does anyone out there have histamine intolerance?

[Loubprv]

hi

I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers crossed, but I also have histamine intolerance amd the absence of Hydroxicarbamide seems to be allowing my mast cells to have a high old time churning out histamine.

Has anyone else experienced this?

Louise

[George1976]

Hi Louise,

While I was on Peg I seem to have developed an immune condition that seems to calm down when I take famotidine which is an H2 blocker. Same thing continues now while on HU. Tests for a full on histamine intolerance have been negative.

[Loubprv Volunteer in reply to George1976]

Hi thanks George. Sent a reply to EP guy. I ll look into famotidine as well. I ll be rattling soon!

[EPguy]

Do you think HU improved a pre-existing condition? Or did the histamine trouble start with IFN as George describes here? If HU made a big difference, you might discuss with Dr continuing a low dose of HU with the IFN.

If it started with IFN you should watch carefully for any further autoimmune complications.

[Loubprv Volunteer in reply to EPguy]

Hi thanks so much for your reply.

I was officially diagnosed with HI 12 years ago thanks to my gp overdosing me on Nitrofurantoin.

I ‘ve had a good handle on it thanks to diet and carefully selected probiotics as well as small amounts of antihistamines ( loratidine and piriton) - able to eat so much more.

Since coming off HU last week HI has been somewhat of a pain, but I gather that interferon can also be a mast cell stabiliser.

Maybe it’s a case of waiting……and taking rather more antihistamines - cetirizine and Fexofenadine .

I too had thought of asking if taking maybe one or two HU might help - but am loathe to do that to be honest. It was causing skin probs. ( bcc’s etc)

Anyway. Battle forth and see! Thanks Louise

[DougyW]

I started to mild itchy skin after starting Pegasus. I have found Piriton works for me. I'd be starting that soon for hay fever anyway.

[Loubprv Volunteer in reply to DougyW]

Thanks Doug

[BeckDing]

hi

I hope you don’t mind me asking - but wondered how you were diagnosed as histermine intolerant - I really think I am but no one seems to raise it as an issue? I was on Pegasys for a while but had some random reactions over the last couple of years when I had Covid so back on hydroxyl - looking at trying beresmi once platelets have calmed down Thank you

[Gaig]

Hi Louise I was on Pegylated interferon for ET and it worked well to reduce my platelets but I had ongoing and worsening flu like symptoms. Unfortunately I then had an adverse reaction ( rash/ swelling) which my specialist believes was likely Steven’s Johnson syndrome/angioedema . Pegasus was immediately stopped. Specialist also did tests to be sure it wasn’t a mast cell disorder. My reaction wasn’t fun but was well managed and there have been no long term effects. Now on Hydrea and feeling fine. Can’t comment on your situation and we’re all different but hope you’ll ask your Dr if feeling concerned. Good luck with it all!

[Loubprv Volunteer]

thanks so much. I m sure all will be well. I have a superb haematologist