High CK inflammation

[Melaxx]

What’s the best medication to lower the ck level? So far I tried cortisone but hasn’t work , I’m going to see the specialist the 4 /3 anything I could tell me ( I find it very hard to do the stairs and hills .

Thank you 😊

[PMRpro]

The most likely reason for a high CK is abnormal muscle wastage and the usual management is corticosteroids - if it hasn't fallen it may be because the dose isn't high enough. Has the doctor who diagnosed it in the first place decided WHY? Identifying the cause is also important because controlling that is the best cure,

[Melaxx in reply to PMRpro]

I had a muscles scan on my upper legs and that was normal

[PMRpro in reply to Melaxx]

How high is your CK level?

Maybe this is of interest to you?

ncbi.nlm.nih.gov/pmc/articl...

[Roarah]

Are you on a statin?

[Melaxx in reply to Roarah]

No I’m not

[Jmiller623]

Hi Melaxx! This is the one lab that I have that is always abnormally high no matter what I do. It stays in the hundreds. It’s not high in the thousands like you see in autoimmmune myositis. I also find stairs and hills troublesome. I think it may be chronic poor circulation to muscles from neurovascular dysfunction and that’s why they ache. That’s my best guess. I just make sure to stay hydrated.

My rheumatologist always orders CK for routine labs which isn’t typical but she keeps track of it. I think if it’s in the thousands though, this should definitely be addressed as it can effect your kidneys. There are other things outside of AI disease like medications, remaining sedentary for long period of time, injury, heavy heavy exercise, hypothyroid that can increase CK.

Hope this helps in some way! Let us know how your appt goes. Hope you find relief soon.

[Melbourne-Girl]

Hi Melaxx, I have had high doses of oral cortisone which certainly helped my inflammation but I got Cushing’s Syndrome with it. I would only take oral cortisone if I needed it for a life saving reason.

a

I have had quite a few injections of cortisone and they have worked very well for up to 6 months.

Once it was for a fluid collection at the head of my tibia and the injection made it possible for me to walk again without pain. The only difficulty is finding a specialist who is comets t in giving you the injections. I had an excellent physician in Tasmania who was really skilled at giving these injections and I found a very skilled radiologist who works ha d in glove with a sonographer to ensure that the needle was in the right area. The important thing is that when you find somebody skilled in this area you need someone to drive you to where you are getting it done and to take you home so that you can rest for around 48 hours so the cortisone stays on the place where it was injected to give you the best possible outcome.

It is difficult to find specialists who are skilled in this area, although once you do it is all worth the searching that you have had to do.

I hope this has helped, please let me know how you get on,

Best wishes always,

M-G xxx

🍀🍀🍀