Prednisone/Prednisolone.......ugh!

[ClockworkOrange]

I hate the stuff!

I was taking this at a relatively low dose of 10 mg per day for 10 months, then tapered off for 2 months, all seemed fine.

Then started the awful aches and pains, especially upper body. Arms so painful even to comb hair, laying in bed my arm was so tender.

6 weeks along the line the aches have gone BUT now I am left with fatigue if I do too much.

I have a Team of 27 ready for the London Bikeathon that I am trying to motivate, only 26 miles but at the moment I am unable to do any miles, am so down about it all. Like most of you guys on here, I love being on my bike, so you can imagine how I feel.

My GP is saying that the steroids where hiding the asthma and that is why I am so fatigued, so guess what, yes, she suggested I go back on them, NO WAY, not unless I am at deaths door.

One word sums it all up sh*t!

Anybody else been in this situation and if so, how did you overcome it all?

Clock .................... too tired to get wound up!

[Lemongrass]

Clockwork Orange, may I ask if you were on the prednisolone just for asthma, or was it for an arthritis condition as well?

I can only speak from my experience of course, so none of this may be relevant to you!

I have inflammatory polyarthropy (a fancy way for saying I have inflamed joints but it's not rheumatoid arthritis). I've been on prednisolone for seven years now. Started on 7.5mg per day, then on 5mg for about four years. Whenever I flare I increase the dosage for a few weeks. I'm currently coming off taking 10mg a day for a week.

I keep trying to lower my dosage as the side effects of that much prednisolone for so long are vile. I've managed to get down to 1mg a day and then my joints decided to flare up again.

But as I also have asthma, the prednisolone completely masks it at 5mg. As soon as I start dropping the dosage, I have to go onto a preventer again (Seretide). But as I'm sure you know, preventers take some weeks to be fully effective.

How long is it before your ride? Maybe you could talk to your GP about taking a hit of prednisolone for a few weeks to get you past the ride, then taper off. Or if it's a while away, try a preventer.

I think being active is the important thing, and although I don't like taking 6 different tablets morning and night, if I didn't, I wouldn't be able to move.

Good luck!

Edit: BTW, I hope I didn't sound too unfeeling! It's just that I've learnt over the years to be a bit dismissive of pain as I don't like sympathy. Believe me, I do feel for you. I hate it when it's a choice between the unpalatable and the unpleasant!

[ClockworkOrange]

...................But as I also have asthma, the prednisolone completely masks it at 5mg. As soon as I start dropping the dosage, I have to go onto a preventer again (Seretide). But as I'm sure you know, preventers take some weeks to be fully effective.

Hi Lemongrass and thank you for taking so much time to write such a lengthy reply.

The reason I started on steroids was they discovered I had Aspergillosis (the following gives a brief explanation).

Aspergillus is a fungus which occurs everywhere throughout the world, that feeds on dead animal or plant material, and in this role it is vitally important to the environment to recyle all kinds of biological materials. It is spread via microscopically small spores that are extremely light and float easily in the air. Normally when aspergillus spores are inhaled by people, their immune system recognises the spores as foreign and they are destroyed.

I have been doing really well, Sporanox keeps everything at bay BUT precisely what you wrote, "But as I also have asthma, the prednisolone completely masks it at 5mg".

I have been given what I think can be described as a preventer Clenil 250, I have never seen this one before but unfortunately, it does not seem to be helping much. I also have Ventolin that makes little difference, apart from making me light headed sometimes.

My worst problem is SOB, after walking up slopes or stairs then the fatigue sets in and it totally wipes me out until I just lie down. I rarely cough with the asthma?

I so agree about being active but that is my downfall, I cannot just take things easy, I have to be doing something around the house.

Click on under my signature, it has the date of our ride. I am just getting very frustrated, encouraging everybody else but I cannot get on my bike yet! So far we have raised US $1200 but have a long way to reach my dream of US $15161.

As much as anything, by posting here it just gave me a chance to get off my chest.......no pun intended!

Many thanks again for your reply, it was appreciated.

Clock

[runningteach]

I am sorry you are feeling fatigued. I have been on prednisone for about 5 years due to lupus. It helps with fatigue. It is a nasty drug but sometimes in order to function it is needed. My doc explained that inflammation can cause fatigue and prednisone helps with that. The most important thing is if it helps you. If it does then you should go back on it for a little while.

I know that pacing yourself is very important and I know how hard that can be. Maybe you need to plan out your days better. It does suck, but that is what I have had to do. You also have to realize that life is different right now, so don't be so hard on yourself. With time you should be back to your old self.

[NbyNW]

(((Clockwork)))

So sorry for your frustration . . . sometimes our bodies just need more time to heal beyond what doctors and meds can do. Asthma can be tricky to manage, too. I hope you can find something that is effective for you.

Maybe try out some other kind of activity for a little while, to take your mind off the things that your body is rejecting? It's up to you, perhaps you can grow in a different "direction" for a little while.

[ClockworkOrange]

..................I know that pacing yourself is very important and I know how hard that can be. Maybe you need to plan out your days better. It does suck, but that is what I have had to do. You also have to realize that life is different right now, so don't be so hard on yourself. With time you should be back to your old self.

(((Clockwork))).................. sometimes our bodies just need more time to heal beyond what doctors and meds can do. Asthma can be tricky to manage, too. I hope you can find something that is effective for you.

Maybe try out some other kind of activity for a little while, to take your mind off the things that your body is rejecting? It's up to you, perhaps you can grow in a different "direction" for a little while.

You see it just makes things a little easier when others understand and what you have written is good advice. So, have decided not to just forget about riding for a while BUT to try and pace myself far more.

Yesterday, only 2 miles and today it was 3 miles. Then I am making sure when I get back home, I don't run up the slopes and steps to the front door but walk quite slowly. BUT IT'S HARD, although it is helping.

For the time being, I am going to be more self-disciplined with it all.

I go back to see my GP next Wednesday and I do not want to go back on the steroids.

Again, many thanks for your good comments and Lemongrass thank you for your lovely PM.

Clock............ticking now but slowly

[lo123]

Sorry to hear you're having a hard time. Not much to add except to echo that prednisone sucks.


Not to pry, but 2 months seems really fast to taper off of 10 mg after 10 months of usage. It took me a year to drop from 10 to 5 mg. If you taper too quickly, your body can freak out.

[ClockworkOrange]

Sorry to hear you're having a hard time. Not much to add except to echo that prednisone sucks.


Not to pry, but 2 months seems really fast to taper off of 10 mg after 10 months of usage. It took me a year to drop from 10 to 5 mg. If you taper too quickly, your body can freak out.

Thanks for that.

YESSSSS, have eventually got there after almost 1 year.

Now off Pred, Sporanox, BP meds and all inhalers.

I weaned myself off and told the doctor after, to my surprise she is pleased how well I did.......shock, horror!

Then I go and aggravate my SI JOINT, so my pelvis is all out and I still cannot ride my bl**dy bike............as RunningMommy would say to me "oivay"!

So, just about to dash off to physio.

The latter is not a problem but to be off all medication is fantastic.

Cheers guys for all the encouragement.


Clock

[OakLeaf]

That's wonderful Clock! (About the meds... not about your hip...)

Have you been following the SI joint threads? Knott has posted some wonderful contributions.

[ClockworkOrange]

One final comment on this thread, despite I grumbled and was pleased when I finally came off the Prednisolone (Prednisone), it definitely did what it was meant to.

I suddenly realised, anybody who is either on this drug or is about to start taking it, reading my comments would be a bit concerned.

Thinking back almost a year ago when I was not well, I was only too pleased to take it.

Oakleaf

Have you been following the SI joint threads? Knott has posted some wonderful contributions.


No, I am just about to have a look, cheers.

Clock

[PamNY]

Great that you are off meds. Good luck with everything! I'm hoping for all problems to be solved (or magically disappear -- wouldn't that be nice?).