Raynauds/sclero

Right, don't really know where to start or quite what I'm writing to ask but stumbled across this site about 2 weeks ago and thought I need to get involved and have a chat with people who obviously know the score.
I suffer with lupus and amongst this I have severe raynauds...to which I'm thinking is now more sclero like. Also have other illnesses which form from this, psoriasis, lung issues and joint issues, etc.
I'm actually in hospital right now and suppose I'm looking for any help with what is going on with me right now, or if anyone is or has been in the same position as I'm going a little bit crazy waiting!!
Basically about 10 days ago I noticed one of my fingers had turned purply/black just from the tip down to about the first knuckle. I just assumed it was my raynauds so went about trying to warm them up like I usually do to get the bloody circulating again. After this didn't work and the following day It was still the same, I took myself to the docs which has resulted in me being in hospital on a drip of iloprost to try and get the blood flowing again. I was only due to be in for 3 days, but 8 days later I'm still here and my finger has not changed all that much. It has subsided a slight bit and I though I was on the mend, but it now seems to have remained the same for the last few days and I'm just a bit scared. I'm wondering if anyone else has had this and it's just taken time for it to return to normal or if theirs has got worse or what?
I'm just a bit confused as to what is going to happen and extremely worried. The specialists did talk at one point of amputating the finger if it got any worse, which has absolutely filled me with dread.
At first my fingers were getting worse and I was in excruciating pain with it at night, until it started getting better slowly and I don't really get much pain with it now, although the tip of the finger and slight bit underneath are still numb and pins and needles-y.
The doctors said that after nearly 10 days I should be seeing some progress by nowand they should be pink with the amount of iloprost iv have had pumped in me..which again worries me that even they don't know what to do with me.
Anyway, so sorry for the massive essay, don't really know what else to turn to as waiting is worrying the hell out of me.
So just wanna know really if anyone has been through this and it's just taken a while for fingers to return to normal, or if I'm now stuck with this black finger and if so, is it likely to get worse? I'm just hoping that due to my autoimmune disease, that it's just taking me longer to heal.
Any info appreciated. I'm only 28, and so very scared about losing digits:-(
Thanks so much for listening.
Tamzen

Report post

13 replies. Join the discussion

Tamzen,

I sympathize with you on your situation. Know, though, that only your physician who has examined you and is actively monitoring your progress can answer your questions. Even a qualified medical practitioner cannot give you an answer by only reading what you wrote above.

Just wanted to mention that emotion does trigger and worsen the Raynaud's "fits". So, even if it is difficult to do so under the circumstances; do try and relax (meditation, praying, music, etc.) so that your body does not spend energy on serving your emotions and can fully focus on fighting it.

My opinion (note it's an "opinion") is that your outlook can go either way. Please work with your physicians and give your body a chance to do the fighting.

Best of luck to you!

Report post

I know of a nutritional product that might help...Serrapeptase.... It reduces inflammation, clears up dead tissue (scar tissue) and increases healthy blood flow. go to www.goodhealthusa.com and type in Serrapeptase. Do your own research...I am taking the product and so is my daughter.

Report post

Perhaps hirudotherapy -- that means using leeches, on purpose.
This idea is odd, but there is some good science lining up behind it. Insurance companies even cover it for some conditions (yours? don't know). You can read a bit here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1964669/

and here:

http://www.leeches.biz/hirudotherapy.htm

Watch out -- creepy pictures of leeches at that second site. And, it's a site that sells medicinal leeches (who knew?), so the info may be a little over-enthusiastic. This part, as far as I know, is true:

". . . a medicinal leech is a small “factory” manufacturing biologically active substances. The result of action of biologically active substances on an alive organism are:

-normalization and improvement of capillary circulation;
-expressed antiinflammation effect;
-antistressful and adaptogene effects;
-immunostimulating and immunomodulating effects;
-anesthesia;
-anticoagulation;
-antibacterial effect;
. . . "

Sounds like what you need, huh? On the list of things to try, I'd certainly put it above amputation. It'll be a fun chat with your doctor. I hope you can let us know how it goes. Good luck.

Report post

Thanks for words of encouragement guys :) I have been trying as hard as I can to be positive. I will definitely look into your ideas, never heard about either of them. At the minute I'm just kind of hanging around..waiting for something to happen as nothing seems to be healing very quickly. Some days I think it is improving and then some days I just thi k it's maintained the same. It's just the waiting for something to happen that is really killing me. I'd like to know that I'm on the path to recovery rather than just waiting for something to happen and it get worse. Even the doctors are at a loss with me as they say that after 10 days on medication my finger should be pink by now. But I've been taken off the drip now as I've been on for 10 days and they are going to keep me in over the weekend on tablets to see how they work and just monitor me really. With the hope of sending me home next week. Although I'm a bit sceptical about leaving with still a purplish coloured finger :-/
Like I say, I'm just hoping that my body's immune system is so rubbish that it just takes longer for me to heal and that's why it's taking so long for it to return to normal colour...but in the hope that it doesn't go back to square 1 again whilst waiting. I will keep you updated on how I get on and if I can get to try those treatments. And in the mean time ifanyone else has any info or life experiences of this please do pass it on.
Thanks once again xx

Report post

Foxy, I am not sure that what I am about to tell you will make you worry less, but I am going to try. I suffered from Raynaud's for years. I would develop finger ulcers that were so painful, I would pace the floors at night, sometimes crying. I saw a wound care specialist to try and heal the ulcers that stayed for months. Finally, both index fingers had lost so much tissue that I risked bone infections if we didn't close up the wounds. My finger was sewn into my chest wall for a month. Didn't work but was a great conversation starter. Finally the surgeon said the finger would need to be shortened. That is a soft way of saying the dreaded word....amputated. I got upset, reminding her I was an artist, and right handed.........

She nodded with complete sympathy. Unfortunately, both index fingers had such deep wounds that I ended up with staph in the bones of both. Amputation was inevitable. That was nine years ago.

Then a wound in my middle finger, right hand, suddenly turned purple black, just as you describe. I saw a different hand surgeon. He explained to me that the tip of my finger was auto amputating, meaning dying and would rid itself of the damaged tissue. This takes a while and he offered me the choice of a quick surgery. He pushed me to let it do it's own thing, so that I would lose a lot less of the finger. So, every week I saw a hand therapist who did some hydrotherapy, some deriding, and keeping an eye on the whole thing. Months later, the tip became a large scab, and one day (gulp but yay!) the damaged tip just came off in the bandage. Underneath was pink skin and a few open places. I continued to keep it clean and bandaged but truthfully, some of the nail bed remained and caused full healing to take years.

So....that "might" be what is happening to you, or it might not be that serious. (I hope)

Okay, nine years later, 3 finger tips gone, I draw and paint the same as I ever did. You really do learn to compensate. I also used to hide my hands whenever I was in public. One day, while at an amusement park, I saw a 12 year old girl, her face so scarred and burned, skipping along with her friends laughing like all the other kids..... and I stopped hiding.

Reading along in here, I realize how very lucky I am that my scleroderma is mostly limited to my hands.

I hope this did not make you worry more, and of course this is what happened to ME, but please get a good doctor, stop stressing if at all possible, best of luck to you.

Report post

Hi foxy, I've just turned thirty and have spent the last year trying to find someone to amputate my fingers because my raynards is so bad I'd rather not have them. I went to turkey in June and whilst I was there my finger became ulcerated. I saw a doctor there who to my horror treated me with anti biotics that are used to treat anthrax poisoning and the plaque! Anyway after 24 hours my finger had healed and touch wood has been better since. My doctor in the uk has spent nearly 3 years trying to fix something they fixed in one day.

Report post

Did the purple spot come on suddenly with intense pain and spread daily?

Report post

Browner did they give you Cipro? That was used to treat anthrax. I have been on that many times. It helped with infection but never healed me in 24 hours! Has it completely gone away? What about new ulcers? How is the Raynaud's?

Report post

No it wasn't cipro, cod. I've forgotten the name but I will try to find out and post it on here. The side effects were quite strong but it really was worth it. I haven't had any more ulcers since and my raynards seems a little better at the min but the winter is just around the corner so I suppose that will be the real test.

Report post

It was levofloxin.

Report post

foxie lady, I am really sorry to hear about your figure not turning back pink. I pray it will change back soon. I am also having Raynaud issues. The bottom of my legs are getting very cold and it takes awhile for them to warm up. Also, other parts of my body tingles when my legs are cold? any thoughts anyone. I am sure the raynaud is becoming much worse since I got about 12 years ago. The onset is mostly cool blowing air. Although it's high 80 degree temps, if I am in airconditioning, I need two layers of clothing. It stinks

Report post

Thanks browner, I will check that out.

Report post

Foxie Laydie,

A year ago, I awoke one morning with a very sore right middle finger and a white spot which turned red then purple and spread. The intense pain seemed to originate from inside my finger; not on the surface. Urgent care gave me an antibiotic; my doctor's PA took a picture; a dermatologist at Mayo Clinic Jacksonville FL ordered an MRI (on day 11); a hand surgeon looked at the images and said the inflammation had reached the bone and the tip of my finger needed to be amputated (not a nice word ). So in 12 days from start to finish, I lost the tip of my finger.

Two months later the same thing happened to my left index finger. This time I didn't wait. I went to the emergency room at Mayo Clinic Jacksonville FL (on day 5) and the same hand surgeon took a look and said, "I'm so sorry." He admitted me to the hospital, tried to debride it overnight, but operated the next day (day 6) and SAVED MY FINGER. He was the very best.

I'm convinced that time is crucial.

I still wondered what was going on and didn't want to lose any more fingers.

A month later I saw Dr. Richard Silver at the scleroderma clinic at MUSC (Medical University of South Carolina) in Charleston, SC. He said, "Was it like a gout attack?" I said, "Yes!" He said, "Was it like cellulitis?" I said, "Yes!" He said that probably the calcium inside my finger had crystallized and set off an imflammation which spread. There had not been any infection. He put me on Colcrys (colchicine) a gout medicine to reduce inflammation. I haven't had a similar problem since.

What is puzzling is that back in 1999 Dr. Maureen Mays wrote in her book, The Scleroderm Book, that "Colchicine (a medicine usually used to treat gout) is sometimes helpful to treat the inflammation associated with these deposits" (page 60) and yet it doesn't seem to be widely used for calcinosis. Her book is the best I've read about scleroderma.

I am facing surgery in two weeks by the same hand surgeon to clean out calcium in my right index finger. It has been sore for four months and a large calcium deposit is trying to make its way out of my finger, but isn't moving and my finger isn't healing. I'm tolerating this my using Duo Derm to cover and seal the entire end of my finger. I can leave the Duo Derm on for a week before it breaks down and needs changing. It has been a life saver for me.

This is my story, and I've told it here a couple of times. It's not necessarily what's happening to you, but, hopefully, it will help someone.

I wish you the best in your recovery. I can't believe you've been in the hospital so long. There will be better days ahead.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders