Urticarial vasculitis returns

Hi 

Thanks for your advice re taking Zantac for H2 receptor function and PPI for relief of heartburn. I'm glad your children did so well in the competition Deb. It's great to get advice from people experiencing the condition rather than health professionals who are often being overly cautious to protect themselves and I say that as a health professional (RN)

I'm having a setback today.  The  vasculitic hives have returned.I am very upset as they are stinging, despite taking pain relief. They will annoy me for at least the next 10 days as they progress from stinging> burning> itching> sore> bruising lasting about 2 weeks. There are some pics of what my back looked like when I had the vasculitic hives about 2 weeks ago at http://bolandg.zenfolio.com/p352969536 ( can't seem to put a link in here)

  My back was just starting to heal up and now I will be back to square 1. Today  I also have vascultic hives on the back of my neck,arms, abdo and legs. I seem to have 2 different but related condtions:  chronic urticaria and occasional EIA and the very nasty urticarial vasculitis. Do any other forum members have UV as a symptom of MCAD.

Changes prior to this new development:

started Pantoprazole ( Protonix Somac) yesterday. So far I have not experienced the severe GERD that I had, so the PPI must be working
reduced Deptran from 100 mg to 50 mg
Had some jelly with food colourings. I don't seem to have sal. sensitivity. My triggers seem to be change in core body temp.

Any thoughts on what might have caused this?

I still have cholinergic hives after every meal but  can live with that.

Current meds: 1mg prednisolone morning (slow taper 1 mg since about 1wk ago),  Non sedating anithistamine morning, small dose sedating antihistamine morning, Zantac morning, PPI morning, sedating antihistamine and Deptran before bed. I have been playing around with meds as I am trying to find the most effective and least expensive combo.

Anyway this is a bit of a self indulgent rant.

Patersonic. I have an appointment with Dr Wei on the 16th April late morning. Just thought I'd let you know in case you are in Melbourne that day.

Thanks in advance

Gerri

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Post to ICUS forum

I have had anaphalactoid type reactions in the past to the following products, but this was before I developed CU (only had that for about 2 months)

 

Weight loss products:

Optislim

protein shake for dieting( forgot name)

Ovaltine Low joule variety

I thought it might be the maldextrin in these products or possibly soy. Needless to say I haven't had them since experiencing these symptoms about 18 months ago.

 

and cosmetic products as follows

make up remover wipes

sunscreen

lipsticks

hair gel or fudge

 

The symptoms were itchy all over, especially around the eyes, cramping bowel spasms and/or diarrhoea, dizziness/ low BP, tingling all over and muscle pains in arms and legs. I also get these symptoms from exercise too but not all the time.

 

Just thought I'd add this because someone may be able to enlighten me further

Post to mast cell disorders forum

Hello back again.

 

I am in e-mail contact with Dr Wei now and he has sent me a request to have the following blood tests which I have had done.

 U&E

LFT

FBE

tryptase

Coeliacs

chlamidia pstiticossis (? sp)

strongoloides

cryoglobulin

cold agglutinin

E&A

ANA

ANCA

RF.

 

The pathology lab said that it may take up to 2 weeks for some of the results to be completed.

 

 I have been playing around with my meds and am having some success. Since taking Doxepin 50 mg at night I no longer have the stinging and  burning from the mosquito bite like hives which is a great relief.

 

Today I have taken Zyrtec 10 mg at 7 am, 9 am, 11 am, and 4pm. I have not taken any sedating anti -histamines. I had a small flare of all-over hives after lunch. I've also taken 2 lots of Zantac 150mg. I'm tapering off prednisolone down to 6mg /day.

 

It feels so much better having some control. I feel almost normal except for the dry mouth, blurred vision, poor balance and occasional brain fog.

 

My skin reaction images of are at this web address http://bolandg.zenfolio.com/p3529

 

I'm curious to know whether anyone has flares from the very act of eating regardless what the food is, because this is what happens to me. My system has to be saturated in anti- histamines to prevent an over all break out of hives about 30mins - 45 mins after eating.

 

Just to remind you my symptoms are chronic urticaria (every day since 21/12/09), cold-induced urticaria (first observed when developed urticaria after swimming Dec 09), exercise-induced anaphalactoid reactions ( I now realise I've been having them off and on for the last 10 years or so)

 

Well that's it for now

 

Gerri

 

Posted to urticaria forum 26th Feb

I am trying to schedule my doses of meds to prevent skin outbreaks
Currently I am tapering down from 10mg prednisolone. I don't think it is helping much and I want to come off it.

My current regime and symptoms are as follows
Wake up in morning. No cholinergic urticaria. I usually have about 6-8 vasculitic `insect bite like' eruptions which have erupted overnight. They will be scattered over my body. They sting excruciatingly. They sometimes wake me at
night. The stinging is unbearable and I have to get into a bath. Fortunately
most times I sleep through and just wake up in the morning with them. I also have many of these eruptions from previous days including some bruises and some scabbed, but they only really sting when they are new.

The ? cholinergic hives come up as soon as I start moving around.
I have been taking my tapering dose of prednisolone on getting up about 8.30 am currently 7 mg for 2 days.
Initially the prednisolone carried me through for a few hours and then I took my
Z/Z combo. But I am having to take that earlier now. So I probably take the Z/Z
about 9am.

I am having major cholinergic skin reactions after eating anything. So now I take 1 Avil (chlorpheniramine) about 11am 1 hour before lunch. I still have a reaction after lunch no matter what I eat so I really need to boost my antihistamine load so that it peaks at lunch-time. I don't think I could take a
higher dose of sedating AH so I'm wondering if I should take 2 Zyrtec in themorning. I have also been prescribed Doxepin (deptran) but I'm not taking that at the moment. I'm not sure how long it takes for deptran to reach its peak
levels .
I have been taking the 2nd Zyrtec after lunch.

Then a Avil (chlorpheniramine) before dinner and maybe another Avil after dinner
if flaring.
I usually take phenergan 25 mg before bed.
I'm just looking for some comments on my meds
The local GPs don't seem to want to start me on any mast cell stabilizers. They want me to see a specialist first, but I cannot get an appointment until the endof March.

Unfortunately it is not easy to get diphenhydramine in Australia for some
reason. The Benadryl Night time cough elixir has another active ingredient init. I rang epharmacy today and they have it in 50 mg tabs so I will get some tomorrow.

Fortunately I am semi-retired and apart from 1 day a week when I have a short term job I can experiment with meds at home. I am also a nurse so am aware of issues regarding meds.

Thankyou in advance for any comments

Gerri

Fine-tuning meds

I am trying to schedule my doses of meds to prevent skin outbreaks

Currently I am tapering down from 10mg prednisolone. I don't think it is helping much and I want to come off it.

My current regime and symptoms are as follows

Wake up in morning. No cholinergic urticaria. I usually have about 6-8 vasculitic 'insect bite like' eruptions which have erupted overnight. They will be scattered over my body. They sting excruciatingly. They sometimes wake me at night. The stinging is unbearable and I have to get into a bath. Fortunately most times I sleep through and just wake up in the morning with them. I also have many of these eruptions from previous days including some bruises and some scabbed, but they only really sting when they are new.

The ? cholinergic hives come up as soon as I start moving around.

I have been taking my tapering dose of prednisolone on getting up about 8.30 am currently 7 mg for 2 days.

Initially the prednisolone carried me through for a few hours and then I took my Z/Z combo. But I am having to take that earlier now. So I probably take the Z/Z about 9am.

I am having major cholinergic skin reactions after eating anything. So now I take 1 Avil (chlorpheniramine) about 11am 1 hour before lunch. I still have a reaction after lunch no matter what I eat so I really need to boost my antihistamine load so that it peaks at lunch-time. I don't think I could take a higher dose of sedating AH so I'm wondering if I should take 2 Zyrtec in the morning. I have also been prescribed Doxepin (deptran) but I'm not taking that at the moment. I'm not sure how long it takes for deptran to reach its peak levels .

I have been taking the 2^nd Zyrtec after lunch.

Then a Avil (chlorpheniramine) before dinner and maybe another Avil after dinner if flaring.

I usually take phenergan 25 mg before bed.

I'm just looking for some comments on my meds

The local GPs don't seem to want to start me on any mast cell stabilizers. They want me to see a specialist first, but I cannot get an appointment until the end of March.

Unfortunately it is not easy to get diphenhydramine in Australia for some reason. The Benadryl Night time cough elixir has another active ingredient in it. I rang epharmacy today and they have it in 50 mg tabs so I will get some tomorrow.

Meds today

9 am 8mg pred

10 am Z/Z

11 am Avil

12md Zyrtec

1.30 avil

5 avil