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14 years of prednisolone - hard withdrawal symptoms

millymumpkin profile image

Finally moved away from that haystack causing eosinophilic asthma. Stopping pred has been hellish. Anyone else care to share their pain? I am so glad to be free of the devil's tic-tacs, but weakness, nausea, pains in every joint & lethargy are still pretty rotten.

48 Replies

Have you had your cortisol tested?

No, nor will I as I know I willbe told to go back on "low dose pred". I have very clear adrenal insufficiency symptoms - just asking how others got through this

The only way to manage them is to get on replacement therapy. If you have adrenal insufficiency not having replacement steroids could literally kill you.

Dino40 profile image
Dino40 in reply to millymumpkin

You need your cortisol testing. After 14 years it's very likely your adrenals have gone caput.

Who is managing your wean, is it your Consultant?

Might it not be better to get tested and tell them that for your replacement you want to be on the lowest dose of hydrocortisone. Far less side effects but you will stop feeling so ill. Going into adrenal crisis will only mean a hospital admission and you will be set back even further and on a higher dose. As others have said it is a fatal disease which does need medical assistance.

Hi … I was on pred 20-30mg every day for 5 yrs .. coming off was tough especially below 10mg .. took me a year but unfortunately it shut down my adrenal glands so now I have secondary adrenal insufficiency and am on steroids for life but it’s now hydrocortisone

DAsthmaD profile image
DAsthmaD in reply to Mark-f

Hi. Can I ask did pred cause problems with weight gain? Did coming off help with the Weight? Does Hydro cause weight issues? Thank you 🙂

Lottie007 profile image
Lottie007 in reply to DAsthmaD

It’s difficult to say with regards to the weight gain from being on pred as everyone is different. My adrenals stopped working after 2 1/2 years of high dose pred and I’ve been told I have permanent Adrenal Insufficiency. The hydrocortisone dose is a replacement dose for what we’re unable to produce ourselves, so you shouldn’t experience any side effects - the only time you would, would be if you are taking are higher dose than needed. You really need a referral to an Endocrinologist to have your cortisol tested so that they can then manage your treatment. Definitely don’t wean down below 5mg, as 5mg of pred is roughly the standard dose of hydrocortisone. The difference is hydrocortisone mimics more closely natural cortisol and is usually taken x3 daily. If you visit the Pituitary Foundation website you’ll find lots of really useful information on there and also the ADSHG website. Have you been issued with one of the Red Steroid cards?

DAsthmaD profile image
DAsthmaD in reply to Lottie007

Hi. I am on 5mg pred currently. I have been tested for AI and had a result of 59, apparently should be over 300. Have been referred to Endocrinologist, awaiting an appointment. Have gained 4 stone. Have fat stores on my neck and shoulders and stomach.

Personally, huge weight gain. I have lost 9kg since weaning off it. Inhalers were initial weight gain, then pred added to it. But PLEASE DON'T OBSESS about weight gain as this can save your life. Being able to breathe is wonderful, isn't it? When you can reduce, the weight will go - fluid retention & Appetite of a piggy for me was better than gasping for my next breath.

Thank you milkymumpkin it helps to know we are not alone with our weight gain. I'm afraid I am obsessed with my weight and have tried everything to lose it. Every joint hurts, I now have Osteoporosis from pred, fatigue from withdrawal and breathing is a struggle.

Please don't worry about your weight - there is not much you can do - but I hate myself as a fat bloater, so understand. Some doctors recommend a diuretic - ask your healthcare provider. I am desperately sorry about your breathing - do you have a chance to try a monoclonal antibody (a mub/mab). Have 2 goats milk yoghourts per day to for the osteoporosis (nice calcium), The pain is sometimes debilitating & it really makes me angry/frustrated too.

Please do consider getting your cortisol tested. As Floating said, AI is a life-threatening illness. The only way to cope with it is to take hydrocortisone daily. When you ask how those with AI get through it, unfortunately, that is the only way. I totally get it and hate being on steroids every day but I have had several crises in the past three years that have landed me in the hospital and I can attest this disease is extremely serious and more potentially fatal than asthma. There are some good threads on AI if you look them up in the archives-

re: AI, I wonder, statistically, what percentage of cases of tapering preds after N years results in "hospital-grade" AI. My (uneducated) guess is that we only hear about worst-case scenarios here.

I am currently trying to move 5>4 mg. 2 weeks, mixed experience, but my three asthma nurses say to "try and stick with it". They would not want to hurt me deliberately (I am hoping).

I think the only way to know is to check your cortisol. I do wonder too how many cases of tapering lead to AI.

If you are nauseous weak have pain in your legs feel especially irritable or confused or have low or high blood pressure, you are probably struggling with adrenal insufficiency. If you begin vomiting or having severe diarrhea get to the hospital asap as a 100 mg drip of HC can save your life. Our organs can't function without cortisol.

I'm not trying to be a bummer--I am in a separate AI support group and several people have died of crises since I've joined a few years ago.

I am shocked that not a single doctor ever warned me developing AI was a possibility after years and years of GPs pulmonologists etc. prescribing me pred courses for my attacks. Having AI has dramatically changed my life and is so much harder to manage than asthma in many ways.

Sigh! Bodies!

Yes, I agree. I tapered very carefully having experienced a minor crisis a few years ago - it taught me not to reduce too quickly & I should have known better being an ex-nurse/haematology based!!! But this is the first long period without pred in 14 years & with moving house (a year of stress basically) too, so I will promise you to take some pred if I feel really bad. My blood pressure is the best it's been for years - when I reduced too quickly, it dropped to 80/50 & I felt very weak, awful palpitations, so went up to previous dose & tapered again. No doctors help, like many on here - most just have no idea on tapering at all - a "specialist" allergist told me to just stop on 40mg per day - NO WAY PAL! I now am sorry I posted on here as I only have mild AI symptoms - was hoping others may have same. Everyone seriously lacking on the AI front get tested please & ignore my post. By the way, my subset of (eosinophilic) asthma can often be fatal if not treated with high dose pred & inhalers are completely useless. I would not have taken the Devils tic-tacs otherwise. I hate bloomin' asthma & thanks again, especially Hilary39, great advice

My endocrinologist gave me a prescription for an emergency steroid injection to have handy. I have been on lower doses prednisone for Polymyalgia rheumatica since 2015. Was down to 5 mgm when I reacted to the senior flu snot;Oct, big asthma exacerbation 4 days in hospital then decreasing from 40, 30, 20 but I could not go back to where I was.I had to start a slow taper all over again ; I take 10 mgm now. Retired nurse anesthetist here.

That’s too fast at those low doses; the recommendations are to lower no more than 10% at time and stay there at least 4 weeks.

The long terms side effects really concerns me - I wrote to my asthma clinic at Bury St Edmunds about this and they didn't reply. Utterly incompetent.

Ted007 profile image
Ted007 in reply to Dogeared

Just a note to confirm about West Suffolk. I saw 5/6 consultants there and was admitted a couple of times over a 4/5 year period. They were unable to diagnose me during that time and just continually prescribed prednisolone. Paid to go private at Royal Brompton and was diagnosed in 5 minutes using the blood results taken at West Suffolk. The Brompton consultant was dismayed at their incompetence!! I had eosinophilic asthma and now stable on a biologic.

Dogeared profile image
Dogeared in reply to Ted007

Wow, very concerning, but not surprising. When I questioned them about over-prescribing steroids the response I got was this: There are no circumstances in which we do not prescribe steroids. An unbelievable statement which is mindboggling - they could just close the clinic and put in a vending machine.

Thank you all for your help. Much appreciate the comments & advice. No doubt my adrenals are struggling to recover.

I am also on the pmrgca HU group and we are on steroids for Years. We taper to the lowest dose that controls the symptoms until the disease goes into remission. Once we’ve gotten to doses say, below I0mgm , dropping the dose less than 10% at a time is safer and more easily tolerated. Many in our group have indeed gotten off prednisone after many years but it is slooow. The adrenal glands have been suppressed by taking prednisone. Going through tapering is difficult because of the fatigue and there is a delicate balance with dosing but it has been done by many on that site. Even if you get off prednisone your adrenals will not be up to snuff for a year. It cannot be forced . There are many slow, nearly stopped, tapering schemes. I visit an endocrinologist and I am tapering 1/2 mgm every 5 weeks. I take 10mgm right now. She approves.

I have moved away from my asthma trigger - it won't come back. I only took high dose steroids in spring through to autumn, tapered off in winter. I wish I hadn't bothered posting on here - I was a moderator on a dog site for bone marrow failure/AIHA/IMHA am an ex-nurse/haematology & know exactly what is happening & have tapered accordingly. I wanted tips from others as to supplements/ways of coping with mild AI WITHOUT GOING BACK ON PRED. The side effects were completely awful, but I would have died without them. Now I want to live without them!!!! Unless I get a rare attack of course! Pred can be detected in tissue/blood system, even after 18 months, so I know it's a slow process.

Hello, can you please give me the reference to pred being present in tissue blood protein. That’s interesting. I thought the half life is much shorter.: hours.

Retired nurse anesthetist here.

Ooohh, that will take me time to find! It was an American athlete (I think runner) lass who was asthmatic & had a test 18 months after she completed the course. Half life is much shorter indeed, but olympic testing is not looking at that.

google.com/url?sa=t&source=...

xdoc.mx/documents/findings-...

Could you please advise me whether I should recommence pred for an upcoming colonoscopy. If so, start before ir afterwards if I get worse? As anaesthetist nurse, I would value your opinion. The doctor here in France gave a gallic shrug!

Unless the person was very ill or was having major surgery we did not give a steroid around minor procedures. You can mention it to the anesthetist sedating you; that person can give you some directly in the IV. I had a colonoscopy while on pred and took it a few hours earlier like a regular day. What dose are you on? You have a nice sleep with a colonoscopy.

Ummmmm.,.... nice sleep indeed! Only polyps previously. I am on cold turkey zero hence the question

If you. Are cold turkey than that’s worrisome. The prep is a stress.

I wasn’t aware you were asleep for a colonoscopy? I wasn’t!

I always was and I sedated thousands patients for colonoscopies . Its not general anesthesia; it’s called unconscious sedation.Sedation is there to relax the person so that the endoscopist can look without the patient squirming. If the patient moves too much it can cause perforation. I had one colonoscopy with very light sedation when they were first doing them and it was awful.

I agree about being awful with not enough sedation! I had gas and air and I would ask for unconscious sedation if I had to have another. But some people were fine and didn’t even use the gas and air. We’re all different!

Me neither!! 😬 but wasn’t too bad really… the embarrassment was far worse for me!Good Luck🤞

No I wasn’t embarrassed. No need to be embarrassed.

Lysistrata profile image
LysistrataAdministrator in reply to millymumpkin

I would be careful with colonoscopy - I haven't had one myself but my understanding is that the preparation can increase the risk of adrenal crisis if your adrenals aren't fully functioning yet, and you may need additional steroid cover. This may be helpful: pituitary.org.uk/media/5711... Not all healthcare professionals are very aware of or knowledgeable about adrenal problems I've found, so you need to be aware and assertive for yourself

Huge thanks - very useful & will take advice gladly

Thank you - very useful. Here in France, only under full sedation. I have polyps so go every 5 years. It's no big deal & everyone should get checked. This will be my first one on no pred, so I will be careful to point this out. Seriously folks, the worst bit is sitting on the loo all night, the procedure is not scary under full sedation!! And it could save you from getting cancer. No embarassment necessary

Also Hair samples, which makes perfect sense pubmed.ncbi.nlm.nih.gov/106...

Of course, everything seems to go Into the hair. In 2012 I became very ill with a internal hernia where I had a small bowel obstruction. I became toxic and actually was near death. I was given many medications : antibiotics, antifungals acid blockers and special IV feedings with proteins, vitamins and minerals. A few months later, obviously I recovered, I went to my hairdresser for color and, even though he used the exact same formula for years, my hair came out RED. I’m a brunette. Obviously, the assortment of medications,, got into my hair, interacted with the hair dye. .

Whatever, it looks like a year or so to recover from pred withdrawal & no supplements to cheat.

Lysistrata profile image
LysistrataAdministrator in reply to millymumpkin

Probably will vary by person including whether they need steroids for asthma or anything else. This is also for anyone else reading but: steroids if you need them (for asthma, adrenals or anything else) are not 'cheating' and if needed they should be taken. Supplements intended to replace steroids are not generally recommended at all as they can't replace steroids if you need them.

If the person takes steroid inhalers after stopping prednisone, indeed, some steroid will show in testing. A very small amount is absorbed systemically from inhaled asthma steroids in puffers.

They actually cause the same side effects as pred in higher doses, 80% steatosis, high blood pressure for many blah blah. Symbicort made me very ill.Did a bit of homework today on long term /muscle effects if you are still interested. My oldest friend just retired from Medical Research Cambridge & neither of us could remember original paper relating to corticosteroids in tissue, apart from it was muscle, possibly from our memoires, mitochondria therein. Did find these though: bmcmusculoskeletdisord.biom...

physio-pedia.com/Myopathy_S...

If you are still interested.

I just read the articles you posted. In one was a study of Polymyocitis patients who received prednisone for that disease. Incidentally , polymyositis is Not the same as polymyalgia rheumatica. It showed more muscle weakness in COPD patients with polymyocitis who received steroids than those without. The other post shows muscle weakness reverses with therapy and tapering the dose.

I couldn’t find where inhaled steroids show the same muscular effects as higher doses.

Sorry - I don't think inhalers have as bad effects as the catabolic pred on muscles, but they do have side effects. What I was trying to find for you was the detection of pred in muscle tissue after long periods. Anecdotally, I read anabolic steroids have a permanent effect on muscles & some vets use them for dogs who suffer huge muscle wasting scenarios on very high dose pred. Aggressiveness is side effect, same as humans.

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