I have been lurking around these posts for a while now and due to the fact that I am now detoxing from an original dose of 120 mg of prednisone per day started on the 3rd of October and am now at 10mg and going thru withdrawl HELL I have been reluctant to write, my thoughts aren't very cohesive these days and my brain is jello.
Up until I found these posts about the hiddeous side effects of prednisone I thought I was CRAZY!! I have spent endless nights sitting here at the computer researching the side effects and hoping to find someone-somewhere who had the same experiences as me while taking this drug. I have been unable to function as a normal human being and NOBODY in my life understands why....they think I am being a Drama Queen or maybe over exagerating my symptoms. I have been basically bedridden since being discharged from the hospital 2 weeks ago for status asthmaticus. I had the usual course of Nebs, IV steroids, Antibiotics...etc..spent 8 days total in 2 hospitals. Got sent home on 120 mg of Prednisone - Burst and taper to 10 mg as of today. I have gained 37 pounds in 2 weeks, I look ready to give birth which is funny because I can't have any more children. Every single bone and joint in my body hurts like hell, my skin burns, my mouth tastes like salt, I can't sleep, I am sweating like a pig, I have steroid psychosis, I feel like my brain is going to explode and I CANT TAKE IT ANYMORE. My boss at work is ready to fire me, My boyfriend is ready to kill me, my kids are ready to disown me and my life is out of control.
My doctors have stopped short of implying that I am faking this so that I can get pain pills...HA!! The only thing they will give me is Tylenol 3's and those are like friggin baby asprin...plus they only gave me 10 on the day I got out of the hospital and those lasted all of 3 days. Beleive me, if I wanted to get the good stuff I could get it pretty easy, I work in the chemical dependency field and it's easy to find...but I am NOT a drug seeker, I don't even take tylenol unless it's totally necessary !!!! I just don't want to spend another 3 weeks in pain and in bed. Is that too much to ask?
Even the ER doc on Sunday told me that I am "steroid" sensitive and that I should never take Prednisone again, then-a nice pat on the hand-go home and get through it the best you can-thankyouverymuch doctor.
As I sit here now writing this, I am not sure how much longer I can stand this. But it's at least reassuring to know that I am not alone and that this is REAL and I am not imagining it. Thanks for letting me vent.
It's ok hunny, many of us here on the boards know exactly what your going through, i've been there about the prednisone, it's awful isn't it. I'm sensitive to medication and usually am bed ridden on prednisone with side effects a mile long. It's a love/hate drug. Just remember it's keeping you here.
You are not crazy. Prednisone can be so helpful at first and then it turns around and bites you in the butt. I too am on prednisone for auto immune anemia. My dose right now is 17.5 tapering from 80 begun in August. The first thing that I thought is maybe you are tapering too fast. You started at 120 just a few weeks ago? And now are at 10. That is really fast. When I was on it in 1998, it took six months to taper from 80 to 0, and when I got close to the 5-10 mg range my body didn't like it and my symptoms got worse. SO I had to bump it up a few mg's and go much slower.
For this episode, I have a diferent doctor and he allowed a fast taper at first. Next week I will probably go to 15, then 12 etc as long as my blood counts stay high enough. The key is to go slowly. I knew what to expect this time - last time I was a total basket case. . .hungry all the time, punchy and mean and I gained weight. I have this time too, but not as much I've been working out, I didn't last time. Still I have the moon face, my neck feels huge and I look like I am pregnant too.
Hang in there. it will get better, it just takes time. I know how hard the love/hate relationship with this drug is. We know how much it messes up our bodies, yet sometimes we practically beg to have it in order to breathe. Have you read the book cooping with prednisone? If not I would suggest reading it, it has some really helpful tips about hwo to deal with the side effects of this lovely drug. And also the more you are on it, the better your body should be able to deal with the side effects from it, and the better you will be able to judge if you are dropping to fast or not. I know many docs use different taper scheduals and it also varries depending on who you see and how bad off you are...I know i've dropped pretty quickly as long as there were no iv steroids involved, but then sometimes, the docs just put me in charge of the taper since i know my body...any ways i hope you feel better and i'm sure this post isn't very coherent right now as i'm functioning on little sleep right now..but feel better
Thanks for the words of encouragement guys...
Bad day today....I feel like I want to die!! Everyone is fed up with me and I am fed up with myself!!! I will never ever take Prednisone again, even if that means that I die from the stupid asthma, nothing is worth this.
Yes, I went through prednisone hell several times and, like you, vowed that I would die before I ever took it again. And, guess what? I haven't had to take it in 3 years, even though I still have asthma.
I found a new doc that immediately removed me from all steroids and inhalers and put me on glutathione. It's an amino acid that you use w/ a nebulizer. You need a prescription and get it at a compound pharmacy. (My new doc is into integrative medicine.) With the glutathione I immediately felt better. After the first year, I used albuterol probably once. I have not used it since. Do a google search on glutathione; it should explains how and why it works.
I strongly suggest you find a doc that will prescribe this for you. It's certainly worth a try. If it worked for me it may work for you.
hello
Hang in there honey. I know it's hard. I've been on 40 mgs since april and 10mgs before that. I'm reducing at the mo as I'm on a new treatment which finally seems to be working. I'm down to 20mgs and reduce to 15mgs tomorrow. I am aching all over and feel like poo. I am covered in stretch marks and bruise really easy. When I look in the mirror a stranger looks back, my face4 and body have changed so much. I have had status asthmaticus a fair few time and have ended up in itu with my asthma. Just remember that the drs don't want you on this drug any more than you want to be on it. It is keeping you alive though and status asthmaticus is not somewhere anyone wants to be!
Take care
I am so sick and tired from taking Prednisone I feel like I am going to just cry!!! I have had this horrible upper respitory infection. I am on my 2nd pack of Zithromax which is unheard of for me. Last night my Dr. called in Prednisone. It had been ten years since I took this dreadful drug. They neglected to tell me not to take it before bed and I have been up ALL night long. My Mind would not shut down. It was like my eyes were closed but felt pinned open. I have two young children to get to and from school and care for and I honestly am afraid to even drive!! Here is my perdicament?? I took it at 8 last night and don't know when to take it today? I will not take it at night ever again..
I found a new doc that immediately removed me from all steroids and inhalers and put me on glutathione. It's an amino acid that you use w/ a nebulizer. You need a prescription and get it at a compound pharmacy. (My new doc is into integrative medicine.) With the glutathione I immediately felt better. After the first year, I used albuterol probably once. I have not used it since. Do a google search on glutathione; it should explains how and why it works.
I strongly suggest you find a doc that will prescribe this for you. It's certainly worth a try. If it worked for me it may work for you.
Best of luck, Lu
I tried looking it up -- but couldn't find it in anything but a supplement (capsule) -- and not for the treatment of asthma. Can you provide more information?
I'm so sorry you are going through this,,,it's got to be so hard. I never knew that pred can give you joint pain,,,thought my knee (that has had 3 surgeries on) was going bad again. Sure hope you feel better real soon.
~~Lorrie
Regarding the glutathione: you need to get it at a compound pharmacy (they make it there). You also need a prescription for it.
It is well worth finding an MD that will give you a prescription. Remember, this is the supplement that got me off predisone and kept me off the evil drug.
Regarding the glutathione: you need to get it at a compound pharmacy (they make it there). You also need a prescription for it.
It is well worth finding an MD that will give you a prescription. Remember, this is the supplement that got me off predisone and kept me off the evil drug.
If you have any questions, please let me know.
Lu
What else is in it? What's the dose? I can't find anything on the internet that talks about glutathione in relation to asthma. Also, the only the I find is glutathione as an over the counter supplement. I can't go to my doctor with that kind of information.
Look in the yellow pages and locate a compound pharmacy. Ask them if you can pick up the info on glutathione (the kind you use in a nebulizer). My compound pharmacy has such info so I'm assuming others do, as well. However, not all compound pharmacies make glutathione.
Or if you live in a town too small to have a compound pharmacy, google search "compound pharmacy." They should have the info on various compound pharmacy sites.
I find it curious that info on this isn't readily available. Again, please let me know if you can't find it.
Look in the yellow pages and locate a compound pharmacy. Ask them if you can pick up the info on glutathione (the kind you use in a nebulizer). My compound pharmacy has such info so I'm assuming others do, as well. However, not all compound pharmacies make glutathione.
Or if you live in a town too small to have a compound pharmacy, google search "compound pharmacy." They should have the info on various compound pharmacy sites.
I find it curious that info on this isn't readily available. Again, please let me know if you can't find it.
Lu
I called all the compounding pharmacies in my area and none of them have heard of this. Can you be more specific with the information?
Yes, and I hope this is legal on this board. Call the Key Pharmacy at 1-800-878-1322. Tell them you need them to fax the info on the glutathione they compound for respiratory ailments to your MD. You can also have your MD call in a prescription for you and they'll mail it to you--doesn't matter where you live. I had my mother's doc to this for her.
FYI, I just googled glutathione and asthma and there's tons of info online. I don't know why you didn't find the same info I did. Many of the sites tell you specifically why glutathione is good for asthma. This info should suffice for your doc.
I too have been on the Prednisone bumpy road. And it's not fun at all. I don't think the doctors even understand what it's like going through withdrawals if they haven't experienced it personally.
Glad to hear you're down to 10 mg. Hang in there. It could take longer than you expect to get yourself off because 120 mg is high and your adrenals probably shut down.
If I even go on prednisone at around 50 mg for more than 3 days, I start to get real weak and can tell my adrenals are becoming sluggish. So the key for me is not to take it on consecutive days, if I can help it, not to go over 50 mg (I've had to go as high as 90 mg) and more than anything else try not to have to go on it at all. But with my allergic reactions to insects, molds, chemicals, foods, etc. I can't always control what happens.
Keep us updated as to how you're doing. It's good to have people to talk with when you're tapering. * I never heard of glutathione .
I've been trying to wean of Pred for months now. This is the 4th time I have gotten down to 5mg. My whole body is hurting everywhere, I can seem to stay awake, the mood swings are terrible. The nausea is horrible. I also hate Pred. But it saved my life as well. Good luck to all of oyu.
