These last few days have been pretty rough but I got my Xolair injections yesterday finally after a huge witch hunt for them . Lol . I had to get UPS to unload a trailer of 2000 packages to find my medicine but I did get it however it takes about a week or 2 to take effect so till then I suffer . Right before my eyes one went from a red knot (hive) to a bruised knot (hive) .😢 I prefer calling them knots rather than hives because that’s what they feel like ; knots under my skin that cause excruciating pain , burn and itch.
Faye Provan I get the bruising too Tessa – it makes such a mess of your skin. I have marks that never go away now.
Tessa Johnston I do as well from itching till I bleed unfortunately .
Samantha Kemp My hands are like yours all the time at the moment. Can l ask do you suffer with swollen fingers and pain with it.
Tessa Johnston Yes unfortunately , it gets so bad sometimes I’m forced to remove my rings before they get stuck on while my fingers swell to little vienna sausages .
Samantha Kemp I thought l was going mad. They have been getting worse and worse.
Tessa Johnston Im so sorry to hear that , the ones that hurt the worst to me are by far the ones on my feet .
Samantha Kemp I have been getting them there as well. But my hands are the worst. Weird how are bodies work. I really hope you get some relief.
Tessa Johnston I hope you do too . Is yours all idiopathic ? Or do you know a trigger ? I have idiopathic & delayed pressure urticaria .
Samantha Kemp They can’t find out what it is. Have had it on and off for 17 months. But the past 3 have been hell. Had them everyday they were getting worse and worse, my whole body was covered. All the antihistimines l was taking didn’t do anything. So have had to take prednisolone to calm it down. Dermatoligist has now put me on Neoral as well as my 3 other antihistimines l am taking so l am hoping it helps.
Tessa Johnston Oh dang. I’ve had it almost 6 . No antihistamines worked for me either , I’ve been on Xolair a little over a year now , it works less and less each injection though unfortunately so on the 27th of this month I have an appointment my Urticaria Specialist in San Francisco & I’m hoping they’ll find something else to work with my Xolair that will make all of this go way for longer periods of time . I’m sooo tired of being in excruciating pain that my friends and family don’t and can’t understand .
Samantha Kemp That is the one thing that l find really upsetting, is that as l don’ t look ill my family think l am exagerating how much pain and discomfort l am in. I could be covered in hives and they still don’t get it. It has me in tears everyday and makes me so moody and depressed. I think people think it can’t be that bad. I say to them have my body for 24 hours and l can guarentee you will change your mind.
Tessa Johnston I agree with 100% , just for a day , although I wouldn’t wish this on anybody I’d just like them to have a little more understanding .
Samantha Kemp Definately agree with you.