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

Off the wall side effects??

Posted , 16 users are following.

lynda62707
lynda62707

This probably is gonna sound insane, but has anyone out there experienced some very strange, nondescript type of side effects from prednisone? ie interior of mouth feeling very hot and sorta tender? Also, numbness/tingling in feet and hands? Pls. let me know. I'm feeling like a hypercondriac!

0 likes, 58 replies

58 Replies

Next
  • kathy61958
    kathy61958 lynda62707

    Posted

    Oh my goodness! I have all of those and a few more! My short term memory is kaput! My hair is falling out, and my temper is very short😭

     I’m over a year into my diagnosis and prednisone has been pure hell in my life😔

    • lynda62707
      lynda62707 kathy61958

      Posted

      kathy, thank you, thank you, thank you! Omg! I felt like such a whiny, complaining looser when I put that out there. I'm glad I did tho as I was beginning to think I was losing it! My temper has also been short, and I don't even HAVE a temper! Lol

    • ClaireJG
      ClaireJG lynda62707

      Posted

      I’m far more snappy than I was, but I was worse at higher doses. I find I also get quite emotional and sensitive, which is annoying. As for tingly fingers and toes, I’ve put that down to my “atypical” PMR, which is apparently atypical as my hands and feet are involved. I had excruciating pain and pins and needles in my fingers before I started on Pred and it pretty much resolved when I started Pred, but now I’m at 8.5/9mg I’m needing my night splint again. 

      I’m hoping that my less than perfect short-term memory will improve once I’m off Pred. I’ve read about Steroid Dementia Syndrome, which is another cruel effect of the steroids. I’m hoping it’s incredibly rare...!

    • lynda62707
      lynda62707 ClaireJG

      Posted

      Hi ClaireJG...Emotional??!! Omg..can't even begin 2 tell you. I cried like a baby yesterday at Sarah's leaving "the View" on tv! Nutz! Here's the deal guys, I know I may sound a bit "flippant", but I'm trying to bring a bit of levity to a crazy, not terrific situation. I hope I don't offend anyone, this is how I deal w/things I can't control too well! Btw, woke up 1/2 hour ago with much stiffness and pain in my fingers and hands and a Splitting headache😠. Just took 5mg pred.

  • Tinapoly1
    Tinapoly1 lynda62707

    Posted

    My 3 fingers in both hands with the palms are going numb with tingling for several months, mostly on the left & occasionally a 4th finger joins the others when it happens. My tougue swells once or twice a week with sores on the side . My stomach is upset every day so I now take a half of an Imodium. You are not alone.

     

    • Tinapoly1
      Tinapoly1 EileenH

      Posted

      No Eileen, It is the middle ,ring ,& pinky fingers on both hands with my palms. 

    • EileenH
      EileenH Tinapoly1

      Posted

      Then it could be ulnar nerve entrapment - it supples those fingers. Worth a though - it could be a neck problem.
  • r.d.s26296
    r.d.s26296 lynda62707

    Posted

    I have a dull ringing noise in my ears. Sort of like a whine from a radio. 

    My face is like a round moon, very swollen, which could be the reason for the noise in my ears. (The swelling could be pressing on the blood vessels inside the ear )

    I'm now on 18mg Prednisone...

    My Rheumatologist thinks I have Rheumatoid Arthritis , so wants me to take methotrexate.......I have just done a CCP anti blood test to confirm it's RA.  

    Saying I don't have pmr is a mistake on her behalf. 

    I know that the attack came so suddenly, couldn't move in bed, like my whole body froze up. Couldn't pull my underwear up, sit or get up , comb my hair. Excruciating Pains in shoulders, upper arms ,legs hips. Etc etc. 

    That was all 5 months ago. 

    • margaret22251
      margaret22251 r.d.s26296

      Posted

      Hi you can have both, i have pmr,OA and RA on mtx.

      I dont like it but it gives me a life, i wont let them increase the mtx, as the are meddling with my doses od pred one minute it goes up and the next they want to decrease it at a fast rate. 

      I went to see my doctor and told her what i am doing, and she said i will have to inform the hospital, and i just said ok.

      Its your body i have learnt to listen to my now the longer i have pme, and with the help of Eileen and many other people on this site i have also learnt to tell the doctors. Good luck

       

    • val26097
      val26097 r.d.s26296

      Posted

      I also have a high pitched hissing in my head or ears. Drives me mad when all is quiet at 3am. I am quite new to GCA(1 month) an currently on 50mg prednisalone daily reducing again tomorrow to 40mg. Pleased it is possible side effect of steroids. Irritable also, very tired and no energy. As for sleep...........get to sleep OK but wake up through the night.
    • EileenH
      EileenH val26097

      Posted

      It is also a possible symptom of ear involvement in GCA.
  • EileenH
    EileenH lynda62707

    Posted

    Pred can cause some strange things! I have heard of a few people complain of a sore mouth. It can cause tingling too.

     

    • EileenH
      EileenH

      Posted

      Should also have said, your hands could be carpal tunnel syndrome which often happens alongside PMR. 
    • lynda62707
      lynda62707 EileenH

      Posted

      Holy moly!! Sooo many different side effects! Ehy didn't my Rheumy advise me of at least Some of these? So grateful I found. this forum. Btw...its 3:38 a.m. as I write this. I guess insomnia is another side effect?!

    • EileenH
      EileenH lynda62707

      Posted

      Half of them don't know!! We find out by experiencing it and then looking in the medical literature!!!!

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.