Histamine

[Digger031145]

Do any of you know if histamine is raised with myloproliferative conditions ?

I read that it is or can be raised causing inflammation

[hunter5582]

Yes. Histamine levels can be raised by MPNs. The dysregulation of the JAK-STAT pathway can cause the overproduction of basophils and mast cells, the white blood cells that release histamine. While histamine release is a part of the normal immune response, the overproduction leads to some of the symptoms we experience with MPNs.

[Digger031145 in reply to hunter5582]

Can you tell me what levels blood would show in our usual ET blood tests that would tell us if too much histamine?

[hunter5582 in reply to Digger031145]

What symptoms are you trying to assess? What do you hope to do with this information?The tests you might consider depend on what you are trying to measure. There are different tests to assess histamine levels (blood or urine). There are also tests for inflammation, including CRP, ESR, and inflammatory cytokines (such as TNF-α, IL-6).

I know I have systemic inflammation based on the symptoms. A few markers are elevated but not all. I treat for systemic inflammation because of the symptoms I experience, particularly arthritis/tendonitis. Anti-inflammatory intervention (curcumin, L-glutathione) improves the symptoms.

I also have elevations in histamine activity that is caused by the Besremi. It causes deep dermal itching and occasional rashes. A daily dose of antihistamine (cetirizine) controls the symptoms.

I consult with my care team about these issues. They concur about both the cause and the treatment. While I have done some blood tests for these issues, they are not all that revealing. What matters more is the symptoms an how they are managed. While I would like to have more objective measures, the truth is that not hurting and not itching is the most important measure.

[Digger031145 in reply to hunter5582]

My symptoms that are getting to me is muscle pain down the left side of my back and painful lower ribs on the left side.

Not allowed to take ANY anti inflammatory as I’m on warfarin due to blood clots in both lungs

[william-Indo in reply to Digger031145]

Check your spleen (spleen enlarge) for left lower ribs and hepatomegaly for the right side.

Lower back pain may cause by sit too long.

You may seek chiropatic or TCM for help.

Cheers

[Digger031145 in reply to william-Indo]

I don’t have lower back pain. I have muscle & rib pain on the left side only if my back. ESR is 83

[william-Indo in reply to Digger031145]

You are in acute inflamation.

[Digger031145 in reply to william-Indo]

I don’t think it’s acute as my ESR has been rising for a few years and my muscle pain left side has been going on for 9 years on and off.

This time it’s been going on since April with ESR at 83. It dropped to 47 after a steroid injection but is now back up to 67

[Cja1956 in reply to Digger031145]

That sounds like spleen pain to me. I would call your hematologist and see if you can get an ultrasound to confirm.

[Digger031145 in reply to Cja1956]

Spleen is at the front under left rib

This pain is at the back not front

[Cja1956 in reply to Digger031145]

It can radiate to the back which happened to me last year. I had a normal spleen, and I started getting pain on a left back near my ribs. I also got shoulder pain which is known to also be caused by an enlarged spleen. They found that my spleen had gone from 12 something to 16.4.

[Digger031145 in reply to Cja1956]

did you have inflammation? Was your ESR raised

[Digger031145 in reply to hunter5582]

I have high ESR. Free light chains are above range. Above range IgA.

Symptoms left side back and rib pain - like deep aching . Settles when sitting down but gets triggered when I’m moving around

[Spanelmad]

Make sure your drinking enough water as it could be kidney inflammation from the medication.

[Chicagopv]

I have pv and the accompanying itch due to higher histamine levels. Taking Jakafi really helps with that.

[George1976]

When I stopped taking peg for my CALR ET 4 years ago I developed a very bad case of reflux that took almost 2 years to get under control using famotidine and occasionally omeprazole along with lifestyle changes. I also developed throbbing in my face and especially in my nose with some congestion that feels like the flu. Now all I take is famotidine and it usually resolves about 50% of my head symptoms. Other antihistamines don’t seem to help those symptoms as much. I’ve also wondered about tests for this. I did test something related to mast cells a couple years ago but it was negative. My hematologist was nice enough to check the thing I asked for. Can’t remember what it was now. I’ve not been able to find an immunologist who knows anything about histamine but I continue to believe such a doctor might be able to help.

[Cja1956]

Yes, that’s why I take Claritin every day. It relieves bone pain due to Myelofibrosis.

[Digger031145 in reply to Cja1956]

Do you have high histamine &Cja1956

[Cja1956 in reply to Digger031145]

Sorry , I’m not really sure what ESR is. Whatever it is, I’ve not been tested for it.

[Digger031145 in reply to Cja1956]

ESR is an inflammation marker

[Digger031145 in reply to Cja1956]

Cja1956 did you have muscle & rib pain with high ESR?

[Sprat19]

interested in the histamine response. I am On 45 ug peg but I had terrible itching all summer and night sweats. Both completely subsided since the weather has cooled. Antihistamines didn’t touch it. Tried cetirizine, loratadine, piriton and fenofexadine.

Releived by calamine and or aveeno cream or cold water swimming.