Myasthenia Gravis News Forums › Forums › Healthcare and Treatments › Long-term prednisone side-effects
Tagged: living with MG, mg treatment, prednisone
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Long-term prednisone side-effects
Posted by Jodi Enders on August 7, 2024 at 6:45 amHave you been on prednisone for a while? Have you noticed side effects affecting or causing any of the following:
- eyes
- water retention
- high blood sugar
- induced diabetes
- infections
- bones
- skin?
John replied 5 months ago 18 Members · 21 Replies -
21 Replies
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Skin definitely. eyes water . weight gain. nothing else really
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Weight gain. And extra weight gain with Vyvgart tooooo. Bruised skin. Osteoporosis. Teeth chipping. Ugh
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After an MG flare, my Neuro started prednisone at 20mg and continued to up the dose as it was not having any effect (Mestinon reduced but did not eliminate symptoms) until it hit 80mg daily a year later. I had 2 PEs, a TIA, major cataracts, my A1C spiked well into diabetic territory, my weight ballooned, and I developed ape jowls. I switched Neuros and he immediately began tapering prednisone and put me on Cellcept. 1 1/2 years later, I still take Cellcept but am off all other MG meds and am symptom free with my A1C and weight back to perfectly normal.
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I now have osteoperosis, pre-diabetes, steroid induced cataracts, bleeding under the skin, water retention, weight gain, diarrhea, bowel issues, mood swings, depression, insomnia…….i’ve been on this while begging my dr to find something else..for 10 years. It is literally destroying my body.
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Are you also taking. Mestinon? I’m lowering from 20mg Prednisone to 10mg, no problem, also taking Huperzine A supplement, very helpful.
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I’m 54 yrs old and was diagnosed in 2017. I’ve been on a maintenance dose of 20mgs prednisone for @5 yrs. In the those 5yrs, I have developed osteopenia with some slight bone loss, glaucoma and cataracts and have had weight gain, steroid moon face, under skin bleeding, insomnia, and mood effects. I also have been been wanting to get off this but neurologists so far have not been interested in trying other treatments.
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I started on Prednisolone, (the British equivalent of Prednisone), in June 2023 because of throat problems in swallowing. I gradually increased the amount up to 15mg a day in November which solved the throat problem and so from this point I began to reduce the dose, finally coming off them this July 2024.
The effects of the steroid were numerous: increased blood pressure causing a stroke, thinning and peeling of the skin causing slow healing sores on legs and arms, thick grey sideburns (very embarrassing for a woman), bleeding mouth ulcers, over salivation, weight gain and other undesirable effects.
I had had excellent health up to that point never having needed any drugs except antibiotics after hip operations. I had never experienced any of these effects previous to starting on the steroids. As I reduced the dose these symptoms gradually disappeared. Now, a year later I am finally off the steroids and hope never to have to go on them again. But my neurologists has said that if the symptoms of paralysis of the throat return I shall have to start all over again.
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Weight gain, skin, initially stomach issues, water retention . No cataracts or bone loss.
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My main side effect has been spontaneous bruising on my hands and arms.
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Yes as I have had two different times on high doses of prednisone. I have cataracts and high blood sugars. I also have some skin issues and Cush type lumps on arms and legs in not typical areas. Those have reduced but still have a few as I’m post prednisone 3 years. However it saved me as I have Musk MG and those issues are being addressed and fixed.
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I’ve been on a roller coaster regiment of prednisone for 4 years, depending on the state of my MG. The only side effects that I’m aware of is skin bruising and some arthritis. My skin is “fryable “ I just bump a hard object and I’m an instant Barney. Hands, forearms and shins. I’m down to 4.5mg per day now and skin is getting better. No weight gain because I exercise 3-4 times a week and weigh myself everyday!
Very sorry to read about all the issues !
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I have been on prednisone for approximately 40(yes 40 years) it saved my life. I have tried other treatments but nothing else seems to work. Yes, I am one of those who have multiple diseases.
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I have lived with Prednisone for over 20 years, and the impact has been huge. My joints, eyes, aches are worsening year on year. I’m no good however without them, as I drop dosage, my eye closes, fatigue worsens, chewing and swallowing become difficult and breathing weakens.
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<div>I’ll start by saying that prednisolone is a wonder drug for suppression of MG, even if it is only partially effective for me and does not provide me with a state of remission.</div>
Eyes – cateracts in both eyes, I had cataract surgery and now have 20:20 vision for the first time in my life. This is the only partial plus.
Bones – I’ve developed extreme osteoporosis in my back that has included 2 spontaneous broken vertebrae before we realized the osteoporosis was so advanced.
Skin – like others have said, skin is wafer thin, bruises easily, and DRY.
Tendons – you have to work extra hard to keep muscles and stretched and limber. I’ve had quad tendon tears in both legs and my left elbow
Induced diabetes – yep.
Elevated BP / weight gain – for me, no.
After 10 years, we have tried everything and have never been able to get below 18mg/day of prednisolone combined with Apheresis, Soliris infusion, lots of Mestinon, vitamins, and all the other medicines needed to treat the secondary issues.
So as it turns out, I can’t live without it but it is hard to live with it too!
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Yes, I can’t seem to live without prednisone, I am so grateful to be alive. I haven’t found a medication that works for me other than prednisone. Tried immuran,solirais. Not looking at anything else right now. New doctor in July.
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Eyes water quite a bit and skin definitely rash etc. Otherwise no issues after 5 years
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Ken, you mention rash. I have developed a skin rash on my palms first and then my feet and it’s called Dyshidrotic Eczema, rather nasty and creams are not working. I first thought it could be a side effect of IVIG as had huge doses the last few months basically because Vyvgart had brought my igg levels to a dangerous low level, now I’m wondering if this is MG related? I dont know?
Anyone?
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Ive been on prednisone since 2018. Highest dose 20 mg, then down to 10 then have been at 7, 6.5,6. Trying to stabalize at 6.
I currently have 2 fractured metatarsals, 2023 had 1, 2022 had 2. OMG they are so very painful. I must get off. Ironically my bone density test is good, very good.
Have any of you had treatment for osteoporosis and had positive rebuilding results? Did you take pills or injections?
I hope it can be reversed!
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