For Madwolf re: Cortisone and FMS

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Nov 22, 2002.

  1. klutzo

    klutzo New Member

    Hi Loco Lobo! Maybe you can help me understand something that happened to me.
    I had FMS for about 3 yrs. when my Rheumatologist moved away. In looking for a new one, I went to a PCP who was recommended to me as an "expert in FMS". He used an ultrasound to locate bad areas, and then injected them with cortisone. I had had this done before by the Rheumy and she always used 20 mgs. per shot so I thought he did the same. When I went to check out the amt. of my bill shocked me. I asked why and found out he had given me 5 shots of 80 mgs. each, for a total of 400 mgs. all at once! Needless to say, I never went back to this "expert".
    They tell us FMS is not autoimmune, but within 24 hrs. after the shots, I had no sign of the illness. A previous trial of oral Prednisone to r/o PMR had produced no results, but this took away all of the symptoms, and for 3 weeks I was normal again. I was afraid to go anywhere for fear I would catch something and not be able to fight it, but I sure felt good until it wore off in 3 wks..
    When I got a new Rheumy, I asked him about this, and he said "that much cortisone would make the dead get up and walk", and told me not to give any significance to what happened.
    I still don't get it though. If FMS is not autoimmune, how could this have worked? Or, if we do not have an organism involved that is causing our immune system to attack, how could this have worked?
    Any help in understanding this is appreciated!
    KLutzo
  2. klutzo

    klutzo New Member

    Hi Loco Lobo! Maybe you can help me understand something that happened to me.
    I had FMS for about 3 yrs. when my Rheumatologist moved away. In looking for a new one, I went to a PCP who was recommended to me as an "expert in FMS". He used an ultrasound to locate bad areas, and then injected them with cortisone. I had had this done before by the Rheumy and she always used 20 mgs. per shot so I thought he did the same. When I went to check out the amt. of my bill shocked me. I asked why and found out he had given me 5 shots of 80 mgs. each, for a total of 400 mgs. all at once! Needless to say, I never went back to this "expert".
    They tell us FMS is not autoimmune, but within 24 hrs. after the shots, I had no sign of the illness. A previous trial of oral Prednisone to r/o PMR had produced no results, but this took away all of the symptoms, and for 3 weeks I was normal again. I was afraid to go anywhere for fear I would catch something and not be able to fight it, but I sure felt good until it wore off in 3 wks..
    When I got a new Rheumy, I asked him about this, and he said "that much cortisone would make the dead get up and walk", and told me not to give any significance to what happened.
    I still don't get it though. If FMS is not autoimmune, how could this have worked? Or, if we do not have an organism involved that is causing our immune system to attack, how could this have worked?
    Any help in understanding this is appreciated!
    KLutzo
  3. Mikie

    Mikie Moderator

    I'm not Madwolf, but hopefully, he will be along soon to answer your question.

    I'm just guessing, but I think even though our illnesses are not supposed to be inflammatory in nature, we can have some inflammation in our tissues. That is probably why Vioxx and Celebrex can have some limited benefits but do not usually offer total, long-term relief for our pain.

    I think the steroids work the same way. Studies have shown that using steroids work for us in the short term but cause adrenal system problems in the long run. Before my doc and I knew better and before I was diagnosed, he gave me a shot of cortisone (sp?) which did help with the pain I was having in my hands when I was taking golf lessons. The benefit was very short lived.

    OK, Madwolf, we need your expertise here.

    Love, Mikie
  4. klutzo

    klutzo New Member

    I wrote out a nice answer to you all, and not only did it not post, but it made me sign in all over again!
    Anyway, thanks for your answers.
    I'm not sure I believe in autoimmunity. Just because we can't find out what causes something, does not prove it's autoimmune. I think the whole concept of autoimmunity is a result of the medical system being male-dominated, and we all know most men can't say those 3 little words, "I don't know", so they have to come up with something. TB used to be considered autoimmune until the spirochette that causes it was discovered.
    I guess even if I could find a quack to give me the cortisone all the time so I could feel normal, I still would not do it. I know what it would do to my bone density, my blood pressure, my immunity and my weight! What a bummer to know of something that can make you feel normal and not be able to take it!
    Happy Turkey Day,
    Klutzo
  5. ladydi

    ladydi New Member

    Klutzo,
    Just a line or two to let you know of my experience with
    these two *remedies*.
    I had trigger point injections, which I assume were cortizone. No big help.
    I started on a stress dose of Prednizone. Ended up on the
    Psych. Ward.
    Everyone should be very carful when using Prednizone. Many
    people have Psychotic reactions, and make foolish dicisions while on it.
    I wish I were one of the ones who could benefit, but, I get completely looshid(?).

    Just my input. My Rheummy still won't admit it causes Phychosis in some people, so I'd be careful.

    LadyDi
  6. klutzo

    klutzo New Member

    Hi Madwolf -Would you give the Cortef to someone whose 8 am serum cortisol was right down the midline of the normal range? That's what mine was.
    My Naturopath said the blood test was useless and ran saliva tests (4 in one day, several hrs. apart) and said I was in 3rd stage adrenal failure, but the Endocrinologist said that was bunk and that saliva tests are very unreliable. Who can you believe?
    Lady Di - Belive me, I have a healthy respect for the side-effects of cortisone. Prednisone and shots did not work for me either, except for when this quack gave me 5 times the normal amt. of Depo Medrol, injected all at once. I was totally normal for 3 wks. after that. It supressed my white count and is very dangerous, so I would not do it again.
    Klutzo

  7. klutzo

    klutzo New Member

    My 8 am. fasting cortisone level was 18. So why would that big dose of 400 mgs. of Depo Medrol IM have made me feel so wonderful? It's a mystery!
    KLutzo