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Does predesalone cause different side effects the longer you take them?

Posted , 13 users are following.

TIsser
TIsser

Am just coming up to 2 years Pmr. Up till know the side effects have been few. The usual curly hair, longer nails, chubby face, weight gain.  The latest just starting stomach cramps, thought it might be the result of cutting down on amount i eat, but I get cramps before I eat and after. Have cut down to 7.5 preds am cutting down slowly. Anyone else have this problem?

also windy tum.... 

0 likes, 27 replies

27 Replies

  • iellen32
    iellen32 TIsser

    Posted

    I do not know Predesalone here in US- would like to help thouh.

    Wish you will get soon the answer you need, you will!

    • ptolemy
      ptolemy iellen32

      Posted

      It is prednisone normally in the US, which gets converted to prednisolone by the liver. In UK it is normally taken directly as prednisolone. 
  • ruth62999
    ruth62999 TIsser

    Posted

    I'm not sure.  Years ago before I had PMR I had an allergy problem; my GP recommended prednisone.  It was great, soon I was much better.  Then a few years later I had another allergy problem and asked my GP for prednisone and he refused; he said it had too many side effects.  Well I didn't think too much about it until I was diagnosed with PMR and the Rheumotoid Dr. recommended prednisone.  I  hadn't forgotten what my GP told me.  That is one reason I am so reluctant to take prednisone.  Then when I started searching the internet myself I understood why.  I am not on prednisone, but I did discuss it with my GP (same one I had years ago) and he basically he said you have to choose the lesser of the two evils.  But I am still afraid to take prednisone.  I'm not saying I will never take it again, but just not now.  In no way would I say you shouldn't take; each to his own.  Just research it.  Wishing you all the best...
    • ptolemy
      ptolemy ruth62999

      Posted

      If I had not taken pred for PMR I think I would be in a wheelchair by now living in a care home. At least with pred I can live a reasonable life although I do have to take it easy and thankfully the dreadful pain has been suppressed by the pred. There are a lot of medicines that have side effects, in fact most of them, with steroids it is highly unlikely you will get all of them, if any at all. The trouble with not taking pred is that you are leaving your body open to inflammation and could increase the likelihood of other problems. Also if you get GCA and do not take pred you could go blind. 
    • constance.de
      constance.de ruth62999

      Posted

      I have never heard of anyone with having a definite diagnosis of PMR who has been advised not to take Pred.  Pred is the only thing that takes away the pain.

      For a few of us we could not get out of bed, climb stairs, walk more than a few yards, etc etc.  Without Pred we would be bed/housebound.

      I have had PMR for 4 years (admittedly atypical) and cannot get below 5 mgs.

      DO, DO be careful!

      Good luck.  Regards fr Constance

  • Edulm
    Edulm TIsser

    Posted

    Tlsser,  based on what my doc tpld me and what I've further read the adrenal glands produce anti-inflamatory hormones. Prednisone takes over this function from the adrenal glands.  Long term use of prednisone can caused increased appitite, weight gain, increased blood sugar etc.  i was on prednisone for a short period for my PMR  2 years ago but my doc discontinued my use.  Now I just take oxycodone which helps a lot.
    • ptolemy
      ptolemy Edulm

      Posted

      I personally do not believe that oxycodone would help PMR, but it is a good analgesic for other things. I think what it is helping with is something else. 
    • linda17563
      linda17563 Edulm

      Posted

      My sister`s doctor wouldn`t prescibe Oxycodone for pain, because it being an opiate and very addictive....it seems it`s finding the lesser of the two evils!
    • ptolemy
      ptolemy linda17563

      Posted

      I don't blame your sister's doctor for being wary. It is not the sort of drug you want to be taking if you can help it. 
  • maid_mariane
    maid_mariane TIsser

    Posted

    I disagree that it is unlikely that you won't get any side effects from prednisone, just the opposite. Most of us do get side effects and it is the few who don't. My running joke is I've got most of them except hair loss, I've gained facial hair, insomnia, mood swings, hot flashes etccccc...

    .

    Mariane

    • Edulm
      Edulm maid_mariane

      Posted

      Golly Mariane, you better get off the pred.  I was on it a short while before my doc took me off even though it worked.  Good luck.
    • maid_mariane
      maid_mariane Edulm

      Posted

      This is my 3rd time writing my reply. 😬

      Most of us have side effects and fortunately i can keep my mood under control by swimming which also helps range of motion. Well most of the time.

      There was a discussion as to longevity of pmr after diagnosis to how long you think you had pmr pre diagnosis. I believe now i had pmr for up to 1 yr with the last 3 months of hell in pain before prednisone.

      Only prednisone works they gave me pecocsets and it did nothing. With my sensitivity it will take me 2.4 yrs to get from my now 17mg to 10mg so do the math to get lower. This is not a 2yr disease for me and it took me from September to get to 17 from 20mg. I'm not counting😠 i thank god for thiese forums.

      Consider yourself lucky and if your not on prednisone maybe you don't have PMR? I've not heard of anything else that works on our inflammation.

      Good luck

    • ptolemy
      ptolemy maid_mariane

      Posted

      I think I counted that I had fourteen side effects, the one good one being curly hair! The sensitive teeth went quite quickly though and the hot sweats have improved.
    • FlipDover_Aust
      FlipDover_Aust Edulm

      Posted

      We would all love to get of the pred! Clearly you either didn't have PMR or your pain levels were no where near what some of us experience. Without pred I'd be in a wheelchair at home - with it I'm almost back to normal and working full time. I'm happy to take the side-effects, even the cataracts and pre-diabetes.
  • Flutterbie57
    Flutterbie57 TIsser

    Posted

    Yes Tisser I have developed cramps, bloat, burning reflux in the last month or so (have been on pred for nearly a year and on 10mg now). I have other side effects which are trivial compared to the pain I was in without pred, but my new health problems are making me really miserable. I am on my 5th different drug to help my new problems. None have worked well. I am taking pro biotics and curcumin as well. I am about to push for tests to find out what the problem really is. If I find a cure I will let you know. If you find something helpful to cure your problem please let me know.
    • jan21306
      jan21306 Flutterbie57

      Posted

      hi Flutterbie and Tisser,

      I have had PMR and have been on Pred for 20 months, now down to 7 1/2 mg.   I have been having stomach cramps for the last couple of weeks.  I put it down to the fact that i have also gastritis and H. pylori, but perhaps the cramps are due to the pred ?   I am finding it difficult to eat and have lost 22lbs.   I also am getting reflux and horrible heartburn, so I am on PPIs and ranitidine.  It is all very uncomfortable and i am very fedup with it all.  i also have lots of other side effects, like high blood sugar and anxiety.  I have woken up this morning with lots of little red pinprick marks on my body !  But, at least I no longer have the awful PMR pain, just a bit of aching and stiffness and the fatigue is bad.

      As you can tell, I am not feeling too cheerful at the moment !

    • Edulm
      Edulm jan21306

      Posted

      Golly jan21306 you are really suffering and I synpathize with you.  Maybe you should consider discontinuing pred.   My case of PMR is different and, as you may have read, i'm not on pred.  Good luck.
    • Buffy61
      Buffy61 Edulm

      Posted

      You don't just 'discontinue prednisone'!!

      Perhaps, as has been suggested, you don't actually have PMR.

      Prednisone is the only thing that takes away PMR pain! No other pain killers seem to do it!

    • ptolemy
      ptolemy Edulm

      Posted

      Edulm, I don't think you should be suggesting that someone should stop taking pred unless you are qualified to do so. Sadly pred is the only thing available to alleviate the PMR pain, so if you stop it you are back to square one. Pred has over eighty side effects and many of us will have some of them. in comparison to the excruciating pain of PMR it is a price we are prepared to pay.
    • Edulm
      Edulm ptolemy

      Posted

      I'm not suggesting she discontnue pred w/o her doc's advice.
    • Flutterbie57
      Flutterbie57 jan21306

      Posted

      We are in the same boat at the moment Jan. Have the PPIs and ranitidine helped you? I have cut out so many foods as well, but I am a little hopping mad that I have not lost a single ounce in weight like you. Not really - I still have a resonably good outlook on life, and I do realise that I now have to be assertive and push for tests for my new problems. My Dr did think it would be because of pred, but we need to overcome our new problems or we will be in more trouble.

      ​Edulm were you in severe pain which altered your life considerably when you were diagnosed with PMR ? And if you were, how have you overcome it ?

    • jan21306
      jan21306 Flutterbie57

      Posted

      Flutterbie, I  just replied to you and it has disappeared!  That is so annoying!

      I will start again !   Yes, the PPIs and the Ranitidine have helped to get rid of the burning pain that the gastritis caused.  I shall be starting the antibiotic treatment to eradicate the H. Pylori soon.  I had an endoscopy which found the h. pylori and also an ultrasound of my abdomen which was clear.

      i have found that protein drinks you can buy from the chemist have helped with my diet.  They make some without dairy which is very helpful.

      Do you get a pins and needles/tingling in your feet and legs too ?  Sometimes it is very fierce and painful, other days it is not so bad.  My doc and rheumy both say it is a side effect of Pred.  They also said that the Pred

      had brought on the gastritis, together with another med I am taking which also affects the stomach.  Even though I take them with food and the supposed protection of the PPIs !!

      The cardiologist thinks that the inflammation in my body has brought on my arrythmia.  She says that if I can get rid of at least some of the inflammation she will be able to reduce my beta blocker.  So i remain hopeful.

      i hope that you can find out what is causing your digestive problems.  I will be in touch if I find out anything more.  Best wishes to you

    • Flutterbie57
      Flutterbie57 jan21306

      Posted

      Thanks for that Jan. I know I need some  investigation done, but I always have to push my Dr for it. I know I should change but I'm in a small time with not much choice.
    • Flutterbie57
      Flutterbie57 constance.de

      Posted

      confused​ I'm getting good at it - I have a little 2 year old tantrum in my head, then tell myself stress will make me suffer redface​.

       

    • Edulm
      Edulm Buffy61

      Posted

      I was on pred several years ago so I'm aware withdrawal is a slow process.   My internalist and a rheumatologist insists I have PMR albeit an unusual type with feeling terrible at times instead of having the pain.  I had no idea so many people suffered from PMR.
    • FlipDover_Aust
      FlipDover_Aust Edulm

      Posted

      I find it almost impossible to believe that you have 'real' PMR if you can manage without pred. Personally I'd be asking my Dr (or find a new one) to do more investigations and find out what's really wrong with you because it seems like they've just made this one up to give what ever you have 'name'.
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