Does Prednisone help Fibro????

Discussion in 'Fibromyalgia Main Forum' started by mariac2000, Apr 16, 2003.

  1. mariac2000

    mariac2000 New Member

    I have fibro and have no intention of taking prednisone, but this is my question..
    Many months ago a doctor put me on prednisone short term. I felt much better. He was sure it ment I had something besides Fibro.
    I now see another doctor. He has run all kinds of tests and EVERYTHING turns out normal or negative. He is covinced that it's Fibro and nothing else, so...
    In all of your experience have any of you with Fibro been helped by prednisone OR does it indicate I have something else.
    Just don't want to leave any stones unturned!
    Thanks so much.

    Maria
  2. kerrymygirl

    kerrymygirl New Member

    People with fibro should try to avoid steriods if at all possible unless you need it to treat another disorder. Studies have shown adverse reacton for fm. I`ve had pts. become very ill even hospitalized and will take about 1 yr. to totally rid from system. In my 1st treatment I also was given prednizone and felt better then bammm. I stopped, later found research on pred. and fm was not reccomended. Once again every case is individual and could have some other med. prob. going on. Good Luck Huggssss!
  3. LeLeHpr

    LeLeHpr New Member

    I have taken predisone twice for BADDDDDD flare ups and it has gotten me through the first couple of real bad days..No bad reactions, though I would not take it everyday as it is bad for your body...BUT, what isn't? Now, I am not saying I just have FM...Docs still are not sure..I go to Dr. Andrea Trescot 4/28 and she is world renound in pain management..I am hoping she continues to see if there is something else causing my pain...We will have to wait and see...
  4. abjessop

    abjessop New Member

    I'm well acquainted with Prednisone, since I also have lupus.

    Pred is known to give some people a euphoric feeling, which may be why some fm'ers think it helps.

    Lately, the only way for me to tell if a flare is fm or lupus is to take pred: if it helps its lupus, if not its fm.

    It causes so many nasty problems with long term use!

    For me effects were
    moon face
    weight gain
    insomnia
    severe stretch marks and skin breakdown
    much thicker glasses
    (To be fair, I should also point out it probably saved me froma kidney transplant and sshuts down my lupus flares)

    Keep iin mind that other illnesses that are treated with Pred can be very hard to diagnose, particularly since the blood work can fluctuate like the symptoms, so having a dr keep an open mind about dx is probably a really good thing.

    Good luck,
    abby
    [This Message was Edited on 04/16/2003]
  5. Msagn

    Msagn New Member

    Hello Mariac, I have been on a "hydrocortisone" program for over 2 years with no side effects. Did you know that your body produces hydrocortisone naturally?
    When you were a child and fell and huet your knee, you body would ruch blood to the area to swell and protect the tissue from damage. Several hours later your body would produce a pulse of "hydrocortisone" to turn the swelling off. Prednisone is the man made substitute of cortisone, however it is 7 times stronger than "hydrocortisone". Originally the program I am on was started by a doctor for his wife that had dis-figuring arthritis and was in constant pain. While her disfigurement of her hands could not be reversed, the hydrocortisone therapy he developed has kept her pain free for the past 17 years. They were giving a seminar at one of our local schools about 2 years ago, I was looking for anything to relieve me of my pain. So my son drove me up to the school and we listened to what they had to say. We decided to give the program a try. Most people will get relief within the first two weeks if the program works for them. Thank God everyday I was one of the one's it worked for, With in 2 weeks I had a 70% reduction in pain. I could sleep again a full 8 hrs, I didn't hurt to the point my yorkie couldn't jump on my lap. Now I self medicate, if I feel a flare comming on
    I hop on a decresaasing dose for 3 days then I get off.
    Meds run me about $120-150 a year. that's right, a year.
    Do a search on Microdose, or Microdose Therapy you can request info on their services and doctors that are possibly in your area. If not they are always looking for new doctors for arease that do not have representation.
    Best of luck If you would like to talk my name is Mary
    I'm a 74 yr old homemaker retired. living in Arizona
    480-595-0217
  6. Mikie

    Mikie Moderator

    Steroids are not considered a good long-term treatment for FMS unless there is some inflammatory illness as well. Steroids are heavy-hitter drugs which usually do help in the short term but can do long-term damage. This is the current wisdom out there; however, that is not to say that someone may be doing research into using them in a manner with has better long-term benefits without the traditional risks associated with them.

    I, personally, would not use them to treat FMS or CFIDS.

    Love, Mikie
  7. pam_d

    pam_d New Member

    I tried prednisone to no avail at a doctor's insistence long ago when I first developed FM. Did not help, and I make sure any doctor I see now knows that I FEEL inflamed in my body, but I'm NOT inflamed.....if you have another co-existing condition that is inflammatory, steroids may be worth the risk, if regular anti-inflammatories do not help. I think there are many rheumys & other docs who want to try them because they are honestly perplexed about treating FM/CFS, and don't know what else to offer patients...

    Hugs,
    Pam
  8. mariac2000

    mariac2000 New Member

    I know all about how dangerous prednisone is. What I want to know is this...If you take it and feel better does it mean for sure you have something besides Fibro.
    A dose pak of prednisone helped me awhile back. Since then all blood tests have been negative, Bone scan was negative for inflammation, EMG test was negative. No anti inflammatory meds have helped.
    Is there any reason I should push for more tests, or can prednisone make someone with just fibro feel better?
    As you can see I am very confused.
    Thanks again,
    Maria
  9. Msagn

    Msagn New Member

    There is no way I would wnat to be on prednisone long term either. Hydrocortisone is a substance naturally produced by your body. Plus, once my pain was under control, I go weeks at a time without having to medicate. If something sets me off I go on a 3 day decerasing dose. So far it has stopped any further flare. What they are trying to acheive in the program I have been involved with is, mimic the amount your body once produce to stop any inflamation that may cause a flare.

    It's when inflamation in the joints does not get this impulse to stop that the inflamation turns damaging.
    As for being on hydrocortisone long term, I met the wife of the Chemist that worked on the original project for arthritis pain. She's been on the program for over 17 years, with no major side effects.

    You can search info out on the web and read if you like. You can also request information "Microdose".
    Out of a group of 11, 3 dropped out, 6 had moderate relief of pain and two of us had great resluts.

    hope you all find something that works for you !
    msagn
  10. mcmarsha

    mcmarsha New Member

    It seems that prednisone isn't really an option when it comes to CFS (and fibromyalgia) due to its strength; however, hydrocortisone is not prednisone. So, hydrocortisone is still being considered for the treatment of CFS (and fibromyalgia). The medical community is actually divided on this issue when considering its safety in low doses. They are also considering another steroid hormone called fludrocortisone. I personally would not take anyone's word for it when it comes to the safeness and effectiveness of it or any other drug for that matter. I would do my own research and pay close attention to the facts. Also, I would weigh any negatives against the quality of life. Example: Am I willing to suffer the risk of "possibly" a difficult recovery from a "potential" heart attack because I am on a steroid, with emphasis being made with respect to the words "possibility" and "potential" and not a certainty that the recovery would be difficult not to mention I may never have a heart attack in the first place or it may occur 30 years from now? If my quality of life is good, then those are chances I, personally, am willing to take, but that is a very personal decision for each and everyone of us. Please just make it an informed decision...do your homework to help you make that decision. And remember...prednisone IS NOT hydrocortisone. There is a big difference. It's like comparing a shot of whisky with a shot of 3.2 beer. For further information, please start by checking out: http://www.cfs.inform.dk/Corticosteroid/letterjama.htm

    Marsha
  11. JLH

    JLH New Member

    If prednisone helps you, you may have arthritis or lupus or some other type of inflammation problem that it helps.

    It does not help fibro. I have lupus and it helps but I will not take it very often. It is not safe to take a dose pak more than 3 times a year.

    Long term use of it caused my cousin's bones to just crumble and he had to have 2 total hip replacements at age 40. However, he had to take it for his lungs or die.

    It can cause eye problems and diabetes. Since I am already a diabetic, I won't take it unless it is absolutely necessary.
  12. kadywill

    kadywill New Member

    two days ago and I am in severe pain. I can't move. I am lying down supported all over by pillows and I could cry with the pain. I have other issues other than FMS; this is why I have to rely on steroids. I had started this round of steroids on February 1st of this year and I can't describe fully just how they affect me; all I can say is that I stopped them just prior to carry out my suicide plans. I LOOK horrible on steroids, but my pain is gone. My husband is VERY upset with me for stopping them against medical advice, but I WOULD'VE killed myself had I continued.
    Never take these drugs lightly, please. I know that I may have to take them again to save my life, but I pray not. They ARE lifesavers AND killers at the same time.
    Kady
  13. klutzo

    klutzo New Member

    This is a confusing issue for me as well.
    When I first got Fibro, I was put on low-dose oral Prednisone for 2 weeks to rule out Polymyalgia Rheumatica. All it did was put weight on me.
    Later, I ended up seeing a doctor who believed Fibro was a precurser stage of RA and injected my tender points with a dangerously high dose of Depo Medrol (cortisone). This dose was high enough to be malpractice, but at that time I did not know all the medical stuff I know now. It supressed my white count severely, and caused blood and protein in my urine, but it completely took away my Fibro symptoms for 3 whole weeks!
    Years later when I got a good Rheumy and told him about this and asked why it helped me so much, he said "that much cortisone would make the dead get up and walk", which did not really answer my question.
    Now, with all the stuff I've read, I think the answer is partially that the TH2 side of our immune systems is over-activated,causing cytokines to be released. These cause the flu-like symptoms we have, and the cortisone will supress the immune system enough to stop the release of cytokines.
    Supressing your immune system is not a good idea long term unless it is needed to save your life, as in lupus, for example.
    I hope this is understandable and that it helps to explain what is a confusing situation.
    Still confused myself,
    Klutzo
  14. amy987

    amy987 New Member

    i actually havent been on prednisone, but i know someone who was, and she has FM and it worked wonders for her, it really did.
  15. tansy

    tansy New Member

    because I had raised DNA binding and they thought I had lupus.

    I had the most awful initial reaction which I was told would ease down. Head was so bad couldn't cope with being upright and there were lots of other problems.

    As it turned out the seriological test for SLE was negative so needn't have gone through all that. It had long term repercussions too.

    Due to the circumstances under which they "ensured" I took this drug they failed to inform me or my GP (PCP)that the test was negative. Once released I 'phoned another doctor I saw privately prior to this and he advised me on how to come off them again.

    The only benefit I gained was that my joints were no longer so stiff. That problem was dealt with later by a different more holistic approach.

    I gather microdoses are a much safer and more appropiate treatment approach, our bodies do not like sudden change and low doses would be less of a shock to the system.

    Cheer, Tansy
    [This Message was Edited on 04/26/2003]
  16. pgunderson

    pgunderson New Member

    I took Prednisone about 2 years ago for what I thought then was just Arthritis. It did help with the pain, but then I also started getting many side effects (heart palpitations, headaches). I never want to take that medicine again. It was horrible. Sorry to say, I have not had much luck finding anything else that will completely get rid of the pain. I do take Magnesium and Malic Acid with Calcium which does help some. Hope this helps.

    Pam
  17. cmariec

    cmariec New Member

    I went to see an ENT because I was dizzy, lop-sided, and falling down from time to time. After doing an ENG, a test that checks for vestibular/inner ear problems. The doctor noted that my right ear responds significantly less than the
    left. The reaction seem to occur in some autoimmune disorders of the body system or the inner ear. He suggested a high but tapering dose of pred to see hoe my body would react. The dizzies have stoppped, I feel better all around-except I am a little short of breath. I was told at the doctor's office that a new round of ANA and SED rates tests would be ordered. A specialized test was ordered for the immune disorder of the inner ear. He said if I responded to prednisone-maybe it hasn't been fibro all these years. I am wondering the same thing you are-is it or not? To top ot off I am an odd fibro patient-I am an Af-Am
    woman and fibro has always been a diagnosis that raised eye brows-just not the typical patient. Anyway, I want to know too- HELP! And what are the worst possible side effects of prednisone?
    Keep Feeling Better
    [This Message was Edited on 06/18/2003]
  18. kadywill

    kadywill New Member

    and I can say that I don't believe I can survive without the steroids now. I'm on a daily maintenance dose of Dexamethasone and I am in much less pain. My chronic angioedema and urticaria are controlled by this and if I reduce the dosage, I'm red, inflammed, itchy and covered in hives. My fever can go up to 105 without the drug and I have severe respiratory distress. I have ALL the short and long-term adverse effects, including a severe depression, but there is no alternative drug for me. This is my thirtieth year of having to accept the steroids and tapers no longer touch my condition. My life-threatening anaphylactic reactions make this a necessity for me, but I would encourage anyone with less an emergency to reconsider taking this drug. It is very dangerous in the long run; a short taper is fine and helpful for most.
    Lord, what we do to ourselves for relief!
    Love,
    kady
  19. garyandkim

    garyandkim New Member

    must say I love them. They work better the more you get. It took a year before it really started to help my spassums on a long term basis. Gary took the oral but, found it not much help for him. I see 2 docs that treat FMS but see the one mainly for osteoporsis. She's even given me a shot now and then. I also was dxed with bursistis in a few spots and the shots help that a lot to. I get 5-7 shots each time.

    So to me yes, it helps my FMS symtoms to.

    Good luck and research, Kim
  20. NutsInAlabama

    NutsInAlabama New Member

    Hello mariac2000

    I was dx about 2 weeks ago and just finished a round of prednisone.
    I gained 10 lbs
    it started as 7 a day for 2 days and then went to 6 for 2 then 5 and so on
    I also have osteoarthritis and osteoporosis
    I broke my back 2 yrs ago and found that to be the case never knew why I had such pain
    My new Rheumy (gp referred me because of all my allergies) which predisone is also given for (allergic reactions and anaphylaxis) thinks it is a combo of things and dx the FM and CFS as well. I am waiting for my test results but can't get back in to him until August. He is a very wanted Dr around here.
    I have to keep a daily record of how it works and it has helped with the joint stiffness in the am but it returns at around 3 or 4 pm with even more increased pain.
    If it works for you and you can tolerate any side effects
    that may be an option. so far so good for me

    NutsInAlabama