Prednisone - It helps me, but why - New Here

Discussion in 'Fibromyalgia Main Forum' started by mgmarble, Mar 7, 2006.

  1. mgmarble

    mgmarble New Member

    Everything I read says Prednisone does not help people with FMS, but it helps me and is the only thing that does. I only took a very low dose, it didnt cure it but helped me out a lot. I was pain free for 10 months and was taking a thing now I am pregnant and I am worse then ever, now I am trying to get my obgyn and my doctor to prescribe me the Prednisone because it the safest thing to take while pregnant.

    I guess my question is, do I have FMS or is it something else because the Prednisone helps me. I have pain everywhere, it moves around, I am so weak, tired from lack of sleep of course, this time aroune my fingers and feet have became swellen, in the past it was not like that.

    I am just so upset, people just dont understand this FMS and now that I am pregnant I just want to crawl in a hole my pain is so bad. I am usually the most positive person a person could meet, but not anymore. Sorry to vent like this, but I figured this was the best place to do it at.
    Gin
  2. CanBrit

    CanBrit Member

    Is it possible you have rheumatoid arthritis or some other form of arthritis? I know that they sometimes give prednisone to handle the inflammation.

    I'm currently getting tested for RA because of pain in my hands and feet. I've also started developing little lumps around my joints and knuckles in my hands.

    Regards,

    Eileen
  3. mgmarble

    mgmarble New Member

    I have been tested for it and everything under the moon! I just wonder if there is something else the docs are missing.
  4. tngirl

    tngirl New Member

    I have taken a medrol dose pack a few times and it helps me a lot too. I do have fibro but also degenerative discs, facets and arthritis. I thought it was helping with the inflamation from the arthritis.

    I have a friend with fibro who does not have arthritis but her bloodwork shows a high inflammation level. Maybe that's why prednisone helps some people with fibro who don't have arthritis diagnosis.

    I can't take it all the time because I have a lot of stomach problems, but if I take a dose pack, it only takes 5 days and lasts in your body a couple of months.

    I have another friend with fibro and Chronic fatigue and she takes prednisone quite a bit, it helps her too.

    I agree that a lot of people don't understand what we go through. It's hard for me to understand what is happening to my body too.

    Have you talked to your doctor about the prednisone and he refuses? Is changing doctors an option?
  5. CanBrit

    CanBrit Member

    I tested negative a couple of years ago however, they say that in the early stages of RA, it's common for the factor to be negative.

    I know it's all very frustrating. I was diagnosed just last year and I'm still trying to come to grips with it.

    How long ago did they do you bloodwork for RA?
  6. tandy

    tandy New Member

    I had to be on prednisone for awhile before justy cause my sed rate was so high.
    Pred. will bring the sed down,....sed indicates inflammation. It did bring it down in numbers but I never felt any better. No less pain.

    However I do know that with a arthritic disease called Polymyalgia Rhuematica,... One will respond greatly with prednisone. Maybe thats something you should look into?
    Its symptoms are alot like FM.
    Hope this helps some :)

    Feel better~
    Tandy
  7. laura81655

    laura81655 New Member

    Hi Gin, I take a low dose of Hydrocortisone which is not as strong as Prednisone. I still have pain, but not as bad. What I take is equivalent to only 3mg. of Pred. a day.

    I don't have a high Sed rate, been tested for RA and all the other autoimmune disorders. Fibro is an autoimmune disorder, even though there isn't a definitive test to prove it yet, that's why I believe the cortisone and Prednisone helps our pain.

    I get a sustained release form called Cortisol from a Compounding Pharmacy, maybe you could ask your doctor about this also.

    The hormonal changes from your pregnancy may also be affecting your pain increase too.

    Hope you get some help soon!

    Laura

  8. WoodstocksMusic

    WoodstocksMusic New Member

    for boarder line low thyroid function.... if you fight chronic fatigue and the tsh is boarderline low then the prednisone would help but after you come off the pred you might find yourself slip into another fatigue stage as your body thinks your supplying it with plenty of steriods and suddenly it wakes up to frantically try to produce it.... that helps explain the fatigue you might go through when you first stop the prednisone treatment...

    your body will stop making it naturally when you are taking prednisone then suddenly the body is jolted awake ofter you stop taking it.

    Prednisone however sent my thyroids into hibernation and I spent several years with very very low...normal but low tsh levels...high fatigue during this time of low tsh results...

    prednisone is a very dangerous drug...be careful with it.
  9. JuliannaG

    JuliannaG New Member

    Prednisone is a dangerous drug, with many side effects.

    I was given it when I was first diagnosed with FM. It took away the pain, and gave me heaps of energy - I was bouncing off the walls, but the pharmacist warned me to increase my calcium supplement, as in the long term, it can lead to osteoporosis. I am off it now, but go back now and again on a low maintenance dose when I REALLY REALLY feel I can't cope anymore.

    You also can't stop it dead - you have to wean your body off it, otherwise your endocrine?/adrenal? (can't remember now, brain fog!) system can crash.

    On Monday this week I had a really bad day. I had a dull headache, and pain from my head to the tips of all my toes. I barely made it through the day at work. As soon as I got home, I took a Paracetamol/aspirin painkiller, and slept dead for an hour. When I got up, I felt 95% better.

    How far pregnant are you? Are you sure the swelling is from the FMS and not from something else due to your pregnancy? I had toxaemia when I was pregnant with my first child, and gained about 20 kgs.
  10. petsrme

    petsrme Member

    You could possibly have RA or lupus or any of the things you were tested for. Many of those things must not show up at first on tests. I was tested for years for lupus before my ANA was elevated. Doctors can't be sure, so we have to keep being tested or seeking answers. Whatever the case it is good that you found something to help you. It is a drug with many risks and side effects but for many with lupus it is a life saver. Best wishes to you and welcome.
  11. 69mach1

    69mach1 New Member

    but personally have you googled the side effects fo prednisone> go to mayoclinic.com...read about it please....

    i have been on high doses for other reason and i would rather die than be on that drug ever again...this will affect the baby as wel..i had to taper off this med so i could get scheduled for surgery to take my spleen and gall bladder out...i was at high risk of hemmoraging...it thins the veins out...and that is why the doctors may not want you on them...you could die very easily....and i know when i was on them it changed my mood i could not sleep i had geographic rash from this...and of course gained a ton of weight in no time flat...


    josie
  12. mgmarble

    mgmarble New Member

    Thank you all for your responses. I go again to the doctor for my test results. Yes, I know all the side effects of this nasty drug and praise God I didn't get any as of yet. I was weaned off of it and it was good and I was pain free for 10 months. I am six months pregnant and I am in extremem pain and I am so scared to care for a new born when I can barely lift a pillow. I have a 4 and 8 year old and my husbane has three close by and one out of state. He is supportive thank God and does not care if the house is messy, but I feel horrible I want to be a better wife and mother.

    At first I thought the swelling of my feet was the pregnancy, but the pain was so massive and then certain fingers would swell. I am going to ask my doctor about the PMR. I can't lift my arms and if I do it hurts so bad and sleep, what is that. I am sure you all can relate. Please just pray I get better so I can take care of my new baby in June. BTW it's a girl!!!

    Again thanks for the responses and I will let you all know about my blood work. Gin
  13. mgmarble

    mgmarble New Member

    Hi all back from the doctors and of course all my lab work was fine. He did prescribe me a low dose of prednisone. I just pray I get some relief. Off to get some sleep! Thanks all. GIN
  14. Anita B.

    Anita B. New Member

    MG Marble: We all wish you well and hope that your course of low dose prednisone helps you as it did before. It is interesting that it's so often said that prednisone doesn't help FM. As far as I am aware that has never been proven by any study. I think that long ago some source said that prednisone doesn't work and other sources picked up on that statement and repeated it to the point that it became gospel. My internist, who is very familiar with FM and CFS as well as with other hard-to-treat diseases, has told me that many people with a variety of illnesses feel better on prednisone, but he believes it is a poison which, in the long run (and especially at higher doses) can cause so many problems that it's not worth taking it. I have asked several doctors about the possibility of prescribing prednisone for me and none of them wanted to do it because they believe it just has too many side effects. They wanted to prescribe other things that are commonly used to treat FM and CFS. So, I personally have never tried prednisone and don't know if it would work for me, but I wouldn't be surprised if it made me feel better, were I to take it. For those who want to take it, I think it's a matter of balancing risks and benefits, taking the lowest dose possible, and being careful to take calcium and magnesium supplements daily.
  15. lin-z

    lin-z New Member

    I have posted in a few areas here about how my new rheumy put me on 5 mg of prednisone daily and weaned me off everything!!! Including any pain meds as long as I was feeling ok...And I did feel better almost immediately so I dont need the heavy narcotics like I did. I will see him monday and I know he has a reason for putting me on this (blood work...symptoms but I've had this dx at least 6 months)


    I know its a terrible drug with long term BAD side effects but i think alot of the stuff we need to survive arent the best for our bodies..but helping us cope. So I will keep you posted and we just need to find a dr we can trust and that is doing the best for us...hard to find for sure...


    Anyway this dose of prednisone has kept me from cancelling a long planned trip to fla. and spending time with my family down there so I am ok with it for now...

    love to ya Gin....Lin-z
  16. mgmarble

    mgmarble New Member

    I have tried so many medicines and even narcotics and nothing helps but the predisone. Myself I think most meds are bad for you, but I need to start to feel some relief soon. Prednisone is safe and won't hurt the baby so I pray it works this time! hopefully after the baby is born I can try some other meds.
  17. littlebrownwren

    littlebrownwren New Member

    I am on prednisone right now.

    I have fibro, rheum. arthritis, osteoarthritis and degenrative disc.

    Just last week I had to see my arthritis doc. My left arm was killing me. It seems I have no cartlidge at the base of my thumb where it connects to the wrist.

    Had a shot of cortisone in it and it has has helped tremendously.

    I am on a 12 day dose and after that I will return to my usual dose of 5mg a day.

    One bad side effect is weight gain. Since this is the 2nd time I've been on a dose pack in 6 months, I've gained 11 pounds. ACH! I have a class reunion in May so a double ACK!

    When I have to go on large dose prednisone, I tell my family to guard the furniture because I may start gnawing on the table legs, LOL.

    Wren
  18. ma2alex

    ma2alex New Member

    I don't mean to worry you or question your doctor, but I must tell you that I was told I could absolutely not take it while I was pregnant. I was in so much pain, I could not use my right arm at all. My OB told me no way! I like you have found prednisone to be the only drug that provides true relief from my fibro. I must agree with the earlier post that whoever says it doesn't help fibro is wrong. (that is what my doctor told me also) Despite the fact that I feel so much better when I am on it, I cannot find a dostor who is willing to prescribe it because it is such a dangerous drug.
    I don't know if it will help you, but when I was pregnant, I was really glad to have a memory foam mattress topper. It made sleeping possible (along with 2 body pillows!)
    I will tell you that I feel for you and I am so sorry that you are misserable. I was never more misserable in my life than when I was pregnant. But it was worth it!
    Dawn
  19. mgmarble

    mgmarble New Member

    It is very safe it is a class category c drug and my doctor made sure and looked it up as I did. It is probably the most safest thing you can take. I am also only taking 5mg so its a very low dose. Some doctors just won't give you anything. But I have to be able to function to take care of my other 2 kids and 3 step children when they are here. Do some research on the net, it's safe. I guess nothing is guarnteed though. GIN