I was just looking for a bit of feedback.ive been on mtx for 3 months now and stopped prednisolone on Sunday after tapering down to 2.5mg from 40mg daily. I feel a bit strange...wobbly like drunk almost...and more stiffness in the morning than usual, pain is creeping back into all joints and more tired.
I'm assuming mtx should be working by now but am worried that it was the steroids that were keeping the pain and stiffness under control and so without them will I be worse off? I have a rheumy appointment next week...are they likely to add in another treatment with mtx now that I'm off steroids do you think? Are these effects due to withdrawal and will settle maybe? I'm scared I'm about to have a flare up again.
Thanks .
Sharon 🌸
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Shazz10
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Oh very slowly...last six Weeks were 7.5 for 2 weeks then 5 for 2 weeks then 2.5 for two weeks. Prior to mtx I couldn't get below 15mg without pain returning so have reduced from 15 to nil in 3 months as recommended by rheumy so I presume I that's an a ok schedule.? I didn't notice difference until last few days of not taking any....am soooooo glad to be off steroids but on the other hand scared cos I know they worked...so a bit anxious really.
Oh I misread and thought you'd come down really quickly. It can be hard coming of prednisolone, so don't be too hard on yourself. It sounds like your rheum knows what s/he's doing but it doesn't make it any easier when it's your body.
I understand the anxiety, can you can get a GP appt to discuss or speak to rheum nurse?
I too feel terrible from scaling back on Prednisone. I was on 20mg per day and pain was minimal, now down to 10mg per day, 6 weeks on MTX and feeling pain all over, similar to when I was diagnosed in March, 2017. Are you taking any other meds? I am taking Tylenol 500mg and also 7.5mg Meloxicam twice a day, still not feeling good. Do call your doctor. You did not say how quickly you scaled back on steroid but that is a difficult thing to do. Hope you feel better soon! Take care, Penny
Thanks Penny. Yea the feeling is very similar to when I first got sick in Feb this year...think that's why I'm anxious as I couldn't bear to go through that again! Pain is not that bad but more noticeable since I stopped pred. Ugh...I'll try to think positively and hang on til my appointment next week. Im only on mtx 20mg injections and Co-codamol as needed.
Sorry to hear you are feeling bad too with pain...I was 7 or 8 weeks in to mtx before I could manage to reduce to 10mg of pred. The main sort of hovered on the horizon for a week or two then but managed ok tapering down to 2.5 then.
Thank you Sharon! I am also seeing Dr. next Wednesday. I called and she told me to go back to 15mg until I see her. Hate going up after reducing but don't like feeling terrible either... Hugs and good wishes to you! ; )
Unfortunately, I can say that the steroids do do a marvellous job at keeping pain inflammation and stiffness down, they give you more energy and vitality. And when I go on a course I'm back to normal just about. When I come off them I'm straight back to severe pain and stiffness, and it can be worse to start off with when you come off steroids. I maintain my Humira when on steroids so can't comment on how long it will take from your mtx to start working. Steroids are absolutely wonderful drug, just they have terrible side effects and long term use is a risk.
Getting off pred is a challenge. In my case I find that although with MTX I am much improved, below about 10mg things go wrong again and back up I go. Just like you this is much improved from the very high doses at the beginning but obviously still not ideal. My rheumatologist has now added hydroxy so we will see if that enables further reduction. Possibly you too will need additional meds to stay off the pred successfully. Good luck!
Have fun with stopping the steroids. Just kidding, it is no laughing matter. The MTX may not be working for you. I found that all the DMARDS did not work for me. And getting off the prednisone was a brutal bitch. The first time getting off of it I was up at 50mg per day and tapered a little too quickly. Ended up stopping after a week of 5mg per day. I told everyone what i was doing as a warning that I would probably be very irritable and irrational. And boy was I. My wife and child did not even want to be around me, let alone the people I work with.
The pain and stiffness did return in fairly short order once off the horrible drug, but i managed to stay off for more than a year. I was put back on it and this time only 10mg. Still took a long time to taper off. I was even taking 1 mg per day and then breaking them in half. Coming off the second time was easier. I did not rush it like the first time.
Now I am on Actemra (Tocilizumab) . It is an Interleukin 6 antagonist prohibitor. I was told by a hematologist that since my crp was very elevated that my il6 would be as well. And once i started it dropped my crp from 159 down to 1.8. Then the next month down to less than 0.2 or undetectable. All fine and dandy except that whatever condition I have has disolved all the cartilage in my right knee in less than a year since my arthroscopic meniscus surgery.
Sorry to ramble on, just needed to vent I guess.
Flare ups are all part of the disease process. They allow your doctors the ability to try other things or drugs to help you. If one drug (mtx) does not work with out the steroid, then it is not working at all. The steroids are doing all the work. Best try the gambit of DMARDS to see if any work and if not, then you can try biologics. They are expensive and not without risk. So do your research and go to your appointments with some understanding of your condition and talk with the doctors as an informed patient. This will help you in the long run, and make you smarter as well.
Sometimes i get the feeling that I know more about myself medically than my specialists do. And I ask pointed questions which they really like to answer. And I have been thanked by the specialsts as I am making their job easier.
Thank you for this information Paula. Sad that our doctors are not advising properly. I have already paid for a lot of 5mg pills and wonder why my doctor wouldn't have thought ahead, if she wanted me to scale back, to prescribe 1mg pills. So frustrating! Thanks again, Penny
Prob shdn't say this - but hang on to your leftover preds! After 13 YEARS on them , reducing down v gradually from 40 - 5mg i was reluctant to come off but they were insistent despite no osteoporosis or osteopenia signs at all, and kidneys etc fine. When MTX w/drawn it was v difficult though SSZ after 6 months helped and i've dropped it to half dose. But it was eventually agreed that i cd have a small supply of pred as emergency fallback first aid, since i travel v. often. so far unused touch wood but the knowledge that it's there is a comfort. Good luck x
SSZ = sulfasalzine [quite oldfashioned 50s onward a mix of aspirin or similar with ? antibiotic / sulfur i believe. MTX = methotrexate; i asked NRAS and there is/was a list on this site of common acronyms. Good luck with your quest for painfree existence Penny.! Take care, too x
Hi going off prednisolone can cause that. My rheumy put me on Plaquenil so I don't need the Pred any more .. better not to take steroids if you can. The Plaquenil works very well
Thanks everyone for all your replies. I am nearly a week without steroids now. Stiffness and pain has increased a little but nowhere near what I was fearing. Looks like mtx is working ! My appointment and bloods next week will tell more I suppose. Hope you all have a lovely Sunday
Hi Sharon. I was told to come off the Preds extremely slowly - for instance, 1mg at a time, and a month on each dose. Then when I begin to go down 1mg, I alternate days for a week, i.e. if I am on 8mg , go to 7, mg, then 8mg then 7 etc until I feel quite level on the 7, then after a month I go 7,6,7,6 etc for a week. So far I have managed to get down to a 656565 regime and I am starting to feel good again. Will be trying 5mg for a month over Christmas and hoping I can get lower in Jan etc. . Hope that helps. You might need to speak to your Dr on a Phone Consult and ask for advice. If you have the tablets you can always up them a bit again until you feel normal, then slowly come off again - I was told it takes 3 or 4 months for MTX to kick in fully for some people. All the best.
Oh - didnt see your last reply until I posted - sorry. So glad you are managing - sounds pretty good Sharon. All the best and have a Merry Christmas - alcohol Free of course!
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