Mast Cell Disorders Forum - Greetings from Scotland

cutty sark

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Greetings from Scotland
04/25/12 at 05:55:40

Hello all

My name is Lynne. I was diagnosed around ten years ago. Have had many tests and been on a variety of medicines since then. Long story short, I had an infected insect bite on my forehead at the end of last year which set off an 'episode' resulting in face swelling which was treated with steroids. Once this had been dealt with I was sent for a tryptase test which showed a level of 147 - new strategies were put in place to deal with this. These strategies included treatment with UVA1 light - I started this a couple of months ago (two days a week) and after 15 treatments it has reduced the tryptase levels by 20. This treatment is carried out at Ninewells Hospital in Dundee (which is a teaching hospital) and overseen by a Doctor Dawe. This is the only machine in Scotland and as far as I am aware there are only another two in the UK (Leeds and London). I'd be interested to know if anyone elsewhere is receiving this treatment and what their outcomes have been.

State of play at the moment: I have multiple crush fractures in my spine (osteoporosis related) have recently been prescribed bisphosphonates for this. The mast cell 'lesions' are 90% coverage (including the face). Other medicines prescribed are ketotifen and singulair and I also take vitamin D and magnesium supplements.

I work full time for a human rights and equalities NGO, this can sometimes be difficult as I am usually exhausted by mid afternoon but my colleagues work around this with me so that if needs be I can take a couple of hours rest in the late afternoon them work in the evenings.

That's about it, folks.

Lynne

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Anaphylaxing

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Re: Greetings from Scotland
Reply #1 - 04/25/12 at 09:03:43

Welcome Lynne!

My parents are from Glasgow, but I live in Canada. I love your country!

I am so glad you've found something that helps. I have not tried the UV light, but do you have UP? I do not have that.

Have you ever tried an H2 blocker like ranitidine? Great that you're on an H1, mast cell stabilizer, and antileukotriene

Do you still have symptoms? What are you triggers?

Look forward to getting to know more about your story!

Hope you continue to improve!

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Greetings from Scotland Reply #2 - 04/25/12 at 18:02:11 Hi Lynne, and welcome to the forum! Sorry to say I don't know anything about your treatment, but I hope someone in the States has. Do you know if it works only for people with UP rashes or also for others? Your reduction in tryptase is remarkable. Have you had a positive bone marrow biopsy, too? Hope you continue to improve!
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cutty sark

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Re: Greetings from Scotland
Reply #3 - 04/26/12 at 09:51:47

Thank you for your responses, ladies.

I have UP/TMEP. Like most here I've tested myriad medicines over the years. The cromoglycate was more bother than it was worth in my case and to be honest unless I am having an 'episode' I can live with the stomach problems.

The UVA1 light has shown good results in some countries on mainland Europe (Germany and the Netherlands in particular). It differs from UPA light treatment in that it penetrates much deeper so can reach well below the surface cells. For some it has shown to not just stop degranulation (of some) but also to 'kill off' some mast cells. It looks like this may be happening for me but I will have to have another tryptase in a couple of weeks to confirm as the lowered level could be just fluctuation. I'll keep you posted.

I had a positive bone marrow test at diagnosis. I still have all the symptoms but manage them as best I can. The triggers list grows as time goes on - like most, I know a new one when I have an 'episode'. Main ones are alcohol, NSAIDs, lamb, raw fruit (but can drink fruit juice and eat some cooked such as tomatoes) beans and pulses, nuts (apart from almonds) changes in temperature, stress, walking distances (causes a drop in blood pressure so makes me a bit dizzy). Fatigue and bone pain are the worst for me as they can affect my work.

Forgot to metion yesterday that I also carry an Epi-pen.

Anyway, all that said I still try to live life to the full, I travel a lot with work and we holiday overseas when we can get the time. We love music so we still get to as many gigs and festivals as we can (lots of small family 'roots music' festivals in the UK these days - so that's do-able!) Infact, Anaphylaxing, we are off to see one of Quebec's most famous - Leonard Cohen - in Dublin later this year! Where in Canada are you? We were on Vancouver Island a couple of years ago and spent some time with a First Nations family from Campbell River who did some art work for us.

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Re: Greetings from Scotland
Reply #4 - 04/28/12 at 11:39:53

Oh wow!

I'm on Vancouver island.

I used to LOVE travelling but haven't been able to yet since getting sick. Need to sort out what's safe to eat and hopefully stop reacting to all smells.

the UK was one of my favourite places to go!

Enjoy Leonard Cohen!

I get Oral allergy symptoms to many raw fruits and veg but was fine with cooked and juice like you said. Haven't reintroduced those ones since getting sick.

Glad you've found something that helps you

glad you carry an epipen

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Greetings from Scotland Reply #5 - 04/28/12 at 12:45:58 Forgot to mention that I always hated the taste of Lamb; then forced myself to eat it once and it was like having the stomach flu. Ick ! Plus I love sheep, so don't like the thought of eating them
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cutty sark Tutor Offline I Love YaBB 2! Posts: 37	Re: Greetings from Scotland Reply #6 - 05/05/12 at 04:23:17 Hello Ana Apologies for taking so long to reply! We stayed in a few places on the Island. I liked Nanaimo, very bohemian. The Museum in Victoria is one of the best I have visited, their First Nations people exhibition was fantastic.
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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Greetings from Scotland Reply #7 - 05/05/12 at 08:09:26 Cool! I heard recently that museums can be a good place for scent sensitive people because of the controlled air quality so I was thinking of trying Did you find that? Are you smell sensitive?
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iamnotalone Mentor Offline I Love YaBB 2! Posts: 296	Re: Greetings from Scotland Reply #8 - 05/05/12 at 15:52:38 OK Ladies; I'm out've the loop--- Do the UVA1 help while flaring, or as a preventative/maintenence treatment for TMEP ? I asked my "new" allergy/immuno recently if the chronic hives I had for a year staight, (before TMEP diagnosis) was CU or UP- He said it was a "precursor of the TMEP". I still have a big ? lori
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Re: Greetings from Scotland
Reply #9 - 05/07/12 at 05:46:46

Anaphylaxing wrote on 05/05/12 at 08:09:26:

Cool! I heard recently that museums can be a good place for scent sensitive people because of the controlled air quality so I was thinking of trying

Did you find that? Are you smell sensitive?

Hi Ana

Thankfully, I don't have that problem. So probably not the best person to comment on that! The cool air does work for me though.

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Re: Greetings from Scotland
Reply #10 - 05/07/12 at 05:50:16

iamnotalone wrote on 05/05/12 at 15:52:38:

OK Ladies;
I'm out've the loop--- Do the UVA1 help while flaring, or as a preventative/maintenence treatment for TMEP ?
I asked my "new" allergy/immuno recently if the chronic hives I had for a year staight, (before TMEP diagnosis) was CU or UP- He said it was a "precursor of the TMEP". I still have a big ? Huh

lori

Hi Lori

Basically it works to neutralise cells (in some not all people) . You do also get a darkening of the skin with it so that helps reduce the look of the lesions and 'rash like' damage of the TMEP. My neck and chest is bright red all the time (so I have covered them up for years) but the tratment has helped reduce that.

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