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fibro girl

Member
Joined
Jan 13, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Kentucky
During the long road leading up to my diagnosis I had a doctor that prescribed prednisone. I have to say that's the most pain relief I have had! Has anyone had this same experience? Is it possible to:confused: be put on a safe regimen?
 
I was just started on a round of Prednisone a few days ago and it is the first bit of relief I have had in a month and a half. I know that for the most part they don't like to keep people on Prednisone due to side effects and it shutting down the adrenal glands because the body depends on the supplement. However, I think I would be tempted to deal with the side effects if my pain level is decreased. I have heard that Lyrica works wonders. Have you tried that? I haven't tried any of the standard treatments yet, as I was going to try to go the natural route. I hope you find some relief soon!
 
I have used Prednisone, in the past when I was having a bad flare or an allergic reaction to a medication, and also to tone down the symptoms of fibro. However, I was told it is good for short periods of time and you must be checked now and then to make sure your adrenal glands are working properly. Also long term it can cause weight gain. It is very good for stopping the inflamation caused by fibro and other conditions.
I had taken it for a few months and then another doctor gave me a different kind of prednisone to slowly get me off of it completely. I think it is a drug you can not just stop taking, but you must back off of it slowly with your doctors help. :)
 
I used it for my asthma a while ago, it's a good medication, I heard it's also used by people who suffer from arthritis. I used this medication for a short time because the side effects are kinda worrisome. I'd not recommend using this for a long period of time, my mother in law used it and gained a lot weight on it.
 
I wish there was a way to safely take this medicine on a regular basis! I've also heard it's dangerous for extended periods of time but I LOVE how much better I feel when taking it. The difference in how I feel is like night and day.
 
I have tried lyrica and it helped me a lot with the numbness and tingling but not the all over pain.
 
I was on predisone for chronic sinus infection and it did nothing for my pain. Tylenol arthritis has helped maintain a pain level. My doctors have ke on gabapentin. So far I am maintaining.
 
I've typed a long reply to this post two times and both times it ate it. *grumble*

Alright, here we go again....

The feeling you get when you first start Prednisone doesn't last. I have no idea when I started taking Prednisone, because it was so long ago, but I think it was around 2002. I had been refusing my doctors request to put me on Prednisone for years. At the time, I didn't know a whole lot about it but, something told me to steer clear of this drug. However, in the early 2000s, I decided I wanted to go to university. I had graduated high school in '97 but, needed some time for me. When I was ready, I applied to Penn State and got accepted. During my second year there, I hit a wall. I couldn't walk up a flight of stairs without needing a nap. My math class was on the second floor and this building didn't have an elevator. It had one of those wheelchair lifts and I was too embarrassed to use it, so I walked up the stairs. Going up those stairs, never got easier. When I made it to class I wanted to put my head on the desk and sleep. I knew something wasn't right so when I went home for the summer, I saw my Rheumatologist.

She took blood work and my CK levels were 3000. That explained why I was so weak and tired. What did she want to do about it? Prescribe Prednisone, of course. I finally agreed to take the drug and she prescribed a dosage of 20 mg. She was hoping I could get my CK levels back in order, start me on some other drugs and ween me off Prednisone. We ended up trying Imuran, Methotrexate, Arava and Remicade. Either they didn't work or they caused me insufferable side effects. For example, Methotrexate worked but it gave me so many mouth sores I couldn't eat anything. Each Remicade infusion caused some sort of an infection which prevented me from getting the next dose on time. And so on. Prednisone was it.

Anyways, when I first went on Prednisone I felt like my whole world changed. I felt so good that I couldn't believe I waited this long to go on it. It was euphoric actually living live with considerably less pain. I was actually mad at myself for being so against it. I had so much energy I felt like I could run a marathon. Sadly, none of that lasted. Eventually the Prednisone settles in your body and the pain comes back. It may not be as bad but, the euphoric feeling is gone.

Your body will only make as much cortisol it needs. If your body is getting cortisol from another source (Prednisone) your adrenal gland stops producing it and shrinks. I can't remember the exact number but you only need a small amount of Prednisone for your adrenal gland to shut down. If you're taking more Prednisone than what your adrenal gland normally makes you develop Cushing's Syndrome. Cushing's Syndrome is what makes your face pudgy and causes the weight gain. However, that's not Prednisone's only side effect.

I have managed to ween myself down to 5 mg. I'd much rather be on 7 mg but, 5 mg seems to be where I can manage life without too many issues. Anything above 5 mg I become an insulin dependent diabetic. At 5 mg I just have to take Metformin twice a day and I'd rather take a pill morning and night than stab myself. Below 5, I am in considerably more pain and I feel sick to my stomach 24/7. So 5 is where I will stay, unless they find something else that works for me.

I have high triglycerides because of Prednisone. I have to take medicine for my triglycerides as, a low cholesterol diet wasn't helping. As soon as I stop the medicine they shoot right back up. I have to take Prilosec because, Prednisone eventually causes heartburn. I have to take antidepressants because I was flying off the handle for the slightest little annoyance (i.e., my mother was trying to help me out by making my bed and I bit her head off because I didn't want it made). It was uncontrollable, even though I knew what I was doing was wrong, I couldn't help it. I had to start taking Trazadone because I can't sleep and/or if I woke up, I was up for the rest of the night.

I've also suffered from the most dreaded side effect Prednisone has: Avascular Necrosis. At some point, the blood supply to my left femoral head decreased, causing irreversible damage to my hip joint. However, I've been told that I have to wait until I can, without a shadow of a doubt, not take the pain anymore before they'll replace my hip. Replacing a hip because of Necrosis isn't like a normal hip replacement. Apparently, the hip doesn't take to the new joint as well and I will need to replace my hip every 5 years. My orthopedist won't replace my hip until I come to him, on my knees begging because, he says, I'm too young for a life time of replacements.

Not to mention the weening. After you've been on Prednisone for a long time, your body needs it. Your adrenal gland isn't making any of your bodies natural pain killers. You have to force your adrenal gland to wake up and start working again. Weening, for me, was hell. Each and every mg I dropped caused a flare of all flares. I could not bear to be without Crocs unless I was in bed. Every joint, hurt so bad and I couldn't function because I was so fatigued. I was instructed to decrease my dosage by 1 mg every time I was flare free for two weeks. It took me over two years to get down to where I am now. I was miserable until I got over the flare and good for two weeks before the cycle started over again.

I'm sorry for the extremely long post I just want people who think Prednisone isn't that bad to know it is. I'm not an exception to the norm when it comes to side effects. It's a nasty drug. One I wish I never started, regardless of how I felt when I first started taking it. I really thought it was giving me my life back but, believe me it's short lived. That good feeling, you feel, in the beginning, won't last, I promise.
 
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I'm glad you took the time to type it out a third time, LivetoErr. These are very important issues and the warnings need to be considered even if it offers short-term pain relief. I didn't know about some of these things you mentioned, but I had a friend on it for UC a few years ago. He had the weight gain and had to keep getting tested, but that wasn't the worst of it.

From what I witnessed, when it was time to stop taking it, the withdrawal was that of a severe drug addict's withdrawal. Yes, even when they tried to do it gradually. What the bottom line turned out to be was that the withdrawal was worse than the UC would have been.

I know it's very easy to grasp at anything that seems as if it will help or is helping, but this particular drug, as you said, often causes much worse things in the long run.
 
Prednisone does cause immediate relief, but as far as I know, it is not good to take for a long period of time. Normally, doctors would describe for about 3-4 weeks and then after which, they would taper it down little by little until you stop using it. I do know for a fact that it is commonly used for extreme inflammation that need immediate relief, but not for long-term pain such as those experienced in fibromyalgia.
 
Yes, it is used for extreme inflammation and severe asthma, however that's mostly short term.

Actually, I had a moment in my weening that I wasn't fully aware of how important it was to ween. Especially, considering, by this time I'd been on it for 8 years. I just stopped taking it all together. I felt, I would rather have one extremely bad flare than go through one every two weeks. Bad idea. I ended up in the hospital with inflammation around my heart. When they found out I stopped talking Prednisone abruptly, they gave me a 50mg tab, a lecture and sent me home. Every one of my symptoms disappeared within an hour.
 
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