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

Prednisolone and breathlessness

Posted , 11 users are following.

humpalumpa
humpalumpa

I have been on a reducing course of this medication for 8 months now and have had the odd side effect ie depression and mortality fears , however over the last two/three weeks i have noticed i am becoming more and more breathless even when walking (which i like to do), my question is, does anyone on this forum know if  this side effect is reversible once you stop  taking this medication, i only have three more monthe left to reduce and i am so desperate to get off this and to hopefully start to loose some weight again and to stop being puffy when walking.

Thank you for reading my post and i would welcome any replies .

0 likes, 23 replies

23 Replies

Next
  • EileenH
    EileenH humpalumpa

    Posted

    Why are you on pred in the first place and what dose are you on?

    Pred often gets the blame when it isn't the culprit - GPs are often very lazy in that regard. 

    I have been on pred for years and in January last year had a flare which made me unbelievably breathless as soon as I walked up even a very gentle slope. It was increasing the pred that sorted it out - the symptom at least, we never did find anything to blame. I have been able to reduce again, breathlessness hasn't been a problem again.

    As far as weight loss is concerned - try cutting carbs drastically. Many of us on this forum have lost weight or avoided putting it on in the first place but cutting carbs - all processed carbs, even fruit and root veggies are things to keep to a minimum. Fluid retention means adopting a low salt diet - it also works.

    • humpalumpa
      humpalumpa EileenH

      Posted

      Hi Eileen,Im on Pred for PMR

      My diet and eating habits do not concern me, as i follow SW and although initially lost a few stones , since being on Pred i have only just managed to loose a few pounds here and there, my best loose week is always my reduction week so i am managing my weight issues thank you very much.

      I, came on here to see if any one knew if the breathlessness clears up once the steroid regime is complete,so if you have managed to reduce again, are you off the drug or on a maintenance dose ?

    • EileenH
      EileenH humpalumpa

      Posted

      I asked because if you have PMR I hate to sound depressing but there is no guarantee at all you will be off pred "in a few months". PMR is a chronic disorder, it usually lasts at least a couple of years - and more like 5 years is the expectation for more than half of us. The pred has cured nothing - it is managing the symptoms that the underlying autoimmune cause of PMR leads to. As long as you are taking enough pred to manage the inflammation you will have no symptoms - but if you reduce too far then they will resurface. PMR starts when it likes - it goes away when it likes and nothing you can do will change that. Unless you are very lucky.

      The vast majority of us don't have breathlessness problems. It is a listed side effect of pred but not that common. If you didn't have it at higher doses, it is surprising it has developed at lower doses.

      My breathlessness appeared overnight after me being at 5mg for months - and it needed 15mg to stop it. After just over a year I have managed to get back to 7mg. I hope I will get lower - but I don't know and will just keep trying a small reduction until I get to the end point. 

      I mentioned the weight problem because YOU mentioned a weight problem. You said you wanted to lose weight again. 

    • humpalumpa
      humpalumpa EileenH

      Posted

      So in essence Eileen your breathlessness developed overnight after being on 5mg for months and mine developed overnight after dropping to 4 mg on my reduction plan set by my Rheumatologist ,it does indeed appear that this PMR does exactly what IT wants to do to us, and we just have to put up with it until IT decides to leave us .

      My Rheumatologist wasnt even quite sure if i had PMR, or if it was FM, but my ESR levels where raised  so she decided i would benefit from a course of Prednisolone , i was reviewed after two months and my ESR levels wher within the normal ranges so she was then convinced that i was on the right treatment although there are other factors that can increase your ESR Levels ??? so here i am on this drug, that i may not need to be on, as it could be FM that i have, and that doesnt respond to Pred !

      Anyway enough moaning from me , good luck to you, i hope you get relief from your symptoms.

    • EileenH
      EileenH humpalumpa

      Posted

      You don't get raised inflammatory levels with FM and pred has no effect on the symptoms of FM. If your symptoms went away with pred - it wasn't FM. Doesn't mean it was definitely PMR - but it wasn't FM!

  • maureen_33509
    maureen_33509 humpalumpa

    Posted

    I too am breathless and yourpost could be mine, 
    • humpalumpa
      humpalumpa maureen_33509

      Posted

      Its awful isnt it? and i just want some words of comfort,, that hopefully when i come off it as im assured by my Rheumatoligist i will , that my breathlessness will recover.

      Why are you on it, and how long have you been on it ? 

      Thanks for your reply , nothing positive as yet only remarks about how to manage weighht issues, which i am pretty switched on about , so letd hope we get some positive answers to our problem .

      good luck .

    • EileenH
      EileenH humpalumpa

      Posted

      The question I asked was totally relevant. I'm sorry if I have offended you.

  • liz12234
    liz12234 humpalumpa

    Posted

    Hi there, how long have you been on this forum, Eileen is one of the most informed member for PMR ( and other illnesses). Most of us can only speak of our experiences which differ vastly. I am suprised that you think you will be of pred in 3mths i dont think anyone on here has made it in the 11mths you quote! I have been on it for 2yrs 4mths and now following the DSNS method which certainly seems to work for me i am at 4 1/2 and hopefully by the end of the year will be down to zero, fortunatley i have a GP who lets me get on with it but is also there for advice. I am sure most of us have felt puffy at some time or other, the key is to rest when you can. Do let us know if you are off pred it 3mths im sure i am not the only one that will be interested. Good Luck its not an easy journey.
    • humpalumpa
      humpalumpa liz12234

      Posted

      Hello Liz, i have only just come on this forum and Im sure Eileen is a very informed member of the forum, I can only tell my story as i know it to be  , and that was, that i would be put on this drug and reducing plan until i was slowly weaned off it , i presumed maybe wrongfully that after i reduced to 1 mg i would be off the drug if my ESR levels where still within normal ranges, im just so confused and worried about this breathlessness which appears to have come on so sudden,a trip to the doctors is on the cards i think .

      thank you for your reply .  

    • EileenH
      EileenH humpalumpa

      Posted

      Your ESR is in range at present because you are taking enough pred - and it will continue that way as long as you are taking enough pred. You may be one of the lucky ones and continue to zero without a problem. I hope you are. 
    • humpalumpa
      humpalumpa

      Posted

      Ahhh Eileen you didn't offend me I'm just feeling pretty low at moment and a bit prickly , I just wanted to know if anyone has successfully come off prednisolone after having breathlessness,

      I am an ex SRN so know a little about a little now , as I left NHS about 40 yrs ago so a lot has changed and I'm not up to parr with it all .

      So I apologise if I was curt or off hand

    • EileenH
      EileenH humpalumpa

      Posted

      No offence taken - would take far more than that!

      It's a question I doubt we can answer - it really isn't that common a problem. That's why I asked the questions I did - not noseyness but wanting the background.

      There are a lot of causes of breathlessness and it is all too easy to blame pred when it isn't. Last year mine was a flare - probably of GCA affecting thoracic arteries. Originally I had short-lived episodes of breathlessness that definitely wasn't pred - I wasn't on it. It turned out to be due to atrial fibrillation caused by the autoimmune part of the PMR. But although I had slight sensations of palpitations at times, that didn't always coincide with the lack of puff.

      But people DO get off pred after a time - whether they'd had breathlessness is another matter and they are unlikely to tell you as there are only a few people who are off pred who still frequent the forum. They are getting on with their lives. 

    • humpalumpa
      humpalumpa EileenH

      Posted

      Then maybe my breathlessness is also caused by AF ,or a million and one other things! i have had so many little episodes recently , which when i read the leaflet, it clearly states they could be associated to the Prednisolone , of course quite rightly as you say these things may have nothing to do with the Pred . so i will suck it up and  see

      T,hanks for all your help im off to my bed now as im exhausted today.

       

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.