Anyone tried Prednisone? For Fibro. or anything else?

Symptoms & Treatments
21

Yes, I was put on Prednisone for the Fibromyalgia, but unfortunately gained 50# in two weeks and had to be taken off because I was allergic to it. I recently was diagnosed with Secondary Adrenal Insufficency, Hypocortisolism Hypodrenalism and Hashimotos Disease. I found an amazing endocrinologist and what they had suspected 30 years ago (the Secondary Adrenal Insufficiency) he found. He told me that it is common in people who have Chronic Fatigue Syndrome and Fibromyalgia and he was very surprised that I had functioned as well as I did for this long. I finally had the answer to why I could never rush to do anything - I didn't have the adrenalyn to keep up. He put me on hydrocortisone - a small dosage and it has helped. I was reluctant to go on it because of the problems that I had with Prednisone previously. Prednisone is the other thing that they use to treat this. There are very few doctors that specialize in the Adrenal glands and I was extremely lucky to find one. Now though because of being on the hydrocortisone, my immune system is compromised and I have to be very careful and if I get sick, I have to increase it and call him right away to make sure that I am taking enough. I also wear a medical alert to let them know of this so that if I am in an accident or get sick that they know to treat it right away. He also had me put on it that I was on pain meds so that they would also be given right away. This is very knew for me so I am learning a lot and finding out that many things are tied to Fibromyaligia or it is a cause or result of others. Like you, a lot of people think that I have something else, such as MS because of the fact that my arms and legs are so weak and I am losing more and more strength in my arms.

I hope this helps a little and if you have any questions, please feel free to contact me.

Lois

22

I do have one question, have you had a cpk blood test? This would possibly rule out polymyositis if it’s not elevated? My drs chose to not use prednisone unles I have a bad flare that also causes breathing issues, otherwise I’ve been helped greatly by imuran, assuming what you have might be auto immune it helps to slow down the immune response but for me doesn’t
Have the prednisone side effects. It’s another option you might look into. I know my gp struggled for over 20 yrs trying to figure out what was going on, it was thru the referral to an awesome pulmonologist that she started uncovering everything. First it was asthma that was out of control, then ABPA, then fungal treatment for that, the spiral cat scan that showed bronchiaectis, then positive Ana, positive sjogrens, positive cpk,on and on…now churg Strauss hashimoto thyroiditis, polymyositis sjogrens probable fibromyalgia…all hell broke lose for me between 2009 and current. I was prednisone dependent for about 5 yrs, and I’m happy to say that even tho I gained weight on it, I’m finally no longer dependent on it, so please really really really think long and hard and research other options before going that route. It never really helped me and my feelings are that just maybe it in some way it is what caused all hell to finally break lose in 2009 with me. It’s a rough drug " a wolf in sheeps clothing" so to speak.

23

Hello, I call prednisone my wonder drug. I only go on it when I absolutely cannot move or am in tears. Once I take prednisone, I'm better the same day, it works that good. I go on 7 day dose packs when I'm really struggling. My rheumy will not put me on this long term it brings on weight gain which leads to diabetes/heart disease. But, sometimes, I have to say I want quality of life over quantity esp in flares where you can't take another day. It helps me tremendously. I have something recently I have begun doing, this is the FIRST thing that has ever shown me it's working. It could also be a little remission but will not stop what I'm doing and if I flare badly in the near future I will know it truly was a remission. I am drinking 1/2 cu pineapple juice 1 tsp honey and 3tbsp of Bragg's Apple Cider Vinegar (with mother) I am shocked that my arthritis has not flared to where I need injections/prednisone during these winter months. That NEVER happens. I have heard wonderful things about apple cider vinegar and for me it's working. I had a horrible fibro flare awhile back. I've only had one more since and it only lasted 2 days. For me, when I'm in a restless leg night, I sit in the hottest bath I can take for at least 20 min to 1/2 hour when I return to bed I feel tingling all in my legs but I do not get the'restless' feeling. however My last flare the baths did not work. I don't know it's a strange disease that is hard to find what works and what does not. But as far as prednisone goes it works wonders for me but is not good for you.

24

Wow Teri ! And welcome back !!! And thank you for bringing this to our attention and sharing how it has worked for you :slight_smile: I am so happy for you !!! That is just amazing and who would have thought that prednisone could help this much … You go girl :-))))))

Hugs & blessings
dee B

25

Oh, Leesa! I know how you feel; however, I hope that you will read my very long rant on what Prednisone did to me! Talk about Quality of Life!! I had NONE for such a long time. Prednisone has far-reaching consequences if used over a long period of time. I wonder if your Rheumie tested you for the Rheumatoid Factor and Antiphospholipid Syndrome? In theory, Prednisone should have ZERO effect upon Fibromyalgia Syndrome; so I am wondering what it is that you have that is responding to the Prednisone? I firmly believe that all Fibromyalgia survivors should have a THOROUGH endocrine workup, as, in the academic literature, there is a fairly clear link between Fibromyalgia Syndrome and disruption of the HPA-axis of the endocrine system (hypothalamus-pituitary-adrenal). Some of the hormones that can be affected are the oestrogens, testosterone, DHEA, ACTH and cortisol. I do hope that, before prescribing Prednisone, your doctor got, at the very least, a cortisol level! If not -- I advise you to RUN, not walk, for the nearest exit! BTW, FMS is generally not treated by a rheumatologist.......but, rather, an internist of family practitioner. It is often very-well treated treated by a Nurse-Practitioner. I certainly would be interested to know how old you are and whether you have other significant disorders.

Hang in there, my dear. I am SO sorry that you are experiencing so much pain! BTW, I always recommend that people visit the website of the wonderful Dr. Devin Starlanyl, who was a Trauma Surgeon until she developed FMS - she no longer practices medicine. She wrote the first several books about FMS and has GREAT stuff on her website!! I think it is www.sover.net/~devstar. Be well!

26

I, for one, think that you have absolutely nothing about which to feel sorry, energy healing!

Goodness! This is a support group; if we can't say these things here, where on earth could things be said? I thought that ALL of the comments were emanating from love and concern, which makes every word valuable in my eyes...................

Lee in Oregon

27

I'm glad you posted the "treats everything". My allergist put me on Prednisone for a weekend because my shots weren't working and he wanted to give me a "boost". It worked like magic. When I went back to discuss it, he said that he figured it would work because Prednisone works for everything. My family doc said the same thing when I first went to him with the pain. He said he could give me something that would take it all away (Prednisone) but we needed to find out what was causing it. I was happy to hear that because I don't just want to take a pill. I need to know why it's happening.

If you think about it, it's kind of scary that one pill can help so many different problems. It might be a blessing for some, might not for others since everyone's different. But I have read that the side effects and problems that it could cause can be worse than what you're taking it for.

28

Hi Prednisolone does help dramaticaly. but at continually high doses it does have bad side effects, moon face, osteo- porosis, thinning of the skin, it also makes you eat like a horse but for bad flare-up's it can break the cycle, and if it helps you can stay on a small maintenece dose of 5mg or less but you do have to speak to your doctor before you take antthing as you don't know how it will interact with what you are already taking all the best jeannie

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I should have clarified it was the relief I have found towards my arthritis pain/swelling not the Fibro issues. Sometimes on these boards we talk about the numerous ailments we have and I got caught up in talking about how it works for my arthritis. For me the prednisone helps immensely with my arthritic flare ups. I use a wheelchair on and off and when my doc see's I'm really struggling she gives me weekly dose packs of prednisone, she is VERY reluctant to use it though, but she knows I deal with a ton of pain before I will even ask her, and I only go on these 7 day packs about 3x a year. She always says, "I know you think this is a miracle drug but it is not, the underlying problems are terrible" We, both me and my doc do not want to use it if we dont' have to and I deal with it until I cannot any longer. I put up with a ton of pain on a regular basis so when I can't get out of bed or hubby begins to have to carry me at times, I welcome it. However, I don't do it until I absolutely cannot function. I have, PSA, RA, degenerative disc disease, IBS, acid reflux restless leg. stomach issues, lung/breathing issues and Fibro. I have had arthritis since I was 24, I am 51 now. I know the arthritis is the culprit of so many of my issues and this surgery I had done last March to fix a completely caved in ankle brought on new trouble ( new painful and swelling issues) I had an ankle fusion that literally almost took my life due to blood clots in my lungs and a saddle, I have a lot of breathing issues still and my lung specialist has said it is due to the damage the clots did and I could experience this for many years sometimes it goes away and other times it's here to stay. The surgery has changed the way my legs feel for the worse and now my lower back is beginning to give me problems as well.My legs always feel a puling sensation now, numbness in some parts of my foot and defin my toes every hour of every day. It stinks. I use a scooter to go places with my grandchildren and even using a scooter I have numb feelings, my feet are a mess all crooked and deformed. I am including a photo of it after being on the scooter for about 4-5 hrs from a trip I did withmy children. My spine is loaded from top to bottom with arthritis, I feel this in the middle of my back, my shoulder and my lower back. A new me has evolved after being bedridden for 4 solid months and then another 1/2 month in the hospital in ICU and the cardiac unit from the blood clots. I am focusing on changing completely my diet which has been difficult but I'm hanging in there, I'm focusing on mostly alkaline food, trying to stay clear of dairy, fast food, meat, except for chicken here and there. And do things to help my body internally with apple cider vinegar, pure honey pineapple juice, and I am noticing a change and I can't believe it. I guess I didn't realize how very important daily intake of acidic foods was making me sicker and sicker. It's been a month of this so far and I'm seeing a difference however slight I'll take it and try to continue on this healthier path. I've had random nerve pain in my feet and legs especially that drive me crazy. I've only gone through 2 flares that had me totally exhausted and I'm interested to read the info you left regarding FMS. I still haven't researched much on how to deal with these flares as from what I read everyone says there is no help. I'm determined to change my eating style try to take my extra weigh off and see if this has any affect for the better. TY so much for educating me more and taking the time to leave valuable info. :)

30

I tried it, I ended up have a reaction to it. My throat became very raw and sore. Stopped taking it and the next day it was gone.

31

Do you see a naturopath doctor ever? Even a nutritionist who specializes in natural healing? I haven't had a car in 7 months and have been wanting to see anaturopathDr for the Fibro. I now have my sons old 1997 ford. What a clunker LOL but it gets me where I have to go. SO now Im going to go to this chiropractor /nutritionalist my family has been raveing about. Hes helped them with various health issues over the years. Glad you learned about acidic foods and how too much affects our bodies negatively. Ive been eating differently too. Mostly chicken stir frys. I get a bag of mixed frozen veggies, a rotisorie chicken and cook up a cup of organic brown rice. Saute it all together in my large skillet and that my lunch and dinner. Breakfast I eat oatmeal w raisins and nuts. I swear I live on this.LOL I need to think of some other easy healthy meals. I eat fruit during the day but Im still not getting enough calories. Just have to motivate myself to get to the nutritionist. Lately I get out of bed by 9am, eat shower feed my bunnies and sit on the couch. Maybe Im getting depressed not working. Boredom.

32

Hi teri,

Sorry you are having such a tough time. I'm glad to hear from you. The group has given you some very good info on Prednisone, here is the entire story, or close to it.

http://www.drugs.com/sfx/prednisone-side-effects.html

I just do NOT tolerate it well, it causes me many problems that are just as severe as what I could ever take it for. At this stage the bone thinning would be the most devastating, I guess. I would find it difficult to choose one problem to top the list, so...I simply refuse them.

I think it is very wise to go to Mayo Clinic or any other teaching hospital. There are answers out there, it's just a matter of not giving up the search for 'your Doctor', or 'your hospital' My GP always sends me to the Assistant Professors, which is what my Rheumatologist is. It saves a lot of time and effort, though having to wait for an opening can usually be 6-12 months, unfortunately.

As you know I am NOT a medical professional, just a patient that went everyplace BUT the Mayo for 7 years before getting a full diagnosis. When I went to Hopkins and Univ of MD, I went to Asst Prof of Orthapedic Surgery and of Neurosurgery, at the time they told me that surgery would only ever make me worse, however I wonder if they would still say that all of these years later... My GP keeps telling me I need the SI joints fused and the Stenosis surgery in lumbar, however the neck is not in great shape either!

My GP took me off Embrel first of the year, when I had this horrid flu that keeps going around, so I am debating if I want to go back on it. I have been SO exhausted from it the past year, I just kind of ended up going from the bed to the couch. I hope to be able to see how I progress if I do NOT return to it. Of course I am totally aware of the consequences. I see him again in March, and discuss it with him. (My Rheum)

Girlfriend, I'll tell you, with some of these meds, I'm not sure if it's a terrible relief to take them, or to stop them. The answer could only be 'YES"!

Wishing you well, and sending some love,

SK

33

No I haven't seen a Naturopath Doc. Not yet anyway. I do have a chiropractor that wants to see me and help with my diet, he says he swears educating me on his research will help me. I am curious but have had a lot going on medically with docs/tests again that I haven't seen him yet. I want to though. I'm glad you have the clunker now to get you around, I've had a few clunkers in my life time. lol I was bed ridden for almost 4 mths last year and had many visits to the ER. I couldn't walk for a long time, I'm still having trouble with numerous things happening. I try to get out regularly, to my kids houses, I can't stand being couped up, one of my daughters is an RN and the other is an OT so they make sure I have what I need when I go out or try to help with the grandkids. It hel

ps tremendously to be around others. and I welcome visitors. :)

34

Thank you all for sharing your thoughts and best wishes. It will take a while to absorb all of this helpful information. You are all such a wonderful support.

I will keep you posted. I go down to 10 mg tomorrow, we will see how it goes.

I like being back to the "normal" high energy me and able to walk and do things me. It has been so long since I have been "normal" that my husband is jokingly complaining that he doesn't have his "alone" time anymore, since I am feeling so much better that I keep "bothering" him. He has been so used to being in the care-giving role and doing things on his own for so long. :)

Blessings to all of you!

35

Hello, MrsK! I can relate! I was diagnosed with RA when I was only 5 and later developed FMS and osteoarthritis (and more). As someone who used Prednisone since its inception, I would NOT suggest taking it for longer than a few days at a time. I KNOW about the kind of RA pain that makes one beg for Prednisone (as I did as a teen), but longterm use of it will make you regret it! I have a longer post on here about it; please take it seriously. I do not engage in hyperbole; this drug can interrupt delicate endocrinological functions and make your life not worth living, affecting emotional as well as physical function. There are many other ways to control pain; specifically I recommend a multi-modal approach.According to the research (and my experience), that is what works best.

36

Check with your doctor but magnesium is proven medication to treat RLS you can find many articles on the internet which tells you all about it you don't need a script you can get at any pharmacy and it has dramaticaly improved my symptoms so good luck with that

37

Teri, I have taken it for Fibromyalgia, but I did not have the good experience that you did. I actually gained 50 pounds in two weeks and was going into anaphylactic shock from it. As a result I cannot take it due to the fact thy I am allergic to it I also am allergic to Lyrica and Gabapentin for the same reason. I think that it is good that you are checking into other diagnoses as I think that sometimes things get masked by other illnesses or medications. It took us 30 years to find out that I have Secondary Adrenal Insufficiency. I only recently found out that there are few doctors that even specialize or deal with the adrenal glands because it is so difficult. Once I learned about it a lot of rings that I had been feeling finally made sense. The tiredness and difficulty rushing now made sense because I didn’t produce enough cortisol to handle them. I now have to be on a very low dose of hydrocortisone to deal with it which scared me because of the Prednisone issues and that my immune system is now compromised. My endocrinologist was amazed that I functioned as well as I did for so long considering what this affects. So to make a long story short, I am very glad that you are investigating your symptoms further because I am beginning to think that some doctors still do not take Fibromyalgia seriously and /or give out the diagnosis when they are too lazy to due their due diligence. Best of luck to you in this journey.
Lois

38

Hi.....

Yes, I have been on Prednisone several times, for short periods.

Like you, I had wonderful results and felt like my old, healthy self.

Unfortunately, my health care provider will not let my take it long term b/c of the potential damage it can cause.

I can't tell you how many times I've wished that it were safe to use daily!!

Take care and good luck!

39

Hi

Years ago they used Prednisone for RA. My mother used it from 1969 until she died in 1995. The side effect for her was it took away her immune system.

Hope it will not happen to you

40

Hello Everyone,

I am now off of prednisone, due to many stressors including my health I ended up in the hospital with depression, anxiety, and suicidal ideation. The hospitalist tapered me off of prednisone, my creatinine (kidney blood test) and others were abnormal. Now I am back to being really tired again, but I will be going to Mayo Clinic in three weeks, so hopefully I can find something else that helps without such negative side effects.