Chronic Urticaria : 3 years on : Questions
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- Опубликовано: 28 июл 2024
- Chronic Urticaria : 3 years on : Frequently asked questions.
Its now been almost 3 years since I was diagionsed with Chronic Urticaria. I still get lots of messages and questions from people asking me for updates on how Im doing so I thought Id make this short video.
I hope this video helps other people suffering and can give some advice.
Disclaimer : I am not a Dr. All these views and opinions are bases on my own knowlege and information given to me by Drs. This is not an option you have to take. It was just an option I decided to take in order to get help.
Injection - Xolair Injection - omalizumab
Thanks for watching!
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This gives me soooo much hope. Living with this skin condition has drained the life force out of me. It's insane. :(
Me too. Damn. Skin rashes bad. Just bad. Some are luckier.
I was good for two years. Now I’m getting ready to get xolair shots again. I believe it’s my nerves. I’m so happy years ago I came across your video thank you so much. Now I have a name for this miserable hives.
I’m glad the video helped you! I’m sorry that it’s come back but I hope you are getting all the help you need ❤️
You saved my life a year ago I got hives march 2020, started my Xolair august 2020 after seeing your video, I took 7 shots and no hives since then. My life was so miserable I just want to say thank you!!!
Oh I’m so pleased!! I hope you are doing well and thank you so much for the lovely message ❤️❤️
Thank you! My first Xolair injection did not do anything. I hope my next one helps ease the itching. I’m 65 yr old. Just getting hives. I’m so happy to have found you.❤️
Thanks! I hope you start to feel better soon! xx
Jerrilyn, have you had any luck with the Xolair injections?
Yes hives free...I did have breast cancer on 9/14/20. Doctor thinks hives could have been a sign. I had a double mastectomy on breast to avoid chemo and radiation. It was very small 3mm. I was blessed! Those hives were the worst. I’m still taking Xolair injections 300mm once a month. Next year I’m going to start 150mm a month. Im scared to get them back again.....💗🙏🏻💗 How about you, hives free? 🙏🏻🙏🏻
@@jerrilyncarnesi3742 how long did xolair take to work for you x
thank you for sharing, you are very kind and brave. I'm so happy to hear that it hasn't come back after the injections. God Willing you will never have to experience it again. It's truly a disease not many knows of. I truly appreciate your taking the time for making this and previous video. I too am suffering from acute urticaria. I don't feel so alone now and thank you once again for giving people like me hope during this difficult time. God Bless!
Thank you! I wish you all the luck and health xx
Your testimony is my hope. After being bedridden for 6 years I am getting better due to Xolair and only on my 4Th injections.
I’m so pleased to hear this! I hope it continues well for you! ❤️
currently have been dealing with chronic hives for 5 months now. my allergist keeps believing it's my cats and i break out even when I'm not around them or other animals. I'm currently on steroids and hydroxyzine but I still get flare ups. I will definitely see if I can get these injections because living with hives for months now has completely damaged my self esteem. I feel like I can't enjoy myself out without getting a random flare up. thank you so much for posting this video, I truly never wish this upon anyone. this is the most frustrating pain to deal with especially when no one knows the cure and when others assume. I pray whoever else is dealing with this becomes healthy and healed.
I hope you get help soon! Yes I was told the same, I must be allergic to my cats or my washing powder but it was none of those things. Try speaking to an immunologist doctor. That particular doctor was able to help me x
Amen 🙏
What about your situation now
Is the urticaria cured
Please reply me, it's killing me
I am so glad I came across your page I have been struggling with hives for 5 weeks already I was put on atarax and the minute I went off them that same night my throat started to close I was congested and my lips were HUGE as of now the doctors can’t figure it out and I haven’t had them long enough for my hives to be considered “chronic” but oh my god! I haven’t been able to have a full nights sleep in weeks! and I can no longer wear jeans :( it’s really frustrating and i’m so glad I found this because I now know there is hope for me because I have read so many stories and people have had to just kind of deal with chronic hives for years and I couldn’t find a story where someone took something and actually got rid of them thank you so much for sharing this you have no idea how much you helped others dealing with this it gives us so much HOPE
Hi! I glad the video has helped. I hope that you are able to get some answers. Yes I think I had to wait around 3 months before the doctors could say it was chronic. I hope you get some relief soon! X
Wow, so glad to come across someone local going that’s experienced this! Going to investigate these injections with my doctors, thank you!
I'm so happy 4 u! Hope u stay hives free forever! I got hives 5 months ago & still under medication.... Hope I will be hives free like u soon !
I hope you are too! Good luck xx
I’m 14 and have had it for ciu for around a year and a bit now. I’m going to be getting my shot soon and my god am I excited. I can’t even walk my dog without having a reaction and no medications have helped. Thanks for sharing your experience 👍
So happy for you!
I am miserable today with welts all over... dealing with urticaria since 2001 no joke matter
You are God sent 🙏🏽
I am so glad that you are doing great. My husband had been taken Zolar shot since December. He gets it once a month. He still breaks out badly with shots. His doctor told him take benadryl and other medicinie pertaining to benadryl. I was using soap powder for sensitive skin but he broke out.
I am approved for xolair for CIU. Steriods have been the only thing to take my hives down. Recently they have started on my lips as well! Your video is wonderful. Thank you!
can you updating ? my doctor gave me hydrocortisone injection, just once. It helps, but I need to avoide high histamine foods and stress
Thank you so much for sharing your experience with us! I have been experiencing extreme hives for the past two years and like you, I woke up one day with hives and every since I have had hives every single day!! It has been so bad to the point I had to go to the ER several times .. second time was very scary, I was swollen all over, my skin was purple and it even hurt to walk. Flare ups are no fun and dangerous! Seen an allergist that did not help at all! Now I’m switching over to a rheumatologist to see if I finally can get it sorted out. All I want to say is that is very life changing and bothersome. I’m not allergic to anything (did all the allergy tests that there is) and I beginning to think that Xolair or any similar medication might be what will help me with this all.
Hi! Yes its awful! Swelling up and having to go to ER is very scary! I hope you get some answers and help soon xx
You really give me hope
I’m glad ❤️
Cost nearly 2 grand for the injection.
@@honghong3153 yeah they are very expensive. A lot of people are using health insurance for it x
Very well done video thanks! Fellow belfaster here, I commented on your last video last year when I was in the Royal 2 weeks in a very bad way. The injections have stopped all hives!! But I've since developed pressure induced urticaria which means I can't wear tight clothing, socks, watch, jewellery and I'm constantly covered in lines and marks and imprints if I lay or lean or sit.. It's very frustrating but better than hives I guess! Glad you're well.
Oh im so glad your hives have stopped! Im sorry that you now have Pressure ones, but at least you know what it is - which hopefully is a good thing! Hope you stay safe and well! x
@@sonjasleator7582 thanks! To be hornet it's more of a cosmetic issue now with the marks and lines and not being able to wear things like leggings, it's an easier thing to live with than chronic hives and hospital stays! Stay safe friend x
I hope xolair would prove to be life saver for many's life like in your case
It didn’t take long for Xolair to work but I want to while with the hives before I found your channel. So I don’t really know but I quit taking it a shot about two years ago. And now I have an appointment Thursday to start taking a shot again.
Yay! Great video. Keep it up :)
Thanks :) xx
Hi,
I feel confident by ur video,
I am. In under treatment,
Please remember me in ur prayers.
Thanks for ur support
I hope it helps x
Thank you yes I’m on xolair now because I have struggle forays summer 2020 it’s my first one I am praying could go away completely bc it’s not fun.
Ah I'm so happy for you ❤
Thank you! x
Hi I wrote to you years ago when I had the hives. I started getting Xolair shots for maybe a year. Hives did stay away then I’ll quit getting the shots. For about two years now. Recently I took a plane to visit my daughter in Florida. The plane landed a little hard and it upset and scared me. Now I’m starting to itch in various places hoping the hives or it back. I think it comes from stress nerves that are deep down in your system. That find a way up through your skin service. I’m OK right now. Thanks a lot I’m looking at your video right now.
Hi! I’m sorry to hear that the itching is back, has it by any chance calmed down since? Yes you could be right, could be something deep in the nervous system. I hope you start to feel better soon ❤️
Hello all. Using fresh aloe vera helps greatly but it does not cure. It takes a way the itch and swelling. Slather it on in between outbreaks andwhenever you feel an outbreak starting. It has made a world of difference to me.
Great to hear! 😊
Thanks for your videos !!! Well informative .. am going through CU myself... and going to try placenta implants to boost my immune system .. have you heard of them and what do you think?
Your presence is so healing. Thank you for making these videos.
One question: I know you have not received an injection for 3 years, but do you still take antihistamines to stay hive free?
Thank you again for your incredibly valuable service. xx
Hi Jennifer. Thank you, I hope the videos help in anyway they can. I came off all antihistamine medication about 6-8 months after my last injection. So currently I still give free and still hoping every day I remain this way xxxx
Hi, thanks for the video. Do you think that Xolair healed your urticaria or just hid the symptoms?
Thanks!, I'm just going throw this 2 year. My lips and other part of my body are swollen, worst thing ever. Xolair is free in USA? did they inject it to your body, or you have to do it by your self ?
Not free. Need to get approved by allergist. Need health insurance and the copay plan.
And they inject you with the serum.
I don’t believe it’s free in the USA and the hospital staff injected me with it x
Can you tell us what was your total IGE before taking xolair pls
do people with chronic urticaria that had taken the xiolar injection always to be careful with their diets? My hives only flare up if I eat high histamine foods. Is histamine intolerance a part of the reason why chronic urticaria happen tk someone? Really wanna learn.
Hi My name is Philip from Ghana. Please do you think I can get the xolair injection in Ghana and how much does it cost. Thank you.
i had urticiria from last 5 years but still i am effected from this disease can you suggest me something for this disease i m tired from this
I get chronic urticaria from Graves disease a thyroid problem. Been taking the injections now for over two years twice a month now. It helps with the hives with all the other medicine I take also going along with the injection. Right now I'm hives free but with the injection and all the other medication it does take a toll on your body and life.
Yeah it really can. Xx
I was brought up on calamine lotion as a child. I would always get 'heat lumps', hives, allegic reactions to rabbit hair, etc etc. Cools the heat & itch but does not cure.
You need lamisil.
Did you have itching nose inside and out with your hives. I havr Urticaria and I have nose itching and facial itching as well all day long. Did your Xolair help.
Hope that help someone!!
I was suffering from "Chronic Urticaria" trying every treatment nothing worked until I discovered the cure which was drinking a lot of water!
My case was getting a hive once I do an effort or sleeping itchy electric needles feeling.
My personal point view: It comes after a long dry days in winter it damages the skin layer which makes the immune system acts in wrong way releasing histamine instead of water as sweat its all about electricity and nerves and water fix that.
excellent! Im so glad that helped you! x
Did your immunologist run any tests / bloodwork to try to find the cause of your overactive immune system/ Chronic Urticaria?
I have no idea why I have urticaria since 2001 either, did all tests etc
What is xolar shot for
Thanks
Cost nearly 2 grand. Think about it.
Before you took the xolair injections did you try any other medicine that helped reduced the hives and did they work?
If you watch my previous video on Urticaria i go through a list of everything i tried x
hi Sonja! i will be doing a xolair injection soon for idiopathic uticaria. as excited i am for it, the word cancer has been thrown around a LOT and it is genuinly terrifying me. do you know anything on this that could help me ease of mind?
Hi! To be honest it’s a difficult one. I was just in so much pain and my life was so miserable I was willing to take the risk and if cancer came or comes later down the line then I’ll deal with it then if that makes sense? It’s all your own choice so don’t feel forced into it. Do what is best for you. I’m just thankful that i am lucky to have my life back since getting the shots. I hope I continue this way and they don’t come back xxx
And how many xolair injections did u have to take?
Did you ever take anti histamine
What kind of urticaria do you have?
You are brave to have till wait 6 months to your shot... God Bless you!
Dear Sonja. Thank you for sharing your experience. I have a question for you and other readers.
Have you ever used e-cigarettes?
I have started xolair treatment 3 years ago. I had 24 shots (48 doses) until now. During the treatment of 6 months plus another 2 months there were no hives. Then after 2 months of the last injection my hives always return.
It seems I have to live with xolair for the rest of my life which is not possible. So I need a way out and try to find a clue to stop my hives without depending on xolair.
I used to vape e-cigarettes before my urticaria condition started. After 6 months of quitting e-cigarettes my hives started. So I wonder if you ever vaped e-cigarettes or anyone who reads these lines. For a “non-clinical test” purpose I started vaping yesterday once again after 5 years to see if it will stop my hives. I will share the results in a couple of weeks. Regards.
No I haven’t used e cigarettes, but let us know how you get on. It’s so terrible to live with and I wish you all the luck for it to go away x
Thank you for your response and your good wishes. My hives still appear after 5 days of vaping. It is a silly idea anyway, but worth to try. I'll continue vaping till the end of this month x
R u cured now?
I have another question please, have you earned more weight before xiolr because other medications?if so could xiolar then let you loose weight?
My weight stayed exactly the same xx
Even i m dealing with urticeria since 2017...still no relief..instead its getting worst.....please suggest me something available in india
Apetamin? It is illegal in the US, but is made in India. It imght be helpful from what I have read.
Can a person with Dermatographia take Injections? Did you take Antihistamines or Antiallergens before taking Injections? Can a person with Dermatographia take C*vid Vaccine?
Don’t know about dermatograhia as I don’t know what that is exactly. But yeah I think you can still get your covid vaccine. Always check with your doctor though x
Hallo, i would like kindly to ask you if you have urticaria after xolair? Because i have to take it next month. This year was horrible year for me because urticarea with no reason. But stress at work could be the reason inspite that I have also this Chronic illness since i was a child for no reason. In my life and still i have this problem which effect on my life style. For 6 years, urticarea dissappered alone and it returns back this year. I am tired of it. I hope that i can get an answer from you that motivated me to try the new medication. Regards
Hi! I thankfully have not had any urticaria since I took the xolair 4 years ago. I hope this helps and I wish you all the luck xx
I know you said in the 4th month you seen a difference but did you still have nights in the 4th and 5th month where you got horribly itchy.
I may have. I think I was so used to being itchy It probably took me a while to finally stop scratching x
Please tell me do hives permanently turn into brown
In my case, no
Do Hives permanently turn into brown colour yes or not
No, the hives don't permanently turn into a brown color. HOWEVER, I have scratched so hard and so deep that I have done considerable damage to my skin. It did turn a darker shade than my regular/normal skin, but it eventually had the appearance of "normal" skin after a few months.
I take xolair injection for 1 year now still my hives don't go😞
Tarik 1961 oh gosh :( I hope you can find some more research to help!
Do you still suffer from hives? Ask your doctor to also try Dupixent. Many patients take both Dupixent and Xolair injections.
When your hives where in their peak 1-4 months did you find any foods made your urticaria worse ?
No, didn’t seem to have any issues with food that I can remember xx
Thank you so much for replying I’m on my 7th week but the hives are still so bad and itchy at night when did you see the major difference 4th month.
Before that was it still bad ? Like from month 1-3?
Hello,
I got my First Xolair today, after how many days can I expect any sign of relief ?
It really depends on your own body. It took me about 2 months before the change started to happen x
What about acute urticaria? Is it only for chronic?
@Harjotsingh are you still taking xolair?if yes what are the side effects?and how's your condition?please reply
Is it possible for everyone to get injection
Possibly? It might all depend on your own body or if you are allergic to anything. Always best to check with your own Dr if you are able to get them. x
I've lived with these hives for 7 years. I take apetamin and it helped me for 5 years bc of the cyproheptadine ingredient which is stronger than most antihistamines. But it doesn't cure it. I wish they would go away forever.
I’ve watched three of your videos. I’m from Belfast and been suffering with Chronic Urticaria and Angioedema. I’ve been told by doctors I’m a candidate for the injections as nothing else has worked (creams, antihistamines, montelukast, diet) but with covid, everything is delayed. Steroids don’t fully take away symptoms, I’ve been told my case is quite severe. Is there anything you would recommend that helps ease the itch and pain? It’s the swelling, especially facial that is the most frightening! Thanks.
Hi! Im so sorry to hear this :( I cant image how bad it must be with covid! I was on Levocetirizine four times a time and then 1 table of Montelukast at night. It was a lot of medication to be on but it certianlly helped ease some of the swelling aNn itch. I would also use Calamine lotion with a cotton wool pad and bad it very gently over all the hives. It would leave a chalky substance on me but i believe its a lotion used for chicken pox so it really helped calm the itch! I hope some of this helps you! x
covid has delayed my injections too :(
Hi have you had the injections now? X
@@MandieLovesMAC yep I finished my 6 months of injections in March. So far still symptom free. Was symptom free 2 weeks after the second month of injections. Changed my life!
@@mnibhroin7749 👍
How many month we should take that for one month one or we should take or daily
sanjay john it depends on what you need and what your doctor advises
Cost nearly 2 grand.
@@honghong3153 Do you live in Hong Kong? In America, there are programs through some of the drug manufacturers that lessen the cost of these very expensive drugs. Please check in your area! Good Luck!
@@asphaltgypsy868 thank u. Hot weather is the worst for me. The allergy gets back. Allergy asthma.
Are you still having ur medicines???
Not anymore x
Sonja Sleator great i m so happy for you..!!!
@@dishatandon1384 Thank you so much! x
damn i have these, got these during quarintine and no idea what to do :/
same dude
@@nurulizati6954 well i got a lot better now so thats good :p
@@satanwithinternet2753 thank god what treatment that makes you got better?
@@nurulizati6954 i used this powerder called mycoderm. it has saliclyic acid and benzoic acid and some other stuff. i just apply it whenever i feel itchy and the itchy ness goes away. so i have been going on runs 2 times a day and whenever i get home and i feel itchy AF i put the powder on. and slowly it is making the itch go away :p, now i feel very little itch even if i go for run and walks and i can sweat again :D. hope this helped
I have them. Damn. Worst than any.
1st Xolair shot cleared up my hives for about 2 weeks. Then ever since, I've been breaking out like crazy, even after the 2nd shot. Prednisone is the only thing that works for my hives and the side effects are terrible
WOW!! Prednisone turns me into a raving maniac. Has your doctor tried Dupixent injections on you?? I start it next week! My dr wanted to try it before the Xolair.
@@asphaltgypsy868 Haven't tried dupixent yet.
@@mikeysfishingfuntime5070 I started it yesterday. Self-injected one pen into each thigh. I'll go to one pen every 2-weeks now. My hives "rotate". Right now, I am back with the ones that started it all almost 9 years ago. It spreads slowing across my body. I itch like crazy right now. I haven't been able to wear shoes for the last two days as the tops of my feet look like fire ant bites. They burn too! I have scratched them raw=NO SHOES FOR ME!!!
@@asphaltgypsy868 This shit is ridiculous. I had to quit my job 2 months ago.
@@mikeysfishingfuntime5070 I know the struggle!! It IS real!! Over eight years, and I've come close to losing my mind because of lack of sleep. The itching is the worst. I hate drs. telling me to quit itching. REALLY???? Most of them have absolutely NO IDEA what we go through! Please don't give up! Try Dupixent!! Let me know how it goes for you!
Pls Dont make tattoos on body, IT may come back, with My Friend happend
Hey, watching my hives inflammation fade day after day until they completely vanished was such a relief, I went with what I pointed out and within the first 10 days or so the urticaria/angioedema was barely visible! I just go'ogled the latest by Shane Zormander and after 20 days my skin has never been healthier!
queen shit