ck level

[50guy]

good evening

Just wonderIng what sort of levels congas been . Before being diagnosed.

Thanks A

[Bluffeypompom]

hi. Are you asking about creatine kinase levels or glucose?

I could probably dig out my early results but my understanding is that ck is not a very reliable indicator because of the broad range of causes of high ck

Glucose levels have never been mentioned.

[50guy in reply to Bluffeypompom]

Hi , yes it was ck levels.

Thanks

[Easysiib]

Hi,

My CK levels were what started the ball rolling to my eventual diagnosis of polymyositis.

I was feeling very weak all over and my GP done a blood test, my ck was over 3000 and prior to treatment it went over 5000.

My understanding is ck is a marker in the blood and shows 'damage to muscle'. A heart attack can increase ck but a scan ruled this out.

I believe ck should be classed as normal somewhere between 200 to 400. Hard exercise can increase this hence the reason why muscles ache after a hard workout. I was told for context reasons a person who completes an iron-man course (2 mile swim, 100 mile cycle and a 26 mile run) would expect a ck level of about 1700.

This is one of the reasons blood tests are done on a regular basis when treating myostis using methotrexate. This drug can affect other organs so bloods are essential to regularly check all is reasonably well in the body.

The day before my 3 monthly blood test I rest and relax to ensure I don't artificially inflace my ck.

Hope this helps a bit with my understanding how ck and polymyositis interact.

[Nearness]

Hi I agree with easyiisib.

My CPK was of the order 5000 when I was first diagnosed. I was put on prednisone which seemed to have no effect. Then on methotrexate and IVIG drips, my CPK came down to about 500.

I live in France and was not happy with the French Rhumatologist as she did not seem to understand NIMM. I consulted a British Rheumatologist who told me he treated the patient not the numbers and he considered my CPK results of 500 as satisfactory.

I was not happy with IVIG as it involved three days a month in day hospital. Incidentally the British consultant told me that if he provided that level of IVIG the NHS would be very upset.

I changed my consultant in France and the new consultant put me on CellCept (no more IVIG ) cut out methotrexate and has now reduced my Prednisone to zero, but kept me on hydrocortisone until my adrenal gland produces sufficient cortisol ( three monthly tests).

My CPK levels are now at about 200 although the French upper level is given as 171.

I am happy with my current treatment but have a few misgivings about my initial treatment. In my opinion prednisone at high levels (60mg to start) did nothing for me. Methotrexate similarly did not appear to work (for me) but caused to other side effects.

Cellcept seems to work well and being only 6 pills a day is much easier than IVIG (and it’s three days a week in day hospital)

Good luck with your treatment and as an American told me on another Myositis Forum, everyone is different and treatments that work for one person might not be the best for others.

Best Regards

[JohnofWsM]

Hi, i was finally diagnosed with IBM after many various tests the final one being the muscle biopsy. They were thrown off course to start with because my CK levels tested normal - they even did a repeat to double check. Apparantly to have it without a raised CK level is very rare but does occur sometimes. I still have the same progressive muscle deterioration as people with the inflammatory version but as all my other blood test are normal I luckily don't suffer with the pain and all the other awful associated symptoms which look and sound horrendous. I suppose technically it is Inclusion Body Myopathy as "itis" means infammatory. Good luck

[50guy in reply to JohnofWsM]

Good afternoon, could I ask what your symptoms were

[JohnofWsM in reply to 50guy]

Hi, sorry for late reply, somehow I missed seeing this. (probably an age thing) . My friend asked me back in 2015 (age 66) as to why I was using my arms more than my legs when I was climbing up a scaffold tower. I hadn't realised I was but I did know that although I could walk quite quick if I wanted to I definately could not run at all, not even trot. I visited my GP and he said I definitely had deterioration of the quadriceps and referred me to the neurology dept at Bristol Southmead Hospital. I also had no reflexes when hit with the rubber hammer although sometimes this is normal. The Registrar could not work out what was happening as I appeared to have oversize calf and tibia muscles (as if they were compensating for quadricep and glutes deterioration. I was then handed over to the consultant. She said lower leg and foot drop were normally the early symptoms of IBM and I didn't have that. She also noticed that I was "flinging my legs" (her words) when walking. She sent off blood samples for loads of tests and when the CK came back as normal she sent of another sample for a retest as she thought there must have been an error. There hadn't been as that test came back as normal as well (about 300). I questioned this as it was up the high end of the normal range and she said that they regarded it as high when it was in the thousands. Next I had the Nerve Conductivity test and Electromyography (EMG) test and these were normal. I then had spine and lower limb MRI which showed fatty infiltration in both thighs with some muscle oedema. This is often found with Myositis. Finally had muscle biopsy (from quadricep) in 2018 where there was found to be myopathic changes on the biopsy which led the consultant to conlude that I had a rare form of IBM. I have had a slow progression of deterioration with upper legs, arms and hands losing strength. I can still walk but it is dangerous as I fall very easily if I scuff a slight bump on the ground as my knees immediately give way as no quad muscle left to hold them. I have to conciously lock my knee joints as I walk. I always use a mobility scooter when I am out or my power chair indoors. steps up or down are a nightmare. I have difficulty getting up out of chairs and only tend to sit on ones that are at least 23 (60 cm) inches high. I am losing grip and have a lot of trouble opening news jars of jam or pickles etc. There does seem to have been an acceleration of the deterioration in the last 3 or 4 months but in reality, it may have only been at the same rate but has reached that tipping point where it makes everything more difficult. Have you had your diagnosis yet?

[SoonToBe]

Mine have never been over 600