Advice on steroids

[Laceygreen]

Hi all hope everyone is doing ok;I’m looking for advice I’m on methotrexate and having to take steroids 10mg a day and gradually having to reduce it to 7mg then 5mg then 2mg but then I struggle with pain this has been going on for over a year until they give me some other drug that will help. My question is how long have others been on steroids? As they are the only thing that’s making me feel normal.

[Lolabridge]

If you’ve been on methotrexate for at least six months but still struggling to get off the steroids it’s likely that the MTX is not working sufficiently well for you. I suggest you contact your consultant and ask for help. Maybe the dosage can be increased or another drug added to improve the effectiveness. I don’t take MTX but I know all about steroids. They have helped me a lot during the trial and error phase of trying to find an RA drug that worked well for me. But now I have I’m tapering off too. 🤞🏻

[ketiv74]

I agree with Lolabridge above. If you are still having issues after being on Mtx for over a year, means it is not working well enough. Not sure if you were ever off the steroids? even for some period? that could tell you if Mtx had any effect or not. Steroid work for sure, but going up and down the steroid does isn't very good for your body either. Definitely re-evaluate your treatment with your Rheumy.

I am on Mtx for 2 years now, took steroids at the beginning while Mtx took full effect and then tapered off completely. That took about 3 months total. Then didn't need anything for about year and half, until Aug 2020, when I started flaring every 6-8 weeks. So now she started me on Hydroxychloroquine along with low dose steroid in addition to Mtx. Hope it starts working soon , so I can get off the steroids.

Good luck & take care, hope you find something that works for you soon!

[Jaxine]

I' was diagnosed two years ago. Throughout my journey with RA I ve been prescribed steroids in between changing meds and when flare ups become too painful to handle. When I expressed an anxiety about the side effects of new drugs, she dis convey that i should be more concerned about the side effects of steroids. I now will only take steroids if absolutely necessary. However, with RA steroids, are at times, a necessary evil! It s such a shame because I feel so much better when on them myself, we are dammed if we do and dammed if we don't! But once we get the right drugs to control the RA then there is little need for them. In answer to your question I only ever take steroids to control RA flare up s when my meds are not effective and generally no longer than 2 weeks. The longest I've been on them was for 4 weeks starting with 40 mg tapering down but this was due to a chronic chest problem a consequence of MTX! By the way only 2% suffer from this whilst on MTX, a lot of people have no problems on this Dmard! I'm currently on them now whilst I await new meds. Good luck!

[Summerrain14]

I agree too that you may want to talk to your rheumy team as it seems like the MTX isn’t working too well for you.

I started on MTX in August last year, after four months my dose of MTX was increased as I just can’t get below 8mg of steroids alongside 20mg MTX and sulphasalzine. I have been on steroids since last May and am keen to taper off them but right now they are the only thing allowing me to function at the moment. I am having an assessment next week to see if I will meet the criteria for biologics. Steroids are generally used as a bridging therapy whilst we are transitioning onto our RA meds but I have not been able to taper off them which is why my rheumatologist is looking at adding in another medication. x

[HappykindaGal]

As others have said, talk to your doc. I was in your situation too. Each time I reduced steroids to around 2mg, I was back to wearing compression gloves and not being able to hold anything etc..pain everywhere it seemed.

I was approved for biologics. Changed everything for me, I was lucky as they worked within a month too. Off steroids within a month or so as was already down to 2mg. That was two years ago and been pretty much fine since (don’t let me have talked something horrid up there!).

[Angels54 in reply to HappykindaGal]

Hi do you mind me asking what biological drug you on as I started on Abatacept a few weeks ago just slowly reducing steroids,

[HappykindaGal in reply to Angels54]

Not at all. I'm on Benepali

[Fra22-57]

I have been on same 10mg since 2011.have tried to even try 1/2 mg reduction but made me so ill.I am on pregabalin, sulfasalazine, hydroxychloroquine prednisolone aswell as Abatacept biologic. rheumatoligist said I am on such a small dose so ok. Can cause problems thou

[Plumcrumble]

Hi I've been on steroids for about 40yrs on a low dose. I'm on 3mg daily now, I've had to up the dose a couple of times in the past but not for long, and when I had chemo 8yrs ago that was was part of the treatment. I'm on lefludomide now but was on methotrexate before the chemo. Hope your feeling better soon, best wishes Sarah

[Angels54]

Hi I have been on steroids on and off for 5 years I think it’s ok to reduce them once you get the pain under better control , however. don’t suffer pain until you get sorted , I think we all know our own pain and sometimes we have to stress how bad that can be .

[nomoreheels]

I've been on a maintenance dose of prednisolone for 7 years, no actually for the first couple I was on deflazacort but when I started tapering I had to change to pred as DEF tablets aren't made lower than 6mg. I've been on MTX a long time but tried double therapy with SSZ & LEF, both had to be stopped to why I remain on pred with MTX. Because of being on them long term I’m prescribed Adcal-D3 & have biennial DEXA scans. I have tried bisphosphonates unsuccessfully.

I do hope you can come off steroids. Whilst they do tackle symptoms they’re not the best thing to take on a regular or permanent basis, unless there's no other option. The least time you take them the easier (!) it is to come off them, least time too.

[craigsif]

Hi I am on MTX20mg weekly, for the past several years along with 2.5 mg steroid daily, was on 10mg then 5, but I had grumpy episodes to say the least it's been dropped to 2.5 mg daily which has helped and don't turn green anymore! I still get days when it's very uncomfortable, tramadol and paracetamol help. I use ibruffen gel 10mg on my feet, this was recommended by my rheumatologist and checked with my pharmacist, as it's absorbed via the skin not via digestive system.

[helenlw7]

I’ve been on steroids for over 10 years. I’m also on mtx and inject Enbrel. They are the only things that help me feel ‘normal.’ At the moment I’m on 20mg a day because my joints were very painful and my breathing laboured (I also have severe asthma) so my lung consultant raised my dose from 7.5mg to 20mg lastAugust. I am unable to get below 7.5mg because my body is unable to produce its own natural steroid. I will be starting reducing next month.

[Hidden]

8 months on a fairly low dose, but the second 4 months was spent tapering from 5 mg to 0.