We need to make a submission to NICE about the new alternative to steroids - AVACOPAN.
Please can you tell me in replies, if you have experienced any serious side effects from taking prednisolone.
Eg diabetes, weight gain, cataracts, muscle wasting, cushings, osteoporosis
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Hi,Side effects of long term prednisolone for me has been weight gain (around 40kg), the dreaded moon face and fat distribution to abdomen and neck areas, increased sugar levels (being monitored, no intervention required) mood changes/irritable more than I normal would have been.
My side effects included early menopause, and now bone loss and osteoporosis. I am in my 40s. I have cataracts. Weight went from 145 lbs to 210. Now that I am back down to 5 mgs, my weight is back to 160 lbs.Fatigue, malaise, depression, anxiety.
The moon face was quite terrible, and now the jowls that remain are ugly. Fat back of neck, big around the middle.
I'm sure there's more I should be attributing to prednisone. I have adrenal insufficiency now, so I may have to take a small dose the rest of my life.
This is not a drug I would wish for anyone to take more than a few days. There was no alternative for my vasculitis and I know this drug has changed the course of my life as mush as the vasculitis.
Thanks John.
I'm going to add to mine the increased blood sugar levels. I took a diabetes pill until I got lower on the steroid and now I don't appear to need it anymore. Plus the snappy grumpy side of me came out more than I could control.
What an ugly med we all have to deal with.
On prednisolone for 16 years now always been a size 6/8 and now up to a sz 14, have early onset cataracts and muscle wasting
Interestingly after stopping Prednisolone in December and getting the Pfizer vaccine in both December and January I experienced a hormonal imbalance which resulted in Gynaecomastia with raised FSH, LH and Prolactin levels. Endocrinology dept. arranged an MRI on my pituitary gland and also an U/S of the testes both of which came back as normal.
My personal thoughts are that with the cessation of Prednisolone the Adrenal glands which produce cortisol were not quite ready ( 9 years of use) and that set off the chain of events. By having the Covid vaccine at the same time may have attributed to the current condition but there is currently no research available in that respect.
Neurology was concerned that with Gynaecomastia and Neuropathy it could indicate POEMS syndrome however recent EMG tests indicated otherwise. So the mystery deepens.
Hello John. My prednisolone side effects: skin thinning leading to pressure sores, skin that bruises and bleeds very easily, and steroid-induced cataracts in both eyes (causing severely reduced vision until operated on). I started on high dose on diagnosis in Dec. 18, and am now down to 5mg/day. Thank you.
Prednisolone causes me so many problems I cannot take it, except as an urgent very short term measure when my vasculitis causes scleritis. I have to put up with constant flaring which means I’m in touch with my specialist team and/or GP at least once a month and often more. The most serious issue is that it gives me psychosis: I start being manic from 10mg and over 30mg become delusional and suicidal. In addition to that it has given me glaucoma, cataracts and musculoskeletal damage which took a lot of physio to sort out. I have stomach damage despite taking protective drugs so I have a major issue with gastro-oesophageal reflux disease. I aspirate my reflux so am very vulnerable to respiratory infection. I have two thoracic vertebral crush fractures too. I’m not sure if my hypertension is also caused by prednisolone - it is not quite clear. I did put on lots of weight but have now lost it all. An alternative to prednisolone is desperately needed.
I had cushings syndrome, weight gain and now have adrenal insufficiency and osteoporosis also taking omeprazole re nausea as a result of taking prednisolone long term.I am also having a curve test in a few months, which monitors uptake of prednisolone over a day, as my body may not assimalate pred as I have nausea and other symptoms. Hopefully the results will be normal.
I have taken corticosteroids for over 12 years - I had gained weight generally prior to diagnosis and starting pred but the weight then moved to the usual places. Other than that I had no problems until being switched from prednisolone to methyl prednisolone. That resulted in weight gain, severe muscle wasting, developing a Cushingoid habitus and growing a delightful black beard! It was awful. On switching to prednisone in the form of Lodotra all these effects resolved and you can now not tell I am on pred. I do have bruising but also take a NOAC so that possibly contributes to the cause. I have no change in bone density despite not having taken bisphosphonates and there is no sign of cataracts.
My husband put on 6.5stone when put on 60mg of prednisolone 3 years ago. He had moon face, stomach problems, fatigue, but had no choice but to take them. He is now on 2mg per day, has lost over half of his weight gain by dieting and has lost the moon face.
Gained 4st in weight despite a very restrictive diet. Fat distribution- fatty lump on neck and very big around middle. Insomnia
Mood swings
Bruise easily
Facial hair but head hair thinning
Dry skin
Tired but too wired to sleep
Muscle cramps
Involuntary twitching.
It helped save my life but I’m paying a considerable price.
Ciaomario I suffer slot with these.I have just been put back to 30mgnot only do I want to eat for England, my most frightening side effect is on my mental health,2week in and I am a mess, waiting to be put under the mental health them.What I meant to do ,GP says what choice do I have.life is not a happy place.
My side effects of Pred have been major weight gain (about 3 stone), pre diabetes (hba1c is currently being monitored), edema in ankles & calfs. The steroid moonface & jowls, very dry skin & hair thinning on head but excess hair growth on face, milia on face, fat hump on shoulders & around stomach. Thinning of the skin, constant fungal infections, horrendous mood swings.
There was some weight gain but not excessive and a slightly moonface. Probably some muscle weakness in the arms - I do a lot of walking so did not really notice any change there. I believe the biggest issue was steroid induced cataracts - these developed very quickly, within 2 years, and seriously affected my vision. Curiously, despite a large change in my spectacle prescription, the optician was not able to see them, or what was wrong. Fortunately I was referred to an expert who diagnosed, then fixed the issue - a side effect is that this is the best cure for shortsightedness ever (if a bit extreme!).
Started with Glaucoma and now early onset cataracts. Got moon face and shoulder fat which went on reduction but cannot shift fat around middle. Poor muscle tone and thinning skin. Poor sleep and fatigue.
At dose above 20mg had really tough sideeffects. Weight gain, blood sugar problems, cushings, dramatic muscle loss and definite impact on mood as well. My mental health also is substantially impacted by knowing that if I have a flare in the future I will have to up my pred dose above the 20mg threshold.
High dose prednisolone, caused huge weight gain, aching muscles and joints. Mood swings, irritability. Sleep disturbance, bone & muscle deterioration, malaise, fatigue. The list is endless and a horrible time. Thankfully I’m in remission but damage has been done 😢
Steroids have given me heart palpitations at high levels and insomnia. I have had weight gain and subsequently become obsessed with counting calories to not put on any more weight. I also have had moon face and my skin is really thin. My skin ends up breaking very easily. I cannot get below 5mg.
For me prednisolone has caused face and neck swelling. Weight gain. Osteoporosis in spine and osteopenia in hips on dextran scan. Have fractured my ribs on left side x2 after 18 months of doses between 50mg and 20mg. Can’t get below this without flaring. Insomnia!
Where to start? I’m now a potato person with blobby body and stick thin arms and legs. As well as a round face and buffalo hump.My skin is dreadful, so fragile. At the moment I have two large plasters and a tube grip on. One from catching my wrist on my phone, one on my elbow from catching the edge of a shelf in the food cupboard and one from dropping something on my calf. I’ve only just recovered from the skin split caused when my daughters dog bumped the other calf. That was an A and E job.
Cataracts took only two years to develop and have been the least of my worries. It’s more the day to day problems of shaky hands, uncertain temper, weight gain, adrenal insufficiency, fatigue, finding clothes that can cope, etc. And the general feeling that I cannot do the things that my contemporaries are doing.
And thats all before we start on shielding, COVID etc
Hi,Side effects for me include:
Weight gain and the worry of what that is doing to my health.
Cataracts in both eyes within two years.
Irritability, mood swings even though only on 5mg.
Depression mainly relating to the weight gain.
Thin skin - bruise easily.
“Fragile bones” according to a GP at my practice.
Fatigue and poor sleep.
I’m aware they saved my life but oh what a price to pay.
Hi John, after 11 years I have a full set! Diabetes, cataracts, weight gain, and some muscle wastage now, made worse by shielding 😢 So far my dexa scan is ok but due again in November. Hope
This is helpful Mary
Hi John, I have been on prednisone for 14 years and have various side effects. Cataracts in both eyes and osteoarthritis in hips and knees. Teeth have also been affected . Weight gain and mood changes have been particularly bad. Muscle wasting seems to be the latest delight!
I was diagnosed with Vasculitis in 2007 (mpa) and but had already had symptoms since 1998. I started on prednisolone soon after diagnosis. Now on 2.5mg. and have been on tapering doses ever since. I have always put all the symptoms down to the disease but perhaps some are due to pred. I gradually put on 14 kgs. which I have been unable to shed. arthritic knees and considerable migrating joint and muscle pain. Muscle weakness especially in my legs, neuropathy. Thin skin, developing cataracts. Fatigue and feeling unwell after exercise. Breathlessness from lung damage. Atrial fibrillation leading to pacemaker and a.v. Node ablation. It is a gradual loss of quality of life. I have been on rituximab once or twice a year since 2014. I am becoming ever more immobile as exercise makes me feel exhausted and weak so I am deconditioned too. If all this is even in part due to pred, an alternative could be very helpful.
Hi John been off Prednisolone for 7 weeks after 18 months. Started at 60mg and tapered down but fluctuated after 2 flares. Weight gain about 10kg and no moon face (down to Keto Plan) knew what I was getting into and researched and planned. Guess I am one of the lucky ones. Reading everybody’s experiences brings tears to my eyes. Take care everybody.
Hiya my side affects were moon face ,excessive weight gain ,thinning skin and hair. Weakend bones , mood swings
High ocular pressures (now borderline glaucoma), weight gain, increased blood sugar levels (now pre diabetic). I was taken off prednisolone after 18 months and told everything would return to normal but 2.5 years later still hasn’t and I’ve remained 1 stone heavier. It also effected my bone density which is also now being treated
Prednisone- weight gain, anxiety, sugar levels are higher, lack of sleep, mood swings, cataracts, fat on legs and back increased, rounder face. I take but d and calcium tablets, I also take boron in an attempt to stop some other effects of steroids.
I have been on methyl prednisolone then prednisolone for 5 years or so as part of the treatment for my GPA. Started with high IV doses then onto 85mg per day and gradual reduction as symptoms allowed.
Have had all of the side effects that you list: diabetes requiring insulin injections daily, weight gain approx 3 to 4 stones, bit lateral cataracts so rapid and bad they needed surgery to correct, muscle wasting, cushings, osteoporosis, mood swings and irritability.
Also I think worth noting regarding steroids is how difficult it can be for a lot of people to cope with reducing the dose. We are all given a tapering down schedule by our doctors but everyone is different in how they cope with it. Some cannot get off of these drugs at all as their body can’t produce sufficient cortisol.
While in the case of my condition they were very effective drugs at treating the life threatening inflammation, they are also, due to the side effects, a ‘deal with the devil’ as one hospital consultant put it.
Hi John I echo the above comments but also suffered with paranoia as well, so had to taper and stop. Not good when trying to work as a psychiatric nurse. Professionally I have also witnessed an increase in steroid-induced mania, resulting in lengthy hospital admissions some requiring treatment under the mental health act.
Hi John, I developed cushings and ballooned to a size 18 from a size 10. I later developed diabetes which in turn has caused peripheral vascular disease.
I started on 15 mg prednislone in August 2020; side effects include muscle wasting/weakness, initially insomnia, large accumulation of fat around waist, huge fatigue, stomach cramps, some mood change, forgetfulness , but only about 5lb weight gain. I am now down to 4mg, and on reading the replies from others, I think I have got off quite lightly! So far...
Moon face and neck hump, three double chins, abdominal fat. Diabetes type 11. Last relapse had to have four Metformin, now HbA1c 42 as tapering.
Cataracts present before quickly worsening, cataract op in two weeks.
Easy bruising and skin discolouration.
Hair loss
I have taken predisolone on and off for the past nine years. My biggest side effect was to have cataracts grow quite rapidly. I also had some hair loss. I now have some osteopenia.
My side effects have been weight gain, which took me 3years to lose while on low dose pred. I have a moon face, hump on my neck and larger calfs. When on a higher dose I have more trouble sleeping and get very jittery.
ANCA Vasculitis diagnosed 2014 - Moon face - Severe muscle loss and weakness - Fatigue - Dry skin with breakages and bruising - Facial hair - Osteopenia - Hair loss and thinning (scalp) - Significant Cataracts in both eyes resulting in a cataract and intraocular lens implantation op in both - Contributed towards Diabetes T2d.
Having read all the above, I must be very lucky!
My prednisolone side effects are skin thinning leading to pressure sores, skin that bruises and bleeds very easily, and the early stages of steroid-induced cataracts in both eyes. General tiredness, and poor sleep pattern. Now down to 6mg/day.
On Pred for about3yrs. Had cataracts in both eyes very early on and had to go through what was trauma to have new lenses. Also angry and emotional mood swings plus unable to sleep hardly at all. Highly stressful time in the midst of trying to get into remission with Gpa. Also on top of this had to manage the effects of other ‘heavy duty’ medications. All in all not something not easily forgotten and have no wish to repeat.
Compared to many on here I’ve only been on non-enteric Prednisone since June 2019 and was started at 80mg/d reduced after 2 days to 60mg/d and then reduction every 4 wks starting with 10mg.
Serious is subjective but I’ll let you decide:
Slight elevation in Blood Pressure after approximately 6 month, averaging 145/85 on the minimum daily dose of Metoprolol Succinate ER and now its holding around 130/70. No side affects from this med.
Around the same time was diagnosed with ocular hypertension. Reading 31/23 L/R respectively, no damage to the eye. Managed with 1 drop every 12 hr to the left eye of Timolol maleate 0.5%. No adverse reactions to this med either. Most recent office visit shows my pressure at 21/18 Pred dose 2.75mg/d Optometrist plans on stopping the prescription in Nov 2021 if pressure same or less.
October 2019 diagnosed via DEXA scan with just on the cusp of Osteopenia. No meds prescribed, self treating with Ca, D3, & K2. Next DEXA scan is October 2021.
These are the only side effects associated to Prednisone as a result of PMR.
Preexisting conditions were/are: GERD, and
Hypercholesterolemia for which I’m taking Omeprazole 40mg/2x per day for 20+ years and a statin (different ones of the years) since been on Pred my doctor switched me to Rosuvastatin 20mg/d.
Would it perhaps be appropriate for you also to ask for responses from people who have NOT had ]serious' side-effects from pred? I suppose there may be none - and if there are any, I guess they would probably not be members of this forum!
I haven’t had serious side effects from Pred. I’m on 8mgs after 4 years and have had the usual easy bruising and plumpish face. I’ve been able to walk everyday and do some very gentle yoga to keep muscle tone. I do get tired so rest and my sleep patterns aren’t great. But I have a life enabled by Pred so I view it as my friend! X
Hello John, Yes I have experienced side effects from prednisolone, including: Moon face/Cushings, neck / jowel puffiness , weight gain, cataract (1 corrected), pre- diabetes, blood clot (CT scan conf.), sleep probs, fatigue, bone loss (not diagnosed with osteoporosis yet), muscle weakness /wastage, moodiness lack concentration. Linda
on 60 mg pred since mid June, now just reduced to 25 mg but had moon face and abdomen fat after about three weeks; skin is now very thin and splitting on my feet - bleeding; insomnia and very hyper, significant bruising, shakiness and muscle weakness; no idea yet if there is anything else going on e.g. worsening of existing osteoporosis (waiting for DEXA) and waiting for eye appointments. Very worried that HBAc1 level is at prediabetes level particularly given that I am following a low carb diet and exercising.
I have steroid induced diabetes, and am having to take medication for that. I also have increased blood pressure. The weight gain around my neck really really gets me down. I am also suffering terribly from fatigue now I am reducing steroids (was on 60mg, now down to 17.5mg)
Hi John,
I’ve been on Prednisolone for over 14 years. Currently taking 10mg, have been told by Specialist that I will be on them for life for PMR and GCA.
Side effects.. Steroid induced cataracts, steroid induced diabetes. Fluid retention; gastrointestinal discomfort; headache; SVT’s. Skin rashes, chronic insomnia. Moon face, thin skin which bruises very easily. Very little hair on my head and none on my body. Weight gain increased by 6 stone, managed to lose 5 stone following low carb macro diet. Very limited mobility due to osteoarthritis. However, I’m still here and doing my best to enjoy my life each and every day. Best wishes.
Moonface weight gain cataracts.
Yes, plenty. I was on long term (over 7 years twice and short term high dosages) Relentless insomnia lasting many years, extra need to eat more, swollen face, border line diabetes (had to watch my food very carefully), enlarging fibroids (major issue despite menopause) , cataracts, tinnitus, bone loss (shrank in heights and also bone density), thinning hair/skin and bruising of skin, difficulty in controlling emotion and heart palpitation. So many. It saves lives but also destroys so much. If Avacopan can replace the need without so much damage, our lives would improve so much. Fingers crossed.
I have glaucoma which I'm told is probably to due taking steroids over a long period of time.I was diagnosed in 2005 with GPA and have been on varying doses of prednisolone ever since.
I now need to take 5mg of prednisolone for life.
I know very little about the alternative drug but if it has less side effects it's got to be a good thing.
I was on prednisone for 9 months in 2014-2015, beginning with 80mg for 2 days, then 60mg, then 40, 30,20, & eventually tapering off in mid-February 2015. I had the moon face (least of my problems), heart palpitations, thinning skin, bruised easily, muscle wasting (quadriceps & hamstrings), osteoporosis, spinal fracture, shoulder bone necrosis, & emergency inguinal hernia surgery that the doctors determined was a result of the prednisone. The muscle wasting, osteoporosis, thin skin, & bruising are still with me & my body has really suffered from the surgeries necessitated by the back fracture & shoulder necrosis. I’ve been in remission from Vasculitis for 5 years & only pray I never have a flare necessitating the use of prednisone again.
Weight gain on the top half of the body and stomach. Cataracts. Steroid induced borderline diabetes. Persistent infections nasal, eye and UTIs. Insomnia, mood swings. Moon face, buffalo hump. Hair loss. Adrenal deficiency at 5 mgs. Increased appetite and sugar cravings. Hypertension.
I have adrenal insufficiency, also facial hair growth and dry, flaky skin all over my body - all a direct outcome of prolonged steroid use.
I have tried twice to lower my 7 mgs a day steroid but found it impossible. I have recently been advised, by my consultant, to again try to lower the dose. This time I am attempting to do so VERY slowly.
I am less sure of the cause of the following diagnoses....
Type 2 diabetes which is well controlled by diet.
Osteopaenia.
My headaches are gradually getting worse and I am under investigation for this. Again, the question is - what is the cause? Since childhood I have been 'headachy' and my father was a migraine sufferer so it may be inherited.
The optician is keeping an eye on the slow development of cataracts in both my eyes. He thinks the cause may be age related as I am over 70 years old.
I have been on steroids since October 2020 with PMR. I have developed Cataracts which have come quickly this year. They are due to be removed in October.
Thank you everyone - we have sufficient response and now have to collate the information as part of our submission.John
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