Anti-histamine recommendation without... - The UK Mastocytos...

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Anti-histamine recommendation without fillers etc?

Sneedle profile image
5 Replies

Hello Everyone,

My 16 year old daughter has suspected mast cell overactivity and has been trying out various antihistamines (H1) and has been on Famotidine (H2) for a week. So far Clarityn/loratadine has been the best. She is now trying out Benadryl/acrivastine which she has been told to increase to three a day. I can't tell from the patient info if it contains ingredients other than lactose, and haven't found (so far) detailed info online. Or maybe my brain has shut down trying to get to grips with everything going on for her. She has had to drop down to one A level this year, and is supposed to restart her two A level years starting from next September, but if she doesn't get well enough we don't know how things will be. Doctors are looking into migraine, epilepsy, mast cell excitability. She was healthy until about two years ago when all sorts of symptoms started. Thank you very much.

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Sneedle
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5 Replies
TTBluebells profile image
TTBluebells

I take oral syrup anti histamines- cetirizine and rupatidine. Your GP should be able to subscribe, if not I used to take piriteaze child syrup which is cetirizine hydrochloride and readily available in supermarkets etc . My specialist also said there is a compounding pharmacy in London that is able to make famotidine without unnecessary fillers, apologise I don’t know the name but might be worth looking into. I seem to tolerate oral syrups much better than tablets, I’m also unable to take medication with lactose, dyes and suspect I react badly to other fillers but have never been able to pinpoint which ones. I hope your daughter finds something that helps improve her symptoms x

Sneedle profile image
Sneedle in reply to TTBluebells

Oh thanks that's very helpful - a whole new insight as I hadn't thought of oral suspensions! Excellent idea, and thank you for your kind words.

Gladiator10 profile image
Gladiator10

Hi, so sorry to hear about your daughter, my son (now 18) is in a similar position, did your daughter's symptoms coincide with any illness/infection or after any school vaccinations?

Twinds profile image
Twinds

Hi my daughter went through a similar sort of thing being very ill between 15-18 and missing most of school though got 6 GCSEs. Very stressful all round. She was not well enough at all for college and doing A levels either. Had everything else ruled out via the doctors/hospitals to the point a consultant annoyingly said maybe it was psychological! Eventually after some persistence got her onto the same medications I take for mcas. Both of us take chlorphenamine (she has piriton liquid as no lactose) as others don’t work for us. I take Famotidine but she doesn’t. By far the biggest game changer for both of us was Sodium Cromoglicate capsules (up to 8 a day) a mast cell stabiliser. Gp was ok to prescribe if recommended by a consultant so we saw an immunologist who had some knowledge about mcas. Now 19 she has been really well this year with v mild symptoms and has just finished the first year of an Open uni teaching course. Not sure what your daughters symptoms are but my symptoms are very widespread and my daughters is very Gi based both reacting a lot to foods.She had a virus initially which we think may have triggered things off.

Hope your daughter improves with time with medications that work best for her.

Best wishes x

Minniepuss profile image
Minniepuss

Try Roseways Labs, they are a compunding pharmacy

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