Hi all,
Sorry if this thread is a repeat. I am in need of advice regarding xolair. My consultant has now decided that he thinks I need to go on, but he said that I need approval for funding.
Does any one know what the criteria is for it. He repeated by IGE levels today am waiting for the results. My last ones were 246 and was taking prednisalone, which i am now and know that they can effect the results.
Any advice would be grateful
Carolyn
Not sure if different trusts have different criteria but in Worcestershire its basically if your medical costs due to asthma are greater than the cost of the drug than you can be considered. Need to have poorly controlled asthma and taking pred. At least 10mg or more for six months, lung function below 80%. Frequent hospital admissions 6 or more in 12 months. Postive skin prick or RAST and IgE between 30 - 700. Also need 2 respiratory consultants to agree to drug. Prehap you can look and see if your nhs trust have any guide lines on web. Worcester's can be see on worcestershirehealth.nhs.uk...
It took months for my trust to agree to fund xolair. So good luck and dont give up, it can just take a little time. My consultant had to go to lots of meetings with fund managers. Also helps if taking pred long term is causing you health problems.
Best wishes
Sarah
Hi Carolyn,
I have bumped to the top my answer to a previous thread on Xolair, talking about the new NICE guidelines.
Unfortunately despite the NICE guidelines it still seems to be very much a 'postcode lottery', with different PCTs having different protocols on funding it, what criteria you have to meet, and how long it takes to get funding approved.
I hope this helps and you have some luck getting it
Em H
Have just found that Yahoo Mail have group for xolair users, found in health section. Message board has peoples experiences of using xolair from 2003. Lots of different posts. Dont know if any of interest, havent look through many. Not the fastest web site and bit of pain to sign up to. But might have some useful info?
Hi,
Tahnks for the advice. I will check out the sites. I am at clinic on wed so hopefully they will have some good news for me.
Carolyn xx
North Yorkshire Xolair patients?
Hi. Anyone in North Yorkshire having any luck getting funding for Xolair? What hurdles did you have to go through> Consultants?
Thanks!
Hi all,
thank you all for the advice re xolair. I have just been told that I have been approved for it. I am excited but also a bit nervous.
I have been told that I will be given two injections, which start on wed, but not be told much about the side effects. Has anyone experience any side effects? If so any tips on overcoming them?
Thanks
Carolyn xx
Carolyn well done on the funding. As I understand it reactions and side effects are very very rare but can happen. It might be worth you checking out this out xolair.com/patient/about_xo... however the benefits far out weigh any risk of side effects. I have heard from people who say it has revolutionised their lives so go for it and good luck. Don't forget to let us know if it works for you!
Bex
Hi all,
Just wanted to let you know I had first dose of xolair yesterday (was supposed to have it a coupleweeks ago, but it had to be delayed) and so far have not had any side effects. Hopefully it will work. I know it will take a few months to see any improvement but am hopefull. So fingers crossed. Will keep you informed of how it goes.
Crolyn xx
Hi all,
I had my second lot of xolair injections today and became unwell about four hours later with felling really hot, clammy headache tingling lips and generally unwell hard to describe how i felt it was wierd. Resp nurse advised me to go to a + E which i did do, they thoughtit could have been a reaction to xolair. Has anyone else felt like this after xolair?
Thanks
Carolyn xx
After my 3rd injection of xolair i became unwell a few minutes after. To begin with i felt hot and dizzy. Then my eyes and face started to swell and i had problems breathing, so i was sent to the medical admissions unit. For a few months my consultant refused to say that it was an allergic reaction, but the respiratory nurse said it was. She was the one who gave me the injection. So eventually it has been documented as a reaction to xolair.
Hope you feeling better now.
Sarah
Several people have said this to me in terms of allergic reactions to Xolair, and I find it very bizarre that so many consultants seem to refuse to acknowledge the possibility of being allergic to Xolair. Even if you are not allergic to omalizumab, the active drug, Xolair contains several other ingredients or 'expedients' including polysorbate which is well known to cause anaphylaxis in a minority of individuals.
Pre-release trials showed the rate of anaphylaxis to be at least 0.1% and subsequent reporting has shown it to be more like 0.2%. Warnings about anaphylaxis are plastered all over the Xolair website in both the patient information section and in several different places in the healthcare professionals section. They are also clearly printed on the information leaflet that comes with the drug.
If a consultant is unaware that anaphylaxis to Xolair can occur, or refuses to acknowledge it, that suggests to me very irresponsible prescribing, as it implies that they have not even read the drug information. It is also failure to get proper informed consent to use the drug if your consultant has not warned you about the risk of anaphylaxis.
The website xolair.com is very informative about this and other Xolair issues.
Em H
Thank you for the replies. I had a long chat with my resp nurse on Thur. She has reorted the reaction I had via the yhe company and yellow form for drug reactions. She has said that they are happy to continue with the treatments as long as I am. She said I would need to be admitted to ward, rather that give it in outpatients.
Thanks again
Carolyn
Hi all,
just thought I would give you an update. I have now been on Xolair for three and a half months now and am now really starting to feel the benefits of it. have managed to stay of pred for a weeks now and am sleeping much better. It did take a while before I noticed an real difference. I recieve the last injections in the trial in 2 weeks. Hopefully it will continued. I am still having few problems with work but no way near as many as I was having.
Carolyn
Carolyn, thanks for the update, and it's so good to hear that you're doing so well on Xolair. It's not for all, and inded wasn't for me, but it's great that it seems to be working so well for you :o) I do hope, seeing as it's helping you, that you get to continue on it after your trial finishes.
Becky.
Hi carolyn , Thats great glad you are feeling better for the xolair. Did you have an allergic reaction each time to the injection and what is done for that? Hope you don't mind me asking but in what sort of ways has it improved your asthma?
When I first was told about xolair by my GP several years ago I thought it would be a wonder drug but I have gradually realised that there can be severe reactions to it.
Sandi
I have had some reactions to it. I have been quite unwell after the second and third doses. After the second dose I ended up in A&E. The reaction happened a few hours later. My resp team thought it wasn't due to xolair as it happened a few hours later. I know now that reactions can happen upto 24 hours after the injection. I felt really hot, clamy, lips were tingling but did not swell. Also had a headache and felt faint at one point. I was scared as I also felt spaced out. The third time I experienced the same symptoms but not as severe. However the headaches were quite severe they settle after 24hrs. The reaction were reported to Novartis (The drug company) I was asked whether or not to continue with it. The advice from my team was to continue with it and see how I was with the next dose. I did. I do worry about what could happen. They have decided to keep me hosp for the day and monitor my symptoms. However my reactions after the second dose were not relayed to my resp nurse and cons. Found this out when I was in clinic and my resp nurse thought iwas well after it.
The main difference I have noticed is that I am sleeping much better only waking once or twice for salbutamol, a couple of puffs and back to sleep. I have even managed a few full nights sleep. I am managing better at work, still having a few probs though. However I have been off for two weeks anual leave, so time will tell. I have also been of pred for a few weeks (4) which is the longest in around two years. I am able to do more things, I went to Go ape for a friends birthday, which is an obstacle course in the trees with zip wires and stuff. I must admit I did find it hard and took me much longer to complete it than most, but I managed it. Did need to stop quite abit for inhaler. I have enjoyed a few night out with firends without endeing up in A&E, which was a regular occurance, and not much fun for my friends. So in the end I did not go out as much. Plus the no smoking has helped a lot too.
My peak flows have improved. hey are much more on an even wasve, where as before they were all over and had some serious dips. I ahve also only had two admissions since being on it. One of them was a HDU. A few months ago admissions were a regular occurance
Carolyn
Xolair stories...
Xolair Trial
2nd Xolair Injections
Xolair
Xolair Approved!
