Reducing prednisalone

[Alice70]

In November I was in hospital with chest infection came out with siatica ,Dec I started with upper body pain neck jaw shoulds writs ect GP gave me inflammatory blood test results came back 404 ,because of noduals on writs ect my gp thought rheaumatiod arthritis,although he did say unusual at my age76 he got me to see rheaumatolgist quickly February was diagnosed as polymyligia, my gp was not convinced he sent me back ,saw a different rheaumatolgist in April she said it wasn't polymyligia it is rheaumatiod arthritis ,started me on hydroxychloroquine which I have been on one month ,I believe it can take 12weeks to work ,trouble is I am having difficulty dropping prednisalone as told to ,I was given 30mgs by gp in January ,I dropped the first 15 mgs pretty quickly without to much trouble ,I have dropped down to 11mgs now but with difficulty Saturday I decided to drop to 10 half mgs with help from pill cutter ,I can really feel the loss of that half mg ,more pain feeling depressed, please advise on how to come down from prednisalone, I started cutting down from 15mgs late February

[wilbertjellyfish]

I've been trying to cut down too. Slowly is the key. 1mg per month. Sounds like your doing that. I find that I notice a difference the first week then the situation improves.

However I'm far from ok, on mtx and biologic and still sore. I'm just determined when I see consultant next month he can't say I haven't tried.

It's just not easy and if you have to go back up and come down again you can

[Alice70 in reply to wilbertjellyfish]

I do find the pain and stiffness eases after a week or so ,I take diclofenic for lower back pain that helps a bit ,I'm blaming prednisalone for depression ,but maybe it is the rheaumatiod it's self ,what's mtx and biologic thank you for reply

[Jillyanne]

hi, the best way I found to cut down was

Day 1 / 11mg pred

Day 2 / 10mg pred

Day3/ 11 mg pred

Day4 / 10mg pred and do that for a month and then the following month

Day 1/ 10mg pred

Day2/ 9 meg pred and so on , it’s really hard work but I got off them after being on them for over 5 years , it took me about 7 months to get off the buggers , but you can do it

[Alice70 in reply to Jillyanne]

Thank you I may try this way ,I'll speak to my gp tomorrow

[Durrell]

very slowly, like jelly fish says. I’m also reducing 1 mg a month. But talk with your gp & Rheumy. You need to know that the hydroxy is working & the flare is becoming controlled otherwise you will end up in another flare & they will up the steroids. I’ve just had this for a good couple of years.yo-yoing steroids which isn’t good. I’m now back on a biologic & mtx & I am feeling the benefits so reducing now is good time for me. I was also like you I found around 10 was as low as I could go until my RA is under control. This is obviously my experience but do speak with your gp & Rheumy. I’ve so wanted to get off them for a long time & it’s only now that I can sensibly do that under the guidance of my Rheumy.

[Jeremycfc]

Hi ,like all the other comments can't stress enough very very slowly, I was on 5mg for 14 years and took 18 months to get off them, good luck and best wishes 👍

[Alice70 in reply to Jeremycfc]

Thank you

[Runrig01]

My story is similar although I am younger. At 46, I suddenly woke to severe pain in my thoracic spine, pelvis and neck. My gp referred me to rheumatologist with ? Polymyalgia. About 3 months into treatment with steroids, I developed GCA, so my dose was increased. Frustratingly the pains intensified as I reduced, and a rheumatologist in Leeds suspended an overlap with another condition, so did X-rays and scans. They showed I had aggressive ankylosing spondylitis. They were keen to get me off steroids, as it’s frowned upon in AS , due to the osteoporosis risk, which with a fusing spine is not good. I found the tapers challenging, but one piece of advice helped. If the pains after reducing intensified after reducing that was due to PMR flaring, and I should increase. However if the pain stayed the same or lessened slightly, it is withdrawal pains, and to ride it out. I seen the countries top expert in GCA, due to being under 50, he agreed I had GCA, and gave me a taper he called “dead slow, nearly stop”, where each week I would reduce 1mg on one day, then next week 2 days etc, so it took 7 weeks to drop 1mg every day. So like 9/9/9/8/9/9/9 then the next week 8/9/9/8/9/9/9. It fooled the body into not noticing the reductions. Unfortunately I’ve been on steroids since 2011, and in 2017 having got to 7mg I started feeling nauseous, losing weight, getting dizzy and lightheaded etc. I was referred to an endocrinologist with suspected adrenal issues. 3 weeks before that first appointment, I had a severe stroke, due to an adrenal crisis. My adrenals had atrophied and were producing no cortisol, and I was diagnosed with life threatening adrenal insufficiency. I have to carry an emergency intramuscular injection at all times. Any stress good / bad can leave me feeling very ill. So much as your keen to taper down, I urge you to stop if you get any of the symptoms I’ve mentioned, and get your gp to do a blood cortisol between 8-9am to check your adrenals are still producing cortisol. At that time it should be 350-550, mine was undetectable, and I’m told 90% of my adrenal cortex has atrophied. I now need steroids for life. My GP initially blamed ENT issues for my symptoms, the day before my stroke I asked if I could go back up 1mg, as I couldn’t cope with any stress. Spent the day in tears, yet I worked as a ward sister and had a reputation for nothing stressing me. Sadly my endo said had I increased as I asked, I may have averted the stroke, but my gp said No stay at 4mg till your seen in 3 weeks. Sorry for the length of my reply, but it’s a side effect that patients are rarely warned about. Take it slowly and listen to your body 🤗

[Alice70 in reply to Runrig01]

Thank you ,sorry to hear you went through so much ,yes I think our bodies tell us

[Neonkittie17]

I’d want go ask the rheumy or nurse again re tapering your oral steroids especially as first time having oral Pred and decide what’s best re tweaking them/tapering. Those RA veterans/people on Pred who have more experience of tapering and have been given the go ahead to tweak their Pred as they know how it works best for them ... know exactly what to do. If you’ve got to a place where you’re feeling it isn’t bearable around 10mgs I’d ask the rheumy team. They may want you to taper more slowly which was my one experience on Pred and as Jillyanne and Wilbert say, theirs was a long taper and similarly so was mine and it took 10 months. I was tapering very small amounts once under 5mgs for 6 months.

I know Hydroxy is a slower worker and yes you’re right it is said to take 12 weeks to give full/an improved effect. Have you been given advice re painkillers/relief as sounds like you need something? Pred can cause depression/mood swings. Did for me .. it mainly caused me to feel a lot of intolerance and I’m usually indestructible re being a strong person/feeling down, Those strange feelings do go once off Pred/very low dose Pred. I hope you soon feel some improvements. 🙏🏻

[Alice70 in reply to Neonkittie17]

Thank you ,yes I'm listening to the experience of yourself and others on here, I'm inpatient to get of them ,I think I need to slow down

[Doodlereggie]

I have been on 5 mg preds for 15 years or so,and my rheumy does not seem unduly worried,as I have regular dexa scans and osteo injections twice a year.I have had methotrexate before,biologics,and now JAK for last two months.Now I am virtually pain free after two months on new meds,I may start to reduce preds,but not until I see my rheumy in July,and he will tell me how to taper if necessary.As I am nearly 80,and never had a broken bone,he seems to take a very relaxed attitude to steroids,thinking the fact that I am still independent,and very reduced pain and good mobility,they have to be weighed up .I do know that you have to taper very very slowly,after so long on preds,but will not worry if I stay on 5mg for life!Good luck x