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

GCA disease

Posted , 6 users are following.

harriet93582
harriet93582

I have the giant cell in the scalp, diagnosed in June. I went from 60 mg to 25 mg with a reduction of one half mg every 14 days. My rheumatology never gave me any info of what to expect with side effects. I have shakes inside and fast beating heart, usually by 3 pm it subsides but this morning I felt like I was having an earthquake inside my body, weak n shaky an I had to stay in bed, at 6 pm I started to feel better. Does anyone else have this problem. My doctor is no help, he just wants to send me for tests at ER, he was thinking a stroke but the tests come back negative n I cant afford ER every time I have this condition which  is every day at different times. Please let me know if anyone else is experience this

0 likes, 23 replies

23 Replies

Next
  • EileenH
    EileenH harriet93582

    Posted

    They are typical things that happen when you are on high doses of pred. You can find info about the side effects on the internet - I expect your rheumy thought you'd do that - but there should be a sheet of information with the tablets. If not, your pharmacist can tell you - or do you buy your pred online?

  • faye______00403
    faye______00403 harriet93582

    Posted

    When I was first diagnosed the doc put me on 20mg of pred.  I felt so

    hyped and edgy I went back to him and he told me I was "wired"   It

    was not unusual.   Those feelings went away, maybe just hang in there and

    it will subside.   The one good thing was that I lost weight.   Unfortunately when

    the hyped feelings went away I started gaining.....

    • faye______00403
      faye______00403 lodgerUK_NE

      Posted

      Thanks for the info.....I do have PMR but not GCA....I've had

      PMR for over two years and have gotten a ton of info from this

      site....like so many say....I'm glad I found it.

    • harriet93582
      harriet93582 faye______00403

      Posted

      I let weight too n gained it back and I'm always hungry, when I do eat I seem to have more energy. My face looks like a moon, my neck got bigger. How long did it take you for symptoms to disappear, I started on 60 mg in June, now on 25. Tomorrow It's reduced to 20 mg. I never felt hyper, actually the opposite, I'm always tired. 

    • faye______00403
      faye______00403 harriet93582

      Posted

      Nothing has disappeared yet.   I'm still on 20mg a day....when first

      diagnosed i went down to 4mg a day and thought this is easy.

      Then had awful bout of sciatica and when I went back to see doc

      sed rate was back up to 60 and I've never been able to reduce again.

      Keep trying but pain comes back.   I have ALL the visible symptoms.

      Just gave away all my good clothes  because I'll never get totally off

      this drug....by the way....I'm pushing 80 so don't hold out much

      hope of being "cured" whatever that means.

    • EileenH
      EileenH harriet93582

      Posted

      I gained a lot of weight with one sort of pred but switched to another - and then was able to lose about 36lbs by cutting carbs drastically and being very disciplined about food. Others have lost weight with slimming clubs - it can be done.

      Cutting carbs is a logical way to go about things - because pred changes the way we process carbs and that is part of the cause of the weight gain and also the isk of developing steroid induced diabetes. It also helps with the hunger pangs which happen when your blood sugar plunges with the production of insulin - cutting the carbs reduces that yo-yo effect so you should have less of the cravings for food, especially the sweet and sugary stuff that makes it worse.

    • EileenH
      EileenH

      Posted

      PS - I started to lose weight even while still on 15mg.
    • harriet93582
      harriet93582 EileenH

      Posted

      What pred did you SWITCH too? I know cutting carbs help many lose weight, I wish I didn't like it so much but hearing your story encourages me to try it. I hate the way my face n neck look, moon face. Do you eat red meat, I stopped eating it and pork. Congrats on your weight lose, that's awesome.

    • EileenH
      EileenH harriet93582

      Posted

      It is a form of prednisone - but it is more to do with the fact I changed from methyl prednisolone to prednisone. I put the weight on with that - but there were a few changes, However, I do know that carbs make a big difference because when I am away from home and eat more carbs than usual I put on weight, which I lose when I get home and back to my normal eating pattern. And yes - I eat red meat and pork.

      My granddaughter said yesterday: "Embrace the face" - she is 16, on high dose pred and put on a lot of weight. She has lost a lot of weight since she became vegan - but that has meant she gave up all the junk carbohydrate baked goods she used to eat. That is key I think.

    • harriet93582
      harriet93582 EileenH

      Posted

      I never heard of methy prednisone. I don't eat much junk food but I love my pasta so now I'm just buying spaghetti squash and with sauce on it I satisfy my cravings. I don't think it has many carbs, I have not checked yet.  I always had a weight problem even with exercising four times a week before this diseas n it's hard to lose weight at 70 years of age but I must say your posting and your gr-daughters success has encouraged me. I also lost weight I when I first went on pred but gained it all back and some.

  • JanSP
    JanSP harriet93582

    Posted

    Many of us get wired when we are first on prednisone. I wish I could harness that energy now. All I want to do is sleep.
    • harriet93582
      harriet93582 JanSP

      Posted

      I want to sleep a lot too but I don't fight it because sleep gives the body a chance to heal. I also get dizzy n have to hold on when I walk. I have been on prednisone since June, I'm not new at this. My rheum didn't tell me anything about the side effects, I don't understand why they can't educate you on this. Im glad I found this forum, it really helps. Only problem is when I see postings of how others administer there steroids I wonder if I should be doing same, I take mine with breakfast about eleven am, lol. And now I see some take it twice a day. I wonder if I should have been doing that to prevent these bad shakes. 

    • EileenH
      EileenH harriet93582

      Posted

      You should probably be taking your pred somewhat sooner in the morning to get more out of your day - it takes a couple of hours to work, the sooner you take it the less inflammation is in situ for it to clear out (it all starts about 4.30am). 

      Some people who have had bad shakes found splitting the dose into 2 smaller amounts reduced the shakes, other found taking it before bed meant they happened during the night so didn't bother them as much. Everyone is different so a bit of experimentation is often quite useful.

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.