I have been on prednisolone for the last 20 years withou...

Hi

I have been taking prednisolone regularly for over 4 years as I have Sjorgren's Syndrome (an autoimmune disease) I already had osteoperosis when I started taking them, the disease worsens if I reduce the dosage to less than 10mgs per day. I am having drug treatment for the osteoperosis. How long had you been taking steroids before you became disabled?

Sue Richards

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I know exactly how you feel - I have been on 25mg a day tabs of Prednisolone for the last 6 months and another 6 months two years ago for Alopecia Areata - i've only recently learnt from internet research how damaging Prednisolone can be.

I suffer from moon face, weight redistribution, intense hot flushes and sweating, intermittent hypertension, intermittent muscle weakness, and vertigo. I have many things running in my family such as type 2 diabetes, glaucoma, rheumatoid arthritis, SLE, and a whole bunch of other stuff which can be risky with the medication.

The doctor tests my blood at regular intervals so it *appears* ok on that front, but who knows what sort of damage i've done to my body come future years. I'm only 20.

It really makes me wonder whether the treatment is worth it. I coulds have regrown my hair without the prednisolone for all I know, but even if I couldn't have, the future negatives may outweigh whatever positives I may have gained now.

Prednisolone is a horrible drug.

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I have been on prednisolone for the last twelve years on and off for brittle asthma. At first it was wonderful and inproved my life so much. After being off work for 5 years I was able to return. I am now starting to notice terrible mood swings when I am on it and very disturbed sleep. Now I am back to working full time I find this all very difficult to deal with. Having had so much time off work with asthma I dont want time off because of the side effects. I also want to get on with my life and not dwell on negative issues but I am struggling at the moment.

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Hi my names dawn i'm 30 and like you i have been on pred for along time since i was 13 and have loads of side effects ihave had both of my hips replaced i have osteoperosis and i have gained loads of weight have muscle weakness mood swings do not sleep very well as in constant pain like you always back and forth to docs or and e for one thing or another. If you want to get in touch thats fine hope you are ok best wishes dawn

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Hi, I was put on prednisolone at the age of 12 at doses that would never be prescribed now. I stayed on them until the age of 20 when I decided that I would come off them by myself. It was quite scary as I had had to stay in hospital up to 6 times per year.

First thing I discovered was that all the milk I was drinking to alleviate calcium depletion from my bones was making my asthma worst. So I cut out dairy produce which was not easy, with the exception of butter on toast. Dairy is one of the worst things for asthma but you must replace it with something else for the vitamins you lose. My thyroid was then removed - too quickly in my opinion as steroids can also affect this and I remained hypothyroid.

Deciding to take my own destiny in my hands, I went to the homoeopathic hospital in glasgow, where for the first time in years, I had quality of life. Then I took up tai chi and had so much energy and felt well. I avoided smokers, didn't go to pubs etc and banned it from my own home. Kept pets and developed resistance to pet hair for the first time in my life. Stopped taking antibiotics and replaced them with natural products, including ginger, garlic, onions and supplements. Have only recently taken antibiotics for the first time in 10 years - for cellulitis, so there is no choice.

The side-effects of prednisolone are frightening and many are not talked about, including increased libido and depression. However, had I not taken them I would have died.

Now I take seretide 500 - and for the first time in my life, I am free of Ventolin. I have always rinsed my mouth carefully after inhalers, which is necessary.

My health isn't perfect, but I have done many things that I thought that I would never be able to.

Staying optimistic and living life to the full (within your limits) is something that will make you feel better.

Hope this helps.

Hi ive been.on 25-40mg of pred for over 13 years and im only 30 :-(

Please don't apologise. Have you been offered something else instead of preds?

hi

I have been on prednisone for 20 years as well. I am 50 now. Just recently, these doctors are crying oh its too risky. but for the last 18 years its been fine. Without the steroids, I am completely miserable and practically immobile. they take ALL of my symptoms away so that I can work and live. These docs just don't get it, and they haven't even tried to give me an alternative. They really haven't figured out what is wrong with me because my baseline tests are all fine they say, I'm not sick. I feel your pain friend. The only side affect I have had from these steroids is my teeth, it has destroyed them but thats all.

my 86 years old grandma does not accept to take preds even though she can barely walk without any pain. no steriod meds she said for her. so end up taking her everywhere on her wheel chair. every. where.