Mast Cell Disorders Forum

Britt Mentor Offline I Love YaBB 2! Posts: 327	Xolair 01/26/14 at 11:18:42 Hi! I posted a couple weeks ago, but thought I'd try again. Has anyone tried Xolair? My allergist is in the preliminary works of getting me approved for it. Wondering if anyone has any feedback or experience. Run by fear of medications, I'm afraid of a shot, that if I have adverse reactions, or makes me feel weird, it will not be out of my system right away.
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Aggie48 Tutor Offline I Love YaBB 2! Posts: 31	Re: Xolair Reply #1 - 01/27/14 at 13:29:00 I have not tried it, but if you do decide to try it, I hope it will work well for you. What symptoms are you experienciing?
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Britt

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Re: Xolair
Reply #2 - 01/27/14 at 16:47:36

Thanks for Your reply Aggie!
symptoms....I could go on and on, but here are my main ones..
Angioedema, tongue sores, headaches, stomach pains and nausea and sometimes vomiting (😝) the fight or flight feeling like my gut is in knots, dizziness, irritability, nervousness, depression/anxiety (especially when exposed to anything with fragrance) and BRAIN FOG!! When I feel really "active" I can't even tell you the name of our president! Yikes! And problems with foods and medicines, Especially herbal things and plant oils.
I'm really hoping Xolair can help some of these.
I've just had a really hard time tolerating medications. The thought of a shot kinda scares me, but I may have to suck up the fear and hope for the best. According to my doctor, Xolair isn't a "medication", it's somehow an antibody (I don't quite understand) but he said that what Xolair will hopefully do it trick the T cell into passing the antibody I have (autoimmune urticaria) through the bloodstream. Usually the T cell delivers the antibody to the mast cell receptors and that's when the problems start.
But I saw on the link to Dr. Castells article that Xolair is also a medication for MCAS, which some docs think I have, others do not.
My current allergist says that because I have a normal tryptase, there is no way I could have MCAS. But from things I've read, this may not be true. I don't know.

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Aggie48 Tutor Offline I Love YaBB 2! Posts: 31	Re: Xolair Reply #3 - 01/28/14 at 07:50:56 Bless your heart! I am so sorry you are having such a rough time. I have had every symptom your describing and it's absolutely terrible. I think for all of us on here the thought of trying any new medication is very scary!! And the fact that it's a shot and will stay in your system longer makes it even more so. I will keep you in my prayers!!!
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Ladybug

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Re: Xolair approved by FDA for Idiopathic Chronic Urticaria
Reply #4 - 03/21/14 at 17:10:18

I saw my allergist today and he told me that he is going to apply for Xolair shots for me with my insurance company to treat my idiopathic chronic hives (ICU).

Any experience you have had with your insurance company and your Xolair treatments would be appreciated. I sure hope that my insurance company will approve these. Thanks!

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mountain girl

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Re: Xolair
Reply #5 - 05/02/14 at 07:31:23

Hi all,

I am really interested in reading more about everyone's experiences with Xolair. It seems like Xolair is going to be the next common mast cell treatment. I am scheduled for my first treatment next week.

Brigitte...thanks for posting "how xolair works". I found a completely different action while researching, but I will ask my doctor next time I see him. I read that the injection is formulated just for you based on your IGE load and is delivered pre filled to your doctor. Xolair is a synthetic IGE that binds to the receptors on the mast and basal cells so that the real IGE can't bind...thus blocking the release of mediators. The T-cell action is also interesting...

I wonder if doctors really know why it works. Sometimes I get the feeling that they are just trying it because it seems like it should work. How does it feel to be a lab rat Wink

I do not have asthma or chronic hives but my immune doc is putting me on Xolair. He said we would know if it was working in a month or two. I am just glad there is something to try, because I can't believe that this is as good as my life is going to get.

The whole process of getting on Xolair has been interesting, especially since I do not have asthma or hives. Luckily my doctor knows how to work the system, and I was quickly approved by my insurance company. The drug company called me to go over insurance coverage. They estimated the treatment will be around $5000 an injection. CRAZY! These mast cell drugs are not cheap. Then the Xolair rep told me my insurance will cover 85% of the cost. Nice, but that still leaves a huge copay! But then she said there is a grant program that gives Xolair users $4000 a year to use towards copays. I already have my "credit card"! They will pay 80% of your copay each treatment. I guess no one would take this drug if they had to pay those crazy copays! I wonder what my actual payment will be when the dust clears...

Crossing my fingers that this works and at the very least doesn't cause my body to move towards a whole new level of crazy!

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Ladybug

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Re: Xolair
Reply #6 - 05/11/14 at 04:13:50

Britt wrote on 01/27/14 at 16:47:36:

Thanks for Your reply Aggie!
symptoms....I could go on and on, but here are my main ones..
Angioedema, tongue sores, headaches, stomach pains and nausea and sometimes vomiting (😝) the fight or flight feeling like my gut is in knots, dizziness, irritability, nervousness, depression/anxiety (especially when exposed to anything with fragrance) and BRAIN FOG!! When I feel really "active" I can't even tell you the name of our president! Yikes! And problems with foods and medicines, Especially herbal things and plant oils.
I'm really hoping Xolair can help some of these.
I've just had a really hard time tolerating medications. The thought of a shot kinda scares me, but I may have to suck up the fear and hope for the best. According to my doctor, Xolair isn't a "medication", it's somehow an antibody (I don't quite understand) but he said that what Xolair will hopefully do it trick the T cell into passing the antibody I have (autoimmune urticaria) through the bloodstream. Usually the T cell delivers the antibody to the mast cell receptors and that's when the problems start.
But I saw on the link to Dr. Castells article that Xolair is also a medication for MCAS, which some docs think I have, others do not.
My current allergist says that because I have a normal tryptase, there is no way I could have MCAS. But from things I've read, this may not be true. I don't know.

Thank you for sharing this information. I am interested in that link where Dr. Castells refers to Xolair for MCAS. Would you still have it? Thanks.

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Ladybug

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Re: Xolair
Reply #7 - 05/11/14 at 04:28:13

I received my first Xolair injection this past Thursday (today is Sunday). I met with a PA who reviewed my history and the Xolair process with me. She mentioned a couple of times that I am not to self-reduce my medicines for four months. I kept telling her I wouldn't. They sent me back to the waiting room while they mixed my Xolair, which would take 20 minutes.

Another person called me into the shot room. She, too, reviewed what she was going to do and also kept telling me not to self-reduce my current medicines. I also had to initial a paper agreeing to that and what I understand, etc. No problem.

I received two skinny-needled injections, one in the back of each arm. Boy did I breathe a sigh of relief because I'm a weenie when it comes to needles! I took a deep breath and braced myself for the worse and then felt silly because I barely felt them. It's because the needles are so thin and probably very short. No more fear for me. Whew! Grin

Two 150 mg of Xolair are to be given every four weeks. The first four rounds require me to sit in the waiting room for two hours. After that, I will only have to wait 30 minutes after each shot. I must carry my two Auvi-Q injections with me at all times.

This doctor's office charges $2,800 for the pair of shots. Genetech will help patients with their co-pay provided their total income is under $100,000 USD per year. Patients who are on Medicaid, Medicare, or TriCare insurance, even if income is under their current level, do NOT qualify for assistance.

Reactions? Previous shots for flu and shingles created huge red, swollen, hot welts alongside my entire arms to my elbow. Miserable. I noticed a headache developing, no pain in either arm. When I awakened, the first thing I did was touch my arms to realize that I felt no pain. Then I got up and checked my arms in the mirror and they were perfect. I could not even seen anything at the injection sights. Grin

I read that some patients had a headache that lasted two days. Mine started shortly after the shot, peaked by evening and started to decrease Friday and Saturday. By Saturday mid-morning, I would say it was gone.

I hope this information will be helpful to others!

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« Last Edit: 05/11/14 at 15:28:59 by N/A »

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Ladybug

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Xolair - Does it affect other Mast Cell Symptoms?
Reply #8 - 05/11/14 at 04:32:14

Hi all,

I am curious about the Xolair shots. If we take these shots to treat our skin for Chronic Urticaria, does Xolair also affect mast cells in other areas of our body such as in our stomach, intestines, bladder, brain fog, muscles, etc. I would like to find this out because MCAS affects me in all these areas. Any links would be helpful. Thank you!

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Britt

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Posts: 327

Re: Xolair
Reply #9 - 05/11/14 at 11:41:37

Hi ladybug!!! I don't remember where that link was Undecided

. But Dr. Castells did say to me directly via email that she thought xolair would be a good option for me.
My sleazy (lol) allergist is supposedly trying to get me qualified for xolair. But I haven't heard from him in some time. I doubt he's doing anything. Part of me has been fine with this because I am scared to take it. I react to EVERYTHING! I give you major props Brenda for taking the leap! PLEASE PLEASE keep me updated on your experience. Good luck!!!!! I hope it does wonders for you Wink

Brigitte

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Britt Mentor Offline I Love YaBB 2! Posts: 327	Re: Xolair Reply #10 - 05/11/14 at 11:45:40 Mountain girl!!!!! You're taking it too!!!!! So totally interested in how you're doing!!! Did you find out how much you will have to pay out of pocket? I hope and pray it's helping!!!! Keep us updated! This could be great news for all of us!
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mountain girl

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Re: Xolair
Reply #11 - 05/14/14 at 12:54:52

One week post injection...no change good or bad. Still don't know how much it will cost. I did get a xolair copay card good for $4,000/year and they never asked me income questions, only if I was on a government sponsored insurance or drug program.

There is a mention of Omalizumab
for treatment of mcas in Castell's article on page 9 under clinical therapies..specifically for cardiovascular, pulmonary and anaphylaxis symptoms.

Expanding Spectrum of Mast Cell Activation Disorders:
Monoclonal and Idiopathic Mast Cell Activation Syndromes
Clinical Therapeutics/Volume 35, Number 5, 2013 · Atopic Clinical Entities Update

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mountain girl

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Re: Xolair
Reply #12 - 05/14/14 at 14:17:10

I find it interesting how different my first Xolair injection experience was from Ladybugs. Apparently I go to a very laid back doctor! I was asked if I have any questions regarding Xolair in the same appointment when I found out he was recommending Xolair. Who can think of questions right on the spot like that!?

On the actual injection day I wasn't told anything. The nurse didn't even know my history and started telling me how great it is for asthma and chronic hives. I just smiled and said, I don't have either. Another staff member had called me a few weeks earlier to see if I would join the Xolair asthma study. Ummm don't have asthma! This practice has lots of people on Xolair. Apparently I am the first for mast cell issues.

I didn't get a lecture on changing meds or not changing meds. No epi pen. No consent forms to sign.... I just hung out for an hour, had my vitals re-checked, and went on my way. No patient education on anaphylaxis. Of course I worked in sports medicine for 10 years, so no education needed. And all of us on these forums are pretty up to date on the subject!! haaa I am pretty laid back about anything medical, and cant stand all of that procedural crap and hand holding. I know many are the exact opposite. It is interesting, the contrast between our experiences. I wonder if this practice has gotten lulled into a state of complacency because they have so many patients on Xolair...and probably not too many post injection complications.

Being in the 'procedure' room surrounded by all of the resuscitation equipment, the defibrillator, and chest full of cardiac drugs was a bit alarming at first! I didn't even know they had that room. This office is freestanding, at least 10 minutes from the nearest ER, so I suppose they have to have it.

This is a link for a pretty comprehensive injection protocol and information on Xolair and anaphylaxis. It is based on asthma patients. The occurrence of Xolair induced anaphylaxis among that population was very low. I would say it is probably safe to assume that the number would jump substantially when treating mast cell patients. But it is going to be a while before those numbers are available.

http://www.aacijournal.com/content/6/1/32

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Ladybug

Ex Member

Re: Xolair
Reply #13 - 05/25/14 at 18:26:06

mountain girl wrote on 05/14/14 at 12:54:52:

One week post injection...no change good or bad. Still don't know how much it will cost. I did get a xolair copay card good for $4,000/year and they never asked me income questions, only if I was on a government sponsored insurance or drug program.

There is a mention of Omalizumab
for treatment of mcas in Castell's article on page 9 under clinical therapies..specifically for cardiovascular, pulmonary and anaphylaxis symptoms.

Expanding Spectrum of Mast Cell Activation Disorders:
Monoclonal and Idiopathic Mast Cell Activation Syndromes
Clinical Therapeutics/Volume 35, Number 5, 2013 · Atopic Clinical Entities Update

Hi Mountain Girl! Would you have a link for Dr. Castells paper? I have a large chapter by Dr. Afrin, but nothing from Dr. C. Roll Eyes

It's been 17 days since my shot---NO hives---NO pressure or heat hives---NO angioedema. I keep waiting for the other shoe to drop as this is amazing. I sure hope I don't end up disappointed, but I feel like I'm headed in the right direction. I am even stepping out and eating high histamine foods. I think I got glutened the other day at a Mexican restaurant and had stomach pain for 2 days. I'm going to keep experimenting.

Brigette, please keep us posted. It would be great if you could try Xolair. Grin

Way past my bedtime at 10pm. Sweet dreams, all!

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Ladybug

Ex Member

Re: Xolair approved by FDA for Idiopathic Chronic Urticaria
Reply #14 - 05/27/14 at 08:43:06

Quote:

I saw my allergist today and he told me that he is going to apply for Xolair shots for me with my insurance company to treat my idiopathic chronic hives (ICU).

Any experience you have had with your insurance company and your Xolair treatments would be appreciated. I sure hope that my insurance company will approve these. Thanks!

After 17 days of no hives, no pressure hives, no angioedema I finally broke out with one hive "dot" on my foot. 18th day that one disappeared and another hive "dot" appeared on my calf. Sad

Received word from Dr. Castells that it could take about 3-4 rounds before I notice any improvement. 10 more days before I get my 2nd round of shots. Never thought I'd find myself looking forward to injections as I have always been such a chicken!

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