over the counter antihistamines

[Peleton]

Hi all,

I was first diagnosed with UP in 2003 by a private doctor, I had the brownish marks on the tops of my thighs and arms .

I was told that there was no treatment , hopefully it would fade in time and to use a camouflage makeup as a cover up !

My condition gradually got worse and the marks then turned red and raised and sometimes became itchy when I exercised . In 2017 I was referred to a NHS dermatologist , I had further blood tests and a 4 week course of ultra light treatment ( which joined up the spots and gave me an even skin tone for a couple of months )

When I went back for a checkup , there were a group of medical students present and one of these students mentioned SM and suggested that I should have a tryptase test done. The tryptase results came back slightly high and I went onto have a bone marrow test which confirmed that I had SM . I also had a spleen & liver ultrasound and bone density scan which all came back as normal.

I was referred to a Haematologist consultant at The Clatterbridge Cancer center, who I see yearly and I have full blood checks every 6 months.

My consultant has always been surprised that I have never shown symptoms of allergy to anything .

However in the last couple of months on 3 occasions after being out in the cold and coming back indoors, the rash has completely covered my arms , torso and both legs ,this has been extremally itchy and I had a burning sensation all over my body, I then felt sick , very cold and exhausted for a few hours . I am due to have my bloods checked in March and will let them know about these episodes . Could anyone recommend any over the counter antihistamines , just incase I have another reaction.

[Topnumpty]

Hi, PeletonI also have UP, also known as Cuteaneous Mastocytosis. With SM. Have prescribed , daily Cetirizine, which can also be bought over the counter. As a ‘rescue’ for when skin flare ups occur I have prescribed Chlorphenamine (piriton) which can also be purchased over the counter. This latter does make me sleepy. I often welcome that sleep, though, if the skin pain is too bad. I do find that the management with daily Cetirizine has reduced flare ups to less than 2 a year. Triggers for a flare tend to be sunshine, and stressful situations, or overdoing exercise. I avoid triggers whenever possible,

Hope this helps.🙂

[Peleton in reply to Topnumpty]

Thank you

[MastoMan]

I take Benerdryl in addition to my other antihistamines. Cetirizine is used by some I found it makes me drowsy but generally it should not.

[Peleton in reply to MastoMan]

thank you

[Jess-UKMasto Partner]

Hi Peleton, cold (and changes in temperature) are a common trigger for those with skin involvement in their mastocytosis (and indeed for some without the common spots like yours). I have had to stop swimming because I felt rubbish during and after unless the water temp and the air are exactly the same-- which is pretty impossible to achieve! Your GP can prescribe you an antihistamine without a wait for your March appointment. All antihistamines work pretty much the same, with some being more sedating (making you sleepy) than others. The most sedating common one is Piriton. Less sedating is cetirizine (which some patients find particularly helpful for itching). MastoMan mentioned Benadryl-- which in the UK can be either cetirizine or acrivastine. If you're having skin symptoms AND are feeling sick at the same time you could be in a circumstance that is on its way to anaphylaxis. If you don't already have 2 epipens that you carry with you all the time, the GP should give those to you ASAP. Please do call and ask for that support now. Some research has found that nearly half of all adults with SM will have anaphylaxis in a lifetime-- so much more common than in the non-SM population. Please do that before your consultant appt as epipens anyway are prescribed by the GP : ).

[Peleton in reply to Jess-UKMasto]

Thanks Jess for your detailed reply , I have now made an appointment to see my doctor next week . I’m really pleased that I have joined this forum , I have received some great advise from all who have replied.

[Jess-UKMasto Partner in reply to Peleton]

Glad to hear you have a plan! That's great.

[Jess-UKMasto Partner in reply to Jess-UKMasto]

Also, I think this article (available in PDF for free) is a great one to share with a GP to help them understand how they can help you (though OMG about the url for it!) : watermark.silverchair.com/3...

[Peleton in reply to Jess-UKMasto]

👍

[Topnumpty in reply to Jess-UKMasto]

That link doesn’t work.Says session timed out.

Any chance you could retrieve it and post an accessible link, please, Jess?

[Jess-UKMasto Partner in reply to Topnumpty]

ashpublications.org/blood/a... (Look for the PDF link if you want to download it. The link to the PDF timed out, but I hope this one is stable!)

[Topnumpty in reply to Jess-UKMasto]

Thank you. That worked.

[Peleton in reply to Jess-UKMasto]

Thanks Jess , the link has worked .