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Toe Ulcers in addition to everything else

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#1 red


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Posted 24 February 2011 - 07:48 AM

Had 3 month check up with rheumatologist yesterday, very discouraging. Showed him the nodules on my arms and fingers which are now too numerous to count, must be over 25 now, with a couple new ones on my knees. My primary diagnosed rheumatoid nodules, the PA at the rheumatologist's office last month said calcinosis, but xrays have ruled out calcinosis, and my blood work, including sed rate and rheumatoid factor were normal. Rheumatologist said he frankly doesn't know what they are, wouldn't take a guess and is scheduling me for biopsy surgery.

While I was there, I showed him my feet, which over the past week have developed small, painful, red spots over most of my toe pads. We talked about the Raynaud's, which I had thought was relatively mild, only rarely do my toes or fingers turn blue, but probably at least a few times a week the toes get white. My entire feet are mostly always cold, as is my nose, and I have one fingertip that is either cold and white or red hot, never in between, with the fingernail separated and broken off halfway down which refuses to grow back in. He said I'm definitely having reduced circulation to the extremities and switched by high blood pressure medicine from losartan to amlodipine. Any one else on this med?

When I woke this morning, the tips of my toes are beet red, and 2 of the spots have opened. I can't believe the pain, I feel so bad for all of you who've suffered with digital ulcers, it has to be even more painful on fingers. :(

It's only 6 degrees outside this morning so will spend another day inside and keeping warm, I am turning into a hermit this winter! I thought the Groundhog said an early Spring!!

Thanks for letting me vent!


#2 Joelf


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Posted 24 February 2011 - 08:21 AM

Hi Red,

Poor you, how disappointing that your rheumatologist's appointment was so discouraging and that you're suffering so much pain and discomfort with your toes; it must be excruciating and I'm so sorry.

I do get Raynaud's but thankfully haven't had ulcers or nodules on my fingers and toes so can't advise you from my own experience. Perhaps when you get the results of the biopsy your rheumatologist has suggested, you may be in a better position to get some more specific help from him.

We have a link here to Amlodipine which I hope you'll find helpful and I'm sure some of our other members who've used this drug will be able to advise you about it.

Do keep us posted with the results of your biopsy, won't you?
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#3 Jeannie McClelland

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Posted 24 February 2011 - 09:28 AM

Oh Red, what a shame - it sounds like you are having a really miserable time.

I know the weather has to be getting you down too. Let's see, six weeks from February 2nd is, um, counting here, hang on.... March 16th? Yeah, that's about right. So right about the time the leprechauns are digging up your back yard looking for pots of gold and the pubs are selling green beer, Spring will come roaring in, apologizing for keeping you waiting.

Till then, here are a few posies for you. Hang in there,:flowers:
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#4 Amanda Thorpe

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Posted 24 February 2011 - 03:38 PM

Hello Red

I have scleroderma and Raynaud's which I have always considered mild as I don't have the dramatic colour changes and never had digital ulcers. However 4 years on I now have a large ulcer on my right foot that's slightly infected and a medium sized one on the left foot that's very infected. Oh yeah they really, really hurt...a lot.

It's starting to warm up here and hopefully it will continue to do so...not to warm though!

Take care.
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#5 Lynnie


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Posted 24 February 2011 - 07:29 PM

Hi Red

I'm so sorry you are suffering so badly at the moment,I haven't had ulceration anywhere ever thank goodness, at least not this year as we've had our coldest winter on record in the uk, but,thankfully I have escaped to many "white-outs" (my pet name for raynauds).

My rheumotolgist is a lovely,clued up lady,she has put me on Nicardipine hydrochloride SR 30mg twice a day for my raynauds last summer. It's working very well indeed. I was prescribed Amolodopine like you but I couldn't tolerate it at all,made my heart race and gave me angina type pain even on the lowest dose,so, I was taken off it,as it made the raynauds actually worse as well.

Please don't be disconcerted if you can't tolerate it either, however, there are many different types in this family of drugs that you can try till you find one that suits you.

I hope the biopsies show up what is troubling you,and you get some help and comfort.
Take care

#6 judyt


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Posted 25 February 2011 - 04:40 AM

Hi Red,
It seems to depend very much on the person, which meds work for what. I have been on Enalapril for many years for high blood pressure, it helped settle my migraines but did nothing for Raynauds, then we tried Nifedipine - same thing, then Norvasc - much the same, and all of a sudden Amlodipine!! Hey presto - no more migraines and much reduced Raynauds. Then we added Diltiazem 240mg to settle my uneven heart beat.

Now I am taking 5mg Enalapril twice daily, 10mg Amlodipine once a day and 240mg. Diltiazem SR once a day. I have BP 130/65 which is very satisfactory, no migraines, no uneven heart beats and no Raynauds. Some people might think that is a lot of meds, but I have a much happier time without all those problems. It took quite a few years of experimenting to get where I am now but it sure is worth it.

Keep on trying and maybe you will find the right mix too.

Judy T