I was wondering if we could do a little poll of CK levels? My husband, who is the one with A.S.S., had a CK level of over 9,000 last August when he was very ill and in the hospital. He needed help even walking. He was on IV Solu-medrol in the hospital and then on Prednisone 60 mg, slowly tapered to 20 mg, which he has been on since early December. His CK levels are staying in the 900 range. In January, his CK was 914, now it is 941, so even on Pred 20 mg., it is going up. He is also on Cellcept. He just had a PFT and his lung function is improved, though he is coughing a lot. So, what are your CK's and thoughts about this?

HI Everyone! My CK level was 4780 in August of 2010. I have Jo-1 Antisynthetase with Dermatomyositis. I started a 6-month course of IVIg infusions in September 2010. After the first week of infusions my CK dropped to 1770. After the second week in October it was 201. After the third week in November it was 110!!! I finished the six months in February 2011 and it will be a couple more weeks until my next blood draw. I am feeling much better. I am almost off prednisone, only taking 2.5mg/daily. My rheumatologist will take me off in May and then start reducing my Cellcept. I am hoping to return to work in August (I'm a teacher.) My lungs are clear and have improved a great deal. IVIg is very expensive, but worth every penny--it gave me my life back!

Hi, I was diagnosed with BOOP pneumonia in November 2009, after 2 weeks in a local hospital.They sent me home with oxygen and 6 mg of Dexamethasone (about 4-5 times as strong as Prednisone) After 2 weeks at home I had lost about 22 pounds, almost all of it muscle. I was falling to the ground because my leg muscles were virtually gone. I went to Stanford Hospital emergency and they admitted me with CK levels at that time of 1909. After about a week there, I was diagnosed with antisynthetase syndrome, with anti-jo-1 and Dermatomyositis. They raised the steroid dose and my Ck levels over the week trended down to an eventual 793 when I left. A week later they were at 763 and 2 weeks later at 277. I was put on Imuran, which I did not tolerate so was switched to Cellcept. I spent a lot of last year in and out of hospitals, rehabs, and physical therapy learning to walk again. I had severe lymphedema in my feet and still have very painful neuropathy. I also have interstitial lung disease and Reynaud's as part of the disease but my lung function tests are now normal and I walk fairly normal. I'm off steroids and have just tapered down to 2 g day of Cellcept. My current CK level is 50. If it wasn't for the horrible pain in my feet, I would be quite content with my current progress.

Thanks Sfabela and Sickdude. Sickdude -are you in California? We live in the central valley.

I have had fluctuating CK levels. They had went down the last time I had them done. I just had them done and see the doctor tomorrow so I will be getting my levels. I know that when we are battling the infection inside us they can go up. I was put Azathiprine instead of Myfortic because my levels had went up in December.

Lhasamagic- Yes I'm in the Santa Cruz area and I've been mostly using doctors at Stanford, but next month I'm going to the Myositis Center at Johns Hopkins in Baltimore and then to the NIH in Bethesda. What part of the Valley do you live in? Are you using local doctors?

Sickdude, are you participating in the study at NIH with Dr. Miller and Dr. Whitt? I am too. I will be there in late May for a week. I went to JH Myositis Center last August. I saw Dr. Nguyen and Dr. Danoff. They are amazing doctors! Dr. Danoff spent almost two hours with me. Good Luck at JH and at NIH. Maybe I will see you there.

sfbela-How funny, yes I am starting in the study with Dr. Miller. It's been slightly longer than a year since I was diagnosed so I will be in the study where the diagnoses is between 1-4 years. And yes I will be meeting with Dr Danoff and a Dr Louis. I'm excited that you had such a good experience with Dr Danoff. This will be my first visit to Hopkins and for the NIH study. I'll be at Hopkins on the 27th and NIH sometime the same week so maybe I will see you there.

Hi Sickdude, We are in Merced. My husband is followed by a local pulmonologist, who is very good, and immediately referred him to UCSF. He is followed in the Interstitial Lung Disease clinic and Rheumatology at UCSF. His lung function has improved, and he is feeling pretty good, but I'm concerned because he is still of 20 mg of Prednisone and his CK is still in the 900's. I've been debating on making an appointment for him at John Hopkins. Maybe it's time.

Lhasamagic- Glad to hear you're going to UCSF. with this disease it seems pretty necessary to go to a good teaching hospital and yes going to Hopkins might be a good next step. I could give you a better opinion after next month but the infusions that so many people get there might be the right next treatment for your husband. You might want to ask the doctors at UCSF. From my experience you should be concerned about being on those steroids too long. I think my local doctor kept me needlessly on them for longer than necessary and they may have caused damage to my lymph system and the current extreme neuropathy pain I have in my feet. Steroids can be a life saver but they also can have lots of dangerous long term side effects. Good luck with his treatments.

Hi Sickdude, I agree the steroids need to be tapered. I am an R.N. and have seen lots of folks with side effects from steroids. It is actually the rheumatologist at UCSF who is keeping his dose so high due to his elevated CK levels. We see her again on the 20th of this month. Was it your docs at Stanford who recommended JH or did you decide on your own? Hope JH can help with your neuropathy pain. Have you tried Neurontin? It really helps some people with neuropathy pain.

Lhasamagic, Your husband is lucky to be married to an RN. You're right, it's probably necessary for him to be on the steroids till the CK levels go down. Hopefully the cellcept or another immune suppressant drug will kick in, or maybe those infusions will work so he can get off the steroids. I heard about JH from an aunt in North Carolina who thought she had Myositis.(It ended up being another, less severe autoimmune disease). I then started hearing more about it from this forum. I asked my Stanford doctor for a referral and she gave me one. I asked her about the infusions and she said they were considering them for me the 2nd time I was in the hospital when my oxygen levels dropped way down and they were pumping me full of lots of antibiotics, antifungals, other drugs and giving me a blood transfusion. Then something kicked in. Now my lungs test in the normal range even though I have ILD, and my CK levels are low, So I guess those infusions are only for when nothing else works, partially because they're so expensive. About Neurontin, I've been on it for about a year. Originally for leg pain from a fall I had when the disease was raging. Just last week my neurologist doubled the dose to see if it would help with the feet pain. It helps a little but the side effects are it makes me drowsy and slow. He said to give it 3 more weeks and then if it doesn't get better I can taper off. I tend to say less drugs the better. If it's just masking the pain and causing other problems I don't want it. They have a list of about 15 drugs they have me taking but I have convinced them I need only the cell cept, which I'm tapering, the neurontin, and a drug for the osteoporosis (which I got from taking the steroids). Thank you for your suggestions and again good luck to you and your husband.

please tell me what ck is. just got diagnosed, duke unv. in durham nc. has just just started me. did a muscell biopsy ``11 days ago. have been termally ill for 6 years. just diagnosed with the jo-1fii like iam in a cave someone please help me.

Nanasix, I understand how you feel! Please don't give up hope. CK is your creatinine kinase level in your blood. Sometimes it is also referred to as CPK. The higher this level is the more muscle involvement you have. Normal CK is under 173. CK level is most often associated with people who have heart attacks. After a heart attack the CK level spikes because it shows the death of muscle tissue in the heart. CK returns to normal after a heart attack, unfortunately it does not for people like us. If you are having IVIg infusions those will help lower your CK level. Basically, the JO-1 antibody in your blood is telling your immune system to attack your muscles and joints like they are invaders in your body. The IVIg is human immunoglobulin that is mixed from thousands of different blood donors and infused into your system to confuse the Jo-1 antibodies. With the IVIg in your system, the Jo-1 tried to fight all those differnt invaders and leaves your muscles and joints alone. I hope this helps. You can improve with this disease! Duke is a great place to be. Ask your doctors lots of questions and DEMAND answers. I will be praying for you. Stephanie

Lisahasamagic I am Jo-1 positive My CK was 2391 when i was diagnosed, it is currently hovering around 500. It went down to 121 when i was on azathioprine and 40mg steroids but when i tapered my steroids my CK crept back up to 1500. Currently on cellcept and Imuran and only 5mg steroids but can't seem to get the CK below 500 Since adding the Imuran to my regime my finger tips haven't split, but it is playing havoc with my tummy. My lung function has remained stable for the last year, i still get extremely short of breath on exertion, but my main problem is that the muscle weakness in my thighs seems to be progressing. My respiratory consultant in London said he would be in favour of me having IVig from a lung point of view, so maybe this would be something to pursue for your husband and would help his CK? My local hospital is reluctant for me to have it because of the cost which is frustrating. I may speak to my London rheumatologist and get his opinion when i see him in July. Alison

Hi Alison, It is so comforting to be able to talk to people on this forum and find out what others symptoms and labs are. We went and saw my husbands primary doctor Friday and when I told him I was concerned about my husbands CK levels and continuing high doses of steroids, he basically said that we could expect his CK levels to always be elevated with this disease. I was able to tell him that in communicating with others on this forum, that is not true. We ask for a referral to John Hopkins and he agreed. His office clerk will refer him, though this is the same girl who referred my husband to the UCSF ID (Infectious Disease) clinic intead of the UCSF ILD (Interstial Lung Disease) clinic and she was so slow in referring him, we had already gotten a referral from the local pulmonologist and been seen at the ILD clinic. We see his rheumatologist at UCSF on Wednesday. Maybe she'll have some new recommendations... I hope you get the IVIG infusions. I would think if you had two specialist saying you needed them, they would give them to you. Sometimes you have to fight for what you need.

I'm feeling a little concerned I have two monthly blood tests and i'm sure nobody is monitoring my CK levels they check my FBC, U&E's and CRP. Is this a standard test for ASS? Katrina x

Hi Katrina CRP is a marker for inflammation, as is ESR and CK. My rheumatologist checks all three every month along with FBC and Liver function tests. It is the CK that is always discussed at my clinics. (I am in the UK) Perhaps next time you get your bloods done, ask them to add the CK on the form? Hi Lhasamagic I would be worried too about the high CK and continuing high steroids. I'm so pleased that your husband is going to be referred; hopefully a new team will have new fresh ideas to help your husband. I hope you don't have to wait too long this time. I agree that this site is great, because you can be armed with information and also knowing about the other treatments available we know what to ask about. Alison

My levels were down to almost normal. My other labs were ok. Good luck. I had switched from the Myfortic to Azathioprine in December and my levels have went down. I have just started Hydrochloquine last week. It is to help the skin inflamation and the joints. My advice is to resurce each treatment. There is no set treatment of this disease. I am at the beginning of this diseas and I have stablized. I also would weigh the pros and cons of each treatment. I know some have some serious side effects, but would he react to them? Happy Easter to everyone! Jen

ty allison for answering. i have no one to discuss this with. my family wants to keep things just the way they use to be, even after 5 years on disabilty. there way of thing is still mama will fix it, she always has. anyone near kuwait? my daughter 2 grandbabes and my son in law live there. my husband is great to me but sticks his head in the sand when it comes to me. enough about me. all ican say is god help us all. i have so many things wrong that i dont know whats going to raise its ugly head. i have 5 other things to. steriods is a totally out my body cant tolerate them at all.iam suppose to go back in july,to duke, my other doctors wants me to try and go back before that . i would like to see the bunny rabbit they got in thier hats. lol,again i thank you for listening and will let you know any news.

Hi Jen I just wondered how you have been since you started the hydroxychloroquine? have you noticed any changes in your skin, and how is your stomach while you have been on it? My doctor halved my dose because of bad tummy, but I have noticed the skin on my fingers getting worse since he cut the dose. I wondered if anyone has any tips on taking this medication to avoid the tummy upsets. I have tried the probiotic yoghurt drinks, and am trying peppermint at the moment. Hi Nana6, It really helps to read about the medications that people on this forum have tried, so that when you see your doctors you can challenge them about what else there is for you. It is extremely frustrating waiting for appointments; they seem so far away when we just want to feel better right now! Don't give up, people on here are very supportive, and understand how hard it is to live with this disease. For everybody I meet day to day who doesn't get it, I know there are people here who are living it and understand completely Alison