Discussions that mention neoral

Allergies board


Thought I would post my last few weeks experience. I got a sinus infection and ended up going to the Dr. for antibiotics. She decided to try me on one more medicine....just for fun I guess for the hives. The only one I had not tried was Singular. I have been taking Sulfasalizine and been doing pretty good but but DUMB ME said ok. WHy not? I will give it a try. WHich ment going off my medice and trying it for a week or so. Give it time to really work. :rolleyes: A couple of days I did not have very many hives but after 6-7 days and the Sulfa med. going out of my system I was getting hives everywhere. I have done this too many times to count and said forget it give me back my sulfasalizine! Now this medice takes a few weeks to really start working good so needless to say I have had some very miserable days and back to sleepless nights and swollen body parts and unable to walk because of swollen feet. Yuck! I hate this.
Well, nuthing gets me more motivated to find a permanent cure......anything to regain a normal life than being all hivey and in pain. SO my research continues and I have come across several new things that I need to check into further.
Just a few are...Anabolic steriods...systemic.
Warfarin therapy
Blood thinners like Coumiden
anbd then there is meds like Chemo. Methotrexate and also Neoral. I had one dermatologist wnat to put me one that but it increases your chances of getting cancer and lowers the immune system. I have read about Colchine being used asa anti-inflamitory. All of these drugs are serious stuff and I am not sure if I am willing to go that far. I have been doing this almost 3 years now and and pretty tired of it too. At least I have found one thing that helps me and is better than a life of steriods.
my Dr. says I am way ahead of her and know more about it than anyone she knows. I go in for more blood work next week. Wish me luck!
Quote from HAIRDOER:
Thought I would post my last few weeks experience. I got a sinus infection and ended up going to the Dr. for antibiotics. She decided to try me on one more medicine....just for fun I guess for the hives. The only one I had not tried was Singular. I have been taking Sulfasalizine and been doing pretty good but but DUMB ME said ok. WHy not? I will give it a try. WHich ment going off my medice and trying it for a week or so. Give it time to really work. :rolleyes: A couple of days I did not have very many hives but after 6-7 days and the Sulfa med. going out of my system I was getting hives everywhere. I have done this too many times to count and said forget it give me back my sulfasalizine! Now this medice takes a few weeks to really start working good so needless to say I have had some very miserable days and back to sleepless nights and swollen body parts and unable to walk because of swollen feet. Yuck! I hate this.
Well, nuthing gets me more motivated to find a permanent cure......anything to regain a normal life than being all hivey and in pain. SO my research continues and I have come across several new things that I need to check into further.
Just a few are...Anabolic steriods...systemic.
Warfarin therapy
Blood thinners like Coumiden
anbd then there is meds like Chemo. Methotrexate and also Neoral. I had one dermatologist wnat to put me one that but it increases your chances of getting cancer and lowers the immune system. I have read about Colchine being used asa anti-inflamitory. All of these drugs are serious stuff and I am not sure if I am willing to go that far. I have been doing this almost 3 years now and and pretty tired of it too. At least I have found one thing that helps me and is better than a life of steriods.
my Dr. says I am way ahead of her and know more about it than anyone she knows. I go in for more blood work next week. Wish me luck!


hey Hairdoer, sorry to hear you're all itchy again. that sucks. I have been relatively hive-free for about a week, only a couple a day. Weird how now that is a good thing, when a couple of years ago I'd have been concerned. I hope you feel better soon. :)
Hi all. Next week will be the 3 year mark for my battle with hives. I have been on tons of different antihistimes and all kinds of other junk that did not work and I can still report that the only relief that I get is from taking Sulfasalizine. I get some pressure hives ( DPU ) and certain times of the month can be kinda bad. I have a notebook of probably 50 pages of medical info and know more than I ever wanted to know about hives. Still no %100, never have another red itchy swollen place on my body yet.
I have an appt. with a Dermatoligist in December and I am going in totally armed and will not walk out without deciding on what the next step will be.
I do not believe this is an allergy, or a genetic disorder. I do not get hives from eating anything, or from soap, clothes detergent, or perfume. I do not get them from STRESS! I get them for some stupid reason and I am going to find a way to get rid of them for good.
I want my life back! I wanna go skiing, roller skating, ride bikes, go shopping, and just play without wondering if I am going to PAY for all the fun a few hours later by being swollen and unable to walk, wear shoes. I wanna wear a shirt tucked in and a belt! I want to be able to wear a bra that is not so loose and try on shoes. I want to play with my kids.
Some of the meds I am looking into helping me are strong and potentially very dangerous and I even hate needles. But at this point I am willing to tell them to put me through any torture, poison me with chemo meds and do a complete blood transfusion if needed. I am so done with antihistimines and hearing well, try this.
I have spent countless hours doing RESEARCH. I even understand the medical stuff now. I read stuff to my hubby and he looks at me like I am speaking a different language.
Here is some of the stuff I have read about.
Plasmaphoresis........Omalizumab. ( Xoliar ).....Immunoglobulin injections....Warfarin therapy ( Coumidin )....cyclosporin.......Methotrexate.......Azathioprine.......Desloratidine..gold....Vitamin C......attenuated androgens......Dapsone.....Bioflavonoids.......Quercetine......digestive disorders......DNA Plasmid Vaccines.
Also...IgE- mediated processes....mast cells........angioedema.....Autoimmune diseases.. Immunosupressants like Neoral and Sandimmune....Dermagraphism......Heliobactor pylori infections......High-affinity IgE..... molecules.........basophiles...........lymphocytes........monocytes.........neutrophiles.....fibroblasts..........C3......C4..... Corticosteroids.....H2 and H1 blockers........ASST.....( Autologous serum skin test )............and that is just the tip of all the stuff I have in my notebook.
For those of you searching like me. Keep looking and check out some of the stuff on this. You will be very busy. I am my own Dr. in my eyes these days. It is up to me to find the magic bullet.

Sadlyn....I do have MVP and I do believe there is some small connection but can't say for sure of course. Both have in common are autoimmune and the autonaumic system. I have seen several bits of info linking the two but no details yet.

If you right click on my user name on here and then you can read past posts by me for more info if ya want. I will post more in a few weeks. Happy Turkey Day to all !
For those who do not know, I have had chronic ideopathic urticaria, delayed pressure urticaria and angioedema for over three years. I had it in high school for around 6 months but then fine for awhile. I have been on all kinds of meds. Tried everything the Dr. could throw my way. 16 different meds.
I went back to a dermatologist yesterday and told him of all my research and what I have found out. My last 5 choices were immunoglobulin injections, plasapheresis, cyclosporin A, methotrexate, or anti- I gE treatments. I have read alot about the cyclosporin and plasmapheresis used together. We talked about all the options and the risks involved and even some of the other things I have read about. He agreed that no allergy testing or amount of blood work would find the cause and at this point, it does not matter anyway. Just stop it, I said or find me someone who will. I am done messing around with the little stuff that does not work. The sulfasalizine worked best but did not stop the pressure hives.
The best choice for me is cyclosporin, ( Neoral ). I have to go in for blood pressure and labs today at my regular Dr. office and again in three weeks. The risks are mainly high blood pressure and kidney function. I am starting out at 25 mg daily and will increase in three weeks when I go back and then probably go back on the sulfasalizine for awhile if needed as we taper me off the Neoral. It is a immunosuppresant and I have to be careful of illness. That is going to be hard since I work at a grade school and do hair. SO I see lots of people everyday. I think I may carry hand sanitizer with me at school and let know one in my house the has a sniffle or cough. I have my shop in my house. I am willing to put up with any side affects. Neoral also increases the chance of developing cancer. At this point of having hives forever it seems. I do not care about the risks. I am just hoping for a much better life. I want to go play with my kids and not worry about hives all over my body if I have a little fun.
Things I have on my list to do when the hives are gone for good are: snow ski, wakeboard, go shopping, walk all day, skating, bike riding, fishing, wrestle with my little boy and win. I want to tuck my shirt in and wear different shoes. Excersize without pain later will be something new too. Get a massage! You get the idea. Just be nice to do lots of things without paying for it a few hours later.
I will let ya know how it goes. He said I should have dramatic results within a week or so. Yippee. Trying to not get my hopes up too much, but I am optimistic. It is going to be a Happy New Year for me! :D
Hey ya'll. I wanted to let ya know that I started on my new medicine yesterday. I got a prescription lask week from the dermatologist for Neoral ( cyclosporin ). But then I got a cold and the Doc. said do not start taking it if I am sick. It lowers my immune system so I had to wait till I was better. I am not completly well, but good enough I think. I just can't wait to see if this medicine works after all others have failed. He said I should see results in a week. I did not go to a allergy Dr. for the hives because I and my regular Doc. believe my Dealyed Pressure Urticaria is not caused by allergies at all. So I may not be hive free by Christmas but hopefully by the new year. I really hope this is the magic bullet for me and many others so I will keep you posted. If the Neoral works for me, then you all will know more about it and maybe there will be hope for all the people who have been suffering for years too. I wonder how many people read this and never even reply to this post. I hope if this thread helps someone they will at least say hi to us and tell us thier story too. So sad that so many people have hives for years and are put through the ringer of meds that don't help or are told it is stress or something stupid like that.
I hope ya'll have a hive free Christmas and a hive free, Happy New Year!
I am still here, just busy. I am taking the neoral and still waiting for me to get better. I still have hives somewhere daily but I am going back this Friday and I believe they will increase the dose I take. Have to go get bloodwork first. YUCK! I will let ya know what he says this time too.
Yo angel monkey. Would ya mind telling me what in the world therapy is going to do for hives. In all honesty. When I read that I laughed. Sorry, but that sounds really stupid to me. When I think of me doing that..........I think of how swollen I would be after one session. I can't take any kind of pressure or massage or strain to any muscles. You would have to drag me in kicken and screamin. But hey. If ya think it will help you go ahead. Good luck and please let me know the reasoning behind it too will ya? Good luck!
Just thought I would let ya'll know that the medicine I was on for the hives that actually started working on me..........well, I had to quit taking it. BLAH! I was sicker than I have ever been in my whole life. It was Neoral ( Cyclosporin ). It lowered my immune system too much I guess. I was hive free for about two and a half weeks but was having side effects like the stomach flu. I lost weight but was so sick that I could not keep anything down and then got internal hives from throwing up so much. I was missing alot of work, had to cancel appts. and missing out on lots of kid stuff. My poor hubby was picking up all the house work and taking care of kids all the time too. I really don't want to live in the bathroom either so I had to stop.
So I am back on the Sulfasalizine and getting hives daily in one place or another. From my past experience it will take about three weeks for this medicine to start helping. Here I go again.......not wearing shoes if I don't have to and pacing myself to not do too much in one day. Gotta watch out for clothes that are too tight too. I was really getting tired of getting blood drawn every two weeks and going to the Dr. anyway. :rolleyes:
Not sure what my next step will be...........I got tired of doing research so I guess I need to get myself busy again and hope the Sulfasalizine works pretty good for me again this time. SO here I am being the persistant optimist once again. Still hanging on for hope. I am singing at church on Easter and am doing 4 services. Gotta be there at 5:45 till 12:30. Just wondering how my feet will like being in dress shoes that long and if my throat will make it the whole time without swelling up so much I won't be able to eat lunch. I absolutly hate having to even think about stupid stuff like this. So I guess I will just be thankfull that I have feet to swell up and a voice to sing praises with....... :D :) :D Happy Easter to all!


Yo shawnyboy. Or anyone else who does not seem to grasp the life altering and horrible nature of chronic idiopathic ( means, no known cause ) hives. Just for your information. The hives the people on here are getting and some of us have been dealing with this for YEARS. IS NOT caused from a allergy to anything. We have been to the allergy Dr.s, dermatologists, and countless Dr.s who have no clue what is causing them. If it were something so simple as an allergy........then don't ya think all the antihistamines that are pushed our way would be working and we would only have the weather to talk about. I can not live in a bubble and I don't think anyone else on here wants to either so whatever the cause to our chronic hives is ( at least for me ) does not matter. It is the cure I am interested in! I hate to sound rude about it, but I for one, am so tired of people saying stuff like......have you changed your soap lately, what about your laundry detergent, perfume, are you eating something new?? Makes me want to scream. The answer is, don't ya think if it was so simple as that I would of changed it, fixed the problem by now? I have been batteling this for 3 and a half years. And no I am not allergic to anything.......it's not that simple. 19 different medicines and counting. Not to mention the countless hours of life I have missed out on doing fun stuff with my kids. Lost days I will never get back. Trips to the Dr.s office. Blood taking and questions asked and still no answers. Thanks for your concern and taking the time to try to help but don't ask me about my soap please. And the air I breath is kinda important to me since my lungs require air on a daily basis and I am used to eating and sleeping and wearing clothes. I really don't want to pull my teeth out either and I like my house just fine too so I am not moving. Maybe I sould apply at the local hospital for a full body transplant. Yea, get all new parts, and then life will be just great. :rolleyes:
Hairdoer: Thanks for the post. I haven't been here lately. Sorry to here that the Neoral made you so sick and didn't work out. A close friend of mine died recently, and after standing at the wake all night my feet were so swollen the next day I couldn't get my shoes on. But, the weird part is that after that I didn't have hives for a week. It was a glorious week. Of course, they came back full force one day when I woke up with my hand and fingers swollen. It hurt so bad, I tried an ice pack. Dumb idea! That just made it worse. But, I wondered what made them go away for a short time? I didn't change my diet, certainly I was very stressed out and not getting much sleep. I don't know. I have been in "remission" before. Once the hives went away completely for several months through the winter. I thought they were gone for good. But, no.
Hi kellyseye. I have done the cyclosporin thing. Neoral last Dec.-Jan. In a nut shell...........it made me very sick for weeks. Did not really help very much that I can be sure of. Had to quit taking them after 6-8 weeks. Can't remember everything about it though. So if you want to read about my experience with it and all the blood work you have to do while on the stuff, you can click on my user name and scroll down to read all posts by me. I am sure you will find it. Hope it helps.
I have had hives for ummmmmmmmm, I think 4 years now. Lost track of time. I guess I am better now than a couple of years ago. I mostly get delayed pressure hives and a few here and there and mostly have problems at certain times of the month. So double whammy then. I will check back later to see if you have any questions. I have tried everything under the sun too. So I feel for ya!