Anyone tried Prednisone? For Fibro. or anything else?

Hello Everyone, (sorry this is a little long)

I have tried everything to reduce my restless legs, to improve my poor sleep, so that my symptoms would improve. I stumbled, by accident, across Prednisone and read what happened. . . . .

I haven't been on this site for a very very long time. This episode started last April, and I have been unable to work since then. Since September my general fatigue, and muscle fatigue, balance and many other symptoms have gotten much worse. I went from hiking up a small mountain last March, to using walking sticks, then a walker after I was in the hospital for 5 days in November for depression.

I was diagnoses with depression, anxiety and somatization disorder. Then I attended out-patient mental health for a few weeks, where I learned coping skills for anxiety and depression, but the therapists, OT and nurses could see how much this all day program wore me out, as I often needed to lay down on the floor during lunch or some of the sessions. They told me I needed to go to Mayo Clinic, because I have more then Fibromyalgia, and I was misdiagnosed with somatization disorder.

I have tried many different combinations of the following medications to sleep better: mirapex (for RLS), gabapentin, klonopin, ambien and more. My sleep, fatigue, imbalance and muscle fatigue did not improve.

**** Just after Christmas, I had a really bad asthma flair and I was put on 40 mg of Prednisone for 5 days, then needed another 20 mg for 5 days to treat my asthma. Guess what???? In addition to treating my asthma, my balance improved and my fatigue improved!!! Then I was off prednisone and my symptoms were back, in addition I noticed more pain, swelling, and tingling of my head, shoulder, neck, hands and arms, etc. especially in the morning. Some days I couldn't get anything accomplished. I am still waiting for an appointment to get in to Mayo Clinic, but in the meantime my primary said we will treat the symptoms so you can feel better. I have been back on Prednisone, 15mg per day, for a little over a week, and it is like a new me. My balance, pain, fatigue and more has improved. I am moving furniture, and rearranging the house, and I am awake and much more active! I know Prednisone has serious side effects, but it is like night and day. ******

Anyone else been on Prednisone, for Fibromyalgia or other conditions? Do the benefits outweigh the risks? My primary thinks it might be Polymyalgia Rheumatica, which would require being on Prednisone for a year or two, but it could be many other things as well.

I have Rheumatoid Arthritis and Fibromyalgia and have been on prednisone for almost a year. My doctor is trying to control my pain other ways and ween me off the prednisone but the pain is back pretty bad so it really makes a difference. I went down to 2.5mg and I can barely get out of bed in the mornings.

hi terri. i think since we all have a variety of different symptoms and also varying levels of degree it may be prudent to try things and see if they work for you. that is, of course, if you have good trust and confidence in the doctor who is treating you. prednisone can be helpful as you seem to be experiencing now but of course you know it is not a drug for long term use. just be careful and know your facts. I did try it many years ago but i dont remember what experience i had. good luck and much love your way.

suzie

I am so happy that things seem to be going better for you! Please keep us posted on what the Mayo Clinic says!

I had Bell’s palsy prior to my Fibro diagnosis and was on prednisone to treat the bells. When I got through the prescribed 10 day dose I was in horrible pain and could not function so he added 5 more days for me. Again when I was done I had horrible pain in my neck and shoulders and back. He would not prescribe more and my journey began to figure out what was wrong with me and a few months later I was diagnosed with Fibro. I do not doubt that you feel 100 times better on it. My experience was over a year ago and I still remember how great of affect it had on my pain. I felt like a new woman on it even though I still had facial paralysis during that time I wish I could go back to those almost pain free days. Please keep us updated as I am curious if they find something else wrong other than fibro so I can have my doc test for it.

Pred is HORRIBLE stuff! It caused my cat awful problems, gave my sister a psychotic reaction (rare but happens) and gave my boyfriend's mother cancer when she took it for Fibro. It treats symptoms which doesn't resolve the real issues. You can use energy work to help your body heal itself, change your thinking to be as positive as possible (that will chemically change your brain) and use other natural methods like Apple Cider Vinegar, extra virgin coconut oil, and Kefir. About 70% of the immune system is in the gut which is where a lot of these issues start. Besides from an emotional and energy standpoint, all physical issues develop from emotional issues that haven't been dealt with and women with Fibro tend to take care of everyone else and not themselves until they break down. I am a Mental Health Counselor, do a lot of energy work and have worked with many clients with Fibro as well as having been diagnosed myself many years ago. I tried many of the meds which caused too many side effects. I was so bad I couldn't hold onto the steering wheel with more then 2 fingers and could hardly function. I am now off all my meds other then the supplements I just mentioned and some vitamins. Meds only make dis eases worse. All dis eases are an inbalance in energy. I also use and teach Emotional Freedom Techniques which is like acupuncture without needles (you tap instead on energy meridian areas). I am not telling anyone else what to do, I try to be respectful of everyone's journey, I only know what worked for me and for some other people who have tried it (including a client with an autoimmune disorder). Look up Dr. Lissa Rankin and Louise Hay, this will explain things further. GOOD LUCK and blessings and HUGS to you!


Susan

My sister who, like me, has fibro, calls prednisone her "feel-good" drug and uses it for flare ups with good results. My nephew and I (both of us have fibro) are allergic to prednisone. It causes severe muscle weakness and cramping so bad I literally cannot move.

I would say for you if it works and your Doctor is ok with it, use it, but be sure you and your doc keep out a watch for the long-term bad side effects.

Good luck and gentle huggss, Kimberly

The other posters are correct...this is a wonderful but terrible med that helps many conditions...until it does really bad things. Much experience with it due to son's Crohn's disease and mom's arthritis...almost impossible to get off, even tapering in tiny doses, for some folks. It is a med of last resort for many things, for a short time only. If you need it, you may need it but don't fall in love with it. It will also make you ravenously hungry at high doses, as well as affect your mood.

Just a thought. When I had severe neck pain many years ago from a whiplash I wanted to stop takeing pain meds so I went to a naturopathic doctor. He gave me Borage Oil. He said it acts as a anti-inflammatory. I started taking it and on day 4 I had no neck pain. It actually worked better than that the extrastrength ibuprophen. You cant take it if on blood thinners as it thins blood some. Its a big gel pill. I had forgotten all about that till now, Im going to try taking it for the Fibro pain and see if it helps.

Oh Teri, I feel your pain! CAUTION: Long post ahead . . . . .

I came down with PMR - Polymyalgia Rheumatica - in the Fall 0f 2006. It came on suddenly, but I had an excellent doctor and he spotted it and had me hospitalized on high doses of intervenous Prednisone for almost 2 weeks. I went home on 60mg Prednisone per day, and also on Vicodin for the pain. After a few months on disability I took early retirement because I couldn't function at my job (high-dose Prednisone also causes something very much like Fibro Fog).

PMR is an auto-immune disorder where your immune system goes crazy and attacks the bursa/synovial fluid in your shoulders and back of your hips (in med-speak, the proximal bursa). It can last anywhere from 6 months to forever (I still have it 7 years later, but it's much milder now). When I first had PMR my hips were so sore and tight that I could not lift my foot high enough to walk up stairs. I had to crawl the stairs on hands and knees to get to bed at night. And then I have to take sleeping pills, because Prednisone interferes with your sleep cycle.

PMR is treated by Rheumetologists. After about 5 years my Rheumy managed to get me down to 8mg/day, but if I go below that the PMR pain starts to build again. She also noted that my pain reactions seemed abnormal, and tested me for Fibro. Sure enough, five years of 24/7 pain had caused me to exhibit Fibro symptoms. So I'm now also on Cymbalta and Lyrica. I started those about 6 months ago, and I have been able to reduce my pain pills, and regain enough energy to lead a more 'normal' life.

BTW, before all this started I was hypothyroid for 40 years and diabetic (type 2) for 10 years. If you're diabetic, or had gestational diabetes, check your blood sugar frequently because Prednisone causes your liver to release HUGE amounts of stored sugar directly into your bloodstream, even if you haven't eaten anything. I have to take 2-3 shots of insulin every day.

Pednisone is a 2-edged sword. It is the only drug for most autoimune issues. One persone on a PMR board called it "the poison that keeps me alive." Go look up the side effects. I've gained almost 100 pounds over 6 years, and my doctors are concerned, but say that it's a common effect of long-term/high dose Prednisone (I gained most of it while I was above 15-20mg/day, and I've had stable weight since staying below 10mg). High doses can bring on massive mood swings. You can't just go off it - you have to SLOWLY work your way down.

If I had a choice, I'd say stay away from Prednisone. But if you do have PMR or any of the many other auto-immune diseases, that may be your only choice.

Sorry for the long post. Hope the Mayo Clinic folks can work it out for you. Please keep us all informed. We care about you.

Hi!

First, please don't apologize if you have a lot to say; it may just indicate that people may not have been listening to you! Having things that need to be said is NOT a social faux pas!

In addition to being a patient, I am also a Psychologist (retired). I do not believe in 'somatization disorder'; nor do I believe in 'psychosomatic' illnesses. People who use tired, worn-out old phrases such as these are revealing much more about themselves (and their ignorance) than about soave knmeone else. Notice that you never hear anything about 'somato-psychich' disorders (suggesting that a physical illness causes emotional problems), and it is well-documented that anything that causes pain, especially chronically, can CERTAINLY cause 'emotional' problems such as depression and anxiety!

I consider myself knowledgeable about Prednisone from an educational standpoint, but mostly from a personal one. My advice to you is; heed the conventional wisdom about it -- use it for the short-term only. From painful, personal experience, I can tell you that long-term use of it can do exactly what the Patient Information sheet says -- it can cause osteoporosis and seriously disrupt the endocrine system. I am an old woman; I had Rheumatic Fever as a child, and was diagnosed with Juvenile Rheumatoid Arthritis at age five. That was only the beginning; since that time, I have had additional diagnoses as I developed conditions secondary to the original autoimmune condition. One part of the endocrine is called the 'HPA-axis'; hypothalamus, pituitary, adrenal. Such a vital part of the body's functioning! When I was young, the only 'treatment' for RA was bed-rest! So when Prednisone was first on the market, I, in my teens, eagerly tried it. Wow! For the first time in my life, I could do all sorts of things I could never do before; I was limber and energetic! Best of all, I was pain-free for the first time in my memory! However, I was only allowed to have it during severe exacerbations. However, when I became pregnant at age 19, I was completely symptom-free (ignorant as I was, I assumed that I was 'cured'! Unfortunately, just hours after giving birth, my body became cruelly, horribly contorted. I was in agony and BEGGING for Prednisone. They gave it to me, as it was considered a 'wonder drug' and, from then on in, I took it whenever I could convince a doctor to prescribe it! It felt so GREAT to be free of those horrible, crippling symptoms! In my twenties, I became very athletic; I was a runner, a fencer and a tennis-player. I was involved in equestrian activities and various forms of dance. By my forties, I had added weight-lifting! I thought I was Superwoman! Little did I know that I would cause my endocrine system irreparable harm. I developed symptoms that were MUCH worse that RA -- severe weakness, loss of consciousness and, worst of all, cognitive problems. I became easily lost and often could not figure out where I was or what I was doing. I was in graduate school by then, and had to drop out -- several times. Not only because of terrible short-term memory problems, but because I couldn't drive. I got lost! I would end up driving around and around aimlessly because I could not remember where I lived; eventually, I could not even walk around the block alone! Truly! I could not remember how to get back! I went to doctor after doctor and got that wonderful IAIYH diagnosis; 'It's all in your head' !! I got weaker and weaker, smaller and smaller - I weighed less than 90 pounds! My BP plummeted to dangerous levels; still, since no doctors knew what it was, I got the label of a Depressed Woman. You know------"psychosomatic". Even the psychiatrist agreed that I was nuts!! I knew, however, that there was something organically wrong with me; I simply could not convince anyone else. In those days, owing to the influence of the 'wonderful' Sigmeund Freud, all women were assumed to be hysterical. I knew very well that I was dying, but I just kept getting those awful diagnoses; anxiety-ridden, depressed woman. After more than 2 years of that, having lost my school financial assistance, my job and more, I was finally admitted to a hospital. After nearly 3 weeks, I was diagnosed with Addison's Disease; I was producing ZERO cortisol, and cortisol is the only hormone which humans MUST have in order to live! I was right all along! I later learned that un-treated Addison's is always fatal! I was put on Prednisone right away and was all right within 2 days; ALL symptoms had disappeared!! I had to have supplementation from that time on -- only it should have been Hydrocortisone, which is not nearly so hard on the body.

Eventually, years later, it was found that the damage was worse than anyone had thought; technically it was NOT Addison's; instead, Prednisone usage had affected the pituitary!! So my diagnosis was - and IS - Hypo-pituitarism. Look it up and see if you want to risk having that! I also developed osteoporosis - in my 30's!

I cannot say that I wish I had never tried Prednisone; I CAN say, however, that I wish I had taken the warnings seriously !

The fact that you feel so much better tells me that you have something else in addition to (or instead of) Fibromyalgia Syndrome (FMS). There is no apparent medical reason that Prednisone should affect FMS at all. I hope you, first of all, see an Endocrinologist and have your entire endocrine system checked. You will need to get levels of cortisol, ACTH, all of the estrogens, testosterone, DHEA and more! (BTW, I do not produce any testosterone at all; I lost all of my ancillary hair and my libido at the same time. I have to have everything artificially supplemented; and supplementation does NOT nearly approximate the real thing! Also, having to take fistfuls of pills, injections and creams is not my idea of fun.

It IS a wonder drug, as they told me back in the 1950's; it is also a killer and should be used only occasionally.

Lastly, I hope that you get some Psychological counseling as well; with someone who has knowledge of the 'emotional' effects of somatic illnesses. Currently, I believe that the best-trained people are most likely medical social workers -- MSW's and LCSW's. If your city has a NASW chapter, that would likely be a good source for a referral; another idea would be to call the Social Work Department of local hospitals; try to get someone associated with a hospital or medical practice.

Please feel free to contact me at any time; please take good care of your Self - it is the only Self you will ever have.

The only other comment I'd like to make is do not limit yourself to Social Workers, they are better known due a larger lobby but LMHC's or LPC's (licensed professional counselors) depending on your state's letters they use, are actually trained better in how to do therapy (even most of my buddies that are MSW's say so, LOL!) instead of systems which is what MSW's tend to be trained in. I want to clarify about the mind body connection which is why I said to look up Dr. Lissa Rankin. She has done research to add to everyone else's research that shows WHY the mind and state of mind effects the health of the body, not the other way around. No one ever wakes up one morning and says "hmm think I will be sick today" but many people these days do realize that "Stress" (inbalance in the emotions) causes many physical issues. It is not something people manufacture on purpose or even know that they are doing usually. Yet once you learn that you can take charge of your life by changing your mindset (read about the Neuroplasticity of the brain) HOW empowering is that?! To learn that your body is meant to be healthy and that many alternative and complimentary methods can actually get rid of the problem instead of bandaiding it and masking it like meds do! Telling someone that they are stuck as they are and to learn to live with it is a very disrespectful thing to do but many well meaning docs do just that. AND many Fibro patients are trauma survivors and trauma lodges itself in your cellular memory until you learn to get it out in a healthy way (I am a Trauma specialist by the way). I have read tons of research about how many of the psychotropic meds in particular don't do what they say they do and mislead people or cause worse problems. Anyhow, having been in the mental health field for over 20 years I have learned a lot, changed my theories and found better ways to help myself and my clients. I believe that knowing you can heal yourself and then finding ways to do it is the most incredible gift we can give ourselves or anyone else! OK LOL off my soapbox. Good luck and G-d bless you in your search toward further wellness.


Susan (energy healing)

Hmmm..another retired clinical psychologist chiming in here, uncomfortable with some recos for various levels of mental health practitioners, all I will say. My wife is an LICSW so I'm pretty comfortable with her. My main caution with mental health folks is that some "don't know what they don't know." Caveat patient.

I think the perspective of fibro as a trauma disease is right on, though.

Don’t take prednisone after about 3pm if you want to sleep at night, it will keep you awake. I have years and years of experience with the stuff. Yes it reduces inflammation, yes you will initially feel better but the long term effects are not to be taken lightly. Plus it increases your appetite 100fold…you get bloating puffiness, swelling, which for me in the long run isn’t worth it. Now I only take it when my fibro,pm, flare really bad that the pm effects my breathing, and only then. Please if your thinking bout it, read and study before making that decision. It can have devastating effects or it can help…please be safe though…

I did not mean any disrespect to anyone's profession. I simply meant that there are more Social Workers so more people know what they are and that mental health counselors are also extremely well qualified Masters level therapists so to consider them too. We are all in this together to help people and that is ALL that matters! HUGS to you all!

Susan

None of us mentioned the most important factor of all; research has shown that the RELATIONSHIP between the Helper and the Helped is the most important factor - by FAR - including credentials, age, race, etc.! :-)

A very good way to end an awkward, somewhat off topic discussion for us all.

Good Work. (:-)

Absolutely and wish I hadn't said anything. I haven't been on here for awhile and wanted to be encouraging but it didn't come out that way at all. Sorry!

I know this may seem strange, but my husband has leg issues like RLS and also cramps due to diabetes. His endochronologist said to drink 8 oz of plain tonic water that contains quinine. He thought she was nuts but he tried itfor a week and found it made alot of improvement. He sleeps beter at night can tell when he forgot to. I know this wont answer your health issues but maybe ot may help. Good luck in finding answers to all your health issues. You are in my prayers

Cindy

From what I understand prednisone is a boost and it is very good with Asthma as well! It is mainly used to give a shock to your body....I didn't knew that they could prescribe it on a long term basis. If it works for you it is great! I heard as well that because is a steroid it could have severe problems with weight gain however when we are in this condition that is something that not everyone care as much as how we feel!