having made this forum almost unusable so most of the oldies gave up! We are mostly to be found at the HealthUnlocked PMRGCAuk forum these days which is probably one of the most active health forums around and linked to the UK charity.

      You may hope it will be one of the shorter ones - particularly if it was triggered by the vaccine - but who knows. I certainly had a flare after the second Moderna jab. Strangely, nothing after the booster I had which was Pfizer - and I have also been able to reduce my dose a lot since then. I'd been up at quite a high dose to cope because my husband was ill for the last 2 years and died at the end of October. The removal of that stress and physical effort has helped a lot.

      I can't offer much in the way of tips - I wouldn't encourage anyone to try to manage PMR without pred but I do understand why you refused pred. Unfortunately - although there is an alternative if you are in the USA, Actemra/tocilizumab is much harder to get for PMR and it too is associated with infections - anything that suppresses the immune system will be. If you really can't take pred - and I think the evidence is that pred doesn't cause perforation but masks the symptoms so a much lower threshold is required to catch it quickly - then you will have to modify your lifestyle greatly. You daughters will have to pitch in and the animals may need to be reviewed. I managed for 5 years without pred, not by choice but because I wasn't diagnosed - and it was amongst the worst 5 years of my life and a period I have no desire to return to. I was in constant pain, restricted in what I could do and at times housebound. The most effective management approach was an early aquafit class in a warm pool, preferably immediately followed by Pilates or Iyengha yoga - after which I could move. Once I was moving things were a bit better. But the first dose of pred was a miracle in under 6 hours - I no longer had to stomp downstairs like a toddler, one step at a time, and was able to walk back up, not crawl on hands and knees.

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