Saw a vascular specialist for the first time yesterday. She confirmed that I have both of these conditions and calls is vessel wall instability since I have a combination of the two. She is looking into the possibility of an infusion of either lidocaine or ketamine. Has anyone else had success with either of these (if you have both conditions)? I often see posts for iloprost, but haven't seen these drugs so much. However, I am in the US, so that maybe is the difference. She also mentioned that some have found relief with topically using an ointment for hemorrhoids. Any comments on that? Thank you.
Infusion for Raynaud's and Erythromel... - The Erythromelalg...
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Infusion for Raynaud's and Erythromelalgia?
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Goldyukr
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Hi goldyukr
How are things? Have you had treatment yet?
Am curious because my rheumatologist upis offering me iloprost infusions. I have simultaneous raynauds & erythromelalgia too. I'm getting the impression iloprost is good for both conditions.
I'd say my raynauds is as bad, if not worse than, my erythromelalgia. My raynauds began in childhood but my erythromelalgia began at least 10 years ago, before I turned 50.
🍀🍀🍀🍀 coco
Hello, Coco! Sorry. We were away on vacation with no internet. I just posted a comment on your other question before I saw this one. I was told by my vascular specialist that iloprost is really for just raynauds. But I can't say she knows everything on the subject. She recommended either lidocaine or ketamine but it's really more for the constant pain I have whenever my legs are lowered or I walk for very long. It's become rather debilitatating as of late and seems it's not necessarily connected to the usual stimulants for those conditions. Mine seems to be stemming from my nerve problems (small fiber neuropathy) and is doing it's own thing. Please do let me know what you find out as I am always searching for some relief!
Hi! Thanks for replying...I hope you had a happy holiday!
Yes, me too: early onset small fibre neuropathy...alongside small vessel vasculitis. Secondary to my infant onset systemic lupus , early onset sjogrens etc etc...no picnic!
In case anyone here is interested in this subject, here is the reply I gave you on the Scleroderma & raynauds forum:
Yes, this has been my concern....& I have experience: back 7 years ago when my EM (simultaneous with RP) was first diagnosed, only 3 days of daily nifedipine permanently made my EM several degrees worse...the FLIPPIN rheumatologist hadn't warned me of this danger...if he had, I'd have stopped nifedipine 2 days sooner!.
Lately, I've revisited my info & links on EM + simultaneous RP&EM. I've found more detailed info...my impression is that researchers & consultants are understanding things a bit better. In one study, the conclusion is that there are various subsets of EM, and each subset relates to a "more specific" underlying causality. Depending on which causality is involved, certain treatments are more likely to be beneficial....in both EM on its own & in RP&EM. I'll hunt down this paper & post the link
Meanwhile here is a particularly relevant link:
clinexprheumatol.org/articl...
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Thank you for that great link. I will read up on it. I also had a terrible reaction to nifedipine but stopped it immediately. The one I didn't link to giving me flare ups was amlodipine. It came on gradually and I didn't realize that was the cause. Two months later (after things had gotten horrible) I finally came off of that and was so happy that the daily flares stopped. Had a bad one last night though after my husband gave me a small amount of whiskey for my sore throat. No alcohol any more. I looked terrible. Live and learn...
👍👍👍👍 live & learn is right 😏...am going to beware of amlodipine! Thanks
No alcohol tempts me too...except I have so many other triggers that affect me just as much: I figure one way or the other I'm destined to have to endure EM flaring on a daily cycle, eg activity, sitting or standing, heat, excitement, the last 12 hours of each day etc etc part of every day 😉 the odd glass helps them bear this scourge...
Hi. Hope you are doing well. Just curious how things are progressing with this. It seems we may go ahead and try the ketamine infusion for me. Just verifying the cost. There's a long waiting list though so it will probably take a couple of months to get an appointment. I really liked that article you sent me. Thank you. I'm sending it on to my vascular specialist. Take care
Am still distracted & preoccupied by gastroenterology: glad they're taking me seriously & keeping me in clinic indefinitely. Probably won't discuss RP&EM with rheumy until early August
Thanks for keeping me in the loop: am v interested in how things are going
Take care
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