Itching and mast cells.

[millycat]

Hi everyone thought I would share my experience with you all in the hope it may be useful to someone. I have ET diagnosed in 2004 but probably had it for years before that. I have the normal symptoms itching ,night sweats, migraine and periods of crippling fatigue. In June I had the most terrible incident of hives along with swollen hands and feet . I was prescribed steroids by A and E which resulted in extensive bruising on my legs and torso ( pretty scary !). I still have the hives now . Due to the adverse effect of the steroids and thinking it was a food allergy I asked for a referral for allergy testing. In August I attended an appointment at guys where the consultant told me it wasn't an allergy but an autoimmune problem with my mast cells almost certainly linked to my mpn. I was prescribed a new anti histermine to control the hives it could take up to 2 years to subside. Interestingly I have to avoid Ibruprofen, aspirin and any codeine related product. Some of the triggers for the hives outbreak include dental surgery and I had a tooth removed 2 days before my hives erupted and had been taking Ibruprofen for the pain. Another trigger can be new medication, I am still trying to find the right dose for my new antihistamines but am much better at present . On the plus side no migraine in the past 6 weeks. . I hope this proves helpful to somebody out there

Regards and best wishes to you all

Donna

[stillkicking]

Hi Donna,

You poor thing, the hives must be maddening and you certainly have been through a lot. Very interesting the various medications that you have to avoid (including aspirin), as many of us take them. Glad that the consultant at Guys was able to shed some light on the cause, and the probable link between the autoimmune problem with mast cells and the MPN. The more that is known about MPNs the more complicated things seem to get!

Anyway, I do hope that the new antihistamine medication brings you relief... and soon!

Best Wishes,

Peter

[Wyebird]

Thank you so much

[lucieboo]

Hi Donna

How horrible for you! Actually I had a weird autoimmune attack, not as bad as yours, but I am sure it was a mast cell attack, I had the symptoms of polymyalgia rheumatica, with temporal arteritis and it affects joints and gives severe scalp tenderness and visual problems on one side of the head. Luckily, it just subsided.

I hope you get this under control. It seems mast cells are the culprits for the itching which most of us suffer. I take half an Atarax tablet at night to help me sleep, and now I seem to need it every night. I am a bit woozy in the mornings but this wears off. It is the only antihistamine that works for me.

Very best of luck.

[redumbrella in reply to lucieboo]

Hi lucieboo? I too have PV Kak2 neg, I was diagnosed 13 years ago, I was also diagnosed with PMR some years after that, although I have been told that the PMR should burn out aftet a couple of years 7 years or so on I still have the symptons

I find it really frustrating as it is difficult to tell if the various paons are from the PMR or Bone pain due to the PV. I wonder if anyone else out there shares this experience.

Best of Luck

Garry

[lucieboo in reply to redumbrella]

This is just such a strange collection of diseases. The thing that worried me about the PMR was the visual disturbance, but luckily I did not need treatment. I have also had gout (uric acid) but OK since I started meds for it. I think Hydrea can cause bone pain.

[Kimmyk]

I had terrible hives, itching and crawling. Xolair shot helped to get rid of hives within 3 weeks. The hydrea helped with most itching and crawling. I believe mast cells are damaged and allergies, inflamatory food largely affect pv. Best of luck.

[millycat]

Thanks for your support everyone.