You know the pain and itch and lack of relief – Hives

I was a gym rat, and a curvy girl.

My story: I was a gym rat, and a curvy girl. In 1987, at age 28, i noticed first, that I stopped sweating. And peeing regularly. I started breaking out in welts. Started as C-shaped wheals, then circles, always multiple spots, which often connected to become a massive hot/hard hive. I got them everywhere, especially where anything constricted even in the slightest way…bra, socks, shoes, waistbands. Even sitting in the “wrong” kind of chair, I’d get hives where the chair hit me. I couldn’t wear clip-on earrings because it caused my lobes to blow up. If I wanted to pluck my eyebrows, I’d have to do it on a Friday night so the swelling would go down before I had to go back to work on Monday.
I don’t have to tell you all how this changed everything I did. It was embarrassing. You know the pain and itch and lack of relief.
Over the next 9+ years, (and gaining 80 pounds) I saw rheumatologists, allergists, endocrinologists, and more allergists. They each prescribed their cocktail of meds, which only mildly dealt with the symptoms. Antihistamines, steroids, and blah blah blah.
I was desperate. I decided to try one last allergist (Gentlesk in Marlton, NJ). He took me off all meds and had me do a food challenge for a month, recording everything…what I ate, wore, all activities, and incidence of hives. After the month, I brought in the diary, and he noticed that I was getting the most hives premenstrually. Of course, I thought I was dying.
He said he knew who could help me. His friend, Dr. Jerome Check in Marlton, practically across the street, was a reproductive endocrinologist. (This is not going where you think it might be…)
I went to Dr. Check. He ordered me to do a water load test. I drank 10 cups of water in the morning and spent the next five hours upright, measuring my pee every hour. Next day, same thing, only horizontal.
I went back to Check, with my measurements. I was so proud. I couldn’t imagine that this was a test I could fail. He looked at the results and said, “these aren’t abnormal. These are MORBIDLY ABNORMAL.” I should have output 8 cups. I peed 3.
Years before, he had discovered how to treat the condition he called Idiopathic Non-specific Chronic Urticaria. Wtf.
He explained that the hives were caused due to my capillaries being too PERMEABLE. The fluids and toxins were being excreted into my tissue…EXTRA-vascularly, not INTRA. This was exacerbated with gravity…if I was upright.
Okay, what now? He discovered that a low dose — 10mg of Dexedrine, 2x a day. It’s an amphetamine. It’s a controlled substance. In NJ, he could not prescribe “off label.” I had to fill it in PA, which was a pain in the butt. BUT, I was hive-free within two weeks.
The Dexedrine tells your sympathetic nerve system to lessen the permeability of your capillaries. I began to sweat again, I began to pee regularly. And not a single hive. And in a year, lost the 80 pounds.
Please talk to your doctors, stop taking “bandaid” drugs. AND…DON’T give up!


Discussion


Veronica Jones
Do you have his number? Current location?

Debra Suplee Donahue
You should go to your doctor with this story!

Alahora Belcher
Wow, that’s amazing. I’m not sure my symptoms are similar enough to presume I have what you have. But I take on SO much water when I’m In a flare!!! But I’ve had CIU for over 30 years and I go into remission after a horrible year of hives. So, I’m not sure what to think. Im so glad you found that doctor ❣️

Jennifer Wilson-Loving
I don’t sweat hardly at all, even during workouts & I don’t urinate much in the morning… I feel like I might if I had 10 cups of water first thing tho 🤔

Kamila Staton
Amazing! I also get hives worse right before my period. The day before I start is the absolute worst!

Debra Suplee Donahue
Kamila, it’s a common presenting factor!

Tammy Gushue
That is an interesting finding! My daughter suffers terrible especially in the summer. I wonder if this could help her.
Thank you for sharing!

Debra Suplee Donahue
Heat definitely made it worse for me. I would describe my hives during my summer episodes as ANGRY.

Tammy Gushue
Debra Suplee Donahue Angry is an understatement. I tried explaining that to doctors but I think they really really don’t understand

Cochinillo Dulce
I hate to dispute. But I sweat in buckets. The first episode I could remember was getting hives on my lower toosh. I thought I was sitting on dirty seats when working out. But I sweat everywhere especially the toosh, head, feet and wow, underarms. And you know where I get attacked most? Those same areas. Cholinergic Urticaria was the first diagnosis. I have graduated to all types of urticaria now except aquagenic. No remission whatsoever. 25 years and counting.
The ones that scare me most: induced asthma and anaphylaxis from inflammation that result from urticaria.

Debra Suplee Donahue
Cochinillo, The sweat/pee thing was prevalent for me, but I didn’t have the asthma aspect. I’m a singer, and that would have wrecked me. We’re all so different…

Patti Nolan
You drank the 10 cups of water in the morning. What span of time did you consume the 10 cups? I tend to sip but I feel like you may have had to be more deliberate.

Debra Suplee Donahue
Patti, for the water load test, I drank all ten cups at one time. First thing in the morning.

Patti Nolan
Debra Suplee Donahue ohhhh! Ok.
I have noticed I have pretty low output.
And this whole thing began with a bad kidney infection.
This would be interesting to do.

Debra Suplee Donahue
Patti, wouldn’t hurt to try, right?

Cassandra Pandolfi
Patti Nolan mine also

Elise Rappoport
Very interesting. I got this about 3 months after the birth of my first boy. I have 4 now. One of the issues I have had since I had him and to this present day is chronic urinary tract and kidney infections although I’m better at stopping them getting as far as my kidneys now. I think my hives, which are autoimmune, started as a result of a perfect storm. Genetics – autoimmuney family, hormone shift, repeated infections. They thought I might have a fistula or an autoimmune bladder issue causing swelling, but the scope I had last year was perfect. 13 yrs on and when I’m in a flare my hives actually form around my groin and bladder – It’s like tea leaves. I know before I have physical symptoms.

Alisha Daniele Aydenk
Did you get periods of time before seeing the doctor who helped you where the hives ever went into remission? Curious as mine have for a period of time then boom! They start from nowhere

Debra Suplee Donahue
Alisha, I got hives ALL the time, but more premenstrually because of increased water retention. I am now 60, and no longer get my period. It’s impossible to imagine that this has been part of my life for 32 years.

Alisha Daniele Aydenk
wow, that’s a long time. I’ve been dealing with the hives for 15 years but did get remission of 7 yrs and 8yrs with nothing. Each previous episode lasted almost two years and every day during that time.
I was wondering if you ever got any let up like me during that time.

Debra Suplee Donahue
Alisha, absolutely no relief. Though I’ve been hive-free since ‘95, I had them daily, 24/7 for 9 years prior.

Kamila Staton
Debra, did you have dermatographia?

Debra Suplee Donahue
Kamila, yes. Sorry to say, it was my only party trick. 🙄

Alisha Daniele Aydenk
Debra Suplee Donahue I feel quite lucky compared to that though when it does hit it’s the 24/7 of it that’s so awful. Glad you found out the cause with yours 🙂

Debra Suplee Donahue
I hope others will find a doctor who will advocate using the treatment that worked for me. Doctors are hot in the pants to treat the symptoms, and aren’t curious enough to drill deeper. But it keeps the $$ coming in. 🙄

Alisha Daniele Aydenk
I will certainly mention it but here in the UK our healthcare service is an umbrella service so no choice to see different doc’s at different hospitals. Unless paying privately but it’s very expensive and so far I’ve not found anyone who specialises. I’ve got to wait until the end of August to see an immunologist who I’ve been told can help so I shall see and wait this thing out until then 😔

Petrie Gillian
I started getting low grade fever and night sweats before urticaria. Normally I don’t but when I have an infection or on steroids I do sweat

Susie Scala

When my hives were in full flare, I didn’t sweat nor get the usually hot flashes that I was getting pre-hives. Now that I’m in remission – thx to the AIP diet that I did for 30 days to re-set my immune system – I started sweating again and… hot flashes. I’d rather have hot flashes than hives!!!

Deborah Lee
I think this is my issue as I’m curvy too and drink lots

Kamila Staton
Good afternoon. I finally got my dr to prescribe this. How long did it take to see results? I started Friday, and felt better but today I broke out in a few spots. They aren’t as itchy as normal, but still have a rash….

Debra Suplee Donahue
Give it a few weeks!

Odyn Reekers
Kamila Staton did it work for you??

Debra Suplee Donahue
Odyn Reekers …she is now hive free. On Dexedrine.

Odyn Reekers
Debra Suplee Donahue so good to know! I will definitely talk to my doctor!

Debra Suplee Donahue
Be prepared to assert yourself. Most doctors aren’t open-minded enough to consider anyone’s assessment but their own.

Odyn Reekers
Debra Suplee Donahue can you tell me how much did you take and for how long? Did you take antihistamines too?

Debra Suplee Donahue
Im still on Dex…10mg 2x a day. No other meds taken!

Orville Hernandez
I am on doxepin 50mg at night only. I have less hives less frequent but still get them.

Shaina ‘Baruch’ Giller
Debra Suplee Donahue Thank you for posting your story! I have an appointment with Dr. Check on Monday and desperately hope he can help me. I live in NJ but am driving to see him in Pennsylvania. Thanks to your story I already did the water load tests so I am going in prepared with all the info! I hope he can help me…. thanks for sharing to at least give me some hope!

Debra Suplee Donahue
Shaina, I am sooo happy to hear this! Dr. Check will spend a lot of time with you, and he’ll go over all his studies and findings and whatnot. Allow at least an hour. It’s worth it! Tell him I sent you, okay? I told him about the group and he was shocked that there were almost 12,000 members! I hope that the dex will help you, so keep me posted!! BTW…what were the results of your WL test?

Shaina ‘Baruch’ Giller
Debra Suplee Donahue I’ll tell him you recommended him! I’m worried about being able to get the prescription without an ADD diagnosis. How hard was that part? I drank almost 80oz of water, when laying down urine output was 65oz, but standing up for the 5 hours it was 28oz. Not sure what that means but it doesn’t seem great…. praying so much he can help me.

Debra Suplee Donahue
Shaina, if you fill the prescription in his neighborhood, you shouldn’t have a problem. But if trying to fill in nj, it could be dicey, since nj has a law about filling it off-label. There’s a pharmacy nearby his office

Shaina ‘Baruch’ Giller
Debra Suplee Donahue hi! Saw Dr. Check today and he prescribed Adderall IR (instant release) 15mg twice a day. I was surprised because I expected the Dexedrine extended release and now I’m nervous I should’ve asked more questions about why he chose this one. He seems so smart so I assume he knows what will help me most…. funny enough he talked about you- not by name of course, but mentioned a patient who used to drive from cape may and I knew it had to be you! I started my adderall today and I really hope the instant release adderall works as well as the extended release Dexedrine worked for you! I’m so nervous… just praying this helps end this nightmare once and for all 😔

Debra Suplee Donahue
Shaina, I’m so glad it went well. Check is really smart, and he’s quite a talker, ain’t he? So, Adderall is basically the same composition and worked fine for me when I couldn’t get the Dex. Give it some time and please let me know your progress. 🤞🏼🤞🏼🤞🏼🤞🏼

Shaina ‘Baruch’ Giller
Debra Suplee Donahue I will let you know!! THANK YOU for sharing your story, I never would’ve found him (or his case studies). I don’t know if it will work for me, but for the first time in 6 months I feel like I actually have hope that just maybe it can get better. Praying for the best now that I saw him and got the meds. I’ll let you know how it goes! 🤞 🤞🤞

Debra Suplee Donahue
Shaina, thank you so much. I got quite a bit of backlash (and not just a little bitchiness) from members of this group, so I’m glad a few people gave it a go! Good luck!!

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