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Date Posted: 17:50:08 09/15/07 Sat
Author: Anne (double sigh)
Subject: This is my story -have been off pred for 3 years now

Hi guys,

It sounds as if a lot of you are going through hell and have been through hell. I feel for each and every one of you. In fact I am absolutely delighted that I have been able to find a website like this one as I have been looking for quite a while.

I have been through absolute hell myself and am still going through it but it is much better.

This is my story. I hope that it may be able to help some of you.

I was on prednisone for ten years for Ulcerative Colitis. : <a rel=nofollow target=_blank href="http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/#treatment.">http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/#treatment.</a> In the end I told them to cut out my large intestine because I could not stand being on it anymore. I got what is called a j-pouch. <a rel=nofollow target=_blank href="http://www.j-pouch.org/Whatis.html.">http://www.j-pouch.org/Whatis.html.</a>

I was put on it when I was 20. I had just started to discover who I was as you do when you are 20 and then the prednisone took all that away. I try not to be self-scented when I think about this but it is very hard in a society that is so looks orientated to deal with the fact that you don't look good in photos anymore.

Thus I began the long and scary process of weaning off the prednisone.

It has been 3 years since I have been off it and this is what I went through.

The prednisone caused major swelling of the face and torso. As you all know you look a bit like a puffer fish when you are on it. I also had major psychotic mood swings on it. I would get hot and cold sweats on it. I felt like there was this pressure in my head and that I would go mad if I did not get off it. I also would twitch at times.

When I got off it the mood swings that I experienced were insane. If I did exercise I would go nuts and become very aggressive. My body did go down but my face did not.

After six months the mood swings started to get better. One side of my face went down. The other side refused to go down. I had one eye that would look at me in the mirror huge and strange. I used to call it my lazy eye. My torso went down but still was characterised by huge rolls of fat. Then the adrenal insufficiency started as my body tried to produce its own cortisone after being suppressed for so long. I could not keep food down. I would just throw it up. I was also be near fainting half the time. My gastroenterologist decided it was all in my head and basically abandoned me.

So I turned to a naturopath and she basically saved my life. She was very concerned about the fact that I was only 41 kilograms. She put on a vitamin, protein and mineral supplement plus huge amounts of Magnesium and fish oils plus acidophilous. What this did was to give my body the nutrients that it lacked as a result of the prednisone. Suddenly I was hungry again and could keep down food.

Over the next year every time I would feel sick I would take this supplement and the sickness would pass.

Eventually I worked out what was going on with my body. Every time I would have one of these episodes one side of my face would swell up and I would get water retention in my torso again, I would get twitching fits and I would get major mood swings. Then it would all go down and I would be left feeling sick and faint but I noticed each time that my face was going down with each episode.

This happened over a period of a year and each time the episodes would get less and less. I worked out that my body was trying to fix itself but to do that it had to go through the trauma that I had been experiencing.

After two years the right side of my face went down for the first time. I was still having the other symptoms but they were less and less.

The next problem that I experienced was major joint pain. I had stopped taking the fish oils and now I was in a bit of trouble. It took me six months to get my mobility back. I had to take 12 fish oils a day to stop the joint pain.

It has been 3 years now. In vain I look for support and find none. The doctors don't want to know. I have been trying to have a child with my partner but nothing is happening. I am only 33. Thus I have begun to do my own research in an attempt to try to find an answer.

I noticed that if I ate carbohydrates my body would swell up. I am assuming that this is because my insulin is all screwed up. As a result I hardly eat bread. I try to eat natural carbohydrates like fruit and veges. I try to stay off sugar. The magnesium seems to calm any feeling of sickness down. I highly recommend it.

I have started to take Vitex. It is a herb which is said to stimulate the pituatary gland (the gland which controls the hormonal system). It is supposed to balance out any hormonal imbalance. It is also said to get a woman pregnant. I have been on it for a week now. When I first started taking it, I had all the major mood swings and water retention of prednisone symptoms. I also became very sick and faint. I gathered that it was interacting with my hormonal system so I stayed on it.

The mood swings have stopped but the water retention in my torso area is very bad. I am assuming that I have to once more go through what I did before in order to fix the problem. Thus when I feel sick I just take supplements to get me through.

I do not recommend the Vitex unless you feel that your hormonal system can handle it and you have been off prednsione for a long time.

I feel that the prednisone took away my life. I feel that it was worse than the disease. If I had known a good naturopath before I was put on prednisone then probably I would never have had to go on it. For ten years my life just stopped. Socially I am about 24 but mentally I am about 60. This makes me feel very alone. Sometimes I just sit in the bath and look at my swollen torso and cry. I hate photos of me. Even though I look normal in the mirror now, my features still look weird in some photos. My hair is so thin it is hardly there. My joints still click and clack at times. I am afraid to do exercise because I don't want to upset them. Sometimes I curse the unfairness of my life. The only good thing that came out of this was my wonderful fiancee. I am very concerned that doctors prescribe prednisone for just about anything these days, that they put it in allergy medications, asthma medications and that most people don't even know that they are taking it. It is a terrible drug and yet it is touted as a wonder drug. There needs to be some sort of responsibility by the pharmaceutical companies for the lives that it is destroying. Prescriptions should be labelled and people should be made aware of what it will do to your body. There should also be support for people who are dealing with the adrenal insufficiency of being on prednisone.

The main problem after being on prednisone is the calcium insufficiency. Get on a calcium supplement to support your bones. Take magnesium as well because that will enable you to absorb the calcium. I highly recommend finding someone who knows how to support your body through this period of weaning.

Thanks for listening to me,

You can talk to me anytime,

My prayers and wishes are with you all,

Anne

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