hi I have had these hives almost every day for 18 months and dermatographia

I have had these hives almost every day for 18 months and dermatographia

I take Dexedrine 10mg spansules twice a day

I hate to jinx myself, but I want to thank Debra Suplee Donahue. Her advice about Dexedrine has helped me become hive free. I post this in hope it might help others. I take Dexedrine 10mg spansules twice a day and have started a supplement to detox my liver and have made it 2 weeks with no hives. Mind you I’ve had these hives almost every day for 18 months and dermatographia because of it covering my back, stomach, chest, neck, legs, arms and sometimes face, hands and feet. I’m so thankful you told your story! Thank you so much! It feels awesome to not be itching. I hope this continues!!!! I am editing to mention that my hives are terrible right before my menstrual cycle and I started my period and still no hives…. AMAZING FEELING! Another edit to mention that I also thought I had Reynauds because hands would get white and go numb and that has stopped as well.


Discussion


Linda Cooper Daubert
Isn’t that dangerous to take?

Kamila Staton
Linda, my doctor is monitoring me. It’s similar to Adderall. I haven’t had any side effects other than weight loss. It can sometimes raise blood pressure but mine is low normally 100/68

Debra Suplee Donahue
Linda, though Dex is an amphetamine, it’s a very low dose, only 10mg 2x a day. In the first week, I was just a little speedy, but it’s used on-label to treat ADD/ADHD too, and because I am also that, it serves double duty.

Debra Suplee Donahue
Ive been on it since 1995, btw, and it’s like taking a vitamin, except that vitamins won’t make you hive-free. 🤪

Linda Cooper Daubert
Debra Suplee Donahue my son takes adderrall for add, who prescribed this for you?

Debra Suplee Donahue
Adderall was prescribed to me when I couldn’t get the Dex, which was only a month lapse. It worked okay, but I was brand loyal I guess, and didn’t want to take my chances! My doc is Jerome Check in Mt. Laurel NJ. He’s the one that did the studies

Linda Cooper Daubert
Debra Suplee Donahue can you take it if your on blood pressure medication

Debra Suplee Donahue
Linda, yes, of course. I have high BP and take 30mg lisinoprol daily. My BP is perfect on it.

Linda Cooper Daubert
Kamila Staton who proscribed yours?

Kamila Staton
Linda, my family doctor, but I already had an ADHD diagnosis. I had just been off meds for 2 years.

Debra Suplee Donahue Bingo!

Debra Suplee Donahue
I sit here in tears reading your story. I have tried to help people here by suggesting the Dexedrine component, and have been met with mostly skepticism and distrust of my assertions. But today, you’ve made my day. If I have helped just one soul, I’m happy. I suffered for a decade. It was soul-wrenching painful decade, and I am so glad you’ve found relief! I hope others will consider this treatment. Keep me posted about your situation…i.e. weight loss and your health in general!

Catherine Isiminger Sandy
Looked it up..sulfa drug, I’m allergic

Kamila Staton
Catherine, it’s not a sulfa drug

Bella Mason
What supplement have you been using for the detox?

Kamila Staton
rejuvica health vitaliver

Bella Mason
Kamila Staton where can I get that?

Debra Suplee Donahue
Bella, it’s a controlled substance, and restrictions depend on the state. I’m in NJ, so it’s tight, and I had to get the prescription ON-label, which meant a diagnosis of ADD, which I am anyway. You might be able get the prescription off label, since the FDA has largely and arrogantly ignored CIU and its sister afflictions. Good luck. Happy to help you further if you need! 🤞🏼Update: oops, I thought you meant the Dex

Sue Elshire Hargrave
Debra Suplee Donahue #admin We are all wishing for a cure, and all hoping that what one uses will help us out. We are all so different, and I want to remind you that “one size doesn’t fit all”, and that we all react to meds differently, so one persons experience could be another’s absolute worst experience ever. This drug can be very dangerous. Before you run out for the “next best thing”, remember that your doctor knows you best, and that one person’s cure is another person’s downfall. One size does not fit all. It is a good idea to take in all these articles to share, but realize that many doctors who are also researchers may not agree with this medication. If your doctor is worth her/his weight in gold, they will check Pub Med, the US National Library of Medicine, at the National Institute of Health (NIH), and check up on this research.
It isn’t there. This is an article, about research, but nowhere in the NIH can this be found. It doesn’t mean it doesn’t work for some (or all), but that it hasn’t been submitted and/or accepted. I want to put that out there, as we are soooo vulnerable because this is so hard to live with. I cannot judge whether this is everyone’s answer, but at present, where the rubber meets the road, the “clearing house” for all things researched and proven, (National Institute of Health, Pub Med) this paper is research, but has not gone through thorough vetting. So, please, do talk to your doctors, show them the paper, let them do their due diligence, and know that most MD’s and specialists would expect more than an article of research, but would expect it to be vetted before they dove in! A study is just a study. It is the vetting after the study, and the proof of the research of the study that are of the utmost importance. It would be great for many if this was the answer, however, I err on the side of proven works, accepted by the NIH/Pub Med…accepted research. Hang in there, show your doctors and see what they think, but know that most will do their due diligence about this possibility, and may say no.

Sue Elshire Hargrave
Gene Starr Thanks, Gene! We both are here to support members, keep them safe, answer questions, and help navigate through all that is tossed our way. It is t always easy, and sometimes finding the answers can take time. With this disease, one size (medication) doesn’t always fit all. Some, like me, trial med after med, and after almost 2 decades have yet to find how to “tame the Urticaria beast”. If it were easy, we’d all be cured…and we’re not! Hang in there, everyone! I do believe that we will all find something that works for us. WHEN is the big question!!

Debra Suplee Donahue
I am at once insulted and surprised at your missive. I have never said that this medication is for everyone. I’m fully aware that we’re all different and there is no one cure, BUT people should consider alternatives. How dare you tell me that this drug is dangerous without also pointing out the seemingly endless number of side effects of pills and injections that members of this group are taking. Doctors DON’T always know you best and telling people to continue trusting in their choice of prescriptions that provide little relief is more the danger than 10 mg of Dexedrine. Everyone here goes on and on and on about this med and that med yet no one is getting relief.
Say what you want, but here are the irrefutable facts:

  1. I suffered horribly with CIU for 10 years.
  2. I saw 16 specialists whose cocktail of meds didn’t help me. AT ALL.
  3. I started on Dex 10mg 2x a day on December 8, 1995.
  4. I have been TOTALLY HIVE FREE since December 14, 1995

Sandy Kromer Eggert
Congrats! Exciting news. So glad you have gotten relief.

Brittanie Ann
Like adderal!? I would love to take this be hive free! Lol 😬

Debra Suplee Donahue
Brittanie Ann, yes ma’am. Hive-free on this since 1995.

Brittanie Ann Hmmm I wish

Shaina ‘Baruch’ Giller
Kamila Staton I’m not sure if you’ll ever see this, but just wondering… are you still hive-free?? Just started adderall this week and praying it helps but so far no change (in fairness…. it’s only been 3 days and he told me to start at half the dose). Feeling pretty hopeless lately and praying so hard it works, so I was curious if this continued to work for you…

Kamila Staton
Shaina, I’m still so much better than I was before this medication. It took me 3-4 weeks to see a huge improvement. I still have a couple of spots that appear right before my period typically, but I was covered in rash before starting the Dexedrine

Shaina ‘Baruch’ Giller
Kamila Staton thank you so much for the quick response!! This has been taking such a toll on my mental health- 6 months of daily full body horrible itchy hives, along with Angioedema in lips and tongue at times. Finally was able to start the adderall this week and I’m impatient (obviously) to see if it works. Even if I still had just a couple hives I’d take that as a major win at this point over the 200-300 I usually have on my whole body every single day. Good to know it took 3-4 weeks. So helpful to have some sort of timeline for someone it has been helping, to give me reason to continuing hoping it might help me too! Thanks again and I hope it continues to help you!!

Kamila Staton

Shaina, I hope you see improvement soon. I know how miserable that is. I never had swelling in face or lips but I was broken out in a rash and hives over my whole body: face, neck, back, arms, shoulders, hands, legs, stomach, head, butt, and feet. I’m so thankful I’m not like that anymore.

Shaina ‘Baruch’ Giller
Kamila thanks again!! Gives me reason to hope the next few weeks could possibly bring some improvement. So happy for you that it’s much better and hoping to join you in that soon! 🙏🏻

Kamila Staton
Shaina ‘Baruch’ Giller, I would combine healthy eating with this, meaning I cut out dairy and gluten and processed foods for 7 months. I stopped sugar as well. I recently started back eating some sugar and added cheese back in, and I think that may be why I triggered a break out before my periods. I think the sugar increases the inflammation issues at least for me.

Shaina ‘Baruch’ Giller
Kamila Staton hmm ok good to know. Trying to eat pretty clean lately and still completely covered in hives, but more than willing to continue to eat healthy gluten/dairy free if the adderall can help keep me hive free while I do that

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