I have just been to the consultant and he says to come off my steroids. I take 2.5mg per day. I tried about 5years ago to come off and then I was on 7mg and could not move and got down to 1mg.
He says only have a tablet every other day. I will see him in 6months, but if I am struggling I will be ringing him up. He seems to think me taking steroids is masking something else. And says I could go on some other drugs. I think he means biological ones. But to tell the truth I am doing ok on these drugs.
Thanks for listening.
Carol
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Carolsos
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You’re much better off with biologics than steroids. My gp described them as a sticking plaster rather than a long term solution. They have a horrible effect on blood sugar levels with the risk of diabetes. So it’s worth persisting with what sounds like a sensible reduction plan prior to finding a suitable biologic.
Carolsos you need to get of them asap darling. I am talking from experience here. I got off them last November after another 12mnths on them. Before that I was on them for years. Why you ask do I need to get off them? well for a start they put weight on you. I ended up having bariatric surgery for weight loss because of the weight I had put on because of steroids. Also they affect your bones in the long term. Also I found this out this time they can make you depressed and very emotional. I am now no longer depressed and I can't remember the last time I cried. When on them I could sob for Englnd. So please do get of them.xx
Going from 2.5mgs a day to one tablet every other day seems a rather drastic reduction, particularly after such a long time on them ?
Perhaps your GP could advise a tapering regime ?
I am on a steroid taper just now after taking them for a bit over 2 years, but I am reducing 0.5 mgs every 7 days or so and seem to be doing ok. (I was advised 1 mg every 7 days, by rheumatology but found this a bit difficult).
I have been on 10mg a day for 8 years.tried a while away to slowly wean myself off by just 1/2 mg a day but my hands seized up and so much more pain.I will read other peoples views to you.good luck
It seems generally accepted by most rheumatologists that low dose steroids - 5mg or less - can be useful in controlling symptoms of inflammation in Rheumatoid Disease. While, of course, taking other medication to control the disease process which attacks joints and other bits of us.
But here the situation is slightly different in that the specialist thinks that it may be hiding something going on which needs more active treatment.
You may find, however, that you need to tail off more slowly. Doctors often don't realise how difficult it is and how awful you can feel. The one mg tablets are useful for this as you could reduce to 2mg, then one mg then possibly alternate days before stopping altogether. I do find that, when reducing, I often get some muscular aches and pains which I just have to put up with for the end result.
Treatment should always be co-operation between the person who knows your body best and the specialist knowledge.
I was put on steroids in 2012 initially for polymyalgia, for which steroids were the only treatment. In 2016 I was diagnosed with AS, and no matter how much I tried I struggled. Not with the AS symptoms but nausea, lightheaded, dizzy, weight loss. Turned out the steroids had atrophied my adrenal gland causing adrenal insufficiency. There are only 2 hormones the body can’t live without; insulin and corticosteroids. I now need steroids for life, have to carry an emergency injection. Any stress good or bad can have me spiralling downwards and at risk of life threatening adrenal crisis. Everything I do has to be planned carefully, if I go to the gym it has to be when steroids are at their peak or i feel ill. If I want to do a big food shop I have to take an extra dose or I end up sweating profusely and feeling nauseous. It is not an illness I would wish on anybody. So i feel your consultant is taking the right action. Do look out for the symptoms I mentioned and if in doubt get an early morning cortisol test done. I had a stroke due to the low cortisol and was diagnosed with AI 3 weeks later, I was fortunate others have died from their crisis.
Another AI sufferer! Mine isn't due to steroids for RA. They have no idea really why mine appeared but after three blue-light admissions to Resus and an Endocrine referral they decided I have undetectable cortisol and ACTH which has meant that the Rheumatology team won't issue steroids for my RA - a blessing in disguise as I'm not on overly good terms with pred(!) the few times I've had it for chest infections. AI is not an easy balance and the mix of post MTX fatigue with AI fatigue can be confusing to say the least. I found the oral MTX nausea unsettling as vomiting means A&E for me. I really didn't fancy my chances in getting them to take crisis seriously if I'd recently taken MTX. At least injections have helped the nausea.
I find I nolonger drive in morning rush hour as I can't be sure my hydrocortisone has kicked in well enough and, like you, everything has to be planned with back-up meds at hand. It certainly makes life a balancing act.
Keeping an eye on steroid intake and bearing adrenal crisis in mind is certainly worth taking on board.
Off to find my Metoject . . .ho hum, Friday evening 'treat'!
Hi yes I get fatigue from my AS, and find if I wake to pains worse than usual I get low cortisol symptoms; generally nausea, headache, lightheadedness. I suffer severe migraines with vomiting 10-12 times, so have had to use injection a number of times. Thankfully it normally halts the vomiting and eases the headache. My endo is happy I don’t need A&E on these occasions as I can rehydrate. Obviously if it didn’t resolve I’d go, but like you have concerns at not being treated correctly. My cortisol was undetectable and they did try HC but I had daily highs and lows, with daily low symptoms, I also gained 2.5 stone after losing 3 stone on Pred. So they switched me back to pred, initially local endo insisted daily and discharged me. On a prof advice my GP referred me to Barts, where they increased me from 5 to 7.5mg, splitting my dose to 5mg at 7am and 2.5mg at 4pm, and started feeling nearer normal for first time in 18 months. It has settled some of my AS pain too which is a blessing. My hubby is very good at noticing when I’m getting low and prompting me to take some HC. Where would we be without them. Take care going forward and hope yours remains manageable. Wishing you all the best
Take care, here's hoping we both stay free of adrenal crisis for the forseeable future. It's not a place I enjoy being, although in reality I'm so rough at that point I really couldn't give two hoots. It's my poor husband I feel for, he looks grey by the time they finally decide I can move to Resus recovery and my poor lads waiting here at home are worried too. Much nicer when I stay on an even keel but you know what it's like, hindsight is wonderful, I've had a few 'near misses' over the last couple of years but have stayed at home more by luck than judgement, I'm still not that adept at second-guessing where my body is heading. All too often I realise after the fact that a double-dose would have been a good idea! The joys,
Trust you keep well with your present regime. All trial and error I fear.
Yes it’s all too familiar, we seem unable to make rational decisions when we are low. I woke to low symptoms this morning, just from having 2 large glasses of wine whilst out having a valentines dinner. Thankfully 5mg HC and a lay in bed till BP recovered. Like you I’ve had a few near misses, and survived by luck more than anything.
I want your Rheumy! I've been on 6mg, 3mg & 2mg for years, in total over 7 years. I've asked my (now moved on) Rheumy & her SpR's if I could come off them so many times & she did actually concede it was a good idea to reduce them around 5 years ago. She changed the deflazacort she initiated when I first saw her to prednisolone as they don't make a lower dose than 6mg & whilst it was easy to halve them any more than that & it wasn’t so certain I'd get an exact dose. So, she prescribed 1mg prednisolone but then she wouldn’t sanction me reducing them! I do have biennial DEXA scans & doing ok, not changed from osteopenia/borderline osteoporosis & my FRAX score has actually increased (supplement & including more dairy in my diet). I'm frustrated, I'd love to know just how well controlled I’d be if I was able to do a long taper. I should be seeing her replacement at my next appointment so will ask him & see what response I get. A GP did try once but the taper plan he gave was too quick & at my next appointment soon after my Rheumy had me go back to 6mg.
I do hope that your tapering plan is a good one for you but at least you can call him if it doesn’t go so well. I do hope it's not necessary though & you'll smash it. It will be interesting to see what happens once you are able to stop them so do please let us know won't you Carol? Thanks. x
I most certainly will keep in contact about coming off the steroids nomoreheels.
X
Hello Carolsos,
Everything I've experienced and read about steroids suggests that very slow tapering is a good idea. My consultant set me off on reducing from 5 mg by dropping 1 mg every 4 weeks. When that became a bit iffy, I was advised to make it more gradual, i.e. alternate days take 4 and 3 for 2 weeks, 3 daily for 2 weeks, alternate 3 and 2 for 2 weeks etc. It took a long time, but caused me no further problems. I've now been off them for 2 months.
It is well known by the Polymyalgia groups that to come of steroids successfully, there needs to be a very slow progress down. Eg half a a 1mg at most for a week or two then another half and do on gradually down to only a half per day. There are little cutters for this purpose in chemists.
If you don’t go slowly the Adrenalin may not be ready to take over.
I have been on steroids off and on 5 years, now waiting for second cataract op due to steroids, and fractures to back because of osteoarthritis due to steroids, they are a manic kick to pain , long term not good
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