Severe Joint Pain while tapering Prednisone pills - started with 60mg dose?
Question posted by pink_ninja on 7 Nov 2010
Last updated on 11 February 2023 by Fair Review
Hi everyone, I'm currently tapering from 35 mg a day to 30 (this week), and I'll keep at that 5 mg down a week taper rate until I hit 20 mg and from there it's 1 mg down per week. At my highest dose, I was at 60 mg a day for a couple months. So far this has caused extreme anxiety and nausea, but I am learning to deal with that. Unfortunately, my newest side effect is extreme joint pain - particularly in the early morning while I'm trying to sleep. I feel like my knees and now my ankles are on fire with a terrible stabbing pain. Each time it has happened, it occurs during the first nights after I taper down from a previous dose. Has anyone gone through anything like this? If so, are there any suggestions? I would appreciate anything. I honestly feel very alone in this process.
I am on prednisolone for posterior scleritis. Started st 40mg for 1 month, now tapering 5mg down each week. 35mg was fine. 30mg last 2 days and one leg has developed pain in the calf. Could be too much exercise, albeit gentle. Thank you for telling me about water and potassium.
Votes: +0
CH
Charmk56
1 June 2018
I also experience all of these side effects after 3 years of different doses. Make sure you are getting enough potassium. Your doctor's should be testing your blood for these levels. That can really affect the pain in legs and joints. I take magnesium suppliments 400 mg per day and drink Gatorade for electrolyte replacement. It really helps! I am suffering Cushings Syndrome from this drug and have been tapering for 3 months, down to 10 mg now. Still have terrible swelling in my neck and under arms. Also the buffalo hump. It's a terrible drug and I'm hoping I don't have to suffer the side effects forever. It's hell.
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BO
Bobbys girl
1 June 2018
I have been on prednisone for about 8 months now up and down... trying to remember how much... 30 or40 at the most... was diagnosed in Dec 2017... up and down because prednisone was the ONLY thing that stopped the pain... not even pain pills... woke up during the night with the worst pain I've EVER FELT in my life... such a burning stabbing pain and stiffness in knees, ankles, hands (and fingers), couldn't walk hardly at all, but had to keep getting up to go to the bathroom... again from pred.
Since then, it has caused my cataracts, extreme muscle weakness in my hips, legs, and back, yeast infection in throat... maybe more, and who knows what else! Loved it at first, now giving me side effects... so good for cough and rashes, too, now... they are looking for a second RA med... I have a lung disease, so I can't be on Methotrexate... on leflunomide or Arava 1/2 tab because it affected my liver. Trying to taper my pred... down to 17mg now.Tapering 1 mg every 2 weeks... taking lots of meds... getting cataract removed... found out I have glaucoma, too and a hole in my septum... ugh... good luck everyone... stay off pred if you can or for a short time!!!
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SP
Spartan117
19 Nov 2017
I'm sitting now still in severe pain, I experienced shin splints will playing tennis, this pain was like that. I was on 20 mg of prednisone, was taken it for like 1 year, she said to try to stop. That was wendsday by Saturday night I was in so much pain that I couldn't work on my car, I took 2 20 that night, without sedatives I would not have slept. In the morning I could walk but only to restroom which hurt so bad. I took 2 more this morning but the pain is still to where I will not go anywhere if I can. Laying in the recliner brings some relief, looks like I guess I have to deal with side effects prednisone.
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BR
Brteyes2u
26 Oct 2017
I was on prednisone for 6 years, was tapered off reducing dosage until completely weaned off. 5 weeks after being off I woke up with severe burning in palms of hands and numbess and pain in hands, knees,calfs and feet. I could not even open medicine bottles. Doctor told me this is very normal when going off prednisone. I'm on Imuran to suppress my immune system. I'm on a liver transplant list. Doctors say the only thing that can be done is put back on prednisone, sence that is not possible only thing left is pain management. As much as I hate taking pills including pain medication I had no choice.
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GA
Garymuzin
7 March 2017
Yes I'm on my last day of 35mg which was prescribed for 3 days,I started with 40 mg for 3 days and so on down for 3 days.I just got bad knee pain so I assuming it is the prednisone.To date I've been fine.
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RO
Rocky26505
6 Oct 2016
I am in remission from "minimal change disease of the kidneys" so the prednisone worked. I was on 80mg per day for 16 weeks and then stepped down slowly until 0mg on August 25, 2016. I had many side effects - could not sleep, could not think straight, high glucose, dry mouth, and etc. - now I am having the after affects of sore knees and hips and it is very difficult to get out of a chair. I do not know how long this will last. I cannot drive and I still need a cane to walk.
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LI
Lizfor
4 April 2017
Hi Rocky, your experience sound so much like mine except that it was not for kidney disease. I started on prednisolone 60mg per day and now 20 weeks later I am still on 47.5. as different doctors keep raising the dose again.
All of your side effects, not sleeping, no concentration, lousy memory, high glucose (steroid induced hyperglycemia) , dry mouth and eyes, I have too.
I am at a loss to know how they will taper this. Are you able to tell me how you did it and how long it took? I realise yours is a vey old post and I hope by now you are fit and well.
WE
Wellsy91
14 July 2017
Welcome to the nightmare of prednisone, I have what you have too, stick it out, it goes away when prednisone leaves body
RO
Rocky26505
14 July 2017
It is now July 14, 2017 and I have been stepped down from 80mg / day to zero on August 25, 2016. My joints are no longer aching and I believe that has been a few months. The after affects of prednisone still causes me weakness in knees and hips but I trust that I will gain my strength again.
I just woke up with these same joint pains and needed to know that there is someone else out there. I know it is the prednisone tapering causing the pain, it just doesn't make it feel any better. I have ulcerative colitis among other inflammatory issues that force me to take steroids in some form or other, argh... If anyone ever wants to vent or chat, I'm here.
Votes: +1
TR
tracyd
4 May 2013
nice to read everyones comments about these terrible predisone effects i have been in hospital for going on 9 days nows with severe asthma have been on very high doses of iv steroids predisone can be a wonderful drug but its also a terrible one if you know what i mean the predisone is given me so many bad side effects right now i have taken them for pretty much all my life for my asthma not daily but off and on but anyway as of right now my dr is trying to taper me off due to all the negative side effects I'm having very very bloated belly that hurts like crazy and can't move terrible weight gain in face its now 3;20 am and woke up with severe pain in my legs and knees woke up in tears past 2 days from the pain i was hoping i wasn't the only person sounding crazy going threw this i wasn't sure if it was from the steroids or what it is i have been on the iv predisone for awhile now in hospital and oral while at home before coming into hospital if anyone can give ...
me some advice suggestions on how to deal with this extreme pain in knees and legs please do so as i sit up this morning at 3 am crying in unbearable pain the nurse just gave me pain med but doesn't seem to be helping ohh lets not forget the unbearable bloating and pain in my abdominal area thanks everyone for listening and look forward to some suggestions or advice
JP
J Pop
4 Sep 2016
I am a liver transplant recipient, one year 11 months. I have been on prednisone for almost two years. Since I started my taper about 8 months ago the pain in my sacral joints and hip joints has become unbearable. My liver doctor said in was from the taper. My GP referred me to physical therapy which did not help. The last doctor wanted to inject cortisone into the sacral area which I refused because of side effects. Alieve helps but my PA at UCSF said that I can only take it three times a month because it causes kidney damage. My kidneys had almost shut down prior to my transplant. I tried a TENS machine for my hips which gave me some temporary relief. I have also tried Aspercream & patches which don't seem to be helping. I exercise daily and watch what I eat. Any suggestions? Thank you.
NE
nesta
29 Dec 2010
YES, YES, YES... I have experienced the exact problem. I was on 80mg of prednisone for 2 weeks and while tapering down had the leg cramps you talked about. It usually goes away after an hour or so, but it is horrible pain. I noticed it the day or two after I decreased my dose. This last time I ended up in the ER because the pain got so bad and lasted for over 10 hours. They did blood work and part of the problem was dehydration. I got IV pain meds. and even with that it just took the edge off the pain. The next couple of days after that my knees and ankle joints were so sore I could hardly walk. You should also increase your potassium because prednisone depletes your body and low potassium can cause leg cramps. Water, Water, Water... I thought I was drinking enough (6-8 20oz bottles) but was obviously not enough. Hang in there and plan ahead for when you will be decreasing your dose. extra water and potassium.
Votes: +2
PI
pink_ninja
29 Dec 2010
Thanks so much for the advice. I was wondering if it was related to lowering my dose but I couldn't find much information on this particular problem. I've gotten to a much lower dose now - 14 mg/day. I'm supposed to taper down 1 mg every three days now, but so far I haven't been able to go that fast because I'm experiencing stomach problems every time I go down. Ugh - getting off these steroids is a nightmare!
Thanks again though - it helps to hear from someone who understands what I'm going through.
-brook
LB
lbaker8888
17 Jan 2011
Hi Pink Ninja I know it's been several months since you first posted and by now I hope you were able to lower your pred. level or maybe be free of it by now. :) I was on prednisone for 3 and 1/2 yrs. continuously. It took me 13 months to taper off of 60 mgs. The joint and muscle pain was bad. My pain was mostly shoulders and hips. I've been off it for 6 months now and the pain has continued unfortunately. The docs can't find any evidence of joint or muscle disease but my GI doc feels like it could be a permanent effect of the long term use of prednisone. I wish you success with your taper. Linda
PI
pink_ninja
19 Jan 2011
hi linda!
thanks so much for your note. i have gotten down to 10mg/day, and i'm hoping to be done tapering within a month's time. i'm still having joint pain, but it's gotten much better. i'm taking so many supplements, and the Glucosamine seems to be helping (along with eating more bananas). i hope as more time passes for you that you also feel better.
-brook
BR
Brteyes2u
26 Oct 2017
Linda I feel your pain. I was on predisone for 6 years. Tapering off was sickening. I've been off it now for 5 months. The burning and pain has continued. My physician at UAB in Alabama says I will be on pain management for life. I fight everyday and oneday there will be a cure.
Hi there pink ninja, I'm so sorry to hear about this pain. It can be so stressful. What medication are you trying to taper down on?
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PI
pink_ninja
9 Nov 2010
Sorry I left that out - it's prednisone. I was on it at 40-60 mgs for about 2 months, and then I was tapered way too quickly and got very sick and was hospitalized. They put me back up to 40 mg to stabilize me, and I've been tapering for the last two weeks at 5 mg a week (now I'm at 30 mg). Once I get to 20 mg, I'm supposed to go down 1 mg a week at a time. I'm dealing with a lot of nausea and anxiety, but I'm also having severe joint point, particularly while I'm sleeping. I'll wake up with what kind only be described as firey, throbbing pain in my knees and ankles. It's so bad that there's no way for me to lay down that's comfortable to get back to sleep (and I'm already low on that). I'm just wondering if anyone else has gone through this and if so, if there are tips to make it less bad? Or does this side effect ease up as I taper? Thanks for listening either way. =)
RS
RSDHurtzme
7 Nov 2010
It would help if we knew what you are tapering down off of to better answer your question. We do want to help
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pink_ninja
7 Nov 2010
Oh sorry! Its prednisone pills and also predforte eye drops (its for an eye condition). Thanks!
