I am new to this site. I am looking for some experiences, comments, and advise from others. I am 39 and have had Lupus since the age of 16, double hip replacements at the age of 18 I have ben through almost everything.

This latest flare has been going on for over a year. In this time I have been on 30 mg of Steroids, plaquenil, relafen. These are not holding my disease or symptoms, and I am just gaining TONS of weight, now prediabetic, and suffering the usual bad side effects. My doctor wants me to start Imuran. After reading about this drug I am terrified. I think to myself as bad as my quality of life is I must be crazy to try a drug that is going to make me lose my hair, possibly cause cancer, and take my fertility.

I am having a very hard time and stressing much over this decision. I want to have a family before it's too late. Please anyone if you have been on this drug please share your experience honestly with me. Please respond by email as well if possible at Lupusgal68@aol.com

Thank you so much. Be well and Safe

Pam A very worried Lupusgal68

Only you and your doctor will know whats best for you. I recommend you have a doctor you trust esspecially when you are talking about taking medication as scarry as this. Then remember that the manufacture of the drug have to inform you of ALL of the side effects. Its not to say that you wont have a problem at all with it but it also isnt any guarantee that you will have an issue from it either. I had to try 2 others before I found one that is finally working for me. I never had the huge effects stated in the warnings and it didnt take me too terribly long to realize it wasnt going to work for me either. I think I lasted 3 months on one of the drugs and ended up feeling sick and then started throwing up, I did that and when I went to the doctors he did lab work and right away was able to tell that the medication was too much for my liver for whatever reason. I went off of it and now I am on another one and I am doing pretty good.

Likew you when I first learned of the side effects I wondered if it was even worth it at all. This is why it is so vital that you have a good relationship with your doctor. Trust them and be sure to ask all of the questions you can.

You also said something about the weight gain. I know for me and another friend of mine the steroids can be a huge factor in that. I finally had to put my foot down and refuse to be on the steroids. The weight gain was causing me to hurt and have health issues that were worse than not being on them at all. Needless to say I havent been on them in almost 7 years and I am happier for that. I cant stress it enough though, this is something you should discuss with your doctor. Maybe the alternatives would be better.

I wish you all the luck. Keep us updated on how you are doing. Are you on the medication yet?

I have been on Imuran for 8 years now. It is causing me to have a lot of skin cancers which is related to taking the Imuran. I told my doctor I was worried about what other kinds of cancer it was causing. He just told me that if I wanted to be better now, I was to continue on the medication. I am very worried about taking it too. I am suppose to get my blood work done every month and had been doing that for the past 5 years, which I hate, and now I have a new doctor (not by choice) that hasn't checked my blood for four months now. Go figure what that is all about. They do want to monitor your liver while taking Imuran. Good luck and I hope I have helped some.

Martha

I've been on Imuran since 2000 and so far, so good.

Beth

Eva