Prednisolone withdrawal side effects
Posted , 45 users are following.
Hi, I'm a new member and wonder if anyone can give me some info about the side effects of withdrawing prednsiolone at the lower doses. I have a lung condition called crytogenic organising pneumonia and have been on Prednisolone for a year now gradually reducing from 40 mg this time last year to 3 mg now. The reduction had been quite rapid without too many side effects until I got to about 10 mg and then I started to get really bad muscle aches and also stiffness although it started out on the right side only, I also get neuropathic pain on that side because of a trapped nerve so sometimes its difficult to distinguish between the two. The plan is to try and reduce them and stop by the end of December. Reading the other posts, I realise that I've got away lightly compared to some people. What I really wanted to ask is if it's normal to have pain in different areas on different days, i.e., sometimes I've got pains in my knees, sometimes my upper legs, sometimes my lower legs and so on? Its started now to come on in my arms as well. Do you reckon this is due to the steroid reduction or something else? I've also heard that the withdrawal symptoms can continue for several months after stopping the steroids completely? Anyway, thanks for any ideas x
0 likes, 113 replies
Lambophil jill18540
Posted
I also tried to ween off so many times but failed. Low blood pressure and body aches. I also got the itching and the sneezing. After a lot of digging. These symptoms show when cortisol levels are too low. I have moved to hydro cortisone (hc) 20mg at 8am and 20mg at 2pm. So now during the night my body has little cortisol. After 2months I dropped to 10mg at 2pm. Under stressful times I sneeze. That seems to be the first noticeable indicator. I will top up with 10mg of hc. I am hoping to drop the afternoon dose in 2months. I doubt I will ever get off the steroids but I don't mind continuing to try different ways.
barney34567 Lambophil
Posted
As your goal is to drop steroids one day, may I suggest that instead of taking 10mg in one hit at 2pm, take it in 2x5mg say at 2pm and 4pm. After a while you'll see that 5mg is enough (hopefully) and that will help you en route to completely weaning off it. Good luck.
michelle24226 barney34567
Posted
thanks for the advise. i have been completely off of steroids since mid-August, but am still fighting these awful and painful withdrawal symptoms. I weaned off slowly over about 8 weeks, but I took it for so long that now .I know that I should have had a better rheumatologist and had it not been for the outstanding care that I have from my current pain management dr., I would still be taking it. some advise for others is to not take any prednisone for an extended time for arthritic pain until you have tried everything. I could be living with these symptoms for up to a year. Yippee!!!
EileenH michelle24226
Posted
On the other hand, pred for PMR gave me my life back and if that is what I need that is what I need. I've had PMR for 15+ years - about 5% have it for a very long time. Having had 5 years of PMR with no pred and no respite during that time - I'll accept pred and any downsides rather than return to that.
And a really slow taper, dropping as little as 1/2mg at a time after 10mg is far more likely to succeed than halving the dose overnight,
Lambophil barney34567
Posted
I am still taking the morning dose of 20mg. As well as the afternoon dose of 10mg. I just will drop the afternoon dose for now and see how it goes.
barney34567 michelle24226
Posted
Your point on pred is right. One must not take it for longer than is needed.
barney34567 Lambophil
Posted
You could also see if taking 10mg when waking up and another 10 mg at lunchtime (instead of 20mg in one go) may help you feel better during the day. It did for me.
Hecate barney34567
Posted
my husband has been on 5mgs per day for almost 40 years
mike2468 jill18540
Posted
hello there, I too took prednisone and it was recommended by my doctor alongside another medication to take at the same time called naproxen. Of course the mayo clinic suggested not to take those two at the same time--reading after the fact. Anyway, not sure if related exactly to you but yes I do have muscular weakness reactions to my left side I was taking 60 mg at first and I suddenly stopped cold (recommended by ER) after going to the ER because of losing 20 pounds and having horrible stomach/gut related issues. Obviously my story is sounding pretty horrible. In addition I developed somehow an eye condition called Pinguecula--which is incurable of course. ... I read that prednisone is not good for people who are nearsighted as an FYI... anyway without making this any more of a book then it is yes I do have muscular (and now I guess) front abdominal issues and I think it’s because of all the stupid medication my clueless doctor prescribed me originally for back stiffness...
EileenH mike2468
Posted
The main reason steroids should be used carefully in myopic (near or short-sighted) patients is that they are at an increased risk of the intraoccular pressure increasing, especially if the correction they need is more than 5 diopters. This is the same as what happens in glaucoma and can lead to loss of vision so it is important that patients on pred are monitored regularly. There are medical ways of managing raised intraoccular pressure and recently an operation has been developed which will obviate the requirement for eye drops - and is likely to to save the NHS a great deal of money as well as removing the need for eye drops to be used which is inconvenient for patients.
mike2468 EileenH
Posted
Hello and thank you for your reply,
In summary could that relate to Pinguecula you think? also any medical related background behind that science?
thank you in advance!
EileenH mike2468
Posted
Sorry - don't understand. That was medical background.
https://www.specsavers.ie/eye-health/pinguecula
All I have read about it suggests it mostly requires no treatment. So how would it be relevant? Though I don't quite see why you regard it as "incurable" - neither is aging in general curable.
Hecate jill18540
Posted
my husband has been on steroids for almost 40 years, 5mgs a day ....because of chest problems and other things ....now aged 75, a new doctor says she wants him off them, in spite of a consultant at the hospital who says he cannot come off them now ....she has already changed his prescription and wants them dropped by 1mg every four weeks till he is off them ......he has arthritis and spinal problems, plus diabetic (not fat, just skinny) and had a heart attack four years back where the specialist said he cannot come off them now he is steroid dependant ....yet a young GP can ignore this ....
EileenH Hecate
Posted
I trust you have spoken to another GP in the practice? Or submitted an official complaint?
She might WANT to ignore it but I would ask her if she is ready for a medical negligence case against her.
barney34567 Hecate
Posted
I would suggest seeing an endocrinologist to determine if the steroid can be changed and/or how best to alter the dose so as to wean off them for good (if possible).
Only an endocrinologist is best suited to advise on such matters. Not a GP or non endocrinological consultant.