Low dose steroids

[marie66]

Hi folks, advise/experience please, I was off methotrexate for 10 months as I was on daily antibiotics and couldn’t kick an E-Coli infection so RA run rampant. I was then put on steroids (7.5 pred) as I wasn’t coping with awful pain, swelling etc. I’ve now moved to a urine antiseptic (Hiprex), instead of antibiotics to at least let me take my metoject jabs again but I’m still on pred.

I was off it for so long, I’ve begun metoject at 7.5 moving up monthly until I’m back to 20 and begun reducing the steroids but I’m struggling with every decrease. I’m down to 2.5 but when I try to go lower everything flares and pain increases! Any ideas? Anybody got experience of low dose pred long term? Thanks M x

[Runrig01]

I personally advise people to avoid steroids as a form of pain relief. I was put on pred for polymyalgia and GCA, for which steroids are the only treatment. I had a severe stroke 4yr ago, age 52, due to an adrenal crisis. It turns out my adrenals had atrophied. I’d been seeing gp as I had nausea, lightheadedness and was losing weight. My GP felt it was an ENT issue, but I felt it was my adrenals, and asked to be referred to an endocrinologist. 3 weeks before my first appointment I had my stroke. My cortisol was undetectable, and was told it should have been over 1000 with the stress of the stroke. I’m now on steroids for life, any stress physical or emotional can trigger symptoms mentioned above, as well as headaches, blood pressure dropping, then I get slurred speech, start staggering etc. I need to take extra steroids to try and stabilise things, but sometimes have to use my emergency intramuscular injection. If I’m vomiting, injured or seriously ill I have to inject. Family have been trained to inject, and find it stressful when these incidents occur. Adrenal insufficiency can occur in anyobe taking steroids for longer than 3 weeks. Some are fortunate and adrenals haven’t atrophied and they can recover, mine however will never recover. It’s an illness I wouldn’t wish on anyone. I would recommend looking at alternative nsaid to manage the pain. Sorry, your suffering 🤗

[ruth_p]

It’s hard to taper off steroids, especially at the low end. I had to reduce mine so slowly e.g. 2.5mg three days and down by 1mg on the fourth day. I wasn’t on pred when I tapered but I used to have to cut my 4mg tablet into quarters! But if I remember correctly pred comes in 1mg tablets but I could be wrong. Steroids are not a good long term solution as the side effects can be bad. Speak to your GP or rheumatologist about how to reduce them very slowly. x

[Bon1]

I am stuck on long term pred too. I used to get really worked up about it and brought on no end of flares by trying to reduce the amount. I am now more at peace with it although of course the dream is to get off it altogether.

The amount you’re on is very very small so I would say not to worry too much. I’m no expert but I believe anything below about 5mg (relatively) safe.

Bon

X

[oldtimer2]

I have tried three times to come off prednisolone altogether - I've given up now and just stick to 5mg daily. I can manage 3mg for a few days and then start feeling dreadful. I'm OK on 5mg, but until recently was often having to increase the dose with flares.

I'm now on adalumimab and haven't had a flare since (wonderful!). Long may that continue! but after 15 years of steroids often at high dose because of bone marrow problems (a rare problem with Rheumatoid Disease) it seems that I'm going to have to stick to a maintainance dose. My bones are OK, but my skin is thin and tears easily - but I'm old as well.

[Bobbiebella]

I was diagnosed with RA in March 2020. I have severe lung issues with pseudomonas that cannot be eradicated. When it becomes active I require IV antibiotics. The first consultant I was re RA stated that methotrexate would have been his first choice for me, but seeing my lung issues decided against it. Started me on sulfasalazine, sadly I had a massive reaction, 3 months later consultant put me on methotrexate..it sadly decreased my immune system and I got numerous infections..this also was stopped. May have to go onto biologics. No decision yet.. wondering if the methotrexate will cause the same issues for you...obviously this drug helps a lot of people and my experience is only mine...hope things go ok for you..take care.xxx

[marie66]

Thanks guys for sharing your experience. 🙂M x

[Al1954]

I was with 2 mg of pred for 2 years then started with flares cost me knee operation and afterwards back to enbrel.Stopped Enbrel for 5 years because i had developed breast cancer.IN JUNE 2022 STOPPED ENBREL BECAUSE I HAVE A HOLE IN ONE OF MY FINGERS AND YET AFTER BYOPSIS ETC NO ONE KNOWS WHAT IT IS.SO SINCE JUNE I AM ON 4 MG OF PRED,MY RHEUMY WANTS TO PUT ME NOW ON LEFLUNAMID AND TAKE ME AWAY PRED DOUBT IT WILL WORK BUT I SHALL GIVE IT A TRY AS TNF DONT WORK FOR ME ANYMORE.HOPE MY EXPIERIENCE HELPS.I HAVE HAD CANCER SO THERE IS NOT MUCH MEDICATION FOR ME ALSO TRYED RITUXIMAB DIDNT WORK FOR ME

[marie66]

thanks for sharing your experience. M x