Tapering off Prednisolone after 14 months

Lou1234

Hi, I was diagnosed with RA last May. Whilst waiting for a medication to help with the symptoms (Methotrexate, sulfasalazine, now Amgevita) I've also been taking Prednisolone 5mg daily. Amgetiva seems to be working so I've asked about tapering off the Prednisolone. I've been advised to go down by 1mg a month. Has anyone else tapered off this drug and how did you feel once you had stopped taking it?

Woofy

https://community.versusarthritis.org/discussion/60725/tapering-off-prednisolone-after-14-months

Hi Lou1234.

I am in the process of tapering off my steroids too. Waiting for Methotrexate to kick in.

can’t lie I’m nervous each time I lower the dose. I’m also now on 5mg ( this week) for a month, then reducing by 1 mg each month.

what is Amegevita? I Sulfasalazine did nothing for me.

stickywicket

I think many, if not most, of us who have been on pred hit something of a wall around 5mgs. A 1mg per month reduction sounds sensible but don't be afraid to ask for further advice if it becomes too difficult. Sometimes progress can be even slower but it can, and must, be done. And you will get there in the end.

Good luck, ladies!

@Woofy , amgevita is a biosimilar. Like all our DMARDS and biologics it works well for some but not others.

frogmorton

Best of luck.

I hope you do well coming off the steroid.

They are not good for us at all 14 months was a long time so won't be easy. Do feel free to come here and vent if you need to. ((()))

Toni x

Lou1234

Hi, thank you for replying to my post. What's the worse side effect from coming off steriods? Louise

Lou1234

Baloo

I would say 'its compicated'. I have inflammatory arthritis, which is not the same as RA, but probably similar things apply.

I came off steroids without any other meds. Since the initial reason for the steroid was my severe flare up, it was logical the first time I missed a 5mg dose to get a brief flare up, like stiffness, swollen hands or something.

Coming down to nothing seemed ok for a week or so and then I had a new flare up with new symptoms, like a rash, that put me back on steroids. The doctor suggested these symptoms were always there but the steroid had masked them out. A new set of meds later I came off steroid again and was determined to win, so I also quit from coffee, on the basis it was probably being inflammatory, and this time I did it.

I'm left now with aches and pains to nurse, which I can manage with paracetamol or sometimes an Ibuprofen. I don't want to kill the aches off, I want to know where they are so I can be more gentle with them, and this works fine. Its a nuisance when they get worse, but they do get better again after being more careful.

My shoulder ache has been the worst but it has finally settled down a bit and it begins to look like it will only respond to limited movement, or if I wanted to maybe have a steroid injection to loosen them up. I don't really want the injection. They were going to inject my right shoulder but had to hold off with covid. I'm glad they did. My right shoulder is fine. Its my left one now that is worse and proving too painful for some movements.

jamieA

Hi @Lou1234

I was on prednisolone for 5 months at the start of my PsA as I also contracted pneumonia. I was on 25mgs at the start and they reduced it in steps every week. However I had a recurrence of the pneumonia and joint pain so the medics increased it again. This happened a few times and so I ended up with a saw tooth like graph of dosage over time. Eventually the medics resorted to giving me kenalog steroid injections initially in my most affected joints and then in my backside. Like you I was started on sulfasalazine, then MTX was added and then Amgevita was added. So far it has worked for me.

Lou1234

Thank you for taking the time to reply to me. I really appreciate it. I will start the tapering and just see how it goes. Thanks again, Louise

erica3105

Hi Lou1234 I started on Prednisolone in May this year initially on 20mg then increased to 40mg as my CRP increased to 100! I was referred to Rheumatologist who gave me Methatrexate and advised me to taper off Prednisolone by 5mg per week, which seemed quite quick to me. Once I reduced to 20 my the pain started to return, then I reduced to 15mg….. I had swelling in hands which I didn’t have before. I rang the Rheumatology Nurse who said go back to 20 mg for a week and then try again, which I did but aging had blood tests my CRP is slowly increasing which confirms the increase in pain. Like you I’m scared to come off completely as the pain will be immense. I am on week6 of Methatrexate and it hasn’t kicked in yet so feeling frustrated that I’m still in pain. Seeing the Rheumatology Nurse next week again so will be asking some questions. Hope you get some answers too you seem to be on a much lower dose than me so hopefully it will be easier? I really want to stop taking steroids as you read so many bad things about them but it is quite scary if you are in such pain!

Jock1

Hi guys,

I’ve been reducing by 1mg a month as advised by my Rheumatologist so down to 6mg a day now. Get small mini flare ups but nowhere in the region of pain I was getting before so just riding the wave at the moment. Due to drop to 5mg on Saturday so fingers crossed.

My MTX was increased from 15mg to 20mg and so far the only side effects are sickness after a couple of days after I’ve taken my weekly dose. That’s around four weeks at the higher dose and nine weeks overall so again fingers crossed.

Sleeps definitely better, wake up aching but at least I’m now getting 6 hrs fairly good sleep.

Lou1234

Thanks again for taking the time to reply to me. Louise