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chilblain lupus/perniosis

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Unread 12-05-2011, 07:09 PM   #1
Geraldine
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Default chilblain lupus/perniosis

Hi all, I'm hoping someone can help me. I was diagnosed with chilblains, although I don't have any sores. Just red, painful toe tips. The norvasc did not help. Then I got diagnosed with neuropathy and the chilblain diagnosis was null and void. But my toes are still like this. After I get cold, my toes/nails start to hurt more.

Does anyone know what I should do to treat my toes?

Thanks!
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Unread 12-05-2011, 09:08 PM   #2
bobthebuilder54
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Gerladine,
Did they check you for Raynauds disease/ Do the toes or fingers turn white, red, blue? Take pictures of them if they do and bring them with to a doctor. I have Raynauds and perhieral neuropathy along with a long list of autioammune stuff going on. With Raynauds your toes and fingers will hurt really bad also when they warm up. Do you or have you had an ANA test done?
BoY I am full of questions, lol.
susie
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Unread 12-06-2011, 12:43 AM   #3
Geraldine
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Quote:
Originally Posted by bobthebuilder54 View Post
Gerladine,
Did they check you for Raynauds disease/ Do the toes or fingers turn white, red, blue? Take pictures of them if they do and bring them with to a doctor. I have Raynauds and perhieral neuropathy along with a long list of autioammune stuff going on. With Raynauds your toes and fingers will hurt really bad also when they warm up. Do you or have you had an ANA test done?
BoY I am full of questions, lol.
susie
Yes, I do have Raynaud's - and MCTD. My fingers and toes used to turn white. Now my fingers still turn white, but my toes have not been doing that lately. I do see the bottoms of my feet get a little blue at times. This is why I thought it was chilblains. My rheum agreed after I persuaded her, then when I went back after using norvasc and it hadn't helped, plus I had more neuropathy symptoms, she changed her mind. Took me off norvasc and put me on elavil. The neuropathy is better but the toes are still doing this. I haven't had any sores, but last night my feet got cold, then today they are hurting worse and redder. My finger tips started to feel weird again tonight. I've noticed when I wash my hands my pinky may turn blue -without me feeling anything weird. So what should I do to get a doctor to believe it is the raynaud's and actually treat it? My rheum has only given me elavil (and already on plaquenil). The only other thing that sometimes put doubt in my mind is that sandals with thongs especially cause my second toes to hurt more and get redder. I don't see how raynaud's would be doing this, unless there is some pressure somewhere that needs to be addressed. ?? My Raynaud's has never bothered me this severely. I'm in Florida so really worried about Jan or Feb.

Have you been treated for neuropathy and Raynaud's separately? Can a vascular specialist help if this is Raynaud's?
Can Raynaud's cause your ankles and calves to get cold too? Sorry - I am asking more questions back at ya!
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Unread 12-06-2011, 12:49 AM   #4
Geraldine
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P.S. I found these two pictures. One is of fingernails but this is what my toes look like.

Second one looks just like my toes, although mine do get redder than this.

http://www.dermis.net:80/dermisroot/en/30838/image.htm

http://www.dermis.net:80/dermisroot/en/30855/image.htm

I think norvasc must have not been the right med. I don't know why but my rheum has not suggested a prednisone or something to get my autoimmune in check, and my recent tests did not seem to show that it was active. I had been off plaquenil AND on an antibiotic and diflucan right before this started, after my wisdom teeth surgery.
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Unread 12-06-2011, 01:07 PM   #5
bobthebuilder54
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Quote:
Originally Posted by Geraldine View Post
Yes, I do have Raynaud's - and MCTD. My fingers and toes used to turn white. Now my fingers still turn white, but my toes have not been doing that lately. I do see the bottoms of my feet get a little blue at times. This is why I thought it was chilblains. My rheum agreed after I persuaded her, then when I went back after using norvasc and it hadn't helped, plus I had more neuropathy symptoms, she changed her mind. Took me off norvasc and put me on elavil. The neuropathy is better but the toes are still doing this. I haven't had any sores, but last night my feet got cold, then today they are hurting worse and redder. My finger tips started to feel weird again tonight. I've noticed when I wash my hands my pinky may turn blue -without me feeling anything weird. So what should I do to get a doctor to believe it is the raynaud's and actually treat it? My rheum has only given me elavil (and already on plaquenil). The only other thing that sometimes put doubt in my mind is that sandals with thongs especially cause my second toes to hurt more and get redder. I don't see how raynaud's would be doing this, unless there is some pressure somewhere that needs to be addressed. ?? My Raynaud's has never bothered me this severely. I'm in Florida so really worried about Jan or Feb.

Have you been treated for neuropathy and Raynaud's separately? Can a vascular specialist help if this is Raynaud's?
Can Raynaud's cause your ankles and calves to get cold too? Sorry - I am asking more questions back at ya!
Hi, I have been treated for the RAynauds, mine was quite bad for a while. My fingers, hands,even my nose was turning blue, could hardly bend fingers, well anyway first they tried a nitro cream, then off of that then gave me a calcium channel blocker which did help but still it was not bad, then they gave me trental been on that off and on for about two years, that really does it for me. I live in Michigan and it gets cold here, but I find stress is a bad, bad trigger for me. Sometimes worst than the cold.
I am not a doctor, or anything remotely close,lol, but the calves, and ankles could that be circulation, or the neuropathy? I am on a med for the perhieral neuropathy I am on too. It is an anti siezure med, which is called carbamazepin. I beleive there is better treatments but they can cause a weight gain, and I am trying to lose weight so chose the later with the neruo blessings. It does help. I will say I get numb fingertips also, now whether it is the raynauds, or neuropathy, not sure what is what, because I have such a overlap of autioammune stuff going on. I have never been to a vascular specialist that is one I have missed so far lol. But the rhuemy takes care of my raynauds for me and is the one that has given me the meds. I hope this helps. and I really dont mind any questions ever, because I am full of them myself, lol.
susie
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Unread 12-15-2011, 03:48 AM   #6
Geraldine
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Thank you for the info! I am very interested in seeing a vascular specialist but am terrified about the costs of the neuro... so not sure I can go. My rheum has been good but did not catch this neuropathy soon enough I don't think, and didn't try anything when the norvasc (calcium channel blocker) did not help. I'm not even sure I was on it long enough. Just 2 weeks.

Thanks Susie, I may see if I can try something else after the holidays.
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Unread 12-07-2012, 12:07 PM   #7
JeffBH
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Default Chilblains / perneosis treatment

I have had great success using medical marijuana. It stops chilblains in its tracks and greatly speads up the healing. It has two years now that I have used medical marijuana for treating this. The next flair up I am going to try a hemp extract of CBD which has no THC so there is no high from using it. This will tell me if it is the CBD or the THC that is so very effective. Also it stops the pain. No need for painkiller with this.
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