HI there, This is my first ever post so hope i explain myself right, I'm 34 years old with two young children and I've had rheumatoid arthritis since the age of 21, I've been on prednisone for almost 8 years constantly , even through one of my pregnancies, I have to say reading some of your posts i was never told that you shouldn't be on them for any longer than 3 months. Without steroids though I wouldn't of been able to look after my two children, so really just persisted on, but now my children are a bit older i really need to get off them!!! I had my hip replaced last September and I'm going in for an operation next month to get my toes broke....
I've been desperately over the years been trying to get off steroids, but no doctor has taken me seriously so it led to me just stopping them completely, which normally ends in my body not reacting to well and ending up back on them on a higher dose!! I'm sure you'll agree mood swings, weight gain, tiredness are just a tiny handful of the symptoms.... Little did i know that when your trying to withdraw it's even worse... Some days i used to take 30mg a day, some days 10, like i said before i have never had any doctor or rhuemy monitor me on them.... I spoke to a new doctor recently who joined our surgery and I explained how important it was for me to get off them (at this stage i was only on 10mg) he told me to start reducing them 1mg every two weeks, have to say until i got down to 5mg everything was ok... At the minute i'm down to 2mg a day and really struggling, i'm also having terrible side effects:- these are once again just a handful:- beating noise in ear, loud ringing noise when i sleep during the day and i get paralysed and can't move (must say very scary!!) extremely tired, sore heads, tension in my head, ears feel runny, my white blood count is extremely high, neck ache and really bad skin feels like sandpaper on my face..... I'm having a really bad day today and have just been worrying constantly and the more i read the worse it gets, have to say i'm quite scared.... does anyone know if it seems quite quick to reduce me 1mg every two weeks after 8 years of use?
I'm now on a remicade drip every 8 weeks and sulfasasaline which appears to be helping so really need to do this, I don't have any family support apart from my partner who works constantly to keep us afloat or any friends to talk to about this so really just wanted a chat and to see if anyone knew anything.... Thanks for reading my post and hope to hear from someone soon %-)
Hi stellios23,
this business of getting of steroids isn't an exact science so I suppose few doctors will be willing to commit to a number and they will be quicker to ask you to revert to your previous dosage in case some side effects become life-threatening.
It's pretty much how much can you take. If your body is able to take the reduction of 1mg every two weeks, then keep reducing at this rate. Otherwise, make that 1mg every 3 weeks.
Always look at the big picture and know that you are determined to get of it. You'll get there eventually.
Hope this helps.
Hi eljh, Thanks for getting back to me! When you say "life threatening" what do you mean? I read loads of posts and it says that, but never says what can happen... To be honest i think i'm just having a bad day and hopefully by the morning things will be looking up again!
Really appreciate the response
Although I was only on prednisone for 6 days, the withdrawal symptom that spooked me was high blood pressure together with fever. I never had high blood pressure, and I got really scared when this happened in the middle of the night and my temperature was increasing. I was also vomitting so I was glad the panadol I took stayed in my system and reduced my temperature. I was really wondering whether I was able to get through the night or have to check into the hospital.
The situation may be different for everyone. So far most of what you have experienced I think could be as per your definition a bad day.
eljh
suppose increased heart beat or blood pressure?
Hi everyone.
My name is Cristina and I've been on Pred for about 3 months and a bit (16 mg) as adjuvant treatment for my Myasthenia Gravis. I had surgery almost 3 weeks ago (thymectomy) and I have started tapering off the med two days ago. I am supposed to get to half in a month's time. Even though only two days have passed, I can already feel the effects of withdrawal: headache, dizziness, weakness and, most annoying, a shortness of breath. These can very well get mixed up with my MG symptoms, but I doubt it at the moment.
I absolutely loathe this drug, even though it helped me with my surgery - it's vile and the side effects have a lasting impact on your body. Apart from this, I also have a seronegative spondyloarthropathy, which can mean I might have lupus, rheumatoid arthritis or any other mean autoimmune diseases. The pain in the joints can very well come from that, but even so, I'm terrified of the withdrawal period. I only hope I can get off it completely (in time, of course), without making my MG symptoms worse. Having to stay on Pred for the rest of my life is not a prospect I relish.
Take care and don't give up!
good luck with your withdrawal, I have been on the horrible stuff for nearly two years for Polymyalgia I am now on 0.5 mg which is no fun as I have muscle pains fatigue etc like everybody else.
Take care
How are you doing now? I have had Polymyalgia Rheumatica and was in the same state as you. I was prescribed 15mg per day of Prednisalone for six weeks and then told to reduce them by 1mg every two months ( a long time I know). However I at last got to the end, March 31st 2013 and stopped taking them. As someone on the website said I felt like I had been hit by a bus or rather bashed with a baseball bat all over.I felt so ill, the pains in arms and legs were worse than PR. However I am now on day 10 and the pains are lessening, I still feel absolutely knackered but hopefully this will get better, I am awaiting a call from my neuro to go for another synacthen test to see how my adrenal glands are doing. Wendy
Hi stellios23 the life threatening bit is all about adrenal glands, I had to reduce steroids by 1mg every 2 months and I still had horrendous withdrawal symptoms, fatigue, painful muscles total weakness. My trouble with adrenal began about a year ago, I had picked up a water infection given anti biotics but not told to up the steroid dose. I collapsed got carted off to A & E and was told in no uncertain terms by the neuro professor that if the medics hadn't put me on a drip in the ambulance I would have had a addison crisis and could have died. The answer is if you feel at all unwell while on steroids or have any infection take extra.
Hi I am now off steroids altogether but I feel dreadful, I am exhausted most of the time, my arms and legs are so painful I could cry, I can't walk far which for years has been our favourite pastime. I have an appointment to see my neuro tomorrow we'll have to see what that brings. Wendy
Thank you for your blog. I too was on Prednisone for 3 months. This was only suppose to be a prednisone pack but was inreased to 30 mg after being weaned down to 4mg for lingual tonsilitis. This later turned out to be from GERD. After the 30 mg boost I went to 20 mg for 3 days then 10mg for 3 days at that time my ENT doctor did not wean me any farther and yes I ended up in the ED crashing because I had been on steroids for a month and a half. In the ED I was given solumedrol and a 20 mg prednisone pill po and placed on 2mg for a week and 1 mg for a week. Fours days after that I crashed again. I was bumped back up to 30 mg and the hospitalist wanted me to be on a two month wean. Unfortunately my stomach could not handle this and I refused and went back to my endocrinologist. When I got down into the lower doses I became extremely depressed I could not find an antidepressant that would work for me because I had a reaction to most. I ended up with suicidal thoughts and ended up in a behavioral unit to finish off the tapering doses of prednisone and to get regulated on an antidepressant. This has been about 4 weeks ago. My musles still hurt and I feel jittery and nervous in the mornings. It is very sad but I have lost interest in everything. I have a wonderful family and support and I have made them all walk on egg shells around me. I have been praying every day. I do see a therapist and psychiatrist but have only started. I even have some psycological issues now. I now know that I am not alone and that this drug should only be handled by doctors that know how to taper doses. I was boosted up a total of three times I am fighting hard but it has been very difficult.
I took a 14 day with tapering off. I stopped one day early because it didn't help and I was feeling horrible.
Within 2 days of stopping this drug, I have been in PAIN. My muscles ache, my joints ache, I have a headache, and now several rashes that are burning. My skin feels like it is on FIRE! My muscles feel like they have been beaten. I feel like I was in a horrible car accident, but there are no bruises. It has been a week and I'm no better. I broke down last night crying over the pain.
The skin rash looks and feels like shingles, but I think it is just the drug. My scalp has bumps. I will NEVER take this med again. I had heard bad things, and was recommended to not take it, but a bad case of bronchitits and I was desperate. I will never be desperate to take prednisone again. This is a med of torture! Stay away from it. Why didn't I listen? I will never take pharmaceutical meds for granted again. Some of these drugs are poison.
Read the book by Jane Pauley re prednsolone with antidepressants and ensure they are not giving you a contraindicated anti depressant. The combination can cause bipolar disorder. I was on prednsolone from 1970 to 84 under an Ipswich specialist John Paulley. He is now sometimes called "The Ipswich Mengele" as he appears to have been using his NHS position to conduct research prescribing patients steroids they never needed.
Hi there, I have been taking predisone for about 2 months now and I have rash all over my body as well and specially when my skin temperature suddenly change.. are you still having rash after you stopped taking predisone ? .. I'm so concerned that my condition might be a permanent and caused by predisone!
Yep I hear you its a terrible drug. I too have osteoporosis because of it too. I had to be on it long term for thrombocytopenia