Has anyone successfully weaned off of prescription steroids after over 17 years of use? I am currently taking just a "maintenance" dose and I want to stop/wean off completely but was told by my Rheumatologist that it is not possible due to the many years of use shut down the Adrenal glands.
Long-term steroid use?: Has anyone successfully weaned... - NRAS
Long-term steroid use?
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patrickd
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Hi Patrick,
If your Rheumatologist has advised that you should not try to stop your maintenance dose of steroids then, in your situation, I wouldn’t even contemplate trying!
Yes I believe that having been taking them for 17 years will have caused adrenal insufficiency as he had told you. You could of course try and get a second opinion from another consultant but I think the answer may well be the same.
I agree with Lola. Not only re adrenal insufficiency though. I'm also on long term steroids, though it's 9 years for me. I have tried to come off them a few times but never successfully. I'm resigned to them being part of my med regime now, but it's bone density which is a concern for me with being female & post menopause. I do have biennial DEXA scans which have been fine, had they not I may have been more resistant to continuing on them a while back. I'm also prescribed twice daily Adcal-D3 & include dairy in my diet. This has helped me keep my T score up & fracture risk down.
If you feel really strongly about coming off them I’d either have another discussion with your Rheumy, or seek the views of an Endo.
It is possible to have tests to establish whether your adrenals are definitely suppressed - but i would save your money and assume that they are and you will ned to take a maintenance dose after that many years. It's usually around 3-5mg daily and seems at that dose to be 'replacement' and not likely to cause problems.
It is sensible to have a dexa scan to establish bone density from time to time - but keep active with weight-bearing exercise and plenty of calcium and Vit D in your diet (or possibly the Vit D as a supplement if necessary).
First, thank you everyone for your advice! Second, I am taking a maintenance dose of 4mgs & rotating every other day 4mg/3mg (sometimes I even just take 2mgs but not for more than 1 full day). I do get regular bone density scans and I am just a hairline below "normal" for a woman of my age. I do take the supplements...vitamin D & Calcium. The reason I want to be completely off the steroids is I've been noticing I am having more & more indigestion/stomach issues with each passing year. Within a few minutes of swallowing the pill my stomach starts with acid reflux. Yes, I take them with meals, bread, crackers, I've tried milk, different times of the day, splitting up my dose etc. I've developed an extremely sensitive stomach since beginning these and we even switched from Prednisolone to Methylprednisolone. The Methyl is much better with other side effects I was experiencing but no improvement with my stomach. I do take Omeprazole (as needed) and Famotidine before bed but still have bouts of reflux (watch what I eat and what triggers. I started the steroids before any other treatments and before my current biologic.I just wondered if there was anyone out there who was able to stop after many years. If they were able to "wake up" the adrenal glands.
in reply to patrickd
I was told you should always be on regular PPIs when on steroids if you have underlying GORD (reflux) or if you develop signs of irritation when taking them, like indigestion, and/or reflux, and/or persistent nausea. Potentially, if you’ve not been taking a regular PPI, it may be that your stomach and reflux is getting worse due to chronic gastritis, which is irritation and inflammation of the stomach lining. If you also take NSAIDS like brufen or naproxen, they’ll potentially be adding to the irritant effect, too. I would strongly advise speaking to either rheum or your GP with a view to taking regular PPIs, and potentially even regular famotidine, too; uncontrolled reflux is a health issue in its own right, regardless of the cause, and can cause some major complications, including potentially increasing the risk of oesophageal cancer. I say this as someone who had a gastroscopy last week because of suspected acid issues even though I’ve been taking a decent dose of daily PPI for years.
With regards to the coming off, I’d also strongly suspect the answer is a straightforward no. There are blood tests you can have done to establish adrenal function, but after 17 years they’re unlikely to say anything other than you have secondary adrenal insufficiency from long term pred use. My understanding is that once you’ve been on steroids at a therapeutic dose for 12 months, it usually takes at least 12 months for the adrenals to kick back in, but sometimes they just don’t even after a lot longer. Given that adrenal insufficiency and adrenal crisis are potentially life threatening, and you’ve been on them for the better part of two decades, that’s probably why rheum haven’t suggested doing the blood tests. If you’re really that adamant about wanting to try and come off them, you could ask to be referred to an endocrinologist for their opinion as to whether it’s possible. Endo would be the experts in this situation rather than rheum, but I think the answer could still be the same. You’ve been on them an extremely long time.
It doesn’t talk specifically about people that have been on them for years and years, but you may find this link about steroid management (including using PPIs) useful:
I was on prescription pred for 28 years and I managed to wean myself off of them but it took many tries and it was very slow and was under the guidance and ok’d by my rheumy. I assume you have been tested to check if your adrenals have shut down otherwise your rheumy wouldn’t say you can’t wean off the steroids. You do need to take notice of your rheumy and don’t try to wean in your own , they wouldn’t say no without a reason because no one wants their patients on long term steroids. Luckily for me I had no problems and bone density was fine but do keep up with your dexa scans to check you don’t need to take supplements.
That is amazing! So, it sounds like it IS possible! I am going to continue to "try" very, very slowly. I will talk to my RA DR today about it. She never said "don't attempt or stop". She just told me that "most likely" I can not stop them ever. I am so glad to hear this. THANK YOU so, so much! Are you ok today?
Fingers crossed for you Patrickd, small amounts and very, very slowly but it’s good you’re doing it with the advice of your rheumy, that’s always the best way. I’ve not been on steroids at all for 3 years now, the fact I started a biologic around the same time helped me to stop them this time.
THANK you. If you can do it, I believe I can do it. I also totally agree with you that I need to take it very, very slow which is my intention. I do not think I need them anymore for my inflammation, Rheumatoid etc. My current medication is what is working. Steroids scare me.
I’ve been taken off steroids by my consultant. I was on them from diagnosis in 2003 till 2017. Initially on 7.5mg then after 5 yrs dropped down. So approx 8 yrs on a low dose of every day 2.5mg and for the last couple of years an alt day 2/1mg before stopping altogether. First Dexa scan was within normal range.
There is something called a short synacthen test that can be done to test for adrenal insufficiency.
It has to be done in hospital and it involves several blood tests and an injection of a synthetic hormone which is used to see if your adrenal glands respond.
I dont know what the clinical criteria is for getting one but its worth an ask if you really want to get off the steroids
I moved to Wales and have a new consultant but he's not a Lupus specialist. I've been on steroids for 28 years and he's said he can't believe I haven't tried to come off them. He's told me to come off altogether, I don't know what to do now?
Perhaps a second opinion from a consultant who is a Lupus specialist!! By the way your reply has popped up on the NRAS site.
There aren't any in Wales, otherwise I would obviously!! My question is about reducing steroids, which is the same issue as the people posting. The Lupus and the NRAS site come up on the same Healthline page.
Has your new consultant explained why he wants you to come off steroids? Is anything being offered as an alternative? Has he suggested how you should attempt the weaning process? You don't say what dose you are on but I do feel you need medical advice before you attempt it. May I suggest you see your GP to discuss this.
Thank you, I will do.
I have been on steroids for 10yrs, and was trying to reduce my dose to get off them, as I was diagnosed with AS and they can expedite osteoporosis of the spine. When I dropped below 7mg I started steadily losing weight without trying. I was getting dizzy spells and feeling nauseous all the time. My GP thought it was an ENT issue, I suspected it was my adrenals and asked to be referred to an endocrinologist. 3 weeks before my initial appointment I had a severe stroke, age 52, suspected to be due to an adrenal crisis, as my cortisol levels were undetectable and should have been high given the situation. I was on 4mg Prednisolone at the time. I had the synacthen test 3 weeks later which Marionfromhapoydays mentions. It’s where they draw blood to check your cortisol level, then inject a synthetic version of acth which should stimulate your adrenals to produce cortisol. My levels were undetectable again and peaked at 72 after the injection, they should have been >450. So they confirmed I had severe life threatening adrenal insufficiency, apparently about 90% of my adrenals are destroyed. I now have to split my pred dose up as although it’s daily for it’s anti inflammatory purposes, it only works as cortisol for 8hrs. I have an emergency intramuscular steroid injection I have to carry at all times, if I’m sick or injured I need to use it. I use mine fairly regularly as I get severe migraines with repeated vomiting. My family have been trained to use it, without it I could die. Every day has to be planned as good or bad stress can trigger symptoms that will progress to a crisis. A sudden gate change at an airport has triggered symptoms, as has an argument with hubby. I wouldn’t wish it on anyone, as although you can take extra steroids for the symptoms they can take an hour to work, whereas a healthy body produces cortisol in seconds to deal with these situations. Also diarrhoea is a symptom of low cortisol, so it can be that you won’t absorb the tablets, so have to inject.
I would ask to be referred to an endocrinologist to check your adrenal function before trying to wean. Then if there is an issue they will issue you with an injection for emergencies. My endo said anyone on long term steroids should carry an injection in his opinion. Also do you carry the new red steroid card, rather than the old blue one. If not I can attach a link to print one off, as they inform medics more clearly on the risk of crisis. Sorry it’s been long winded, but I wouldn’t want anyone to go through what I did. No particular dose is a safe dose, because on a bad day your need for cortisol can easily exceed what you’ve taken orally. I would definitely follow your rheumatologists advice though. Stay safe and take care 🤗
Wow! Great information and advice thank you so much! I am so sorry all you are going through. I've been chastised for telling others to try not to take this medication for long term and I'm just being honest! I do not want anyone to be stuck on this drug for the rest of their lives! Look, I started taking it 16 years ago and at one point I was taking 80mgs. Yes, it did help with my pain BUT during that 4-month timeframe on that dose I had hallucinations, forgetfulness, could NOT get any more than 3 hours of sleep a night and was NEVER ever tired, cataracts (40 years of age, which needed to be removed in both eyes), suffered from seriously high blood pressure, diabetes, overweight, repeated infections etc. once dropped I was so, so much better. I try to warn others what I wish I really knew...this is not a drug to be taken "lightly". Yep, it helps many, many people but it's not safe for long-term use! I will find out about an Endocrinologist who might help me. As far as carrying that ID card you mentioned...no one ever mentioned it to me so I printed it out myself. Also, I do know when it comes to steroids or any medication to wean off...rule of thumb is to go slow and go low.
Yes I was on 60mg for a long time as I had GCA with the risk of going blind, it needed high doses. I’m the same re warning people about pred, many love the effect it has on pain and beg to continue on it. However it is the devils poison with so many issues. It doesn’t help that Drs never warn about the potential issue of your adrenals atrophying and leaving you with AI. I too have weight issues I switched to hydrocortisone for 8 months when I was diagnosed with adrenal insufficiency, but put 35lbs on and my inflammatory arthritis worsened. I’m back on pred and weight has stabilised but struggle to lose it. I’m constantly hovering in the pre diabetic range, desperately trying to get it down. If you do get the thumbs up to taper definitely do the dead slow nearly stop method. Also if you get any potential symptoms of AI return to the previous dose and seek advice from your GP. I’ve managed to get down from the 7.5mg I was on to 4.5mg which I split as 3mg at 7am and 1.5mg at 3pm. If I miss or delay the afternoon dose I quickly get nauseous and lightheaded. Bizarrely I was only able to reduce once diagnosed with heart and lung issues connected to my AS. I have lung damage from aspirating stomach acid, and have areas of collapsed lung due to my ribs being fused, and therefore they don’t expand fully. So I have an electric bed so I sleep slightly raised too, and they changed me to a stronger PPI. Definitely find an endo who will check your adrenal function so you know if it’s safe to taper. Good luck
BTW...I was told to split my dose rather than taking the entire dose in the morning at once. I do take 1/2 in the morning and 1/2 in the afternoon. I can not take it before bed because it really upsets my acid Reflux (can not lay down at all) and keeps me awake at night. Thank you again for all your information! I hope you are doing well considering all you've gone through. I want to give you virtual {{{{{{{hugs}}}}}}}! From me in the USA to you! God Bless you and keep you safe and well!
I have the same problem, have been taking the 5mg. Maintenance dose for about 4 years. I have attempted to get off this 4 times and failed. One Doctor Sid reduce by .5mg. A month. Several others try 1 mg. A month. One consultant said 1mg. A week. All finished up in failure. I now take 23 pills a day and will be trying again this summer, probably the .5 mg. A month. Have been on Prednisone now for about 15 years, at first it was a wonder drug, but not now. I have had a left knee and right elbow replacement. Owing to heart and kidney problems they now won’t replace the right knee or hip from which the pains are horrendous even taking Co-codemol 500/30.
I am sorry! I was starting to believe I was alone but apparently, there are many in the same boat. I am trying to wean off myself right now. Go low, go slow. I am cutting back by 1/2 an mg every two weeks to see if I can swing it. Thank you so much for your information. Maybe we could wean together?
I’m in the same position as you. I’ve been on various doses of steroid since 2004 and have tried to wean myself off them. I saw an endocrinologist who said because I’ve been on them for so long my adrenal glands would no longer make the body’s natural steroid. I take 10mg a day.
It just seems like your Andrenal Glands should "wake up" or there should be something you could take to help "wake up" your glands and get them back to working condition. Thank you again for your information! I appreciate it very much!
i started prednisolone in 2003 and came off in 2019. I had been on 30mg at one point for almost two years due to methotrexate attacking my lungs, other times short courses of 60mg for an eye condition, otherwise 15mg for flares, then 10mg or 5mg for the most part.I weaned slowly from 5mg alternating 5mg then 4mg for a week then staying on the lower dose for the rest of the month before reducing again. I was successful. My consultant had suggested I remain on 5mg maintenance because of the long term use. He retired and the new consultant was happy for me to try. I hope you are successful.
YOU give me hope that it IS possible. I honestly believe that I do NOT need steroids anymore. I feel the biologic I've been taking is doing the trick, thus another reason why I want to stop taking them. Every year I go to my Cataract Surgeon for a follow-up and he keeps STRONGLY urging me to try to stop them. He worries about my eyes and future health. Look, I know they are a miracle but SHORT TERM is the key. People do not want to hear this but it's just a sad fact. Thank you again to EVERYONE who responded. I am going to continue to VERY slowly wean off.
I so agree they are good for short term acute conditions. I think 3 or 4mg is what our bodies produce naturally. I agree about eye conditions too, I've had both cataracts done, they said probably more due to age but I know steroids can potentially accelerate them in some cases. As yourself, I wanted to be off them if possible. I was told to be aware of how I felt whilst reducing and go back up to what I had just reduced from and stay there a few days more, giving the body time to kick back in.
You sound like you do know how to reduce very slowly, I do wish you well and hope you manage it, it would be good to hear you have.
I find when I’m taking prednisone that it really upsets my stomach and has given me gastritis several times. I’m convinced though that with me it’s a lactose intolerance that flares up only when taking pred. Generally I only take them occasionally when prescribed by my rheumy or GP and I’m usually on my knees metaphorically speaking at that time. I’ve asked for a lactose free version but no one will prescribe them because of cost probably so I now ask for a PPI but if you ask me the cost of having to give me 2 or 3 prescriptions would surely cost more but that’s the NHS for you. I know you’re in the USA but I would perhaps look at diet when taking your prednisone because all things milk or dairy could be making the side effects worse ? Just my personal opinion and how it affects me.
See now that is the other controversial drug issue. PPI's are not great to take forever either. Tests on them long term are showing developing heart failure. Also, once you are on PPI's how do come off them? I've tried but can not. My indigestion/heart burn gets worse so there is yet another drug...go slow and low with.
Yeah I have a hiatus hernia too which doesn’t help with acid reflux at all but then again if I reduce the fat and stay off dairy without totally excluding it it doesn’t give me many problems. I rarely take a PPI just the odd occasion when it’s really bothering me. There’s a lot to be said for probiotics to keep your gut healthy definitely helps the acid reflux too.
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