I am in desperate need of help and advice

I am in desperate need of help and advice. I was dxd with CIU in October. I get the 24/7 hives and severe facial angioedema of my face. This thing has taken control of my life at this point. My dr has tried me on all kinds of combinations of antihistamines and steroids but I am getting no relief. My dr put in for xolair just before Christmas and the office has been closed since then, reopening the 17th. My symptoms have become so bad that I am taking 20 something pills a day between the meds they have me on. There is no rhyme or reason at all to the angioedema. I have been to the ER on numerous occasions and when I explain my situation and what I was diagnosed with, they either say they have never heard of it and have no idea really how to treat it anyway or they tell me I am just having an allergic reaction to something. I honestly feel like I am being mocked by these doctors and nurses at the hospital. I saw one doctor last week who literally, when he would speak to me about CIU and ask questions, he would literally make air quotes with his hands when he spoke about it. At this point, I am so swollen, can’t seem to hydrate myself, rash won’t go away, extremities are very swollen, and today, when I stand up, I get dizzy and I literally have to stop myself every couple of feet to catch my breath. I can’t go out of my house because people see my swollen face and basically look at me with these faces I can’t even explain or look at my husband as if he abuses me because my face and eyes are so swollen. I have had to quit a job over this. I cant stay awake more than two hours at a time from all the antihistamines. I really feel like this disease is going to kill me. I have never experienced anything like this in my life. I have four kids that I need to take care of and it is affecting that as well. I am so sore right now and the hives are so hot right now. In the last few hours, my joints and shoulders and neck hurt so bad. Please, help, because I cannot take living like this any longer. The pic here is what I looked like this morning and since, the swelling has gone across my eyelids so bad that I can barely see.

Discussion

Mandi Mosser Ugh!!! Been there!! I have mich ER experience .i finally tell them what i need u need a shot of epi .then u need 6 days of 60 mg predisome amd then 6 days of 40 then 6 of 20 then 6 of 10 it goves u RELIEF!!! I am now on methotrexate and cyclosporine until my xolair is approved

Janice McClurg Call your allergist office and maybe see another dr in the office for a second opinion. Maybe they might have s better combination that would work for you. Or increase xolair intervals. Hang in there.

Tracy Colaneri Brokmeier I am still waiting for the xolair to be approved

Jen Neuhaus Benadryl and doxepin has been very effective for me. Xolair had helped a bit too. Some days I will take 50mg of benadryl every 4-6 hours to get the swelling under control

Karen Miltchin Yes, prednisone is all that helps me for now. In the meantime, find people on this group who live in your area so you can get info on doctors who will help. Most of us know how you feel

Carolyn McGill Ross Have you tried the immunosuppressant methotrexate? Methotrexate plus Xolair has given me my life back. I hope you get some relief soon. You look like you are really suffering. Hang in there.

Brigitte Metzger Harding I’ve had success with a ketogenic diet. It eliminated a lot of inflammation in my body and I’ve been able to wean of most meds

Drew Davis I had the same issues .started taking cbd oil and eating s super clean diet .I’m no longer in steroids or medication

Jen Neuhaus You could go in and get a steroid shot and then take a prednisone taper to calm things down.

Laura Rothwell Steroid shot & prednisone worked best for me, maybe try that?

Janice McClurg Bug your insurance company and ask your dr to also. I had to do that. Xolair is the only thing that helped me live a half way normal life after 8 years. Last 2 years on xolair.

Danielle Loughran I’ve been in the ER a few times in the past few months too and they never understand. Now I just tell them I need a steroid shot and a prescription for prednisone. Unfortunately it’s the only thing that works when I swell so bad.

Lisa Coleman Patrick When my face swells really bad, I go in and get a steroid shot. I have been on prednisone since June different mgs.

Ina Wood I’m so sorry 🤗. Have you tried eliminating high histamine foods? Sounds like you may be a good candidate for the shot, don’t give up stay strong the shot has given people there life back. Unfortunately for me most medications I have reactions to so I have to stay natural and watch what I’m eating and drinking

Rhonda DeCouto You aren’t alone. I got this too, all of a sudden at age 48 and for 4 months now. I just got my first shot of Xolair this past Thursday, no help so far. I’m told it can take a few months to take affect. I hope so because that was my last hope.

Mandi Mosser I sure hope it works for u!!! I had read sometimes xair with methotrexate has worked for alot of people

Rhonda DeCouto Mandi Relzles methotrexate is an asthma med, right?

Mandi Mosser No its arthritis but of u google it with chronic urticaria its been proven effective!! Im on that now with cyclosporone and no hives for a week!! I hope ot stays that way but we all know day at a time!

Suzan Wharton The drugs, doxepin to be exact, made me extremely suicidal. I put on 30 lbs in 6 weeks. Jan 2 I stopped all drugs. Hives raged out of control. I ordered organic hemp oil thru amazon and it has made a HUGE difference. Far fewer hives. Itch under control. I feel like i have discovered a miracle. Don’t know about the angiodema, I do get that as well, hives have been my biggest issue. I almost feel like the hemp oil is too good to be true, but it is working for me. I apply it every 4 hours. Best of luck to you. Don’t give up. The meds made me feel dizzy, I was having auditory hallucinations, and extremelt suicidal. ♡

Ana Garcia Tracy there is hope. Xolair was not for me. I did the antihistamine cocktails for months but I could barely function, tried this and that and the other, even starving myself, detoxing, acupuncture, holistic, doxepin for a week and it literally took my breath away, was on prednisone low dose for ten months until I finally tried Hydroxichloroquine (aka Plaquenil, an immuno supressant anti malarial) a year ago and It has kept me hive and angioedema free. It is used on Lupus patients also. My eyes are fine. Get a doctor to look into these immune suppressants for you. I also keep a sugar free, grain free, wheat free diet and I am working on healing my gut to get rid of yeast and leaky gut. Probiotics are a must.

Mel Mack sorry i haven’t read your whole post. there are meds other than antihistamines: singulair, dapsone others. some people react badly to antihisatmines

Evelyn Brethour You can, and will get through this. It takes time, and requires a lot of trial and error, but something will work, in time, to ease your condition. To make this whole journey easier for you, you will need some patience. I agree with Paul, there are a lot of other things that can be used other than antihistamines and prednisone. Your doctors may be early in the process of developing the medical “cocktail” that works for you. Doctors take a conservative approach so that you are taking the least amount of medication to control your medical condition, to minimize serious side effects. It is not unusual to get joint pain with autoimmune flare-ups. I don’t believe I saw how long you have had the hives, but most people will go into remission with medical care. You will find great support here. All the best to you!