Prednisone withdrawal and adrenal gla...

United States

#86 Mar 13, 2012
Elaine: I have an enormous face huge chin buffalo hump. Fat torso and feel like hell. I've been on pred
For 3 months, am tapering off and feel worse than ever, pain increased swelling horrific fatigue. I'm soooo miserable. I feel your pain! I think it'll take as long as you were on it for it to resolve.... Not sure...

Colleyville, TX

#87 Mar 21, 2012
I have been on from 30mg of prednisone to 10mgs for Polymyalgia a fibromyalgia and it really helped alot although I gained weight from it. Then I lost my health insurance and couldn't see a doc so I started going through the withdrawl it is terrible I don't know if it's the lack of medication or the fibromyalgia and plymyalgia that is causing the pain. My chest hurts, I don't want to think about food that part I like, but every inch of my body is in pain. I finally gave in and called a friend of mine that is an MD and he is filling it for me and is going to help me tamper off gradually. I tell you the pain is terrible.

Colleyville, TX

#88 Mar 21, 2012
Kevin Mastronardi wrote:
Somebody please help me. I was diadnosed with Poly myalgia Rheumatica at end of Feb. I was put on Prednisone of 12-or 15 mil. I actually forget. I begged to not be put on this but the relief was there and doctor knew of no other remedy. Okay, now after crazy spring and summer, I am down to 3.5 -4 mil. I had 2 bad withdrawl attacks and simply boosted baxk to 4 mil. I would happy to bite the bullit and rid myself of this prednisone. I want to boost my adrennals but is that a problem under prednisone. Doctor told me, I would waste money on immune enhancing supplements like vitamins and minerals but I felt much better when I put them in my regement. I want off Prednisone. I went to Holistic Doctor and he said I would be off by December if I followed very very strict diet etc. I am afraid of shock and Diabetes and you name it. I am afraid of the backlash and I am uncomfortable with the steady course. I think there should be a counsel group for people on Prednisone. I have hit some depressing moments where i have thought my life is fading and I don't want to live. How can a doctor prescribe prednisone and not cousel me. I am so disgusted. I teach yoga and the heat and exercise helps greatly. If it weren't for the great students who have taken care to help me, i may have commit suicide by now. I work 2 jobs and it is difficult to be 100 per cent. It should not be this way. Tomorrow I am getting acupuncture from Chinese doctor who treats cause, not symtoms.. Please help me, I am a fun guy and my life is really being ruined.
I also have Polymyalgia Rhumatica and am on steriods have been for two years the Poly came after my cancer treatments from radiation and chemo. I hurt all over, sore throat, chest pains, there is not a part of my body that doesn't hurt. Hang in there we will get through this I lost my health insurance and so I ran out of meds for 6 days couldn't figure what was wrong with me. Feeling awful sucks. My frend who is an MD wants to taper me off and so he is going to help me with it, cn you really ever get off steriods?

Edmonton, Canada

#89 Apr 8, 2012
My father, who is 80 yrs old, has been on 75 mg of prednisone for two months. The hematologist has been treating him with prednisone because he had no platelets to speak of. He was tested for cancer and thankfully they didn't find any. The prednisone did work so far. His adrenal gland kicked back in and he is producing platelets again. The problem now is the tapering side effect of prednizone. He has a rapid pulse of 110, he is clammy at times and he states he is woozy. I guess that means he feels almost dizzy? Blood pressures normal. My question is is this a normal response to tapering of prednisone? Still tapering of the prednisone, he is at 40 mg as of today. How long can will he experience these symptoms post prednisone. He is going to his doctor this week and requesting another ECG. No chest pain symptoms, no edema, and no joint pain.

Vallejo, CA

#90 Apr 9, 2012
Have been on "P" for a little over a yr. have been off one week.
Need high doses of Aleve to manage the jt and muscle pain. Horrendous!

Have developed "small tender lumps" below the surface of the skin on my thighs - three of them all on the same day.
Anyone else have anything similar?

United States

#91 May 6, 2012
Anyone still read these? Have been off prednisone for 3 weeks now. Tapered properly. Was on it for 4 months. Only complaint is severe muscle ache and stiffness. Nothing relieves it, anyone have insight? Will it go away?

Villa Park, CA

#93 May 22, 2012
I completely understand what you're saying! I have been on high-dose steroids since 2007. I was in the hospital in 2008 for two months and I was on IV drip steroids continuously. All of a sudden, one day the doctor forgot to put the order for my IV drip steroids into the computer so they did not get ordered and the nurse did not realize it because I am on so many other medications! Two days later I was in the most excruciating pain in the entire world! I was vomiting, I could not speak more than a few words, I could hardly move, and I lost part of my vision! I tried to tell the nurse but she could not understand me and thought I was high on the pain medication! So I picked up my cell phone and push speed dial for my mother and cried into the phone for her to help me, she recognized my voice and got to the hospital and demanded a doctor! Finally when the doctor came he saw how miserable I was, and I had kept a journal of all the medications they were giving me at the hospital next to my bed. Thankfully that saved my life! My mother looked through it and gave it to the doctor, he noticed that I had been writing in the journal entries previously that I was being given high-dose steroids and all of a sudden it stopped cold turkey without explanation! He restarted the steroids and I felt so much better with in about 24 hours thank God! All I can say about this is that you need to make sure hospitals give you the right medications and also never stop steroids cold turkey!

Sunnyvale, CA

#94 May 24, 2012
Rory wrote:
I took prednisone for 7 years for Alopecia (hair loss) It gave me hair but my skin became very fragile. I decided it was no good for me and my doctor weaned me off it gradually. However upon stopping my ankles and feet swelled like balloons and I have considerable pain in all joints except my back and neck. I am toughing it out with Advil and I find that walking loosens up the feet and ankles and reduces swelling. I will be seenig a rheumatologist because I fear I may have some RA that was dormant while I was on the drug.
Be careful with the NSAIDs (Advil, Motrin) they can cause swelling in feet.

Sunnyvale, CA

#95 May 24, 2012
Cindy wrote:
<quoted text>
I also have Polymyalgia Rhumatica and am on steriods have been for two years the Poly came after my cancer treatments from radiation and chemo. I hurt all over, sore throat, chest pains, there is not a part of my body that doesn't hurt. Hang in there we will get through this I lost my health insurance and so I ran out of meds for 6 days couldn't figure what was wrong with me. Feeling awful sucks. My frend who is an MD wants to taper me off and so he is going to help me with it, cn you really ever get off steriods?
YES you can get of steriods, I have done it twice both times from years long treatment. It takes patience and persistance. GO SLOWLY. Realize that faster is not better, you need time for your body to adjust and for your adrenal glands to get back online. The same total dose twice a day is better for the adrenal wake up. Hang in there. You will feel sleepy and achy. It will eventually end. Good luck

Sunnyvale, CA

#96 May 24, 2012
lisa wrote:
Anyone still read these? Have been off prednisone for 3 weeks now. Tapered properly. Was on it for 4 months. Only complaint is severe muscle ache and stiffness. Nothing relieves it, anyone have insight? Will it go away?
Yes it will go away. Rule of thumb, takes about one-half the time you were on steroids for post steroid symptoms to go away OR if you were on more than two years it takes six months to a year for the effects to clear (those of pain and muscle ache). Try gentle streching and mild yoga for sort periods several times a day, this will help with the pain and stiffness. Movement is essential.

Cumberland Park, Australia

#97 Jun 8, 2012
Hi, I had been on prednisolone and prednisone for chronic asthma ever since the age of 2 and very high doses. I went off the pred medication when I was 15 or so, as my asthma had subsided enough to eliminate the need for the meds. I am now 40 and developed 'osteo-penia plus have degenerative disease in my back and knees. Three of my discs have hurniated L4,L5,S1 due to the long term effects of the drugs. Recently I have been on a 2 week course of Prednisolone for a 'chronic sinus infection' in the Maxiall Sinus area, and have 'polyps' so the ENT put me on this stuff again, as it is the only thing he said will hopefully get rid of it. Anyway, I am nearly tapered off with one week to go, thank goodness as it is a horrible drug to take. Surgery may be my only other option if this doesn't clear up. I was introduced to Olive Leaf Extract a few years ago and I had stopped taking it about a year ago, for various reasons and I wish I had of kept taking it. The best thing I have ever used for everything wrong with my body, ie; degenerative disease, chronic sinusitus and the other issues with fibromyalgia, allergies, fungal infections etc. Joint pain, Osetopenia, Osteoarthritus. I am not using it with the Preds though until I finish incase of drug interactions. Can't find an answer whether it does interact or not, does anyone know? One is an immune enhancer, the other (preds) do the opposite. I feel since there is no reports of it effecting the drug I may keep taking it to build up my immunity. So Olive Leaf Extract-High Strength liquid is a real find and I will recommend it to everyone. Also Vitamin D3 at 2000IU (safe level) while taking prednisone as prednisone deactivates the effects of Vit D. My doctor upped my intake of Vitamin D3 because of this. Jac

Invercargill, New Zealand

#98 Jun 16, 2012
I got rheumatoid arthritis in Jan 2009. I take methotrexate and prednisone. I have weened myself down to 6mg four times now. Unfortunately my liver and kidneys don't like the methotrexate so the dose gets dropped, then the RA flares, then the prednisone is bumped up and around we go again!
However, feeling somewhat of an expert in the whole prednisone weening thing I can offer a few suggestions.
The longer you have been on it the slower the withdrawal must be, these days its 0.5mg a month for me.
A good naturopath can help a lot with supporting the adrenal glands and get them working again.
Expect to feel tired and rest painful joints as much as possible. I use a sling for an aching hand or arm so I do actually rest it.
A diet high in fruit and vegs (about 60%) helps a lot and so does avoiding caffine and alcohol. I feel much better if my body is more alkaline than acidic. I use ph strips from the chemist to keep a check on it. Blackstrap molassas and cider vinegar make the body more alkaline too. There are some good charts on the internet that list acid forming and alkaline forming foods.
Regular massage helps ease the pain and swelling.
Sometimes its hard to tell if the joint pain is RA or withdrawal. In blood tests, CRP is a measure of inflamation. If its low but you're aching all over, the pain is probably withdrawal and its worth toughing it out. If its high then your RA is flaring and you need to get back to your doctor.
Warning - if you take methotrexate DONT use NSAIDS like ibuprofen for pain control. The combination can damage your kidneys.
Hope this is of some help. There isn't any quick fix with this drug. It takes a long time to get off it.

Airdrie, Canada

#99 Jun 16, 2012
Ann wrote:
I have been on Prednisone (7.5 mg right now) since mid-February. One doctor told me that I could not stay on it forever, but the rheumy I have now says he might leave me on it indefinitely. I am also taking methotrexate and the generic for plaqunil(sp.) The rheumy wants to put me on injectable Simponi. This is a new drug and he said he has only two other patients on it. I feel like a guinea pig, but if I am going to have any quality of life, I have to so something.

I am still very swollen with edema in hands, feet and legs. My hands are painful, stiff and weak. I have overwhelming fatigue and I walk around in a bubble of pain all the time but it does get better late in the day. It is difficult to get up in the morning because my knees are stiff and sore and my legs are so swollen they are hard to use. I'm wondering if there is something else going on here besides the RA. I have been to the Cardiologist and have no sign of CHF, so that is not the cause of the edema.
The only time my symptoms improved significantly was when the first doctor put me on a megadose of prednisone.(Sixty mg first day, fifty second day, forty third day, and so on for six days.)
Has anybody had any experience with the Simponi? I've heard nothing about it besides what the doctor said and what the information folder he gave me said.
Simponi is a TNF blocker but unlike other biologics made from mouse genes it is humanized. The hope is that it's long term use will therefore be tolerated for much longer. I've been on it for close to 2 years.

RA is a nasty disease & there isn't a treatment out there that doesn't have some side effects. But thus far the Simponi has held me at a reasonable level. So yes I've had experience with it and so far no difficult side effects.

Stormville, NY

#100 Jun 18, 2012
My uncle had RA bad a last year and i saw him living with it and me being extremely interested in the body and obsessed with figuring things out I dedicated myself to help him. So i did my research and found out this herbal medicine that claimed to completely cure it within 2 months.
I was extremely skeptical but i thought it wouldn't hurt to do a little more research. I did more research and found out that it stops your body from attacking itself completely, thus curing RA along with any other auto immune disease.
So i was extremely excited to try it on my uncle but unfortunately he passed away in a car accident before I could try to help him.:/(RIP)
so after the accident i threw that idea out of my mind for a while but now I'm interested in trying to help people that have it.

Then i thought why in the lords name would this not be a known thing within the medical industry. did more research and found patients on it and all but unfortunately the government has them and are preventing and further research on it.

I pondered why, and did more research and supposedly if this came out to be a regularly used medicine many other things can be cured along with it and it would cripple the economy because many the pharmaceutical companies would go under.

So i think its pretty messed up that the governments patients and laws have been protecting the drug companies well being instead of curing people who have to live with this life altering disease.

I'm trying to find people in the tri state area to help and if your interested in this ill send you my research and would love to set up a meeting with you because this has been a dream of mine for a while.

email me at [email protected]

hope people actually listen to this, and before you think its to good to be true let me show you the research.

Chandler, AZ

#101 Jun 20, 2012
Does anyone take medrol (methylprednisolone)? Have you had trouble with it not working and throwing you into withdrawl?


#102 Jul 18, 2012
I have suffered for 20 years since I fell 25 feet from the top rung of a ladder. No one ever suggested steroids. I have been told "suck it up" "Maybe if you lose weight" Inflamation has slowly taken over my body. I can't sleep for itching. This past month a doctor gave me a 60-10mg weaning dose because I was unable to walk at all due to a ripping sensation in my knee and calf. It took care of it 3 days. Not only that but my hands work again. I sat Indian style on the floor. For the first time since I was put on a walker 2 years ago, I felt fine walking and shopping without any assistance at all. I saw my pretty ankles and feet for the first time in 5 years. The swelling is not stop in my life no matter what fluid pill they give me...but the preds cured it over night. They are willing to watch all my organs fail due to being over medicated on other drugs, but they won't give me a maintance dose of this drug! I now have severe hypertension and am on 3 meds. I have developed diabetes, Obstructive sleep apnea. Gained 150 Lbs since the fall. So folks, your problems may not be the preds or "withdrawal" as you suspect. A maintance dose to give me a few years of joy with my family seems like a worthy trade off to me. But my doctors hold my fate and are choosing to let me live and die in pain when this month is clear proof that I could be helped to be almost normal again.

Austin, TX

#103 Aug 19, 2012
Has anyone else experienced the side effects of trembling in the mouth, or it maybe my jaw that is making my mouth shake? I'm not exactly certain when it began after I was taken off the Predisone, but it was within a month. I've never had trembles before in my life.

I had poison ivy and was prescribed Prednisone for a week, starting with 60 mgs the first day then tapering off each day. I had bad side effects while on it and was taken off it around the fourth day. I didn't think I was going to suffer any more then this started.

Festus, MO

#104 Aug 20, 2012
Been on pred for 6yrs only side effect was hot/cold sensitivity to my teeth that went away when dosage was lowered to 5mg. Been there 3 years and decided to stop completely a few days far nothing.......we'll see what happens.

Washington, DC

#106 Sep 20, 2012
I have auto ammune hep which is in remission.I was on predisone for a year.Now after two months i have stiff fingers and ankles.Will this go away.Or does this last foreveror or is it adrenal fatigue which will eventually go away.

Chillicothe, OH

#108 Oct 29, 2012
I have been on Prednisone for about 3 years, upto 20 mg daily that last year or so. I took several weeks to ween off of this drug. Now, a few weeks after weening, I have extreme pain in my hands, wrists, shoulders, feet and back. I'm getting ready to have major surgery on my back, but this other pain I'm dealing with now if for the birds. I can't take too much more and I am desperately seeking advice on how to deal with this pain beside take pain meds. I will be on enought of them after my surgery, but this pain in my joints is extremely painful, someone please help me.

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