Hi, I was diagnosed in 10/08 with Atisynthetase Syndrome. It is good to be able to talk to other people who have what I have. I am 33 years old. Since my diag. I have been on pred. and Imuran. It helps in most cases but recently have started to feel the effects of the tapering of the preds. The pred. caused me so many bad side effects when I was taking 60mg that I am eager to get off of them. I went throught the whole moon face, depression, weight loss, insomnia...I am glad that is all gone. Now I am dealing with hair thining. My dr. says that it is the proplonged use of prednisone and that as soon as I am off of it my problem should go away. I read that this could be a side effect to Imuran. Does anyone have any information or maybe has gone throught the same thing. Thanks.

Hello Daisyqc, I see that it's been some time since you posted on this site. I hope that things are going better for you now - are you taking less prednisone now? I have not had any really bad effects from prednisone (I took if for 4 years back in the 90's now I'm taking it again, touch wood all seems OK) As for the Imuran (Azathiaprine, I believe) I could not tolerate that as it did something to my blood count. I'm sorry I can't help you with the hair thining etc. as I've not experienced it, but (maybe that's because it may be the Imuran causing it) I wish you well and as you say it's good to talk to someone else with the same disease. Maybe you could "google" Imuran and see the side effects? Love Deaks

I, too, was have antisynthetase syndrojjn...starting in May 2009 I began taking predisone and increasing dosage to 60 mg and adding Imuran. I am now decreasing my predisone to 15 mg a day and have increased the Imuran to 150 mg. I had all the crazy symtoms of predisone- no sleep, nervous. Now my hair is thinning like yours. Did you ever find the cause and what did you do about it? At this rate I will be bald in no time. I would appreciate any help yo u can give me...Also I still experience muscle weakness. love, martha to daiseyqc or anyone that can help

Martha, I have been told that prednisone can cause hair changes (either loss or texture) and that it comes back when the dose decreases or you go off it. I have been on prednisone since July, starting at 80 mg, then down to 60 mg 6 weeks later and just now going down to 50 mg and adding 100mg of Imuran. My normally wavy, wild hair has gone flat, dull and lost it's usual wildness. Haven't noticed more falling out than usual. The prednisone gives me terrible muscle weakness and hand tremors (plus the lack of sleep, agitation, blister acne rash, etc). I am hoping that my muscle strength will improve as we slowly move down in dosage. Have only been on the Imuran the past week and hoping my side effect list doesn't grow! My main concern is just not picking up any viruses or bacterias from my young kids or from all the doctor's offices. Washing hands like crazy. Hope you find some answers and are doing better. Kelyl

martha1943, Sorry I have not been on the site for awhile. I was loosing a lot of hair and the doctor said that she thought it was the pred. and that it would go away as soon as we lowered dosage. It soon after stopped thinning but the texture has changed. I also still have muscle weakness and some aches and pains ever so often. I think that this is due to he weaning. I hope it does not get any worse. I started off wth 60mg in Oct. 08 and am down to 7mg. now.

Hello All... I am too experiencing hair thinning as well. I was just diagnosed last month but have been on prednizone since February. Currently I am on 80 mg of prednizone and 125 mg of cytoxin (sp?). I could not tolerate Imuran. I have extremley thick hair and now it is thin and I have noticed some falling out. Prednizone is a good drug but sure can be nasty for side effects. I have a huge moon face, can't sleep to the point of exhaustion, my heart races all the time and let's not even talk about the depression it causes. I am going to Mayo in 2 weeks for a full evaluation so wish me luck!

Dear all, Thank all of you so much for responding to my worry about the thinning of my hair....Hopefully that will subside since I am now down to 15mg a day.(Imuran 150mg). I still have the moon face, tired muscles and some depression. One of my doctors seems to think that the Imuran may be the culprit on the thinning of my hair...the consenses is that it wil come back...(I also have periods of nervousness and sometimes feel like a bull in a china closet!! Are any of you doing anything to improve the hair thinning? (Also my skin is real thin, so if I barely hit it, it bleeds and is slow to heal!! crazy syndrone!! good luck at Mayo's and please report to us.. thanks

As far as the thinning hair my doctor recommended the Rogain for women shampoo. I used it a couple of times but like I said it did not last that long so I don't know if it was the shampoo that helped. I also had very bad depression, moonface and insomnia. All of this went away as soon as they started to wean me off. My face still does not look normal but I do not know that ever will. It is not as bad as before. I have just gotten use to it. I am very suprised to hear that so many people are not able to tolerate Imuran and I have not had any problems at all. I don't even know if it is helping. I think it is all still the pred.

Very surprised to hear muscle weakness associated with high (e.g. 60 mg.) doses of Prednisone, since my muscles were getting weaker and weaker for four months prior to starting at 60 mg. in early July, after which my 'CK' levels dropped dramatically and just as dramatically the growing weakness was blunted and now a month later, reversed. I can reach up to put a shower curtain hanger back on the rod! That had become out of the question. I think the muscle weakness was purely the anti-synthetase and the Prednisone arrested it. But sleeplessness is a constant -- together with a sort of manic, frantic over-eagerness to keep doing things, and an irritable impatience only saints ought to be asked to tolerate, certainly not wives like my understanding mate of almost forty-five years!