Inflammatory Arthritis and coming off prednisolone

erica3105

Hi, I was diagnosed with inflammatory arthritis in May this year having a CRP of 100. My Gp gave me Prednisolone which quickly helped to relieve the symptoms but once I saw the Rheumatologist he put me on Methotrexate and advised me to reduce the steroids by 5mg per week to come off them. I finished my last steroid on Thursday and have appt with Rheumatologist on Tues but the pain has come back severely and my hands are swollen, shoulder is sore along with hips and knee. I have been on methotrexate now for 14 weeks so clearly it’s not working? My rheumatologist said I need to be clear of steroids for them to take blood test to check if methotrexate is working, but my body is telling me it’s not. I have been told that if the methotrexate is not working they will run another drug along side it (why if it’s not working) or try some thing else. I am worried how long another drug will take to kick in as every day the pain is worse. ? Can you advise what I need to ask the Rheumatologist when I go on Tues??

jamieA

Hi @erica3105

When I was diagnosed with psoriatic arthritis I was put on sulfasalazine which didn't work. 3 months later methotrexate was added and this combination didn't work either. 5 months later the biologic adalimumab was added and this combination worked. My rheumatologist said that the combination of the 3 drugs gives a better response than each individually - what she called 1+1+1>3. I think the technical term is synergistic.

stickywicket

You've just experienced the best and one of the worst bits of steroids. Yes, they work like a dream but they're a nightmare to get off. Many have to make the final reductions very, very gradually.

As @Jamie has pointed out, it's not unusual for meth alone to not work. I take it with hydroxychloroquine which, in combination, works well for me. Others are on triple therapy. But, because it hasn't worked on its own doesn't mean to say it won't work with other meds.

The waiting can be long and painful but can't be rushed. Most DMARDS take up to 3 months to work. With luck, something will be added on, on Tuesday. Maybe the pred can be prolonged a bit longer. But I hope it goes well for you.

I

erica3105

Thank you for that, yes I hope I get some positive words on Tues and get on top of this excruciating pain😱

jamieA

Hi @erica3105

I was on prednisolone at the start of my PsA and like you the prescription was a reducing rate. When the first arthritis drugs didn't work the medics ramped up the prednisolone again and this happened a number of times. My prednisolone intake ended up looking like a saw tooth graph by the time the medics decided to try another approach by giving me direct injections of Kenalog steroid initially into my most affected joints and then eventually a larger dose into my rear end. It does seem to affect how the medics determine your inflammation though - I was seen by a rheumatologist whilst on prednisolone who said all he could see was osteoarthritis.

Although the science of making the drugs we use is exact I get the impression that the determining which drug each individual needs is not an exact science. I'll always remember speaking to the rheumatology nurse I'd seen for much of the initial phase of treatment saying she was glad the adalimumab added to the cocktail had worked as they had 7 biologics they could have tried.

I had a low dose Kenalog injection last Thursday in my rear end ( for the first time in 18 months) and it's helped significantly. I'd had a reaction to an injection of contrast agent during an MRI scan in late June and this had affected the joints in my hands and feet. The steroid injection has calmed all of these joints so I can now make a fist and don't walk like a duck.

Like @stickywicket has said unfortunately it takes time for the medics to work out the best treatment for you. I'm not one for taking pills if I can avoid it but during the time it took to sort me out I took as much in the way of co-codemol/co-dydramol/dihydrocodine/morphine as was possible to keep me sane. I was also referred to a pain consultant who helped considerably.

Hope you get the treatment you need soon.

helpline_team

Hi @erica3105

Thank you for posting on our Online Community, we are sorry to hear your treatment for your inflammatory arthritis hasn't started working yet.

It can take up to 12 weeks to start to work and as you have said you have been using it for 14 weeks, as @stickywicket has advised speak to your Rheumatologist about prolonging the steroids a bit longer and also have the conversation about the biological treatments if you feel that the methotrexate isn't working for you.

Hope the appointment goes well on Tuesday it may help to write down the questions you want to ask at the appointment.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/steroids/

Best wishes

Chris

Helpline Advisor

erica3105

I gather when I spoke to the specialist nurse that several DMARDs are tried first before biological medications due to costs! Sadly it’s all down to money these days.

the consultant asked me to come off the steroids so the blood tests are not compromised and they can see what is truly happening in your body. Whether they will put me back on them again is a question I will need to ask tomorrow but I need something to control this pain that’s for sure.

erica3105

https://community.versusarthritis.org/discussion/comment/712848#Comment_712848

Thanks Jamie, that’s really useful, I guess I am being very impatient and unrealistic in thinking the first drug is going to work and keep the pain at bay! I have lots of questions that I have written down when I speak to the consultant tomorrow. My concern is that most DMARDs seem to take some time to kick in so like you, I hope they give me some steroids again to take the pain away. Thank you for responding to me though, much appreciated!