I am 29. I was diagnosed in sept 2011. I started on Imuran about 4 weeks ago, after a week I was sick in the morning for about an hoir each morning. ( I could handle that) Now it last almost all day feelingsick to my stomach and very loose bowels. Also my whole body aches like I have a flu. Please any suggestions will be great. I am sick of this. Oh and I also have the lung involvement and I keep doing this involuntary thing where it sounds like im gasping for air but I dont feel short of breath??? Does anyone else do this?

Hi Christy. I was also diagnosed in Sept 2011. I have the polymyositits and full lung involvement. The imuran could be the problem. You would not be sure though unless you stopped it. According to my doctor, it can take up to 8-9 months to build up in your system enough to be effective. Are you taking anything else?" I am also on prednisone. I am coming off the imuran, as it does not seem to be helping much, but does seem to be causing some liver issues. I am about to switch over to cellcept. Do you have the myositis? If so, I have had wonderful results with IVIG treatment. It is expensive, but has worked wonders. brought both my lungs and muscles back. Even though I am up to 70% lung capacity again, I still have the problem that you do at times. I also get exhausted very very easily. If I were you, I would talk to your doctor about the nausea and loose bowels, and maybe think about trying a different med. Until then, I hope things get better. It is hard enough dealing with this disease, without the added crap from the meds...... Keep up the good fight, and God Bless. Wayne

Yes im also on 20 mg of prednisone. I have polymyositis, sjorgens disease and the jo-1:( Thanks for ur time.

Hi Christy. Yes, could be either the imuran or prednisine causing the issue. If you have been taking the prednisone for longer, I would suspect the imuran. The prednisone is probably doing you more good then the imuran at this point. I am still on 65 mg/day of prednisone, hoping to taper down to 20 mg/day at some point. It has given me the moon face, and I have gained 50 lbs, but as long as it works, I'll handle the side effects. I have been off work since diagnosis, but if everything goes well, I hope to be back to work in the next 3-4 months. I am always happy to help if I can. I will also give my email address if anyone wants it just to talk back and forth anytime. Just let me know. right now I have nothing but time on my hands. Keep up the good fight and God Bless Wayne

Imuran did not work well for me either. Cellcept and the IVIG Rituxan, prednisone, Advair and Singulair. It has taken three years for me to finally find the right combination. It is a long road and quite painful and frustrating at times but you will get better and will have to figure out your combination of meds. Best to all of you and you are all in my thoughts.

My doctors have talked to me about Imuran, but put me on Cellcept first. I've had great success with it. Haven't been on prednisone for some time, and hope to never have to take it again. If they talk about Imuran again, I will let them know that I'd rather not, just from the discussions here on this website. Thanks everyone. I keep us all in my prayers daily.

I was only on 1 full tablet for 4 days and im really sick. I was on a 1/2 tablet for two weeks. I have a call in to dr now. I have been up all night with severe stomach issues. Now im really week:( Im done with Imuran!!!!

*weak

.Hi Christy Sorry to hear you are having such a tough time. I didn't do well on imuran, it didn't make me sick, it just didn't deal with the disease and it affected my liver a little bit, i see on the side effects listing that it can cause vomiting and stomach issues which must be miserable. I hope that you have some help from your doctor by now because I don't think you should stick it out feeling this rotten. The trouble with this disease is finding the medication that 'fits' you, and it takes time which is frustrating. When you wrote that you 'gasp' with an involuntary breath, you are the first person that I have heard say that! My doctor looked at me like i was a bit mad when i described this. It's become a bit of a joke with my family at the funny noises i make sometimes. I don't do it so much lately but it's still there now and again. Take care, and take it easy, i hope you start to feel better soon Alison :o)

On that gasping thing---I have done that for a while and started looking into it and I believe it is called Hyperventilation. Mine is like I cannot get a deep breathe and have to inhale real deep through my mouth. Is that what you are talking about? Christy, I sure hope you feel better soon and get your meds right. Blessings to all,

No, I actually will be breathing fine so I think. Out of no where this happens I have no control over it:( update I went to ER last night the imuran had raised my liver emzymes so I am no longer taking it. I'm thinking of asking about cellcept. What do u guys think about that? Can u still be in the sun with it?? What side effects have u guys had from it?? Thank everyone for the info and well wishes it means alot:)

Hi Christy. Glad to hear you should be feeling better soon. I am also switching over from imuran to cellcept. From what I have read on here in different posts, it seems to be a pretty good med. It can have many of the same side effects as the other meds, but lets hope for the best. It does not have the same issue with sun exposure though. By the way, did you hear about the environmental study they are doing in Bethesda, Maryland at the NIEHS. It has a link in another post on here. You may be interested in it. They are specifically looking for possible environmental links to Antisynthetase Syndrome. Keep up the good fight, and God Bless. Wayne

Christy I have Jo-1 with lung disease and mechanics hands and raynauds, i started cellcept while i was on about 25mg pred. I took this combo for about 4 months and my CK levels went down, I then very slowly decreased the pred. The cellcept held my CK steady and now I am off the pred completely and my last 3 monthly blood tests have shown my CK to be about 60. I haven't had any side effects, my liver tests are fine. I don't like sitting in the sun anymore though; just can't stand the heat anymore like i used to when i was younger. Melissa The gasping breath thing is a sudden gasp made by my lungs that takes me by surprise. It's only once, and might happen once a day, or once a week. Very odd, but i feel better knowing i'm not alone! Take care :o)

I too started on Imuran when I was first diagnosed at the end of 2009. They also had me on Dexamethasone because I didn't tolerate prednisone. The Imuran sent my liver enzymes up so they switched me to Cellcept. At that point my muscles had wasted to the point where I couldn't stand, was between a bed and a wheelchair and the lungs were in bad shape. The raynauds was really bad in my fingers. The Cellcept brought my ck levels down, the lungs got somewhat better and the muscles came somewhat back to where over several months I could eventually stand and walk with a walker. But I seemed to be stuck at a certain point. Some of the doctors and my physical therapist said I needed to get off or at least down on the steroids. Unfortunately my rheumatologist fought them and I was on fairly high dose of the steroids for almost 9 months. Once I got off the dexamethasone, I was able to walk normal and the lungs were back in the normal range. Only the raynauds didn't and still hasn't improved. I however had bad lymphedema in my feet and legs and now it's progressed to very painful peripheral neuropathy. Probably side effects of the steroids and now they say I have avascular necrosis and will probably need hip and shoulder replacements at some time, Again probably steroid damage. Has anybody else had the peripheral neuropathy or avascular necrosis? Also the cellcept worked great at knocking out the disease in the muscles and lungs but has done nothing for the raynauds in the fingers. I wear gloves 24 hours a day. Has anybody with the raynauds part of the disease had any luck with any treatment? Also I went back to the NIH in Bethesda and Dr Miller, who is perhaps the worlds leading expert on this disease, recommended Methotextrate and a small dose of prednisone as the preferred treatment, at least for me. It is different for everyone. He also said that he found that people who lived longest with this disease were those that didn't get off their meds too soon. Dr Miller is one of the researchers heading the study that Wayne recommended. Anyone who can should participate in the study. Take care everyone. -Mike

Becareful with methotexrate, I have been told anyone with lung involvement cannot take it. Do ur research. I hope u get some answers soon. Thank you all for your time.

Hi All. I would like to reiterate what Christy has said. I have also been informed, (as well as done my own research) about methotrexate. It should never be used by anyone with the lung involvement, as it will cause additional damage to the lungs. I do not know if I have the peripheral neuropathy, but I do know my feet and toes have very little feeling, except when I walk. Then my heels are in constant pain. I have lost a full inch of height since this all started. I too am on high does of prednisone still (65mg/day). This is as low as I have been able to get since I was diagnosed in Sep 2011. I started at 100mg/day. I do know it was instrumental at getting both my muscles and lungs back from where they were.. Remember everyone.....we are our own best advocates for this disease. Research everything you can, and ask questions. If your doctor can't or won't answer your questions, get another doctor. Keep up the good fight, and God Bless. Wayne

Yes, the doctor did tell me that there is a concern with Methotextrate and the lungs. He, however felt that my lungs were doing much better now than most people that have the Jo-1 and said I could always stop it and go back to cellcept if my lungs started to get worse. So far I've decided with the advice of my other doctors to stick with the cellcept. As they tell me, sometimes doing pretty good is better than doing even better. I must admit though, sometimes I get very frustrated with dealing with the effects of the disease even if it's at a low level (or partially in remission), that's when I consider taking a chance on something like Methotextrate in hopes of knocking the disease all the way down. Thank you for the advice and since you're on the high doses of prednisone, make sure the docs monitor your bone density for osteoporosis and have them check for avascular necrosis. They've got me on Fosomax and of course calcium and vitamin D. Good luck. -Mike

Hi Mike. Glad to hear you are going to stick with the cellcept for now. In general, it seems that once damage is done to the lungs, it can not be reversed, so why take the chance. I agree...doing pretty good may be better the taking risks to do even better. Thanks for the advice. I am also on Fosomax, vitamin D and Calcium. I do blood work every 2 weeks to check for everything. We do not want to beat this disease, but then get something else that will knock me down. I currently have Hypoparathyroidism, which is leeching the calcium from my bones, but will be getting those (2 of 4 are acting up) removed soon. That should hopefully alieviate the osteoporosis issue. We will monitor for the avascular necrosis as well. Keep up the good fight, and God Bless Wayne

Hi Family I was also diagnosed with the Jo-1 in 2011 an i also have a problem with that extra breathe that happens on its own.My question today is what Doctors are helping you. I have the pulmonary for my lungs Rheumatologist and my family doctor.Any suggestings on anyone else i can see.They gave me a z pack an this rash has no gone away.I started cellcept 3weeks ago because i went up to 300mg of imuran a day an down to 10mg prednisone and other symptoms had started.My doctor do not want to go back up on the prednisone but the cough is back strong. onetouch

Hi All. I have a Respirologist for my lungs, and a Neurologist for the rest, with a Rheumatologist ready to go on the sidelines if necessary. The neurologist is my lead doctor on this. My family doctor gets copies of all the paperwork, but strictly for my records. Onetouch, I hope you are able to find a good balance of meds. Something that will keep the side effects to a minimum, but keep the symptoms at bay as well. I know that I worry anytime the lungs are not right. That can be where the most long term damage comes from.. Keep up the good fight, and God Bless Wayne

Hi One touch When i switched from Imuran to Cellcept, I had to put my pred up to 25mg because the imuran hadn't worked and the disease had flared. The cellcept might need some help from the extra pred while it builds up in your system. It can take up to 3 - 4 months for the cellcept to start working. I see a rheumatologist who oversees the whole disease, and a respiratory doctor for my lungs. I also see a dermatologist for my mechanics hands. Mike When i was first diagnosed my raynauds was at its worst. It badly affected my right forefinger which lost all feeling and went purple at the tip. Surgeons discussed cutting the nerves to release the pressure, but they decided to give me 10 overnight infusions of iloprost first. It was a horrible treatment, and it took about a month to see any improvement, but it did improve and now i just take blood pressure pills, losartan and amlodopine daily. I used to wear sheepskin mittens in the summer, but thankfully now i just need gloves and slippers in the winter, and also i have to wear gloves when im driving because that triggers the raynauds in my right hand, which is weird. I have heard that vasodilators like viagra can be successfully used to treat raynauds but have no experience of using this personally. Take care Alison :o)

Alison, Thank you very much for the suggestions. I've been in the process of setting up appointments with specialists for raynauds at Johns Hopkins when I go back to the Myositis Center in May. I'm encouraged that there are other things that my doctors at Stanford have yet to try. I wear the gloves even in the summer when it's 90 degrees out. It sure gets the conversation going with curious people when your wearing shorts, a t-shirt and warm gloves. Thanks again, -Mike

I also do the gasping thing, especially when I yawn! I'm on cellcept and it has done wonders for me. Mike, I was diagnosed at Johns Hopkins. If you need any names of great pulmonologists or rheum, I'll share my dr from down there. My pulmonologist was involved in the largest study to date done, so she could also put you in touch with the best of the best!

I also go to Johns Hopkins Myositis center at Bayview. I see Christopher-Stein. Who do you see??

My pulmonologist is Dr Jeevan he seems good. I have pft done every 3 months.

Wow. All the meds that help you guys the most seem to be horrible for me and the ones like Imuran you guys don't like are best for me. I must be weird. That breathing problem Christy, do you think you may be having spasms in your lungs or the muscles around them. I have at times had my air cut like I couldn't breath and cold air can sure trigger that with me. I sure hope you guys feel better. I have been slowly getting better and it feels great to be able to walk again even if its with a cane or a walker. Take care everyone.

I guess it could be spasms??? Not sure. I went today and im flared agian so I go to Johns Hopkins myositis center Thurs to see if I start Ivig. Any info on that would be helpful. I hate needles!!! But hopefully this will work. Thank you all for the info and help. Also I go next week for a bone scan to check for bone deteration fron the high doses of pred:( Hope all checks out.

Someone had spoke of a great dr. In bethesda(sp??). Could u give me that info please? I would like a second opinion. Not sure I like Johns hopkins:(

Hi Christie. Here is my contact for the study they are currently doing at NIEHS in Bethesda. There is a whole team of doctors specializing in this disease. Hope it helps Irene Whitt, M.D. Staff Clinician NIH | NIEHS | EAG 10 Center. Dr., Bldg. 10, Rm. 6C-432D, MSC 1627 Bethesda, MD 20892-1627 Direct Line: (301) 451-6270 | Email: Irene.Whitt@nih.gov Blackberry (301) 997-5699 | Pager 102-10584 | Office #(301) 451-6280 Fax: (301) 451- 5717 | Toll Free: (888) 271-3207 Website: www.niehs.gov Keep up the good fight, and God Bless. Wayne

IVIG help me out a bit but it only slowed down my disease, it didn't make me better at all. I also had a lot of side effects like migrane, diarrhea, nausia and vomiting. If you are doing IVIG long term like I did then I recomend getting a port cath put in. It's very simple surgery to have it installed and it will save your veins. IVIG long term will collapse your veins. I had one if for about a year and a half, it doesn't hurt to get it and they can numb it for you before accessing it.

So I went to JH today.....I start IVIG next week three times a month for 5 months to start. I pray this works. Im so tired!!!

Christy, We will be praying that it helps, too.

Hoping you find some relief from the IVIG. Sending good thoughts your way.

We all understand when you say you are tired!!!! But we need you to keep fighting the good fight!!!! And take some time just to scream !!!!!!!!! Then shake it off ... one touch Some times i just have to laugh to keep my self going. onetouch