Prednisolone rant

Amanda89 · Nov 27, 2013

So after ending up in hospital for the whole of last week with another Crohns flare up (2nd time in hospital in 5 weeks) it was decided that I would go back on an 8 week course of Prednisolone, and I am really struggling with it this time. I took a 6 week course 2 years ago and don't remember having this many side effects.

I am so tired constantly, and cannot sleep properly because I either can't fall asleep or wake up continuously during the night, the back of my neck and shoulders are really stiff as is my thighs and hands (but the hands could just be my Arthritis). I keep getting hot flushes, and the lovely moon face with an increasing appetite to help with that, and another very weird side effect i've been getting is that my tongue feels like it's burnt? and of course not to mention the actual crohns pains in my stomach as well anyway.

Can someone remind me if this gets better as the course goes on or do I just need to stop feeling sorry for myself? I'm trying so hard not to complain about it all, because I could be in a far worse situation, but I'm sure pretty much all of you can relate to a time where you do just want to hide in your bed all day every day and feel healthy and happy.

Johnnysmom · Nov 27, 2013

I am sorry you are struggling Amanda. I have not taken Prednisone but my son was on it for 3 months and it was hard on him. For him, it started getting better about two weeks after he started tapering.

One thing that he occasionally tried was taking Tylenol PM to help him sleep. Advil can aggravate crohn's so I would stay away from that. It also helped for him to get some good exercise during the day. It just helped tire him out.

It's just hard. But, the meds are healing your body. They made a big difference in my son's health. Try and hang in there and know we are here to support you.:ghug:

Amanda89 · Nov 27, 2013

Thank you for your message and support. Unfortunately Tylenol is unavailable in the UK,but i'll see if we have an equivilent to this over here. I won't lie, I'm not a huge exerciser as I normally drive, but I do take public transport to work twice a week which has me out the house for 12 hours so feel especially too exhausted those days to do exercise in the evenings, (yet not tired enough to sleep) but I think I'll try and get out a bit more with walking the dogs a couple of nights to see if that helps

fozheart · Dec 1, 2013

Hi Amanda89. I am sorry that you are stuck on another course of prednisone, but hopefully it will improve your flare. I have been on and off of it for over 20 years, in very big doses for months sometimes. Unfortunately, there are some things that you cannot avoid, like the lovely moon face. As far as actual weight gain though, if you do a little exercise every day, even if it just 20 minutes of walking, I promise that will help, hopefully preventing the extra pounds, but also the stiff and sometimes aching joints.

I don't know what time of day you take your prednisone- I take my whole dose in the morning, which helps a little with night time insomnia. My doctors have always been good about prescribing a low dose of something for me to sleep better, such as xanax.

About that burning sensation on your tongue, do you mean it actually feels like there is a burning pain? Sometimes prednisone causes thrush in the mouth (candida), which is a very weird sensation... Hopefully that is not your case, but I would mention it to the doctor maybe.

I am wishing you the best of luck- I know it is a frustrating drug, with so many ridiculous side effects, but if it can give you some relief, that is good! Sending positive thoughts your way!

Ben1 · Dec 2, 2013

Hi folks new to the forum suffered in silence since 2007 I'm on so many drugs at present that I don't know if I'm coming or going at the best of times.
I was in the army when I was diagnosed then discharged dye to the conditions I have many more bad days than good and as yet not really sat with another sufferer to talk about what it is I'm going through.
My wife is a star she really does look after me and at times runs herself into the ground in doing so. I'm just looking for relative conversation tips ideas etc on how to deal with ulcerative colitis, Crohn's disease perianal Crohn's plaque phsoriosis muscle ache bones cracking and painful chest pains legs going dead all the time obviously a circulatory issue underlying somewhere.
Help

Amanda89 · Dec 2, 2013

fozheart said:
Hi Amanda89. I am sorry that you are stuck on another course of prednisone, but hopefully it will improve your flare. I have been on and off of it for over 20 years, in very big doses for months sometimes. Unfortunately, there are some things that you cannot avoid, like the lovely moon face. As far as actual weight gain though, if you do a little exercise every day, even if it just 20 minutes of walking, I promise that will help, hopefully preventing the extra pounds, but also the stiff and sometimes aching joints.

I don't know what time of day you take your prednisone- I take my whole dose in the morning, which helps a little with night time insomnia. My doctors have always been good about prescribing a low dose of something for me to sleep better, such as xanax.

About that burning sensation on your tongue, do you mean it actually feels like there is a burning pain? Sometimes prednisone causes thrush in the mouth (candida), which is a very weird sensation... Hopefully that is not your case, but I would mention it to the doctor maybe.

I am wishing you the best of luck- I know it is a frustrating drug, with so many ridiculous side effects, but if it can give you some relief, that is good! Sending positive thoughts your way!

Hi Fozheart, thank you for your message. I take my steroids as soon as I wake up in the morning, and I have started trying to walk a bit more which has helped. I'm still finding I'm up most of the night and sleepy most of the day still which is frustrating, but I'm quite wary about taking something to help me sleep as I have quite a long drive on the motorway to work in the mornings. I've booked a doctors appointment for this week so will mention the tongue (and thought maybe I should mention the hot flushes I keep getting) and see what he says!

Amanda89 · Dec 2, 2013

Ben1 said:
Hi folks new to the forum suffered in silence since 2007 I'm on so many drugs at present that I don't know if I'm coming or going at the best of times.
I was in the army when I was diagnosed then discharged dye to the conditions I have many more bad days than good and as yet not really sat with another sufferer to talk about what it is I'm going through.
My wife is a star she really does look after me and at times runs herself into the ground in doing so. I'm just looking for relative conversation tips ideas etc on how to deal with ulcerative colitis, Crohn's disease perianal Crohn's plaque phsoriosis muscle ache bones cracking and painful chest pains legs going dead all the time obviously a circulatory issue underlying somewhere.
Help

Hi Ben! Welcome to the forum. I know what you mean about the drugs, they definitely build up without you realising. Have you been to see any specialists for the conditions like gaestronology/dermatology/rheumotology? I also suffer from plaque psoriasis which I've had since I was 4 so if you want any tips I can try and help you out? In regards to chest pains, could possibly be acid reflux from the Crohns? I find Rennies can be a big help with them. It's really good your wife is so supportive as well

Ben1 · Dec 2, 2013

I'm very lucky she's the best.

Ben1 · Dec 2, 2013

I'm hearing more and more about cannibis being used as an unofficial treatment but am reluctant to try it due to legality and other ramifications
I have to say though I've been told by my neighbour about a young lady that also suffers with Crohn's the only time that she is free from symptoms or pain and lives a sort of normal life is when she is pregnant ??? Is. It possible the the female body during pregnancy produces a hormone or something else that tackles th crohns??. Doctors

Amanda89 · Dec 3, 2013

Ben1 said:
I'm hearing more and more about cannibis being used as an unofficial treatment but am reluctant to try it due to legality and other ramifications
I have to say though I've been told by my neighbour about a young lady that also suffers with Crohn's the only time that she is free from symptoms or pain and lives a sort of normal life is when she is pregnant ??? Is. It possible the the female body during pregnancy produces a hormone or something else that tackles th crohns??. Doctors

I don't personally use anything to do with cannabis, I know some people who have said that it will help them, but I couldn't give you an opinion for it i'm afraid. In regards to pregnancy, that's probably true! I think it's something to do with all the extra hormones going through your body

kelly81 · Dec 5, 2013

Only thing that is helping me with the insomnia is my doctor prescribing Zopiclone (I'd be awake for 3 or 4 days at a time otherwise). I seem to have every prednisolone side effect in the book but the sleeping issues are definitely the worst. Hope it starts getting better :hug:

fozheart · Dec 6, 2013

I have always had to used a prescribed medicine to help me sleep while on prednisone. 20+ years ago, I would take ativan. (Prednisone back then was for Lupus flares.) Now I take a small dose (usually .5mg), of xanax, or restoril, which is the same as xanax, but in a slow release form.

Ben- I cannot speak for crohns, but as far as pregnancy with Lupus, mine went into remission when I was pregnant, which the doctors say is very common. So, maybe that holds true for other chronic illnesses.