Have any of you guys had great success with something else?

I have never had sensitive skin or allergies to anything

Hey guys I’m new to the group and to be honest had no idea so many people are dealing with the same things I am. I just wanted to share my story and see if others have tried or had success with the same meds I have.
My hives started in September of last year and I don’t think I went a single day hive free until December. It was really starting to get to mentally and of course physically. I’ve never had sensitive skin or allergies to anything. For months doctors kept telling me it was something I was allergic to or an autoimmune disease, but deep down I knew I wasn’t allergic to anything and tests were negative for everything else. So finally I started researching my self and found a drug called Doxepin that had worked for others dealing with the same condition. Went to my doctor and he agreed to put me on it and within 4 days my hives were completely gone. While this medication turns me into a zombie I’m not breaking out in hives! Im now where I only have to take it when I start breaking out and it stops it from getting as bad as it was last year. I still get angioedema and sometimes that can last 1-3 days. I’m finally coming to terms that will probably be an ongoing thing throughout my life but it’s nice to know I’m not alone. Unless you’ve experienced this you don’t understand and sometimes it’s hard to talk to people about it. Have any of you guys had great success with something else? My next step is to try a drastic diet change to see if that helps anything, for I don’t want to have to rely on this medication every time i break out!

Discussion

Julie Hubbard Navratil
Research the AIP diet in the group. I’ve been doing it for over 8 months now. Hive free and off all meds. Lifestyle change for me.

Kendra Palmer
Julie Hubbard Navratil Thank you, I will research it!

Kim Damino
I’m on Dapsone. I have not had a breakout since 😁 but I still have to stay away from tomatoes!

Sally Hill
Kim Damino Kim how long have you been on Dapsone? And how ling did it take to see results? I just did the blood work to chk my enzyme to see if i can go in it.

Linda Baker-Wolfgram
Xolair has been a miracle for me.

Kendra Palmer
Linda Baker-Wolfgram That’s a last resort for me. I have great success with this but it’s so expensive.

Linda Baker-Wolfgram
Kendra Palmer yeah, I agree. I saw my allergist yesterday and he told me the bill is over $40,000 a year. There is no geriatric or ever will be. Crazy disease all around.

Linda Baker-Wolfgram
Samii Perkins very fortunate that I’m on Medicaid and don’t see a bill.

Samii Perkins
Linda Baker-Wolfgram you’re lucky!! I tried getting approved for 2 years before finding out about the copay card!

Kendra Palmer
I meant to say I have HEARD of great success with this.. not personally tried it but i think after insurance i would be paying like $1200 each injection which is doable but also the side effects kind of scare me as well lol.

Diana Dillard Keeton
I agree xolair is awesome! I have to do every 2 weeks though and still do Doxepin and several other meds for it. I have other skin things going on. AU & SU. I have to take benadryl before showers and bed to keep puritus down. But if it wasn’t for xolair I would have done myself in by now. I’m on Medicare through disability and tricare as secondary insurance and haven’t had to pay anything. Been doing them for a few years.

Julie Tomaino
I looked similar to your pics and had the same experience with hives being there everyday for ten weeks and the docs telling me the same thing. But I tried a drastic diet change first. I went totally plant based only eating fruits vegetables beans nuts and seeds. No coffee no sugar no dairy no meat no processed anything. My hives went away after about two weeks and then I started incorporating things back into my diet. I found that dairy causes flare ups although not as bad as before I went totally off dairy and have been hive free since. I should say this entire time I was taking rupall a prescription antihistamine which wasn’t working at all before the diet change so now that they’re under control my next step is to taper myself off of that and see what happens. All of this to say diet changes worked for me! I hope they work for you too!

Kendra Palmer
Julie Tomaino I think this is what I might do next. I eat awful and this will definitely be hard for me..

Julie Tomaino
It’s hard but my motivation was I can’t live with these hives forever this way – they were there ALL THE TIME so I was willing to do anything. When it got tough i told myself the diet wasn’t gonna be this strict forever and thankfully it wasn’t.

Kendra Palmer
Thanks for sharing. That’s how I need to look at it as well.

Phyllis Scafetta Wozniak
I’m itchy just looking at you! Feel better

Crista Campbell Martin
I’m planning on asking my doctor about Doxepin at my next appointment. How are the side effects?

Kendra Palmer
The only side effect I have is I am very very drowsy throughout the day. I try to take it early in the evening so its not as hard to wake up in the morning. When I had breakouts for 3 months straight this is what got it under control. Now i only take it when necessary for a few days here and there. It took 50mg to get my hives at their worst to stop now I take 25mg. Start on a low dose if you can.

Crista Campbell Martin
Thank you!

Dana McGowan
Crista Campbell Martin …… Doxepin made me feel like I was High all of the time. Stopped taking it after a few weeks because I couldn’t function properly.

Kendra Palmer
Dana McGowan I have never felt high, just very drowsy. How many mg were you taking and at what time of the day??

Crista Campbell Martin
Dana McGowan That’s good to know. Thank you!

Den Scorsh
Hi Kendra. I too have had this come on me suddenly in September of last year. I battled it until recently I went to see an allergist and immunologist who tested me for everything and nothing came back except elevated CRP which she said is inflammation because of the hives. She gave me hydroxizine and it has helped me immensely. That with Zantac made a big difference. I still get hives/Anglo but in much less amounts and they clear up much quicker. It made me loopy at first bur after the first week I was much better. Wishing you good luck.

Kendra Palmer
Denise Conti Scorcia Thank you!