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New PMR patient and I have 2 questions / concerns about pred side effects.

Posted , 8 users are following.

susan08542
susan08542

I have been on 15mg, starting 3rd month for PMR. My doctor wants to begin slow taper after Christmas. GCA has been ruled out. But I am having daily headaches, not severe, yet really cause much discomfort. And I have random events of feeling too hot. NOT like hot flashes or night sweats. Would appreciate any input or suggestions! Thank you in advance.

2 likes, 15 replies

15 Replies

  • ptolemy
    ptolemy susan08542

    Posted

    A side effect of pred can be headaches. I never had headaches before pred, but they started when I took pred. The hot flushes are awful, one of the worst pred side effects I reckon. I used to pour sweat, you are lucky you only feel hot. As you reduce the pred things get better.
  • EileenH
    EileenH susan08542

    Posted

    The hot "flushes" are perfectly usual - they may be the PMR, they may be the pred, they may be both. I'm having them at present - lord only knows why - but they aren't really flashes or night sweats either but just being too warm.  

    What are the headaches like? Do they respond to paracetamol (for example)? One of the side effects of pred is headache I'm afraid, But having been at 15mg for 3 months and if you have no PMR-type symptoms it is time to try a reduction - preferably in small steps, 1mg at time is fine if you are nervous.

     

  • maid_mariane
    maid_mariane susan08542

    Posted

    I had major headaches at the beginning so they ruled out GCA. It took time for my body to get use to the prednisone and the headaches left. Just now at 11mg have headaches started back occasionally but when they left I was 2yrs headache free.

    As for being hot that is me. I never use to sweat and do now and body temperature is hotter than ever.

    Your not alone.

  • susan08542
    susan08542

    Posted

    Thank each of you for encouragement and equally important the validation . Not much support on home front. Attitude I am on medication and thus all is well! I find it hard to be cheerful when I am both exhausted and in pain . So thankful for this forum and group. I am trying to Smile, if just for myself.
    • Frit
      Frit susan08542

      Posted

      Sorry you are having a difficult time . Just to share I started on 15mg Pred but My GP reduced dosage by 2.5 mg for first two months and then by 1mg now on 7 for six weeks . So may be a good idea to talk to your doctor about trying to reduce - so far I am fortunate not to have had a flare up    - GP has advised to increase by 2mg if and when one occurs. When I find my spirts flagging I think about all those memories and small things that happen each day that give pleasure or have made me happy. Accepting the fatigue is more difficult but try to be realistic about what you are able to achieve - nothing else matters as much as getting through this and the best advice I have ever been given was to listen to your body. Do hope this helps a little and 

      good luck .

    • susan08542
      susan08542 Frit

      Posted

      Thank you. I need to learn to listen to my body and stop before I have over done it. Learned quickly if I push myself one day it takes a whole day or two to regain energy. Good Luck to you as well.

    • EileenH
      EileenH susan08542

      Posted

      I have had PMR for nearly 14 years (yes, sorry, it does happen but only to about 5% of us) and OH has only just cottoned on to how much housework kills me! I got an iRobot vacuum cleaner a couple of weeks ago - and when he saw how it helps me he offered me the floor scrubbing version too. And a new food processor - the old one died just before xmas 2 years ago. Totally out of character!!!
    • Rimmy
      Rimmy EileenH

      Posted

      LOL !!

      Eileen you better get everything you need while the going is good !!

    • EileenH
      EileenH Rimmy

      Posted

      He even helped me up this morning when I went flying on the cleared snow! Maybe his personal experience with fatigue during the radiotherapy and last week's bad back has sunk in...

      Wonder what else would help...

  • maid_mariane
    maid_mariane susan08542

    Posted

    It is very common that our spouses and family don't understand. It's been 2.5 years with me and I've taken him to a psychologist because of his total lack of empathy. So your not alone.

    Learn to give in to the exhaustion many times it lasts less if you stop, nap and then can move on. There will be days you can't but take care.

    I'm 60 and run around with my 92yr old mother and know exactly how she feels. We laugh about it. She's in great shape. Independent cooks entertains etc. I'm lucky with her.

    • EileenH
      EileenH maid_mariane

      Posted

      What did the psychologist say? Mine is definitely autistic spectrum so I don't expect much any more...

    • maid_mariane
      maid_mariane EileenH

      Posted

      I have to unfortunately say we have been seeing her 1 yr and the penny dropped last session but not about pmr. Unfortunately/fortunately which ever way you look at it this is both our 2nd marriages both sps are deceased. His kids were in their 30s at the time and i could see they still after 2yrs were having a hard time but truly thought they would grow up. Let's just say it was/has been the movie parent trap(He has twin giirls) but with my husband who sees nothing and he requested of me not to talk to them. So trust me I've bit my tongue for 10 yrs as well as do something to my husband for lack of support. Then pmr hit and my cup ranith over with both. In every session something has happened that we needed to discuss on of his girls and her spouse.

      He know understands his kids behavior is outside the norm but hates to admit it. This week he realized how devastating their behavior has been on me and his lack of support and thanked me for hanging in.

      Working in the psychiatric field for alot of my career he just didn't want to hear it from me even though I told him. As for him he lacks empathy. If he can visually see no problem but hidden he cannot see. I've had to change and ask for help which is foreign to me. It literally took me a yr. to say No or ask.

      I'll tell you if he is labeled but it truly is hard. Good luck

    • EileenH
      EileenH maid_mariane

      Posted

      At least our children "problems" belong to both of us! They are good really - but the older one is attention deficit syndrome it appears. Getting info out of her is impossible - and in a few weeks she is heading to Beirut to train people to work with refugees, all voluntary of course and pay your own way. So we last had rent from her in September I think. She's waiting for a divorce - and should be solvent afterwards but how that is going is anyone's guess! He was/is hopeless...

      I used to ask - and gave up. This week at the electrical shop was like all my xmases and birthdays happened at one!

    • maid_mariane
      maid_mariane EileenH

      Posted

      Enjoy your holiday. As a close friend of mine who is about to loose her husband to cancer says at least your both healthy and have each other.

      Be well and thanks for being there for all of us.

    • EileenH
      EileenH maid_mariane

      Posted

      Yes - I do feel very lucky that his first brush with cancer was 24 years ago at the age of 41 and the oncologist won with her white magic! The second is at least very early prostate ca, the cure rate at this stage is very high and even if it weren't there are a lot of other options that push out the survival time.

      You Have a good holiday too,

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