So I have been taking predisolone for 4 weeks. And actually was feeling better untill i got down from 60mg to 15mg! Heres the thing. My body aches my fingers my hips my knees even my toes! Is this normal? Is it it the tablets or the desease lol i feel really stupid going to the doctor and saying hey my whole my body hurts but ither then that im completley fine. Maybe ishould up the dose on my tablets? Hmmm maybe i will ring my doctor x
That was ment to be 8 weeks!
Hi,
I'm not taking steroids but my body aches something fierce.... I'm trying to delay those meds until I really need them but I'm so uncomfortable so may need to start soon, good luck!
Abbie
Hi katld,
You really are being weaned off them way to fast. I'd say your body needs the steroids at a certain amount to keep the sarcoid at bay. It's probably in shock and I feel that they are prob not having a chance to work properly.
I have alot of experience, trust me I have been up and down on these steroids for 15 months now and have been told that weaning off large amounts can cause alot of joint pain, headaches, and general soreness in the body.
Where are you based?
I think you should speak to your doctor maybe get a second opinion, try a sarcoidosis specialist.
I am seeing a sarcoidosis specialist i think. They started me on 60mg and im weaning down every week by 5mg i dont know but i feel a little rough latley glad to know its the tablets though hopefully i can be off them soon! Thanks for your response. Do you have to have steroids??? Xx
I mean there are other drugs are there ons with less long term side effects x
Hi Katid. I'm a bit puzzled. If you were on 60mg 4 weeks ago and are reducing by 5mg a week, you should only have gone down to 40mg. If you've zapped down to 15mg, that is extremely fast, and you might be getting rebound/withdrawal symptoms. I do have steroids for flare-ups and find that they are a godsend, in spite of any side-effects!
Hey yea I am on steroids for the last 15 months that's why I think your being weaned off to quickly. They need at least 2-3 months to actually start working at the higher dose. The steroids have awful side effects but if your weaned of to quickly it can make you feel like crap. I did get down to 3 mg a day however then I got sick with bad pains and headaches so they upped them to 15mg a day I'm now down to 11 mg a day and I am weaning off 1 mg every 2 weeks till I get to 8 then have to stay on that for... Well not to sure yet. I don't know if there was anything else I could be taking as my doc told me if I don't start the steroids as a last resort I would be dead in 5 years. So better the steroids.
Your right lol i started them in august. So that would be nearly 12! Wow thats gone quick sorry it would help if i gave the right information sorry about that your right! X
Omg really that is scary! No i wrote it wrong its been 12 weeks i started end of august i think to be honest i cant remeber anything! Im so tired and achey! Cant believe how quick its gone. So ive heard about immonesuppresents or something like that. Wonder if anyone else takes anything different. I find excercise is too much atm
Im still working 27 hours a weekand take my daughter out daily (shes only 2 so has alot of energy to burn) but after all that im done!! When you come of the steroids do all the aches stop? Sorry for so many questions i dont really habe anyone to ask and my next apointment isnt untill the 10th of jan. X
I think I have spoke to you before I have a 15 month old daughter and it's exhausting at the best of times, plus I also work 20 hours a week don't think I could do anymore, I get so tired I also get high blood pressure along with everything else lol.
Tbh I wish I knew what will happen after the steroids, I just have no idea. Talk to me whenever you want I also have just you guys on here, I've not met anyone personally with this, I do think meeting people and talking is.good. I think there is a hse place that holds meetings with people with sarcoidosis I think I might check it out.
Are you in the uk?
Oh really where is that? Yeah we have chatted before do you mind me asking how old you are? Do you ever have issues concentrating as weird as it sounds i get so tired i seem to keeo forgetting stuff my other half actually says im like living with dory!!! Haha!!! And yeah its good. But then i really dont knw alot about the desease. I have googled alot but found myself scaring myself so i actually stopped it lol! Gonna be more prepared when i see my specialist next. X
Hello katld,
Your post has an unfortunate familiarity to it. Prednisolone is unpleasant getting on it and most unpleasant getting off it.
Whatever you do, don't come down off it too quickly. This is particularly easy to do at the lower levels.
Here is a discussion on withdrawal from prednisolone:
https://patient.info/forums/discuss/prednisolone-withdrawal-side-effects-549622
The aches and pains are because the prednisolone has masked all of the pain caused by points of inflamed tissue in your body. Now the prednisolone is ebbing away your body is not producing enough of it's own natural steroids to limit painful inflamation.
Unfortunately, it is one of many common side effects we all suffer coming off prednisolone.
It will eventually subside, promise.
All the best.
Hey thankyou. That was actually really useful problem is you have no one to ask haha! And i would feel really stupid going into my doctor and saying im fine just feel achey and tired haha! I was actually feeling better untill i got down to 20mg now ive got back to how i felt before so wondering if its no longer having a positive effect. Hope you are well thanks again x
Hello katld, I'm OK right now, thanks.
When you get to about 15mg and below, this is when you must be careful. At 15mg, the period could be two weeks, then the next drop will likely be at 12.5mg and two weeks on that. Then 10mg, 7.5mg, then it may be down to 6mg and so on. You could end up taking 1mg for a while then down to 0.5mg.
It all depends on how you are feeling and what risk is posed of a flare up if you come down to fast.
Remember, it is important to keep your GP informed if something doesn't look or feel right.
I know what you are going through and I sympathise. Prednisolone is not a nice drug and not to be treated lightly or messed with. It even has a diabolical taste and no effort is made to even mask it in any way.
Talk about a bitter pill to swallow, it has no peer.
You will get though this and come out the other side. It may take several months to recover from cortisol deficiency coming off such a high dose. Tiredness and fatigue will be around for a while.
Oh im dropping 5mg a week. But its my first time on them. Ive been fine untill like you said 15mg! My fingers are pure aching! And i feel a little tired but other than that im doing ok. But all the symptoms i had seemed to of gone and now i have them back not sure if thats normal or not. But nevermind. I actually havent seen my gp in months and months x
Katld, you must see your GP, ASAP. For your own sake, please do that before you drop down to the next level.
I can't believe your GP would allow you to do the withdrawal unsupervised and unmonitored. Your GP contact must be more frequent.
From now on, the tapering off will be more gradual.
The risk of a flare up is higher at the lower levels. If a flare up happens, you will probably end up having to start all over again at 60mg and spend months coming of it.
Take it from me, you do not want that. I had just finished a long course of prednisolone in 2014 from 50mg. I hadn't even recovered from that and the sarcoid flared again. I had to start again in 2015 from 50mg, stopping in the November of that year. I have only recovered from both courses just a few weeks ago.
I have called for an apointment. Im not really sure im just following orders from my specialist she literally told to take them drop down one tablet every week. Then come back in january x
If they are 5mg tablets you are taking, that is an awfully fast rate you will be coming down, from 15mg. You will suffer from now on dropping 5mg every week.
Please get a second opinion, preferably from someone who knows more about prednisolone and tapering off.
That flare up I mentioned earlier, it happened even though I took all the precautions of tapering down slowly under a strict regime.
When I was told I had to go on a second course of prednisolone and start all over again, I was appalled at the thought of going through that.
Taking prednisolone has always been a struggle for me even at low starting levels. It doesn't get any easier.
Ok well im going to take your advice and get in to my gp tomorrow im not sure she would know much about the predisolone but i can always ask shes a very good gp i havent been to her though as i thought this was all normal and just part of the package. I will defo ask about how i should take the medication i think i am possibly having another flare up. But idont know what is me and whats the tablets lol but im getting the same pressure feeling ihad. It stopped untillbi got down to 15mg now i feel pants again. I was actually feeling better ieven had more energy. But apparently predisolone are ment to give you fatigue but untill the 15mg dose iwas feel much better thanks for your help and advice though