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Addison disease and RA/AS

Posted , 4 users are following.

ama38049
ama38049

Hi, I have AS and was treated first for "general" RA  and then for AS over a decade. Recently (4-3 years) I have noticed that not only I gain weight, but my face and mid-body are very "fat" related to the rest of the body. It's almost as if all the fat mass is concentrated around these areas. I have burning skin sensation from time to time and after some googling I found out that the addison's disease is actually may be linked to RA and AS. Did anyone here experience anything like this? Thanks, A.

0 likes, 20 replies

20 Replies

  • Light
    Light ama38049

    Posted

    My own experience of burning skin was connected to periphral neuropathy.

    As to the plumpness around the face - are you on steroids? They are known to create what they call a "moon face".

    I'm afraid i don't know anything about AS or Addisons, though.

  • EileenH
    EileenH ama38049

    Posted

    " my face and mid-body are very "fat" related to the rest of the body. It's almost as if all the fat mass is concentrated around these areas"

    This description is what is often found in Cushing's disease patients, often said to be like a "lemon with stick legs and arms" - and that is exactly the opposite of the Addison's disease you mention which is usually assocaited with weight LOSS. Addison's is due to a lack of the natural corticosteroid cortisol, Cushing's is due to an excess of corticosteroid.

    Cushing's can happen naturally for various reasons leading to overproduction of cortisol - but Cushingoid syndrome also happens in patients who take prednisone or prednisolone for long periods to combat the inflammation in various forms of arthritis and in both cases it leads to the deposition of fat around the midriff, on the back of the neack and the face.

    I assume AS is ankylosing spondylitis - was pred used in the management of the RA and AS? If so, that is the most likely reason for your weight gain and the particular distribution of that fat. There has recently been a discussion on another forum about the burning skin sensation - others say they have noticed it since starting pred but I had it before I went on pred so I assume it may be due to the autoimmune part of the arthritis for which we take pred. 

  • Buckeyes
    Buckeyes ama38049

    Posted

    I was on prednisone and after adding 30 pounds I fought to get off it!  I had the fat deposits too!  I was hoping the weight would come off after I discontinued it!  No way!  It's taken me 6 months to lose 10 pounds!  I haven't been able to exercise because of back issues so I've been basically starving myself!  I know...not healthy!  LOL!  Good luck with your issues!  Keep us posted!
    • EileenH
      EileenH Buckeyes

      Posted

      It is less a case that starving yourself is unhealthy and more that your body goes into stone-age mode thinks it is being starved because there is a shortage of food. As a result it sort of shuts down so your metabolic rate gets lower and you can manage with fewer and fewer calories.

      A better way to go about losing pred weight is to cut carbs but eat well on low carb foods or to try the 5:2 diet where you fast on a couple of non-consecutive days a week. Then your body doesn't think it is being starved and you are more likely to lose weight.  

      A good way to exercise even with back issues is to walk as much as you can - doesn't have to be high intensity stuff - or go to the pool and walk there, the water supports you and everything in the water is more effort.

      And try Bowen therapy if the back issues are possibly muscular - getting the back issues sorted should be an early priority.

      I have lost a lot of pred weight even though I am still on pred but however hard I try it is slow, about the same as you. It upsets me more than my doctor - she just says slow weight loss is still weight loss and is better than losing it fast when it often just goes back on as soon as you eat more again.

    • ama38049
      ama38049 EileenH

      Posted

      Hi Eileen and all, thanks for your replies. I was on prednisone about 8-9 years ago. I remember myself as being padded all over. These days I am on Humira every other week. Does not do the miracle as promised but I can move on most days so it's a good start. I continue the checks as my orthopedist claims that I might have AS (scan proven) but it does not explain sever pain in my arms and legs and my inability to use knees properly (X-rays showed nothing now fighting for MRI as I don't want another ct). The problem is that I do eat healthy, healthy - a
    • ama38049
      ama38049 EileenH

      Posted

      Sorry - pressed "post" too soon (silly fingers :-( ). I do eat healthy, I exercise 4-5 days a week whenever I can (walks, Trx without knees...) but nothing seems to work. A moon face and a "huge" belly. Huge by my standards, but still. My gn said that it's an "age" fat and it's really early for me (39) plus I only started to have this issue in the past years... Trying to understand what's wrong with my body as the Drs seem to make the diagnosis and stick to it the same as they didn't diagnose AS for many years although I kept telling that my back hurts...
    • EileenH
      EileenH ama38049

      Posted

      I'd have thought a few tests might be a good idea - cortisol levels in urine, blood and maybe saliva would be a start. Maybe seeing a different doctor who hasn't been looking after you for years might be a good idea?
    • ama38049
      ama38049 EileenH

      Posted

      Thanks - additional blood tests a good idea. TSH is fine - that I checked already... Following my orthopedist's advice, I just scheduled an appointment to the best rheumy in the area - will see what he will suggest in a few weeks. I am off diary products, almost no carbs, low fat meat, vegetables, almost no fruits, no sugar. A sin of cake here and there when someone celebrates a birthday. So, by the book? I should be in a great shape. Obviously, my body missed that chapter... I am not obese for my heigh, but moving from size 3-4 sizes up in 1-2 months due to some meds I took (unfortunate and wrong prescription, but we all moved on) made me overwheight and staying on 2-3 more than I used to be without an obvious reason years after is, well, strange... The fat distribution has changed too...
    • Buckeyes
      Buckeyes EileenH

      Posted

      I understand!  As far as exercise I would love to walk!  I have spinal stenosis and disc disease and get spasms when walking or standing too long!  I had injections in my back 2 weeks ago and since it hasn't helped I have to have an MRI and more injections!  I did start an aquatic arthritis class and have been going weekly.  It basically is stretching.  Since my schedule has involved a lot of doctors I haven't been able to do laps as I had planned.  I thought I could burn a few calories that way.  All is not lost!  Eventually I will get on the right track!  Thanks for your reply!
    • Buckeyes
      Buckeyes EileenH

      Posted

      See my reply down in the comments!  Don't know what I was thinking!  LOL!
    • ama38049
      ama38049 EileenH

      Posted

      Ghhhh. It's too sad to read too late what comes under your fingers when you mean to write "a" and you fingers type "b"... I went to 3-4 sizes up my normal self when I put on weight. Staying still 2-3 sizes above the norm with workout and healthy eating habits (don't believe in starving diets). Almost all concentrating around my abdomen. And face. Not "moving from size 3 to 4". Would love that maybe, but would be in the grave for anourexy long before that... Sorry for the spam, but needed to clarify that.
    • ama38049
      ama38049 Buckeyes

      Posted

      Hi Buckeyes, very elevated cortisol level  it is for me. It's not Addison but Cushing's like Syndrome as it seems. WIll see what endocrinologist will say next week... thanks and take care. Try medical yoga and I hope that you will loose some weights though walking. As much as I hope this for myself....
    • Buckeyes
      Buckeyes ama38049

      Posted

      What is medical yoga?  Injections have helped somewhat.  Spasms seem to come at various times!  Been having horrible leg cramps at night in legs and feet!  Thinking it might be from dehydration from the heavy diuretics I take!  I seem to be burning some calories walking the cramps out at night!  LOL!
    • EileenH
      EileenH Buckeyes

      Posted

      Try taking magnesium supplements - that is the first line approach in most of mainline Europe for leg cramps in particular. If that doesn't work then GPs here will look further but they always start there.
    • Buckeyes
      Buckeyes EileenH

      Posted

      I'm taking potassium because of the water loss.  Also have been on centrum silver, calcium and d3.  Will check on magnesium.  Thanks!
    • ama38049
      ama38049 Buckeyes

      Posted

      Medical yoga is for ppl with medical problems. The instructors are trained differently. Works on stretching, joints, etc. I was over flexible before the RA nightmare has started, so not much to look for there for me, as I am still flexible where the joints were not damaged and inactive elsewhere, but for "normal" ppl it does miracles. Maybe will do it one day to keep flexibility. Similar to Eileen, I was going to suggest magnesium as well as calcium tests. Magnesium did good for me, so speaking from personal experience. Seems like you are already covered. Good luck.
    • Buckeyes
      Buckeyes ama38049

      Posted

      Thanks for your reply!  I go back to rheumy on the 30th and will probably get another blood test.  I will mention the cramping and will probably be checked   for it.  I have been low on calcium and d and that is the reason for those supplements.  I do aquatic stretching every week.  Probably could use more because the last time I tried the treadmill I have severe leg cramps that night!  Never thought to stretch before getting on so I will try that again next time!  There is a motion I do in the class that causes my whole leg to ache and I can't do it.  It causes the same pain that I get frequently at night.  I'm wondering if it's back related because I have problems there?
    • EileenH
      EileenH Buckeyes

      Posted

      If you have back problem - try Bowen therapy! It worked for me and has worked for a lot of others on our forum. It works to release spasmed muscles which can trap nerves and compress blood vessels impairing blood flow during exercise. Three session is enough to show whether it will help, if it doesn't you don't bother with more but often patients find relief after the first session. Also known as Bowtech.
    • Buckeyes
      Buckeyes EileenH

      Posted

      Went to family doctor yesterday because of the severe cramping.  Did blood work and waiting on results.  Told me to stretch before bed and to drink 1/2 -1 cup of tonic water before bed!  Amazingly didn't have leg cramps at all last night!
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