Urticaria and Xolair
Posted , 14 users are following.
Hi all
I'm at my wits end with my chronic urticaria. Nothing helps - 800g of Fexo a day plus H2 blockers plus high dosage of cortisone everyday. No effect. Eating healthy and avoiding preservatives - no effect.
My Prof who is treating me has filled out a form for me to get injected with Xolair.
Is anyone being treated with Xolair and is it effective? What are the side effects?
Im not concerned that its expensive. Right now I would give my soul for this to go away. Lol. Just would love to hear other people's experience with Xolair so I know what to expect.
thanks
v
0 likes, 27 replies
desmond01416 vera47921
Posted
I think you probably need to taper off the cortisone as soon as you can. I'd get an immunoligist to do a battery of tests for autoimmune conditions, thyroid antibodies, autologous serum test, whatever they recommend.
Xolair can work. Some people react badly to the injection immediately with rare allergic type reactions, but you would be under careful supervision. Personally, I'd try Xolair, if I could afford it. Next best is probably Cyclosporine, if you can tolerate the side effects at a dosage that clears the hives.
If it doesn't work there's also cyclosporine, mycophenolate mofetil and other immunosuppresants. Some people have luck with Dapsone too. In my opinion, all of these are preferable to steroids for your long-term health.
Have you put on weight and had insomnia, restlessness, mood problems are other issues since starting steroids? Also, have you made sure you are taking supplements like calcium to mitigate problems caused by high-dosage/long-term steroid use?
vera47921 desmond01416
Posted
Ive had a battery of tests - I dont have autoimmune disease. Ive been under prolonged severe stress for a number of years so I think that has affected the way my immune system is responding. Mast cells going crazy producing too much histamine.
Im having my first Xolair injection tomorrow afternoon and will keep everyone updated as to progress. My doctor has advised how to ween off the prednisone and Fexo. So lets see.
Im a bit anxious about the possibility of anaphalactic shock (spelling?) But have been assured its rare.
Agree about the steroids - Ive had far too much of them and am keen to get off it. To answer your question, it does interfere with sleep (you always feel wired) and makes you super hungry so it does add a bit of weight.
Im in South Africa and will be having my injection at 2pm SA time. So will send update after that. Please send positive thoughts, I am a bit nervous. But at the same time realise I need to try it as living with this condition is really just too challenging to not try something that may work.
My doc says the Cyclosporine has worse side effects and she rather recommends Xolair. Shes a specialist in the field of asthma and urticaria so I will take her advice and lets see!
Thanks to all for all the info and tips. Ive learnt alot reading all the responses!
V
desmond01416 vera47921
Posted
Yup, I've a similar mast cell issue with no obvious autoimmune issue apart from a very slightly raised thyroid hormone. I have had pretty severe Asthma and animal/pollen/mite/grass/mold allergies since I was about 4.
An Asthma / Urticaria immunologist is a good specialist to see, I'm sure you are in good hands. The risk is really very low. And yes, Ciclosporine side effects were pretty terrible for me (mainly persistent nausea, tiredness, muscle weakness and cramps). I'd go for Xolair if I could get it on NHS or afford it myself. Mycophenolate Mofetil looks less toxic than Ciclosporine, if Xolair doesn't fully work.
wendy62425 vera47921
Posted
Hello Vera
I wish you well tomorrow for your first injection of Xolair. I did not experience any bad reaction...that seems to be rare. The first day there was only a little improvement with the hives.......the second day was the best as the hives were almost gone and days after improved. As mentioned unfortunately for me the Xolair did not work...but don't get discouraged as it works for many. Mine were severe.
I wanted to share that I have had no side effects on the Cyclosporine or Prednisone. Maybe due to how slowly my awesome doctor started me on them and how slowly I'm coming off them......I really feel that is KEY! My doctor checks my blood every 2-3 months all looks good. My friend in the UK Lorraine I don't believe she suffered from any side effects from Cyclosporine either. I had a bone density test and I have osteopenia but I am 64 and friends younger than I have that as well. Yes, it's good to take Calcium and take vitamin D (if low). I am down to 3mg as mentioned.
It is amazing how we all react differently to different meds.
i wish you all well. Let's keep each other posted
Wendy
vera47921 wendy62425
Posted
So I had my first Xolair injection 2 days ago. 150mg.
Mixed results - the itching on the hands has stopped but the itching on the legs continue - only in evenings and early morning. No actual hives or bumps though. Just a surface rash.
Im still on the Fexo and Prednisone. Weaning slowly off the Prednisone though as per my doctors instruction. True test will be if the Xolair controls the itching when Im fully off the cortisone.
No bad reaction to the Xolair though ito side effects. I wonder if the impact improves with more injections eg if its accumulative. Might move up to 300mg if I dont see sufficient results with this first injection.
Will keep you all posted.
v
wendy62425 vera47921
Posted
how slowly are you going down on the Prednisone.?.....this is so important that you do that very slow...as I mentioned I was going down 1 mg per week. The doctor prescribed ALOT of the 1 mg. I am currently down to 3 mg and will stay at that until my appointment with doctor on the 24th. If I had a hive or two she would have me go up 1 mg then down for a week before going back down ( 3mg 4mg 3mg). I did that a couple weeks ago as I thought I was getting hives back....but it turned out to be bug bites from being in the garden ......whew!! I believe I was getting the 300 mg injections of Xolair every 4 weeks.
Please keep us posted!
have a nice day!
wendy
vera47921 wendy62425
Posted
Im going down slowly on the Prednisone. I dont have 1mg pills only 5mg pills so Im cutting them in half. Gone from 40mg before Xolair injection to 30mg (probably should have done that first drop more slowly). Did 30mg for 3 days now down to 27.5mg and will continue slowly down from there.
Hives on legs are clearing but with still a bit of surface itching in the evening (not sure at this stage if its the Prednisone or Xolair helping!).
Ive been a bit less strict in my eating the last 2 days (had some wine and gluten) but will get back on bandwagon tomorrow as my skin is prickling a bit.
So overall improvement but not totally hive free - and Im not sure if its the Xolair or Prednisone at the moment. Also still on my 4 x Fexo per day.
Will have clearer idea once Im weaned off the Prednisone but that will probably only be in the next few weeks as I dont want to unsettle my immune system by stopping too soon.
Will keep you all posted!
V
hanneke54158 vera47921
Posted
Hi Vera
That all sounds promising ...
I wasn't on any other meds when I started Xolair so I was lucky enough to know that it was working.
I can't take anti histamines and pred didn't really do anything for me!
You've only had your first injection so I keep my fingers crossed for you!
I just wish they'd do me thorough tests as to what causes this rather than just Medicate to cover the reaction ?!
sandra64358 vera47921
Posted
Hi
I live in Canada and four months ago out of nowhere I developed chronic spontaneous urticaria. I got it all over my body including my face my eyes my tongue. Tried several allergy medications which would not help at all. Prednisone worked but you can only taking so long. Finally my doctor referred to an allergist specialist, Dr.Jane Sheih. she works at the Toronto allergy group West at Saint Joseph’s health centre and she was the first person that really understood urticaria. She prescribed me 40 mg of Blexten + 20mg Famotidine per day (this is the maximum dosage before going on Xolair injections) and I kid you not my hives would go away while the medication was working. during this I ate regular food and did not go on any diets. One and a half months later I am down to 20 mg of Blexten per day and no Famotidine and I am almost completely out of hives. I hope this helps someone that is as desperate as I was.
MsSynCity vera47921
Posted
Hey there,
Xolair has been a blessing for our family. My little one started getting the shots the day she turned 12. She's been on them for over 2 years now and we are so happy with the results. We go in once monthly to the allergist and couldn't be happier. None of the meds she was previously on helped much and we had to do steroid packs all too often. The Neverending hives were really bad.
Everyone's body is different so you should give it a try and see what comes of it. Hopefully you will get the same results we did.
P.S. I have them administer the meds in both arms. I'm not sure if that makes a difference but it works for us. Good luck!
angela96811 vera47921
Posted
Hello
i have been suffering for 31/2 years with urticaria and like you have been at my wits end. i have had every kind of antihistamine going and a couple of courses of steroids etc. Then i remembered a doctor saying to me years ago that the rash i had on my arms i would clear up if i drank lots of water and it worked so i thought well i am going to try that again. the first day i drank about 12 glasses of water besides the normal tea and coffee i would drink and lo and behold the next day the hives were not as bad and gradually they have completely subsided, it is heaven to be clear, or almost clear, i still get the odd pressure hive but on the whole i am tons better. i am still drinking lots of water but only about 6 glasses and tea and coffee now. i really hope this can work for you, i know what a dreadful time it is to be covered in hives!
joshuapryce1987 vera47921
Posted
Expensive drugs work better, but obviously are more costly.