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Highly elevated CK (Creatine-kinase) anyone else?

Gingergrrl

Senior Member
Messages
16,171
Yes, sweet potatoes / yams is one of my staplefoods now.

That is so interesting and almost everyone I know with MCAS who had reached a point of only tolerating 4-5 safe foods, was able to tolerate sweet potatoes or yams (myself included) but I am not sure why. They are healthy with lots of vitamins so I am glad you can at least eat those.

I've pretty much tried all antihistamines except atarax.

Would your doctor be willing to prescribe Atarax to try? I did not tolerate Benadryl (in 2015) and reached a point of having a toxicity reaction to it. I was afraid that Atarax would be similar since they are both first generation anti-histamines but it was completely different. I never took Atarax as a daily maintenance med but it became my rescue med and there were several instances (in 2015) that without it, I am certain I would've ended up having to use an Epi-Pen.

Of all the antihistamines i find ketotifen to be the strongest. I can only have it before bedtime!

Ketotifen is technically a mast cell stabilizer (although it is an H1 blocker, too). Most people with MCAS take a separate H1 blocker (like Zyrtec, etc) in addition to Ketotifen (or another mast cell stabilizer).

Babysteps, you will get there!

Thank you so much (and right now I am very happy with baby steps)!

CK has been retested and came back within normal range. I have to say that my muscles were hurting much more the first day of testing than they do today. 10 days ago it was 2100, now it's 100. Can CK drop so quickly in blood?

Wow, I have not heard of it dropping so quickly but am hoping someone who knows more about this will reply. I know the standard MCAS markers can be extremely elevated in an attack (like histamine, prostaglandins, etc) and then drop back down to normal but I had not heard of that with CK.

I'm thinking of triggering a MCAS attack deliberately and then go to a private lab to have CK measured.

Are you an anaphylaxis risk? If so, it is truly not worth it to try to trigger an attack. But if there is no danger, I can understand wanting to know for your own peace of mind (and to prove it to the doctor). Can you just show up at a private lab without a doctor's order for testing? It is different in each country.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
That is so interesting and almost everyone I know with MCAS who had reached a point of only tolerating 4-5 safe foods, was able to tolerate sweet potatoes or yams (myself included) but I am not sure why. They are healthy with lots of vitamins so I am glad you can at least eat those.
Well, yams are no longer a safe food for me. I can eat like half a yam once every few days. If i overdo the yams i get muscle and jointpain in my legs, my eyes get irritated and itchy and i can't stop urinating.
I tolerate sweet potatoes a bit better, especially when they have been slowly roasted over a fire.


Would your doctor be willing to prescribe Atarax to try? I did not tolerate Benadryl (in 2015) and reached a point of having a toxicity reaction to it. I was afraid that Atarax would be similar since they are both first generation anti-histamines but it was completely different. I never took Atarax as a daily maintenance med but it became my rescue med and there were several instances (in 2015) that without it, I am certain I would've ended up having to use an Epi-Pen.
I have to check if atarax is available in my country.
These antihistamines make me incredibly drowsy!
So you really get anaphalaxic episodes? I've never really experienced one, maybe mild. I suffer from an inflammatory reaction all over my body (no hives or itchiness!).

Ketotifen is technically a mast cell stabilizer (although it is an H1 blocker, too). Most people with MCAS take a separate H1 blocker (like Zyrtec, etc) in addition to Ketotifen (or another mast cell stabilizer).
Yes, but i read it's only a weak mast cell stabilizer. If i take both i don't think i can open my eyes for a week! Is it true that one develops tolerance to these meds? Or at least become less drowsy after x period?

Are you an anaphylaxis risk? If so, it is truly not worth it to try to trigger an attack. But if there is no danger, I can understand wanting to know for your own peace of mind (and to prove it to the doctor). Can you just show up at a private lab without a doctor's order for testing? It is different in each country.
Nope, not really. What i feel and also physically visible - is an inflammatory reaction. Eyes, sinuses, muscles and joints, intestines, skin, excessive urination and a brain on fire.
No doctor has ever been able to tell me if there's a name to it.
I just know it's because the mast cells release mutiple inflammatory metabolites and when i take antagonists/blockers then the symptoms improve;
antihistamines
antileukotrienes (boswellia)
anti-inflammatory prostglandins (1 to 2 gr. fish oil EPA/DHA)
Steroid inhaler and beta agonist (symbicort)
mast cell stabilizers (ketotifen and quercetin)

So yeah, i'm not crazy
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Just received the results back from the rheumatologist. Everything is "Normal".

Negative: anti-SSA-52, anti-SSA-60, anti-SS-B, anti-Sm, anti-nRNP/Sm, anti-AMA-M2, anti-Centromere-B, anti-dsDNA Lineblot, anti-Histones, anti-Jo-1, anti-Nucleosomes, anti-PCNA, anti-PM-Scl, anti-Ribosomal-P, anti-Scl-70

Total IgM, IgA and IgG are low-normal.

CK back to normal.

The only thing i worry about is TSH at 3.9, it's been creeping up a few points every last few years.

What now? I really need proper MCAS testing done and that's unavailable in my country. I'll have to seek a proper diagnosis abroad but funds are tight.

Great, another failure.
 

Gingergrrl

Senior Member
Messages
16,171
I tolerate sweet potatoes a bit better, especially when they have been slowly roasted over a fire.

I've never fully understood the difference between yams and sweet potatoes but I would stick with whatever foods you tolerate right now that do not trigger a reaction. Sweet potatoes were one of my few safe foods in 2015 before we got the allergic reactions under control.

I have to check if atarax is available in my country.

I would assume it is available b/c it is an old school anti-histamine, and not under patent, and you can get a cheap generic version. The generic is called Hydroxyzine.

So you really get anaphalaxic episodes? I've never really experienced one, maybe mild. I suffer from an inflammatory reaction all over my body (no hives or itchiness!).

I have not had one in over two years and no longer consider myself at risk of having one (although I will avoid IV contrast dye and a few other triggers probably for the rest of my life). Strangely, with the exception of the episode triggered by tartrazine (yellow dye #5), I have never had hives as part of the reaction.

Yes, but i read it's only a weak mast cell stabilizer. If i take both i don't think i can open my eyes for a week! Is it true that one develops tolerance to these meds? Or at least become less drowsy after x period?

I adapted very quickly to Ketotifen and it does not make me tired or sedated whatsoever. Atarax on the other hand remains one of the most sedating meds that I have ever taken. I only take it now as a pre-med for IVIG (which I am now actually done with) but it would put me to sleep for several hours every time.

So yeah, i'm not crazy

Definitely not and many people with MCAS are given all kinds of psych diagnoses. I had one doctor in the hospital in 2015 (who saw me for a grand total of less than 5 minutes) tell me I had developed "food anxiety" which was absurd.

Just received the results back from the rheumatologist. Everything is "Normal". Negative: anti-SSA-52, anti-SSA-60, anti-SS-B, anti-Sm, anti-nRNP/Sm, anti-AMA-M2, anti-Centromere-B, anti-dsDNA Lineblot, anti-Histones, anti-Jo-1, anti-Nucleosomes, anti-PCNA, anti-PM-Scl, anti-Ribosomal-P, anti-Scl-70

You might be normal on those particular auto-antibodies (and you might be normal on all auto-antibodies, I have no idea) but in my case, I am positive for 11 auto-antibodies and none of them are mentioned in your list above.

The only thing i worry about is TSH at 3.9, it's been creeping up a few points every last few years.

That is slightly high, and if my TSH was now 3.9 while on Armour thyroid, my Endo would probably want me to increase my dose, but my TSH consistently stays under 3.0 (and usually under 2.5) with Armour.

Great, another failure.

Only by the doctors, not by you.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My doctor called me concerned about CK of 850 and asking if I'd had any heart attack symptoms. I hadn't. I had walked 6.6 miles the morning before the test.

They retested, to find it at 450 4 days later. I'd walked 3 miles before it.

They retested with troponin, Sed rate, and fibrinogen. Troponin is a heart attack marker and was zero. Sed rate was 10 (when I was sicker, it was usually 2, then more recently, it's been 19, indicating some inflammation). Fibrinogen was top of range, where it's been for awhile - I have thick blood. This time, CK was 298, 5 days after the first time, still elevated but closer to normal.

Given the comments above, I can conclude these factors may be contributing:
  • mitochondrial dysfunction
  • exercise
  • MCAS
  • autoimmunity
  • naltrexone
And, 2 recent papers found low CK, especially in severe ME/CFS patients, although as we've seen, there are reasons it can be raised.