Starting Xolair Next Week

[MD279]

I just ended up in an ambulance and the ER for the first time in my life with an acute attack of chronic idiopathic urticaria angiodema, due to my thyroid disease, Hashimoto's. The hives are inside my body, so it swells and inflames, shutting everything down, including my ability to breathe. I'm on my knees. Can't believe it. It flared up, because I've got a slight cold and scratchy throat. Apparently the auto-immune system goes into overdrive to fight the cold, and produces too many histamines. My body swells with liquids everywhere, but it feels like it's pumped with cement - fingers, toes, hands, arms, legs, face, everything. No rash, nothing on my skin - all inside. Corticosteroids not possible. That's how I got diabetes, from cortisone injections for other reasons while living in Europe. Diabetes is in my family, so now it's mine, too. I can only do the Xolair, my doc says, because my diabetes is under such good control due to my diet - SO happy I've always been on top of it. So, I'm starting Xolair next week, and will let you know. I've been home, out of circulation for weeks. I'm pretty resilient, but since I was diagnosed with this in November, my world has disappeared and come to a stop. I'm hoping to get my life back and say good-bye to the fear of another frightening attack. I'm currently following my doctor's instruction's to take six 24-hour anti-histamines a day, but it's not enough. Also, horrible allergic reactions to aspirin, ibuprofen, and other inflammatories since this condition came on. Fingers crossed. Hoping, hoping. To be continued... Good luck to all of you. (BTW, my insurance will cover it, especially since the ambulance ride alone was $2,000).

[Chrystalheart]

This is an old thread.. not sure if you are all still around.. but wanted to chirp in that I have Hashimotos and Hypothyroidism.  I was muddling along.. accumulating symptoms for a long time, but it wasn't until my thyroid finally died that things exploded and the angioedema got ridiculous and I started having anaphylaxis and my allergies got so completely ridiculous.  I didn't realize until I had a breathing treatment how bad my breathing had been from the inflammation.  I'm starting xolair tomorrow.  Hopefully it helps with it all.. angioedema, urticaria and asthma.  I am very limited on diet right now.  I have discovered since everything went belly up that I also have IGG deficiency, oral allergy syndrome (where your environmental allergies cause you to react to food plants in the same family) and oral latex syndrome (actually I knew about the oral latex syndrome).  I'm eating very little plant based food right now.  I'm looking forward to more diversity in my future.  I also discovered that my B cells and T cells are deficient and one of the complements (C4) is also up and down.  All of those are related to immunity.  What really struck me, is that so many people on the thyroid panel I am on for Hashimotos have the SAME issues.  Not as many diagnoses.. But, angioedema, urticaria, asthma, stomach pain, organ pain, eye blurriness and double vision, fibromyalgia.. it makes me wonder if there are underlying immune disease processes at the root and they just keep spreading and manifesting in different ways because the deficiencies become more deficient over time, shutting down and impairing processes all downstream from the immunity systems.    

I'm going to be getting one shot a month.  My IGG was 177 and is currently 150, so they think that is sufficient.  And they are considering igg infusions for the IGG deficiency.  I'm getting a hypoallergenic multivitamin from kirkman's pharmacy online.  

At  any rate, I hope you are both doing much better.  I know what it's like to have this eat up your life.  And you all seem to have had a tough time of it.

All my best,

Jen

[bsmsl]

Hello again.

I am feeling better still and less reactive to my usual triggers.  I am having some problems, but that is because I have cut back on my allergy shots.  I don't have insurance now and the business manager at my doctor's office is ... well... She isn't very nice.  They have had 8 business office personnel quit in the last 1 1/2 years.  Some medical staff have left because of her as well, and they lose at least 5 patients a week because she is so rude.  I have already picked out a new doctor.  I am just waiting for the right time to switch.  I will have a meet and greet apointment with the new doc to see if he wants to take me on.  lol  He is actually sort of an acquaintance, so I don't think I will be too much of a challenge for him.  Then I will have a last apointment with my current doctor to tell her why I am leaving.

I decided it was in my best interest to let this doctor do the aspirin treatment on me for several reasons.  First, I didn't think a new doctor would want to start there with me and I didn't want to wait another year to have it done.  Second, I really do trust her and her medical staff with my life.  I really do believe she is the best in the area.  I am sure I wouldn't be so trusting of another doctor and staff.  I will hate to leave her and her staff (with one exception), but one person can really ruin a place.

The business manager actually yelled at me a few weeks ago for a problem she created by not returning my phone calls and over something she had promised me she would do but didn't.  The next week, I was in the waiting room waiting for a nurse to bring me some paper work and another patient came in being gruff with the receptionist because the woman hadn't returned two of his phone calls either.  She really needs to be fired, but I can't figure out why the doctor keeps her around.

I have talked with a lot of people about Xolair.  I have never heard anyone say that it lasts over a month.  Everyone I know of on it gets monthly shots.  The first three months they have to stay a long time like you did.  After that the observations time reduces to 30 minutes.  It sounds like after Xolair really kicks in, you may get some real relief.  I had talked to the head nurse at my doctor's office about not getting the shot in April.  She said that if I did that, I would have to start all over on it.  I really don't think it is helping me, so I plan on getting off of it soon.  I am curious to know how you do with that treatment plan.  Does your doctor have any documentation on that?  I pray that it works for you.

Dealing with life changing chronic illness is challenging and brings a lot of life lessons.  That is the main reason I am here.  I have had a lot of usual and unusual treatments and just about every trigger there is for asthma.  It forced me to learn a lot.   I am a teacher, and when I have learned something I need to share it.  

I know for me it was like going through a grieving process - without the anger.  I accepted it, but was still grieved over what I was losing.  I am starting to get my life back, after 3 1/3 years.  I have had very supportive friends and doctors which has helped.  It has definitely been a spiritual journey as well.  

I will go now.  I feel like I am rambling about nothing to some degree.  

God bless.

[MD279]

Hi bsmsl,

Wow, I'm so sorry to hear how bad your asthma is, and how it's conditioning your life. That's great news about the desensitization and your ability to go out and be OK. The party was 5-6 days ago. Thing still getting better? This is great news, because if the desensitization works, then it helps you and your doctors understand which direction to go in.

I did the Xolair injection on Monday. It was actually a mega-dose of four injections at once. I had to wait there 90 minutes to be sure there were no adverse reactions. All the symptoms started to disappear within 50 minutes. I couldn't believe it! I had such great expectations all day to move back into my old, new reality. I did not take anti-histamines that night, and on Tuesday, the beast came back. I literally exploded into tears, I was so disappointed and worried. I was shut down again, back home, waiting for it to pass. Then I took the mega dose of anti-antihistamines again, and it only tried to surface for an hour yesterday, then disappeared. Today the symptoms started to flare up as I was talking to my doctor. I said I wanted to fight it on all fronts and increase the anti-antihistamines even more. He said do it, so when I got home, I took two more A-Hs, and it all disappeared. Fingers quintuple crossed.

So, it looks like the Xolair has made a big dent, and is effective in combination of large daily doses of anti-histamines for now. It's only been a few days, so time will tell. He said that for now, studies show that one dose of Xolair lasts for months, but they don't know if this a one time solution or will need to be repeated. To be continued for sure.... So far, so good. It's one day at a time. If this works, I am one lucky girl. If it doesn't, I will have to adapt my lifestyle personally and professionally, and make the best of what I've got.

I think that sometimes great things, energy, love, and creativity can come from situations that are challenging, and am ready to embrace what happens, to stop fighting and hating it. Of course, I would and will continue to constantly monitor the condition.

Good luck to you and best wishes - MD279

[bsmsl]

I went through the desensitization earlier this week.  Since then I have noticed a decrease in a lot of my symptoms.  I just got back from a party with about 50 at one time.  Ten of which I know had enough cologne on for all for us.  I have not had any problems except mild coughing.  This is really huge victory for me.  A week ago I would not have tried to go.  If I had gone, I would have had an asthma attack 1 hour into the event even though I take up to 6 asthma and allergy meds before going to places like that.  

This was monumental for me.  I feel like I have my life back already.  There are a few things I am going to work back into slowly, but today was a major victory.

God bless.

[MD279]

Hi bsmsl,

Wow, sounds like you've got some good doctors, all right. Mine hasn't mentioned 'desensitization' and I haven't heard of it until you mentioned it, but I sure am curious how it works. I'm pretty tough and will do anything that improves my health.

The last thing I want is more problems and chain reactions, so I'll ask him about it. But I do understand that this is a very complex and unpredictable chain reaction of events within the immune and endocrine systems.

I don't think I'll get off totally scot-free with this injection. Can one be that lucky? I used to run every day along the ocean. Right now, O-V-E-R. Walking's rough enough. I'd do anything for a good run, and have my life and health back. Every healthy day of our lives is a blessing, never to be taken for granted.

Somehow this Xolair will bind the anti-bodies that release too many histamines. My doctor said that this internal hives situation and the allergic reaction to anti-inflammatories is associated with people who have thyroid disorders. But how one leads to the other, I couldn't say, and wouldn't even try. One would need to be well-studied in organic chemistry to be able to make a judgement. I don't think the medical profession knows that much either, but they're working on it.

If I had asthma like you, I would try and do anything, even the salicylate-free diet, just to see if you get your life back. I know you have family, kids, shopping and cooking, but they all want you back, too.

Here's a way-out-there idea, if you're interested... I've done that French 'Dukan Diet,' which arrived in the U.S. last month. It's almost all lean and non-fat proteins plus fiber, which makes you feel strong, never hungry, but you've got to take out all fruit and vegetables for one week, and then slowly add them in. That might work for you, just to focus, have a plan, and give it a try. The book is written by a neurologist who has worked successfully with weight loss for 35 years in France. He's quite famous in France and the UK. Just an idea, and maybe a way to take out all those fruits and veggies temporarily? Check with your doctor first, of course. No one needs more stress or medical problems. As I said, it's just an idea that came to me. I'm not a doctor.

Until next time, take care...

[bsmsl]

I am so glad that you are feeling better today.  

A good doctor makes all the difference.  A good doctor is never complacent, but is always looking for new treatments for the "tough" cases.  I am blessed with a fantastic GP and my allergist is out of this world fantistic.  Both of them do research for me.   I don't really like it when my allergist tells me that my name is all over her notes from conferences, but it does say that she cares.

I am glad that you were already familiar with the first website.  I didn't try the salicylate free diet because I knew I was going to be doing the desensitization.  It would be really tough.  Too many plants (fruits and vegetables) on the do not eat list.  I did start avoiding peanuts though, and I did start feeling some better with that.  I had observed that I felt worse when I ate them.  You may want to keep a journal to see if any of the foods on the list flare your hives worse than others and then avoid the ones that cause problems.

I can relate to the change in lifestyle you are facing.  I am hoping that the desensitization will give me a life back at this point.  I have missed more of life in the last year than I have lived - church, parties, shopping, activities with my kids...  I am not whining.  I really am thankful for where I am at this point.  Stick with your new doctor.  It sounds like he is a winner and will work to get you back to a full life.  

I have been fully screened for thyroid disease as my mother has had half hers removed.  All the the tests were negative.  So I am good there.

I don't know how the Hashimoto's disease figures into your hives.  However, I still do recommend that you ask your doctor about the aspirin desensitization.  When my allergist first mentioned to me, I thought the same thing you did.  "I can take acetomenofen. I am not worried about not taking NSAIDs."  WELLLL.....  in my case, the disease caused by the NSAIDS is progressive and doesn't need more salicylate to keep it going.  It just keeps on going.  NSAIDs triggered a problem with prostiglandins, which then leads to the over production of leukotrienes which causes the inflamation and swelling.  My disease is self perpetuating without the desensitization.  The desensitization was essential to me getting my life back.  I don't know if it applies to your disease, but it may be worth talking to your doctor about since NSAIDs do play a role in it.  Just my thinking.  

I did the desensitization earlier this week.  My lung function was improving through that day, and I have seen a decrease in symptoms since then.  It has been successful for me.  We will now start reducing medication.

Please keep us posted on how you are doing.  
god bless.

[MD279]

Thank you, bsmsl, you're very kind.

My appointment for the first (and maybe only) Xolair injection is set for 10 a.m. Monday, so we'll see. I'm 52, if that helps anyone at all. All of this is new. I spent the whole day at home in bed today, had to cancel work meetings, appointments, everything. Couldn't believe it, because yesterday I was OK. I actually went out to get blood tests and x-rays, though driving was tricky. Today, fingers were too swollen to use the computer, I was too dizzy to think or walk, eyes swollen shut, lips and face muscles felt frozen, paralyzed, difficult to talk, and difficult to breathe, as always. I slept 14 hours last night and 4 hours today. My allergist-immunologist's office called to say I was scheduled for Monday for the Xolair injection. My whole life is hinging on this, which may be too much to hope for? Fingers double, triple crossed.

If it doesn't work, I'm in big trouble, and will have to adjust my lifestyle to accommodate it, which is major and worrisome - can't imagine what I'll do. I stopped by the grocery story to get some basics, with sunglasses, fumbling my fingers, trying to talk, just get in and out. 'Was so exhausted trying to breathe when I got home. It only inflames on the inside of my body. No one can see it, except that my eyelids are swollen shut and facial, lip muscles are rigid. It's hives on the inside, nothing on my skin on the outside.

Yes, doc says IgE levels are way up, that's why I'm a good candidate for Xolair. He's pretty convinced it will make a difference.

I'm not so worried about taking aspirin, ibuprofene and naproxene (Aleve) right now. I just want my basic, human functions back, if possible. If necessary, I can take acetominophen (Tylenol), which is not a part of that group. My allergist is excellent, AMAZING. I had a different doctor in the same group, had an allergic reaction to the anti-inflammatories in February, saw the substitute by chance, who is AMAZING, and has changed my life. Even the staff whispers to me how good he is. Just wonderful, kind, and whip-bang smart.

My allergic reaction to the anti-inflammatories is the same as when I get a simple, little virus. Everything inflames on the inside, and I can't breathe. These symptoms will last as long as the virus, 2-3 weeks, doc says. But I get it for days sometimes, and don't know why. Sometimes we have viruses that are minor, and don't even know it, he says.

I'm really sorry Xolair has not solved your asthma problems. This may be true for me, too. We'll see. Yes, I'm aware of the salicylate-free diet and all the foods and components which could trigger reactions, which my doctor gave me. The list is enormous. He said he was giving it to me with caution. He doesn't want to cause me too much stress, as nothing is proven to cause problems.

Have you got any thyroid or auto-immune disease issues? Apparently, all of mine stem from Hashimoto's thyroid disease.

Yes, my doctor recommended the same chronic urticaria website, which I refer to often, and has been of great help. Here it is again, for those of you who are losing your cookies, like me:

http://www.urticaria.thunderworksinc.com/pages/whatis.htm

I've had no problems at all with all the anti-histamines. I drink tons of water anyway, eat plenty of fiber, so no problems there.

I'm just feeling better these last few hours, or would not have been able to check my email and type this. We'll see what happens tomorrow? 'Not making any plans. Hopes hinged on Monday.

So far, I've been able to escape every single medical problem that has knocked me down hard, like a cat with nine lives. Big 'hopes' for this time, too, and so much sympathy and compassion for anyone battling chronic conditions and illnesses. (I might be joining you real soon).

If you have something similar to my condition, please be sure to seek out a different allergist-immunologist if the one you have is not moving you forward with results. I've been strapped with this since November, seeing a kind and wonderful allergist, but with no initiative or results to help me out.

Since I changed to the new doctor, my life has moved in a new direction with hope around the corner, and perhaps concrete results. Don't settle. Take action. Enjoy every hour of every day.

Best to all - MD279

[bsmsl]

Hello and welcome to the community.

I have never heard of Xolair being used to treat uticaria, but if your IgE level is high it would makes sense.  Please keep us posted.  I am quite interested in how your treatment goes.  I have long felt that it should be used for severe eczema as well.  I pray that the Xolair helps you.

I have been on Xolair for about 1 1/2 years for asthma.  It doesn't seem to be helping me, but we are continuing it until some other treatments are settled.  We don't want to upset the apple cart so to speak.  lol   I am hoping to stop it within the next few months.  We will see how it goes.

Can you describe your reactions to NSAIDS?  I was just desensitized to NSAIDs and I am wondering if it might help you.  I am still doing some research on the sensitivity/allergy, and I am wondering if it could help you.  Also, are you somewhere between 33 and 47 by any chance?  If you are, what I am thinking would be more probable.  With this in mind, I wonder if Singulair might help you some.  It is a defferent kind of allergy medication, an anti-leukotriene.  Leukotrienes cause inflamation in the respiratory system similar to histamines.  Maybe you can talk your doctor into giving you a sample to try.  Just a thought.

You may want to google search a salicylate free diet.  Salicylic acid is aspirin.  They are related.  Just about every plant has some amount of salicylate in it.  You may want to try avoiding apples, broccoli, grapes, and peanuts. to see if that helps any.  I found this link when I searched for the diet just now.  I thought it very interesting.  It sounds like this org might be something for you to research more as well.

http://www.urticaria.thunderworksinc.com/pages/lowsalicylatediet.htm

Also check out this site.
http://www.drugs.com/cg/low-salicylate-diet.html

After reviewing these pages, I think it would be a good idea for you to see GREAT allergist and discus what, if anything, can be done to treat your aspirin allergy.   I am diagnosed with Aspirin Esacerbated Respiratory Disease (AERD).  What that means is that aspirin (and all NSAIDs)trigger a complex chemical reaction which ends in creating inflamation instead of calming it like they are supposed to.  I am wondering if it is a similar reaction for you only you react with hives.  Or do you also have respiratory symptoms?    

I also take a lot of antihistamines, way more the the recommended dose but less than 6.  Are you drinking LOTS of water and eating extra fiber?  The only symptoms to worry about with exceeding the recommended dosage are dehydration and constipation, so you need to take measures to avoid those.  

Please let me know how you are doing and what you find out.  I really find this interesting.

Take care and God bless.