Hi everyone, I recently started cellcept but so far have not seen any results. (I do realize it may take some time to build up in my system first). Currently this is all I'm taking. I have intolerance to mtx and prednisone. My Ck level is currently 8000. My whole body feels like I've been beat up. My question is for anyone else with high ck levels, what did your doctor do or say? Is there a point when you may become hospitalized from higher levels? For home remedies I take warm baths and try not to overdo it. They help some, but honestly I'm just really scared. My level has never been this high, I've never felt this worn down and we do not check blood again for another month. Any insight or advice is greatly appreciated. Thanks so much.

I do take Cellcept, 4000 mg day. But I do Rituxan Infusion and that has made a world of difference for me. My CK levels have never been near that high and I feel for you. I do take 5 mg Pred but am starting to go down and see if I can omit it. Please check into the Rituxan, it has changed my life. It is extremely expensive about $12,000 per treatment which is two infusions, two weeks apart. That is one treatment. There is a Rituxan credit card that helps pay and qualifying is not hard. You can wait longer between each infusion. I started at 6 months, then the next one was at 6 and the next one at 9 and I am hoping for 12 months this time. Hope you talk to your doctor about this if it is an option for you.

CK levels of 8000 seem really high. They hospitalized me when mine went over 2000. I too am on Cellcept and my CK levels are now down around 100, but they also had me on dexamethasone for 9 months since I also didn't tolerate the Prednisone. I don't know of your situation, but you might want to consider a 2nd opinion if there's a major teaching hospital nearby or even the Myositis Center at Johns Hopkins in Baltimore if that is an option for you. Good luck. -Mike

Don't worry you can rebound from 8000 cpk. Mine was between 10,000 and 18,000 on any given day for more then a year and I am slowly making a comeback. I can't take prednisone either. It took quite a few doctors to find me a rhumy that knew what they were doing before I started to get better. I was already on IVIG but it was mearly slowing down the disease so they added cytoxan (a form of chemotherapy), plaquenil, medrol (a steriod), and then also added Rituxan a bit later but the other drugs were really helping. Rhumy says its was the combination of cytoxan, plaquenil, and medrol that was really doing the trick. I've since been taken off of IVIG, Rituxan, Medrol, and Cytoxan and replace it with Imuran. The combo of Imuran and plaquenil seem to be working greak, now my cpk is around 500 give or take 100. He used to also take my blood every 2 weeks. Find another Rhumy if he is not working. This one was my third and it was my Neuro doc that helped me find him. I was never put in holspital for high cpk levels, so long as your kidneys are ok its ok. My liver was suffering a bit though but is back to normal. Talk about this combo with your doc, it saved my life.

Thank you guys so much for your responses. I will discuss with my doc the other meds you've recommended during my visit next month. I wish I could go to the myositis center at John Hopkins, but money is tight and I can't afford to risk my job taking too much time off. The doctor I am seeing now is my 4th rheumatologist. But if I need to find #5 I will. I will keep you posted on my ck levels. But I'm curious as to what home remedies help you guys when you're feeling achy and tired?

RB - Cellcept does take awhile to build-up in your system - maybe as long as six months. My husband has been on it for 1 1/2 years and doing well with it but he has never had that high of a CPK level even when dermatomyositis was the main diagnosis several years ago. The only other drug they gave my husband when he had flare was the prednisone. They also offered him methotrexate but he never went through with the infusions. Also heard very good results from Rituxan infusions in someone who has high CPK levels.

You should see some results after the first month on your meds, if not change them. That is what my rhumy did for me. If he didn't see results after first month I got switched. With a ck level like yours you should see a noticable difference. RB for pain releif of muscles I take a couple of Magnesium a day on top of my mutivitamin. Magnesium really helps with the muscle pain. I also juice fruits and vegies every day. This really gives my muscles what they need to recover faster and feel pain free. The Magnesium really does work, no joke. I don't have to take pain meds often at all since I started it. If you have Netflix look up Gary Null. He has really good info about vitamins and what ones to take with autoimune problems for better health and the info was great. Get Magnesium!

Hi rbilton17. I was on imuran, but have since come off it as it was affecting my liver. I am currently waiting for approval for cellcept. I have been told that you should feel its effects within a month, however it could take a year to be fully functioning. I am also on prednisone, which is what is currently keeping me going, along with 3 days of IVIG infusion every three weeks. My head specialist is a neuroligist. He has warned me about rituxan infusions. They can work very well, but the more infusions you get, the higher the chances of some very serious side effects. I would urge anyone getting these infusions to read up on it, and be very aware. Also, the methotrexate can also be very effective, but should not be taken if you have lung involvement, as it can cause added damage to the lungs as a side effect. I think you need to keep on your doctor. If they are not willing to act, and act quickly, then find another. The quicker this disease is treated, and treated well, the better your long term prognosis. The longer that your ck levels remain higher, the more permanent damage done to them. This also means the harder it will be to get back to some semblance of "normal". God luck to you, and keep us posted how you are doing. Keep up the good fight, and God Bless to all. Wayne

Barbie, How many mg a day of magnesium do you take? Thanks. -Mike

On the subject of home remedies, when I get achy I pop a couple of aleve (2 usually works for the entire day) and then I rub on some aspercreme to the areas that are really bothing me. Also, if you have the mechanic's hands thing going on, I personally recommend a product called O'Keeffe's Working Hands. It's a parafin based hand cream that has no alcohol and no fragrances. It helped my hands more than anything the doctor's prescribed. Good luck, and God bless us all.

Just to give you an idea about the Cellcept - my husband's sed rate was elevated above 70 when he first started on the Cellcept - it took five months from the time he started it for it to be in the normal range. He has RA also so he had nodules on his elbows which disappeared while taking Cellcept. He did take Aleve four times per day and does not take any at this time. For him, the Cellcept seems to have been effective but I must reiterate, that his lungs are the focus on his treatment as he has very significant lung damage vs. joint problems. The best to you all!!!

sickdude I take an extra 400 mg per day along with what is in my muti vitamin. I also have noticed a huge difference a couple years ago when eliminating some foods I was having issues with due to gastro paralasis and when I eliminated them the pain I was having at that time went away quite a bit also. For me the big one was legumes, nuts and also gluten but not as bad. Those foods seem to cause inflamation in my body and that causes a lot of pain. Alltogether my pain is very managable and rarely take anything at all anymore. Its just hard to remember to take the muti's everyday and remind myself not to eat certain things. It really works.

Thanks everyone for all the replies. Nice to know we aren't alone in this. I will definitely try the hand cream and increase magnesium. Barbie I had gastroparesis too at one time. Doctors couldn't tell me why. And one year it left as suddenly as it came on. My digestion is still sluggish at times though. I wonder if gastroparesis is somehow related to the disease.

It is for me. All the muscles in my body were hit hard by the disease, I was left nearly paralized all over. Heart, lungs, digestive system, esophagus, even the muscles on my face making it hard to smile or make expression. Its all slowly coming back though. Its all connected. I'll probably never recover 100% but I'm happy to walk again and eat some solid food again. Good luck. I really hope you find someone that takes it serious. It took me years to find someone that really knew the disease.

When i switched drugs to cellcept in Sept 2010, my rheum told me that the drug needed help to kick in, that it couldn't decrease the CK levels on its own until it had built up in my body. So he increased my pred to help me cope with the effect that high CK levels have, and then when we started to see the levels get lower, I very slowly lowered my pred dose. I am now just on cellcept and have been off the pred since Sept 2011, My CK is holding steady at 60 Good luck :o)