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
Have you read this page? https://patient.info/doctor/urticaria-pro
Are you in the UK Vera? I have a feeling that perhaps you aren't.
What dose of steroids are you on?
Good luck.
I suffered from chronic urticaria, without a known reason, for 16 years. Eventually I was able to try Xolair and it worked the first year. When I got my hives back a year later, it did not work. I visited a Rheumatologist/Allergist and was diagnosed with an auto immune disease which gave me hives. They treated me with methotrexate for 6 months and plaquenil. I had to get off of the medicine because I had unrelated surgery, but my hives have not returned in 1 1/2 years. I had been tested for allergies and rheumatoid factors, but nothing every was positive so it was extremely frustrating. However, after explaining my hives, the various medicines I would take (prednisone was the only medicine that would truly calm my hives, yet it did not treat the underlying issue), the Rheumatologist/Allergist knew it was auto immune and confirmed it after testing my blood. It was so difficult to find a doctor that understood chronic urticaria. Most doctors, including Rheumatologist, will not know what to do with chronic urticaria so they will prescribe cocktails of medicines in hopes that one will help. In speaking with several doctors, Xolair has been extremely helpful with chronic urticaria and from what I understood, it is relatively a safe drug.
Even though I was tested for gluten intolerance and was negative, I did find that by eliminating it from my diet would somewhat help my hives. This may be due to gluten/wheat is an inflammatory food. It may not affect you as it has me and it may take some time to see improvement, but it is a natural modification to your lifestyle that may help you with overall inflammation.
I wish you the best with Xolair and I hope it helps you!
Hi Vera, from what I've read from other bloggers it's hit and miss whether xolair works or not. My friend from the US Wendy had been on it but it didn't work for her during this latest outbreak. Her immunologist has placed her on cyclosporine and prednisone and this combination plus some antihistamines has worked better for her and is now tapering off these meds. Alongside meds though you have to work on any illnesses, infections or stress as these trigger urticaria and can work against any meds. Also any stomach problems can trigger it and it's not always food allergy. I had a problem with particles (minute) leaking through my small intestine into my bloodstream which triggered my immune system to act up. L-Glutamine powder, a good probiotic and multi vitamins along with cyclosporine helped me. I wish you luck.
Hi Lorraine
Thanks for your response. Yep I know all about the gut triggers and have been on medication for that for over a year. No relief.
Im on 800 g of Fexo per day, plus cortisone injection plus Prednisone. Plus H2 blockers. Plus eating clean. Still no relief.
So Xolair is the next step. If it doesnt work I will try the Cyclosporine and Prednisone combo - thanks for the tip. Although Im trying to stop taking steroids long term. Ive had the steroids on and off for last 2 years - in last 6 months, its been continuous.
My quality of life is really terrible at the moment.
Thanks for your feedback
v
Sorry forgot to mention I also had a colonopscopy and gastroscopy to rule out any gut/intestine abnormalities. Was given the all clear.
Hi ...
I couldn't take antihistamine treatment as once my urticaria started, almost three years ago, it made me allergic to antihistamine - seriously?!
I have just had my last Xolair injection of a 6 month course and ... Thankfully for me ... It has been a miracle! No hives since the first injection and no side effects! I'm a little scared as to what will happen in four weeks time when I don't get another jab but I'm keeping everything crossed!
I dread going back to how I was 6 months ago...
Hi Vera! You will need to do a permeability test which is done through a urine test not a faeces test.
Thats awesome. SO happy for you. I imagine its like getting a new lease on life! Please keep me updated as to how you progress without the monthly injections.
Great thanks Lorraine. Will have that done!
Hello Vera
I am the friend of Lorraine. I have been mostly hive free since last September due to slowly going up on the Cyclosporine until I reached 200mg (I believe Lorraine was able to control hers with 100mg then her slow taper). Mine were more severe so doctor added the Prednisone...I can't remember what mg I started, but after being on it for a couple weeks (with no hives) she had me going down by 1mg each week so very gradual......it has taken me many months and Cyclosporine slowly from 200mg to 150 to 100 to 50...I am currently on 25mg. Prednisone I am down to 3 mg and will stay on it until my apt. On the 24th. The key is Extremely slow withdrawal .....to keep your immune system calm. My trigger appears to be stress. I have had urticaria twice in my lifetime and was able to manage them with antihistimine both times lasting two years........I am now 64 and this last outbreak was SEVERE!! Nothing worked...Xolair unfortunately did not work for me. It did the first injection but was short lived so I stopped after 4 injections. Some are successful but some get the hives back a month or so after last shot. Hoping Hanneke with stay hive free like others! I am in the US. My doctor is awesome and is at Johns Hopkins.
Please keep us posted on how you do with the Xolair. I wish you the best !
Take good care
Wendy
p.s. I did have some hair loss with Xolair......others did not... but wanted to share.
I dealt with chronic hives for almost 2 years. Head to toe hives. It was awful. I went to 5 doctors and no one could help me. They put me on prednizone. Prednizone made it worse. I did acupuncture and that gave me some relief. I did the probiotics and l glutamine thinking it was a digestive issue. It turned out all it was was a severe b12 methyl deficiency. I am now on high doses of b12 methyl. I take it in a dissolvable pill form from a natural vitamin store. I have had no hives for 6 months. I avoid ibuprofen and caffeine and alcohol. Those things make the hives worse. Way worse in my case. Once I started the b12 methyl it was 4 weeks and I no longer has any hives. However, I was told it could take several months to rebuild my red blood cells to a healthy state. I felt so angry and yet so relieved that it was something so simple. My life was hell with chronic hives. I feel so much better and stronger. I sleep so great. I also included an iron supplement. I hope this helps. A severe vitamin b12 defiency can lead to serious medical conditions. Also, chronic hives are associated with severe b12 defiency,
Ask your doctor for an autologous serum skin test to rule out any auto immune disease related to your urticaria. They will draw blood. Then, they will inject you with saline, histamine and a serum of your own blood. If you get a hive from your own serum, it may be auto immune related. Good luck!
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?
Hi Desmond
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
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.
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
Hi all
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
Hi Vera
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