Living with PMR autoimmune disease and on Prednisone tablets:

dea131313
dea131313 Posts: 13 Member
in Motivation and Support
Hi, my name is Dea... I found out almost 2 years ago I have a autoimmune disease called ( Polymyalgia rheumatica ) short PMR ... not much is known about it. I have been on the dreaded Prednisone tablets for almost 2 years, from 40mg now down to 12mg...
Sometimes I think the meds are worse than the illness and I want off them, but have to taper real slow. I feel I am getting better with my inflammation, and hope the PMR will go into remission soon. It never really goes for good.

Does anyone else on here have this? or on the Prednisone as you will know it's near to impossible to lose weight while on them.... so any health and eating tips would be great. Hit me up ..: )

Cheers Dea

Big Girl Pants :

Replies

  • amelisegb
    amelisegb Posts: 58 Member
    Hi Dea, I have struggled with an autoimmune disease as well, though I am not currently on Prednisone. You should check out this community: http://community.myfitnesspal.com/en/group/111724-getting-fit-with-an-autoimmune-disease

    If you scroll through the posts, you might be able to find something that can help you.
  • dea131313
    dea131313 Posts: 13 Member
    Hi Dea, I have struggled with an autoimmune disease as well, though I am not currently on Prednisone. You should check out this community: http://community.myfitnesspal.com/en/group/111724-getting-fit-with-an-autoimmune-disease

    Thank you, I have joined the group but notice a lot of comments are about a year old. I hope to get some feed back.

    Cheers Dea
  • MarziPanda95
    MarziPanda95 Posts: 1,326 Member
    dea131313 wrote: »
    on the Prednisone as you will know it's near to impossible to lose weight while on them....

    Definitely not true! I lost the majority of my weight whilst on much higher doses of prednisone than you. I have ITP, which means my immune system attacks my blood platelets. When I was first diagnosed, my platelets were less than ten, and normal range is 200-400. I was put on 95mg. And they only had them in 5mg tablets, so I had to choke down a bunch of little tablets a day, ew. Anyway, I started to gain some weight because I was hungrier, but then I decided to change my life. I was 210lbs. I lost 50lbs whilst still on prednisone, and for most of that time I was around 70mg. The pills don't make you gain weight (beyond water weight) and they don't stop you losing weight... they make you hungry. I was glad when I finally got off the prednisone, but only because they gave me insomnia and made me moody and hungry. If you eat in a calorie deficit, you'll lose weight.
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    I have Sarcoidosis. Add me if you want.
  • dea131313
    dea131313 Posts: 13 Member
    MarziPanda95 wrote: »
    dea131313 wrote: »
    on the Prednisone as you will know it's near to impossible to lose weight while on them....

    Definitely not true! I lost the majority of my weight whilst on much higher doses of prednisone than you.

    Then if you have done your research on Prednisone you would also know that if effects everyone different and also on what illness you have. Even my Rheumy told me it's not easy to lose it while on Preds, some people do, but I know a lot with PMR ( it's an autoimmune disease in which the body’s own immune system attacks the connective tissues. ) and Thyroid problems have trouble, you are right about the fluid retention and appetite gain .

    I guess you are one of the lucky ones. :) You should have been able to get the Preds in 25mg tablets? but the 5mg are not that big to handle either.

    My issue is also I have spinal facet joint Osteoarthritis and find it hard maintaining physical activity. But I am on here and working on that.... We all know calories are the problem on how many we eat: Cut out carbs and sugar for inflammation. I have been around a long time to know what I need to do :) Just getting the motivation some days.

  • Munchberry
    Munchberry Posts: 172 Member
    I used to take prednisone. I managed to lose weight, but I was always hungry and miserable. I counted every last calorie and measured everything because I felt my hunger might tempt me to cheat. I know some are saying calories in calories out, but that medicine makes you not normal. Ask your doctor and read medical studies. That is what I did. I went in informed and armed and resigned to the hardships of prednisone - because I so needed the blessings of it. Kept me alive!

    One thing. When you talk to your doc - ask him what the future is going to look like. Will you ever get off of Prednisone? Dial back? What are the triggers for that? Is there an alternative? Anything in the pike? Knowledge is empowering.

    Also get out and get some fresh air and exercise (if possible). Even just a stroll around the block. It is good for your mental health esp. when facing a little bit of a physical hill.
  • dea131313
    dea131313 Posts: 13 Member
    Zoedogmom wrote: »
    I used to take prednisone. I managed to lose weight, but I was always hungry and miserable.

    Hi Thanks Zoe, I have been on Prednisone for almost 2 years now and have done extensive research on it as a drug. There is a light for me at the end, I hope to be off it by the end of this year, and that's tapering very slow to control the inflammation as I go. There was no alternative, just Preds for what I have...
    I do go in the pool every 2nd day for a hour exercise, it's starting to help. Also researched noninflammatory foods, and that's what I eat now, so far so good. I lost 3.5lbs this past 7 days, just started on the 1st Jan.

    I hope you are better now....

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