I started to experience a lot of itching mostly within the evenings and nights.

Hey all, I’m thought I’d share my very LONG story for the off chance that someone else can relate

I moved out of home when I was 20, I was under a lot of stress at the time with making ends meet and family matters.
After about 3 weeks after moving I started to experience a lot of itching, mostly within the evenings and nights.
At first I thought it could have been allergies as my housemates had a cat and although I had never had a reaction before, it was a possibility.
This itching continued on for a good 1 1/2 years, I tried seeing if it was specific foods I was eating, checked the washing powder I was using, and I even got the occasional joke that I was ‘allergic’ to my housemates. Nothing that I did in everyday life apart from moved houses had changed (and as my family only rented we did this a lot anyway)
Eventually it got so bad that I began to not only get big itchy red rashes, but also bruising all over my body from how much I was itching. Being a stubborn person with any kind of sickness I finally decided I’d take the advice of friends and family to go and see a dermatologist.
I went to 2 different dermatologists monthly for a 9 month period, spending money I honestly couldn’t afford at the time, to be told by them to ‘go home and rub moisturizer on it and use elocon cream’ every month I went back it was worse and worse and they kept saying the same thing. It got so bad that I was only able to get 1-2 hours of sleep a night if lucky, and was in hospital at least every 2 weeks to be given morphine for the pain, which also put me straight to sleep for a few hours.
I hit a very dark time, I was telling my partner at the time that it would honestly be much simpler to just kill myself to end the pain, because I didn’t know how much longer I could take the pain. I was doing everything I was told by the doctors and nothing. I was on a lot of steroid tablets to try and lessen the itching but I would only get about an hours relief before back to more itching.
It wasn’t until a massive breakdown in front of my dermatologist, in which he said ‘I don’t know what is wrong with you and I can’t treat you’ that led me to try one more dermatologist.
Within a 15 minute consultation he quickly send me for a biopsy and took some skin for testing, 2 days later I received a call for him to tell me it was an autoimmune disease called urticaria, and started me on Cyclosporin immediately. After 5 days I could already feel the medication doing good, my sleep patterns began to change to 4 hours a night, and I had more energy, but most importantly not as much itching.
A year later I moved on to the medication Methotrexate, and have now been on it for just over a year.I am now 24, and I take 20mg of it once a week, my sleeping patterns are back to normal, and my skin has almost completely cleared. I still get the odd itching around the torso after being in a stressful situation, but I’m quite happy that it is mostly subsided. I live in NSW, Australia, and have Dr David Cook to thank for actually listening to my plea and doing something about it


Discussion


Yvonne Visée Clohessy Glad the mexotextrate is working for you. I’m on cyclosporine and am dosing down and am hive free. I can totally relate to your story, glad you found something that works.

Sue Elshire Hargrave I am so sad that you had to go through all of this. We have somewhat similar stories, although our ages are different! (I’m “older”.ha! 56!) My hives started just over 11 years ago, and I went through doctor after doctor. Nightmare. Unfortunately, none of the drug possibilities worked, and I still have hives. Within our “disease group”, that is a story that is echoed quite often. It seems the medical community is now getting some education, and more are getting the help they need! I am so happy that your story ends on a positive note.

John Thurston Wow, another story showing just how desperate this condition can make us. Thank you for sharing and for finding us all, and thank you for not ever taking that route to the end, we’d have never have got to meet you and got inspired by you. Bless you. I’ve never been prescribed Cyclosporine – in my 30+ years of CU. You’ve now got me researching it more – especially now I have psorsisis as well. I ask others how they fair using the drug

Angie Colt Hultgren I started cyclosporin about 28 days ago. I started with 100mg twice a day. Hives better, but not gone. I recently increased to 200mg in the morning and 100mg at night. Hives not so good in the morning and then get a little worse about an hour or two after being awake. I was hoping this drug would get rid of them. So frustrating. Blow much does a person need to be on to get them gone??

Yvonne Visée Clohessy I started on 200mg cyco (100 in am and 100 in pm). I also take zyrtec 50mg, singulair 10mg, doxepin 10mg.

El Fraser Could not tolerate cyclosporine – too many GI issues.

Cathy Colston Noticing a trait to all these stories all the good docs are international lol. Sorry for the humor. I haven’t even heard of these meds but seeing my doc and going to ask about them.

Cathy Colston Thanks I have been reading a lot of stories in the last 2 days because I’m finally getting info on this – not from my doc but from all of you. It’s great.

Yvonne Visée Clohessy I have an awesome Doc, but it doesn’t seem like everyone else does.. It’s heartbreaking to read the stories especially now that I’m hive free. But I can so relate.

Cathy Colston I’m so happy for you!! I spent the first 2 years thinking it was my shoes when my feet would swell. And then the last 2 years at docs saying I was depressed and anxiety issues..duh. Finally allergist but I am not confident with him now after reading all these stories.

Yvonne Visée Clohessy Yep, that’s how a of Drs lot feel – anxiety, depression. Hope you can find a dr who can help you.

Maggie Maye I feel like you, Maureen, I would be lost without you all…you get me through….never be sorry, cause we get it! {{hugs}}

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