I'm currently reducing my prednisolone - 1mg every ywo weeks - in preparation for my reassessment for etanercept. I was on10mg and I'm currently in my second week at 8mg. I'm still on 20mg leflunomide a week, and am in the first month taking alendronic acid.
I'll be honest, I'm in a bit of a state. I feel utterly exhausted, I have no appetite, I am in constant, increasing pain - especially in the balls of my feet - I keep having the most awful night sweats (not like menopause ones) and I just want to go to bed and sleep during the day. I also feel very tearful because of all of this. My reassessment is 11th April, by which time I'll be taking 7mg of pred.
Have any of you had to go through this, and if so how did you cope? Do you think it's down to the steroid taper or could the alendronic acid be contributing to it as well?
I have just started work, part-time, and do a late evening shift. The work is challenging and you have to be on the ball. I feel so wrecked I've made a few mistakes. I'm on a probationary period for three months so can't afford to make mistakes at all really, nor can I take even a days sick leave unless it was major.
Sorry for the moan xxx
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mamma1027
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That's why this forum is so great, great team on here who are invaluable. I am also on PRED - for a month, reducing slowly each week started on 20 mg reducing down to 1 in week 4. I refused to take the PRED at first but the inflammation in my feet was off the chart 😬. Now I am able to at least walk a bit better.
Nights sweats ✔️ Burning sensation in tummy ✔️ Dry eyes ✔️ Are just some of my side effects - but at least I can walk 😊.
As for the moods B12 is awesome - could not do without it! Along with my others vits.
The only thing I would say is that it is essential you speak to your employer. They should assess the situation. You need to avoid stress with this condition as best you can.
Thank you so much for your reply. Today I took the Boots version of Berocca and I have to admit I have felt a little better. I know that it's all trial and error with medication and I'm hoping that my das28 score will be high enough to go on the etanercept. I'll be very glad to eventually get off of the pred - it's caused osteopenia in my lower back....hardly surprising really as I've been taking them for nearly three years at a relatively high dose. Thanks again Hessie5 and I will stay strong and focused xx
Sounds like the taper could be too fast for you. Everyone has there own levels at which they can taper. It's better to do it slowly and successfully than steam ahead and cause more damage. Trust me I have been tapering for almost two years. Initially I was tapering by 2.5mg a week and landed up in hospital repeatedly. I am actually a lulus patient but often check the NRAS site as we share some of the same meds.
When I'm tapering too fast I lose appetite, become incredibly fatigued, I weep uncontrollably (this is so far from the norm for me), I feel agitated and angry or deeply depressed. My joints feel like someone has smashed them with a hammer and my pericarditis returns. I am now tapering by 0.5mg every 14 days. So far it's just about manageable but I know it gets harder as the dose gets lower. Good luck x
Thank you happytulip. I'm certain that I am tapering too fast. I have until now never managed to get below 10mg without a flare. If it wasn't for the etanercept assessment (sulfasalazine, methotrexate, hydroxychloroquine and leflunomide have had very little impact on the ra) there's no way I would be tapering at this rate. Roll on 11th April when I see my rheumy nurse. If I don't qualify for the etanercept I think I'll cry, because this has been just awful.
Judging from the symptoms you have had from tapering I can now say with some certainty that what I am experiencing is down to this too.
Hello I am hopefully on the way to titrating down on my prednisone as welll. I have had JRA juvenile rheumatoid arthritis since age 10. So I have had this disease for 36 years. I have been on prednisone only for 7 years since my pregnancy with my little son . The pregnancy was a struggle for my body and the doctors placed me on steroids . Problem is it is so difficult to get off.
What I have done:
To begin with I was on 12 mg / day .
On my own I managed to get Down to 8 mg /day where I am now.
Recently I have taken what I personally consider to be drastic action , by doctors orders of course,of upping my enbrel to 2x weekly injections and doctor has started me on 10 Methotrexate. It has only been 1 month and I have not yet begun the prednisone ween My wonderful rheumatologist says it becomes problematic once one gets down to 5mg as that is what the body produces on its own and now it is once again being asked to produce steroid instead of having it provided in pill form.
You have my sympathy l to am tapering down l started on 10 mg every day but l wanted to get off it all together after going down by 1 mg per week l got down to 4 mg and wanted to throw myself from my roof after a visit to my rummy he said to get down to 5mg l did manage this but the pain returned like there was no tomorrow so l now do 5mg one day and 6mg the next l know some people have been on 5mg for twenty years after reading reports here so l will stay on this amount if it keeps the pain away good luck in the future
I probably haven't read your other posts but am confused why you have to reduce the prednisolone if you obviously need it.I See you are being re assessed for etanercept.Why can't you be on both
Oh bless you.this health system is crazy.I know the specialist nurse press my joints etc and you had to be in pain on all.thing is with RA one joint can be ok one day and not another. I hope they can help you.I tried 3 biologics without success.I wish you well
The prednisone stopped my adrenal glands from producing cortisol and since tapering off my last dose of prednisone, I was hospitalised asi could not walk or use my hands,still in agony waiting to see my Rheumy again shortly
At a fair guess I'd say your taper is too fast for you to cope with. Do please make an appointment your GP, he/she will be able to give you a safe taper plan. Higher doses or longer term steroids are more difficult to reduce, particularly when you get to 10mg, this is usually when symptoms similar to yours happen.
By the way I take it mean you're on 20mg LEF daily not weekly? Unless this is a plan from your Rheumy to reduce it enough to reach the 5.1 DAS score?
I sincerely hope you do get to 5.1, though I think it's archaic the pain we need to go through to achieve it. Everything's crossed that can be for you. x
Oh hun you are going through alot at this moment. Prednisone can make some people more emotional than normal. I found I was getting angry and I remember crying and screaming at my husband over the stupidest things like,
"You don't love me anymore. You should know I don't like butter on my toat!!! How could you be so thoughtless... Whaa .."
Please get intouch with your GP, don't suffer in silence.
Leflunomide could be responsible for your lack of appetite, so if you are not eating, but taking medication it is quite likely you will feel bad...it's a vicious circle - take the pills- don't eat- take the pills feel worse......
I lost 12kgs in a few months on Leflunomide & as I was not getting any relief from the RA so my Rheumy took me off it.
Do speak to your rheumy nurse....hopefully she will contact your Rheumy & change your meds.
Things will settle down.....but when you are feeling so bad you think it will never end....but it really will.
When you finally get off the Prednisolone do try to never go back on it again......I now refuse to take it as I have never felt so peculiar as when I took just a low dose....& it did nothing to relieve the pain.
Thank you so much for your advice. I am desperate to stop the prednisolone, but this taper is doing me in. I've been on the leflunomide for 9 months now - it could be that the drop of mgs for the steroidd means that the lack of appetite from the leflunomide is now kicking in. I can't wait to see my rheumy nurse on 11th April. I hope that my treatment will be changed as nothing seems to have helped so far in the long term.
There may be something that could be done.....even another drug added to counter the horrible symptoms you have. Our Rheumy nurses really are highly trained & come up with some surprising solutions that surprise even the Consultant
I can remember how rubbish I felt this time last year...RA playing up & I got Shingles, but here I am 12 months later....I have been pain free for nearly 6 months (first diagnosed 18 years ago) & finally it looks like I might have found my magic pill.
But then I was on Mtx for 7 blissful years & that all went pear shaped........Grrrr!!!
I wasn't on Pred for long enough to need to taper down...I was lucky enough to be able to stop taking it every other day, then every second day...as I remember I then quit as I heard singing voices & felt really anxious....I thought I was completely losing it.
Do try to speak to your nurse, or maybe your GP...but don't give up....there is something that will help somewhere- you just have to be patient ( I know not easy) until you find it.
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help with the side-effects of methotrexate please
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