I have had terrible hives and angioedema for the past two days. I look like I've had lip injections. And my hands are both incredibly swollen. I'm itchy to the point of misery. I'm going to see my PCP this afternoon. I already take Claritin and Pepcid daily. I try not to attribute everything to my MPN as not everything is caused by the MPN. I can't help but wonder if this is related. It popped out of nowhere. Has anyone else had a problem like this?
I'll report back after I get home from the clinic.
Update: I have ACE Inhibitor Angioedema. It's a non-allergic reaction.
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Lena70
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Turns out I had a rare reaction to my blood pressure medication. It's called ACE inhibitor-induced angioedema. I can never take an ACE inhibitor again. My face started swelling up at my doctors! It had nothing to do with histamine which is why the benadryl didn't work.
I had a terrible reaction to lisinopril six months in. Only my allergy doctor knew what it was and he knew immediately. My face was the primary site of swelling.
I was like that with an allergic reaction to hydroxy.Covered in hives incredibly itchy, was given a steroid cream to use ,took some time to get rid of them.
Sorted out. It was a reaction to my blood pressure medication. I can no longer take it and I'm on high-dose steroids to stop the reaction. I could really use a break from all this rare stuff.
I have ET CALR and take Hydroxicarbamide & aspirin. I had a long phase of angiodema attacks but following consult with an allergy specialist it was established that it was idiopathic, i.e. not caused by allergy. I was prescribed tranexamic acid tablets to take at onset of attacks plus epi-pens just in case it ever got really severe. I’ve never had to use the epi-pen but it’s a huge reassurance, and I learned to manage the attacks with the t/acid. Lena70, the cause of your angiodema is more specific but I am wondering if you have been offered these meds in order to manage what can be a really horrible experience when each attack occurs?
I'm so glad that you have found a solution to your attacks. I'm 24-hours out from my last lisinopril and the angioedema is lessening. I feel so much better already. I hope it doesn't recur, but if it does, I'll ask about tranexamic acid.
Hi, my sister had ace inhibitor induced angioedema last year. It started in her tongue and only on one side initially. Thank God the ER Doc recognized the problem and as her tongue continued to enlarge she had to be intubated and kept in ICU until the swelling subsided. I don' t exactly remember but the benadry and steroids did nothing for her and I think she had to be given fresh frozen plasma which quickly (relatively quick) caused the swelling of the tongue to subside. I only mention this so that you can keep an eye on your tongue also and if it would start to swell I would go straight to ER. Hoping your problem is quickly resolved. I also take lisinopril and after this episode I tried losartan but it caused an immediate drop in my EGFR down to 43 from 88 and I had to DC the losartan so if you go to losartan I would recommend having your EGFR checked about 3-4 weeks after starting. This is not medical advice just a sharing of experiences. Best to you always.
Thank you for your message. That must have been a traumatic experience for your sister and your family.
I will keep the EGFR levels in mind in case I have to go on a different blood pressure medicine. For right now, my doctor is going to leave it untreated unless it gets higher. I'm borderline high right now.
My lips are still swollen this morning. I look like Barbara Hershey in Beaches.
Glad they've managed to work out what it was and hopefully you can avoid ace inhibitors in future. I've had 2 severe episodes with lip/tongue swelling and all over body urticaria/angioedema. The 2nd episode was really scary as I was fainting whilst lying down and I was on my own when family were away. I was initially concerned it was systemic mastocytosis which can be linked with our conditions but that was ruled out on tests. I've since carried an epipen and since I've progress to post PV MF the higher dose ruxolitinib seems to be helping to stave off any more episodes. I can imagine you were very scared. I have fexofenadine in as the recommended antihistamine for urticaria if it does flare again but so far so good.
My doctor ordered a few labs in case it wasn't the lisinopril inducing the attack. He's very thorough. I'm quite lucky to have found such a good PCP.
He seemed quite perplexed at the swelling in my hands. After I wrote my initial post here, my feet also started swelling. By time I got to his office, I was limping as my right foot was so painful. It has been a truly bizarre experience. I'm realizing now how much trouble I would have been in if I had taken another lisinopril. I'm 24-hours out from my last pill.
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