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
wendy62425 jill18540
Posted
Hello Jill and everyone
I have suffered from Chronic Urticaria several times in my life. Lasting 2 years each time then going away. I was able to keep the hives away with Allegra and other antihistamines.....this time nothing worked accept the Prednisone and Cyclosporine both not the best to be on but the alternative is much worse!! I found a wonderful doctor at Johns Hopkins in Maryland in the US. Once she got the hives under control with the meds I stayed on that level for awhile then she VERY SLOWLY dropped me down. It has taken me over a year dropping the prednisone down by 1 mg each time keeping me on that dose for awhile each time......I have gone through hundreds of 1 mg. I am now down to 3 mg and have been for a couple of months. I have appointment to see her next week to discuss going down again to 2 mg. I have had some stress in my life so she did not want me to go down sooner because of that. Going down so gradual is KEY with prednisone!! Ever so slowly! Yes Prednisone is both good and bad!! For me it has been a blessing for me to have a normal life back! I pray it continues after I go completely off....hopefully I can. Because I have gone down extremely slow I have not had withdrawal issues...or side affects. I did notice my hair became dryer lately ...some hair loss (may not be due to prednisone. I have Osteopenia with my bones not sure if it's meds or age as I am 65.
this blog is wonderful to be able to share with everyone! Let's all keep in touch.
Have a nice day
Wendy
cjb106 wendy62425
Posted
At 61, I too have noticed thinning and VERY dry hair - so dry it stands up on it's own! - since taking Prednisolone. Normal hair conditioner has little effect but coconut oil does put some life back into it although I guess you need to be more careful than most what you put on your skin.
This thread has been a revealtion to me about steroid withdrawal and I am very grateful that people take the time to share their experiences.
wendy62425 cjb106
Posted
Are you still on prednisone? If so what strength. I started losing some hair after going down on the prednisone....low dose. I noticed hair on sweaters and more than usual on my comb.....hopefully I will stop shedding soon!.....you too!
wendy
cjb106 wendy62425
Posted
I am steroid free at the moment (for last month or so) but have had to have three rounds of them for UC over the last year. 30mg for a couple of weeks then tapering by 5mg per week which, as I now find through reading the posts here, has lead to fatigue and joint pain. I'm not noticeably shedding, only that my hair is now very thin like someone 20 years older. It may just be coincidence and I'm just unlucky. Wondering if it could be to do with dehydration. I had to be put on a drip a couple of times during flares and I'm thinking that the effects of ill health (and drugs) may manifest in the hair months later.
ihavenonickname wendy62425
Posted
wendy62425 ihavenonickname
Posted
It has been a year but needed to repost concern. I am going down very slowly again on Prednisone 3 mg for weeks. I am losing a lot of hair again...not sure if it because of less Prednisone or anxiety/stress. You were encouraging in your post when you added.......it grows back! I hope mine does as well. Any advise to help slow it down from falling out?
thank you
Wendy
Lambophil wendy62425
Posted
Use regain for thinning hair. I have been on oral steroids for over 21 years now and was loosing hair after 2 years, been on it for over 15 years years now and my hair is thicker that ever. It's a bit grey now but I guess that because I'm 49.
ihavenonickname jill18540
Posted
I am of the opinion that an endocrinologist should supervise steroid withdrawal...the symptoms we express correlate directly with symptoms of Addison's Disease which is an adrenal gland hormone insufficiency.
I am quoting from Mayo Clinic, a highly esteemed institution in the USA:
quote
Extreme fatigue
Weight loss and decreased appetite
Darkening of your skin (hyperpigmentation)
Low blood pressure, even fainting
Salt craving
Low blood sugar (hypoglycemia)
Nausea, diarrhea or vomiting
Abdominal pain
Muscle or joint pains
Irritability
Depression
Body hair loss or sexual dysfunction in women
unquote
The further progression of Addison's leads to:
quote
Pain in your lower back, abdomen or legs
Severe vomiting and diarrhea, leading to dehydration
Low blood pressure
Loss of consciousness
High potassium (hyperkalemia) and low sodium (hyponatremia)
unquote
Mayo clinic advises we need to consult our physician when:
quote
Darkening areas of skin (hyperpigmentation)
Severe fatigue
Unintentional weight loss
Gastrointestinal problems, such as nausea, vomiting and abdominal pain
Lightheadedness or fainting
Salt cravings
Muscle or joint pains
unquote
Sounds like they were listing the symptoms of steroid withdrawal, doesn't it...
I have a pill spiltter that opens up on a hinge to expose a V shaped tray with a catch basin. You set the pill within the V, tilt the splitter so that it snuggles the pill forward deep with the V and close the lid. The sharp razor within the lid easily slices even tiny presnisone in half.
zss ihavenonickname
Posted
Yes, you are correct, the symptoms do look the same as Addison's because of the natural cortisol levels in your body are low due to the prednisolone. That accounts for the extreme fatigue etc. and will take months to recover.
EileenH ihavenonickname
Posted
I'm sure you are right - however, if endocrinologists had to supervise every patient on steroids who was reducing their dose the system would grind to a halt! In the UK or anywhere else in Europe it is extremely unlikely we would see anendocrinologist for that.
If you reduce pred slowly you won't get any of those symptoms - reducing pred dose in chronic illness is nothing like Addison's disease. Below about 10mg you get into the realms of possible adrenal insufficiency as the pred dose falls below the physiological level - but the main sign would generally be increasing fatigue at a fairly early stage. THEN you need to discuss it with your doctor and slow down. The local Head of Medicine where I live is of the opinion that if you reduce slowly enough almost everyone will regain normal adrenal function. A few won't - but it is only then that they need to be referred to an endocrinologist.
ihavenonickname zss
Posted
ihavenonickname EileenH
Posted
EileenH ihavenonickname
Posted
Exactly! This forum is UK-based - the majority of the people posting are working in a very different system. It would be so helpful if our names came up with at least a national location. But they don't...
ihavenonickname EileenH
Posted
I like that idea...I am learning to identify...the use of "sticks" is a pretty good hint.....put it in the "boot" but it is not a foot..."whilst"..."rheumy"..."gp"..."nhs"..."pip"...need a referral, all pretty much tell me UK
chuckle chuckle
zss ihavenonickname
Posted
Like the UK, there is no endochrinological supervision of prednisolone use in Australia, regarding sarcoidosis. We are told the symptoms we're likely to get and my own doctor supervises the dosage.
ihavenonickname zss
Posted
Trexall Imuran , Enbrel, and Humira are used in the USA to treat sarcoidosis.
Steroids have been the first line drug for many years. By about the eighties, we understood the severe adverse side effects of long term steroid use.