Verapamil Allergy/Vasculitis

[MeganMN]

I am so, so devastated. I have been down a long road of medications for my persistent PACs/Bigeminy. They were able to ablate the SVT but couldn't get the PACs. So at the end of a long road of meds, I finally found Verapamil, which actually stopped the PACs, and I was so, so thankful. I was able to sleep, exercise, and feel almost normal for two weeks. And then......... I had a terrible allergic reaction and got vasculitis. I'm trying not to freak out. I had to stop the Verapamil immediately and also deal with the possibility of larger issues from vasculitis. It was so scary. 🤕

[Ppiman]

Hello Megan

Our friend has had vasculitis for a couple of years now, and it homed in on her kidneys, sadly, causing her many initial problems. This was considered to have been caused by an earlier attack of covid, in her case, but for many months was initially treated as "long covid" and rather ignored sadly and to her great detriment.

I presume your doctors are certain that yours is definitely caused by the verapamil? You'll be rather aggressively treated initially with steroids, I guess, until your immune system re-balances, takes over and settles it all down.

How are you feeling (apart from anxious and fed up with life!)?

Steve

[MeganMN in reply to Ppiman]

Thanks Steve. I am so bummed. This was literally the only med that worked. And the reaction was super severe and super scary. I won't know for weeks if there are any long term complications. My joints are still ridiculously painful and swollen. Mine was definitely caused by the Verapamil. It occurred and worsened as I took it and has almost resolved after stopping. I can't take steroids because they cause severe arrhythmia, so for now I am just taking Colchicine for the joint stuff and a bunch if antihistamines. I'll have to get labs rechecked but man, what a bummer. I am hopeful that there won't be any long term complications as it was caught pretty quickly. My hemoglobin dropped two points, and some abnormal kidney and liver function, but not terrible. Just the joint pain and swelling so far that has persisted . not sure what is next. I won't be taking any more heart meds. I'm not sure what will happen. I see the EP on the 17th.

[Ppiman in reply to MeganMN]

From what you describe, it will resolve quickly now the drug has been withdrawn. Are you taking other drugs, as it might have been a combination. I've read that statins can be a problem with verapamil, for example. I didn't know joint pain was a feature of vasculitis but it seems such a wide ranging condition rather than just being an inflammation of the blood vessels. I've just read that it often presents as something called 'purpura' (purple blotches often on the legs) and the pictures of that look pretty awful. Yours does sound like a severe reaction of some aspect of the joints.

What a thing to have to put up with. I start flecainide today, so I have my fingers crossed as my arrhythmia problems are much more frequent these days.

Steve

[MeganMN in reply to Ppiman]

Yes, it is getting better pretty rapidly. It started with an upper body redness that burned. Then I got the Petechia and I knew it was something bad. I was totally mottled all over and that is when I kind of freaked out. I had just gotten home from a super long 12 hour shift in the ER on the 4th of July. I lucked out because my heart hospital has Cardiologists and EPs on call all the time, so I was able to chat with a nurse and get advice right from the EP, even at 9pm on a holiday. He knew right away what it was. That night I had the most severe pain. I guess you can actually get bleeding into the joints, which is what makes them hurt. It was awful. I'm done with all that. I'm going to try Propranolol even just to help with the anxiety and just deal with the PACs until I see him next week.

[Ppiman in reply to MeganMN]

Well - that was a most unpleasant experience and one most people will never come close to. Goodness me, Megan.

We often forget that the drugs we mention as if they were not far from Smarties are, in reality, powerful little pills. This could be one reason why beta-blockers are the first choice.

I do hope it will be onwards and upwards for you, now - at least from this unwanted adventure. Let’s hope something else can be found to sort out your errant heart. I’ve just started flecainide this morning so have my own fingers crossed!

Steve

[MeganMN in reply to Ppiman]

Got my labs rechecked today and they are still going in the wrong direction, ugh. So more follow up to come. And the EP office called and said that they won't do any more meds because of my reaction and that my only option is another ablation. 😔

[Ppiman in reply to MeganMN]

Oh dear. Life flows gently for many, stormily for some! Poor Megan. I started on flecainide yesterday but although I was largely in NSR all day, I had strong palpitations several times which I didn't feel at all comfortable with, and hot flushes. I'm just waiting to speak to my GP, but I expect he'll want me to get in touch with the specialist (much less easy over here).

Steve

[Tapanac]

poor you I feel for you my Mum had vasculitis also known as temporal arteritis and she so suffered for months, then we took her to another hospital as it was affecting her Eyesite as well as the dreadful pain making her sick as well and we saw a wonderful army doctor who knew exactly what it was and started her on a massive dose of steroids (prednisolone) and within less than a week she felt better. Eventually after gradually weaning off of them she was cured. The original GP snd hospital were just telling her to take aspirin or ibuprofen which of course was making it worse.

She wasn’t on any medication and fairly healthy for her age so it wasn’t pills that caused it as you know vasculitis is inflammation in arteries snd blood vessels in the head

All the best to you