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I is back!! Now I Vinnie101! (Read 2424 times)
vinnie101
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I is back!! Now I Vinnie101!
10/14/12 at 08:30:14
 
Hello everybody! I've been off radar for over a year now I think(?),but am back now,not so much with a bang, but a whimper!!! My health is much the same I'm affraid. Good news is that I've finally been discharged from the oncology clinic & am cancer free! Cheesy. Faslodex injections have stopped (from last Feb in fact!).
 Unfortunatly, the other problems I have are still being a pain in the backside! I'm still looking for answers about my itchy skin,sickness,bone pain. Had some tests, but they inconclusive! ALP levels still way too high.
They haven't ruled out some sort of mast cell disease, but are being cautious. Heres a full list of my meds:
Levothyroxine 150mcg once daily
clonidine hydrochloride 50mcg twice daily
esomeprazole 40mg once daily
domperidone 10mg three times daily
morphine 30mg twice daily
monteleukast 10mg once daily
ranitidine 150mg twice daily
fexofenadine 180mg once daily
cetirazine 10mg three times daily
amiltryptaline 25mg
brycanil turbo haler when needed
symbicort turbohaler 2 puffs twice daily
tiotropium 18mcg once daily
buscopan 10mg when needed
loperimide 2mg when needed
paracetamol 500mg when needed
oramorph 20mg/1ml when needed
I don't think I've forgotten anything! They have ruled out the morphine causing the itchyness by the way! & tomorrow I start on something called Dapsone. Huh
Thnx in anticipation of replies!
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DeborahW, Founder
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Re: I is back!! Now I Vinnie101!
Reply #1 - 10/14/12 at 09:32:04
 
Hi Vinnie,

Welcome! Although you have been a member here for over a year, you haven't posted before today. So, we don't know your background and it will be difficult to make suggestions without knowing about you. Why don't you write us a post describing what your medical condition is, what type symptoms you have, and what your questions are for us? I am sure that you will receive plenty of answers then!

Congratulations, by the way, on being Cancer free!!!!!! Smiley
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Joan
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Re: I is back!! Now I Vinnie101!
Reply #2 - 10/14/12 at 19:15:07
 
Welcome back, Vinnie, and happy to hear about your being cancer-free, too!  If you decide to post more info, here are some questions for which you might want to post answers.

Do you have IgE allergies?  How did they rule out morphine as the cause of your itching?  Has anyone ever suggested ketotifen or gastrocrom to you?

If you've had a test, what was your tryptase?  Did you have any abnormal blood tests of any kind?
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Re: I is back!! Now I Vinnie101!
Reply #3 - 10/16/12 at 10:57:42
 
No IgE alergies that I know of! Tryptase was elevated when tested, but don't know by how much!
My problems started really when I got breast cancer. The treatment I had was 'full on' so to speak! (this was 7 years ago,by the way). The chemo lasted 9 months,& was followed by 18 months or so of Tamoxifen, then because that made my bones ache so much,I was put on monthly Fasladex injections(these stopped in Jan this year), & for 1 year, Zoladex(this was to shrink my overies to next to non!!) Oh, I forgot to say that I had 18 radiotherapy sessions after the chemo. This seemed to lead to my thyroid gland finally giving up!
 Anyway, all through my treatment I found it hard-very tiring & debilitating. Eg, when I was having chemo,I'd have it on a tues & by the Sat, my bloods would be so low(neutrophils infact nil!), soI would find myself in hospita!  Anyway, all that left me exhausted for months after. To be honest,it still not good.
 So, go forward 4-5yrs( these skin type problems started 2-3 years ago) If only it was just itchy skin! I started to get bad headaches, stomach pains, severe bouts of diarrhea & vomiting(bad enough to be hospitalised),aching joints, chronic fatigue & skin that, especialy, when touched would flare up puce colour, itch like nothing I'd ever experienced before! Firstly I was seen by a GP, who takes a special interest in dermatology. He prescribed Dermacool(aquias cream with menthol crystal in it, & low dose antihistamine. It got worse, & my asthma started to deteriorate, so was sent to the chest clinic, where my meds were tweeked big time! He thought the things were probably related, & he was the one that put me on the Singulair. He also suggested that I be seen by a consultant dermatologist. He did do some skin patch tests to see if I had any allergies, but that only showed tree pollen.
Meanwhile, all these things are not improving! So, after a wait that seemed forever, I saw a Dermatologist, who put me on the Fenofexadine 180mg, cetirazine 10mg x 3 daily & Ranitidine 150mg twice a day. I saw her at my local hospital, & because she'd never seen whatever it was so bad, she sent me to Manchester to see Dr Marsland, who said that the urticaria( with accompanying severe dermagraphism)really was bad. He did some blood tests(?) and  a 24hr urine collection(is this how they found that the tryptase levels).
He said to try uvb light(didn't work)PUVA( had 2 goes at it & no,it didn't work,but I did get a nice skin colour!!!) & now I have started to take a drug called Dapsone. Its a sulfonamide type antibiotic that was/is used in the treatment of leprosy! My starting dose is 50mg increasing upto between 200-300mg. It works by preventing the mast cells from disgorging there load so to speak. I still struggle with all  other symptoms at present on 7 off. I've asked the question whether this is a mast cell disease & the answer is vague! Obviously my mast cells are very over active & drop there load at the drop of a hat!!!
Some of the triggers are alchohol, heat, certain smoked cheeses(!). The heat trigger is a bit unfortunate for me,as ever since my chemo, I've suffered drenching sweats day & night! & it doesn't matter what the weather is either as far as these sweats are concerned, evan at minus 10 I looked like I'd just got out of the bath- fully clothed mind-!
Anyway, I think this is enough to be going on with!!!
ps. I forgot to mention the Nasonex steroid nose spray!!
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Re: I is back!! Now I Vinnie101!
Reply #4 - 10/17/12 at 05:55:21
 
Did anyone do a biopsy on your urticaria?  Urticaria pigmentosa can trigger mast cell degranulation and the release of enough mediators to cause systemic symptoms.  I can't tell from what you wrote whether you have that diagnosis or not.

Because of the complexity of your medical situation and multiple medications, I'd recommend going to see a doctor who is an expert in treating mast cell disorders.  I don't know who is nearby, but maybe someone else from there will know and will jump in here.

Hope you find someone who knows enough about this to help.

Joan
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Re: I is back!! Now I Vinnie101!
Reply #5 - 11/03/12 at 12:00:58
 
sorry been off site for so long, just not feeling very well. The answer for the morphine is that I came off it(under strict medical super', so to speak!) & the only thing that happened was an increase(BIG time)in pain! So at least I can take it now & now that its not that!!!
 I've now started the dapsone, & to be honest. not a lot is happening! Other than some strange liver enzyme stuff!!! But only been taking it for 3 wks.
 Nobodies said anything about biopsing(?) my urticaria., they just appear to be treating the symptoms & hoping that it goes away!!! I have had some very basic tests,but because they've come back either negative or ?, & I think because I do have quite a complicated medical history, as I say, they treating the effect & maybe not the cause!!
 Also I'm based in the UK, & you know although the NHS is fantastic, it does sometimes take time & effort to get things sorted1 Tongue
 Thanx for your thoughts & help. Wink
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