Experience with medications

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  • #5032
    CarysCarys
    Participant

    For those with primary Raynaud’s, what have been your experiences with calcium blockers?

    Normally, I vacillate between periods of freezing cold, purple-lilac extremities and red-hot swollen hands and feet.  Somewhere in the mix, my extremities/skin will have a somewhat normal pallor for about a few minutes here and there.  I’d like to know if medications have helped anyone maintain a more even color rather than the extreme variations I have during the course of a normal day.

    #5035
    JudithJudith
    Participant

    Hi Carys. I have secondary Raynaud’s so I can’t really answer your question but I do have a comment. While “freezing cold, purple-lilac extremities” are characteristic of Raynaud’s, “red-hot swollen hands and feet” are not. It is possible you have both Raynaud’s and erythromelalgia. You might want to investigate erythromelalgia to see if it matches what you’ve been experiencing. If you do have both conditions, taking a calcium channel blocker might decrease your Raynaud’s symptoms but increase your erythromelalgia symptoms.

    #5679
    GailsmailGailsmail
    Participant

    I have tried 3 different medications and found that they were only slightly effective and had side effects…headaches, anxiety, tightness in chest, insomnia.  The next step for me is sildenafil (viagara, Cialis) but I have to show first that the first 3 drugs didn’t work so that the government will pay for it.  I think I’m going to live with the annoying aspects of Raynauds  and then when I have an attack see if I can get approval.

     

    #5758
    Birdlistenerbirdlistener
    Participant

    Hi Carys.  I have primary Raynaud’s, and the colors of my toes and fingers sound like yours.  They might be bright white, within minutes beet red, and later, purple or black.  I have been concerned about trying some of the medications, especially since they affect the entire body.   I will share something that was prescribed for me by a podiatrist that gives me relief from pain and even helps to even out the color within five minutes or so.  I apply topical Nitri Bid (Nitroglycerine, ointment,  2 %) after showering and when I have extreme pain in my toes.  I apply the ointment to the base and top of my foot, next to and all the way across the toe line.  The medication I took daily gave me headaches, didn’t help that much, and I can do without it on most days.  But, if I have a bad day in the cold or hurt and have dark toes after a shower, the Nitro Bid ointment, followed by lying down for a few minutes with my foot elevated gives me more relief than the other meds.  I have learned that if I apply the ointment as soon as I see my toes turning as white as a sheet, I can actually lessen the pain before it gets too bad.  That has been my preference, even though my physician wishes I would take another med.  Because I have primary Raynaud’s, my overall vascular system is fine.  It is only in my toes and fingers (mostly toes) that I lack circulation.  (No circulation in fact in the toe that had dry gangrene last year.)  You might ask your doc about nitro bid.  No side-effects whatsoever.

    #5760
    GailsmailGailsmail
    Participant

    Thanks! That’s interesting. If things get worse I’ll talk to my doc. I’ve noticed the difference since I stopped taking the meds but still don’t think it’s worth the side effects. I’m going to go stock up on Hotshots!

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