Finger Ulcers

[Margaret K]

I'm looking for help with ulcers I've developed on the middle finger joint of two of my  fingers and a venous ulcer on my right ankle. They are so deep (I've had them for 3 months), and not healing. My hands are both very stiffened and claw like from scleroderma, which I've had for 7 years. I've been on oral minocin and a monthly Z-pack for 1 1/2 years. I also take Traclear for pulmonary hypertension. I was just at the pulmonologist yesterday for PFT (lung function test), a 6 minute walk test and general check up. The doctor is very concerned bout the ulcers – but he is a pulmonary specialist. He has referred me to a vascular doctor to look at the ankle and ordered a scan of my hands to see if the ulcers are invading the bone. He also gave me a prescription for 10 days of amoxicillin – hoping that it will help the ulcers to close.

Any help appreciated.

Thanks,

Margaret K

[linda]

hi Margaret,

I don't know much about SD, but would a doctor who specializes in wound healing be able to help? Don't they sometimes use hyperbaric chambers to speed healing? It seems like I've heard that somewhere, but I could be thinking of something else. I hope you find a solution soon,

linda

[Cheryl F]

Margaret:

I, unfortunately have become quite well informe
about digital ulcers from SD. A couple suggestions.

1. Nitrobid Paste – I recommend diluting it with vaseline or neosporin, it can be too intense if used straight.

2. Viagra-I have read many, many posts from SD patients whose ulcers were so bad that they were facing amputation. The viagra worked like a charm. My daughter currently uses it as needed and she loves it. There was a recent post on the Scleroderma Foundation BBoard on this subject, they told about a drug in the same class as viagra that is given by infusion and can last 3 – 6 months.

3. Wound Care/Hyperbaric Oxygen Treatment — My daughter was evaluated for this for a digital ulcer that went so deep that it ate into tne bone at the tip of her finger. HBOT seems to be quite effective at getting these long standing ulcers healed. We never proceeded with the HBOT because her ulcer healed with the use of Nitrobid Cream.

Cheryl F.

[Margaret K]

Hi Cheryl – Thanks so much. Is the nitrobid cream only available by prescription?

Am holding on here, somethimes just barely and my hand challenges don't help at all.

I'm finding that commuting to NYC for a full time job is a bit much. But I need the salary and health insurance benefits. Somehow I get the inner resources going each morning and here I am. My fingers are worrying me though. Last year I had an ulcer on a finger tip and it took 3 months to heal with the help of a wound center. The tip is still sensitive – but it did heal.

I'm still hopefull that one day the minocin will really work and I'll be free. For some of us with SD who did not find out about minocin right away, it is a challenge.

[Cheryl F]

[user=321]Margaret K[/user] wrote:

 Is the nitrobid cream only available by prescription?

Yes, it is only available by RX.

Have you ever considered doing the Clindy IVs along with the oral combo that you are on, so many have had such great success with the Clindy IV, it seems like it can really jump start a slow moving AP recovery. 

Cheryl

[DianeWI]

Hi Margaret,

Have you ever gone through the Clindo I.V.'s?  I have a lot of SD symptoms and the I.V.'s help me the most.  IF you could get five days in a row and once a week after would possibly bring healing to those areas.   I did the best with all symptoms when doc aggreed to this protocol.  I went weely for 2 yrs.  And I had 2 1/2 hrs. to have someone drive me, then later I managed to drive myself.

What a nightmare these illnesses can be!  I'm so sorry!  My prayers are with you.

 

Hugs,

Diane

[Cheryl F]

Dr. F in Riverside thinks that the Clindy IVs are very important for SD.  So much so that, even though Jess is extremely allergic, he is recommending that we go through the effort to desensitize her by giving her very small doses weekly, until she no longer has the allergic reaction.  He is recommending that we start at 10mg and work up from there to the normal dose.  She might just die of old age at that rate.  She is really going to protest this time consuming protocol.  My point in sharing this is that Dr. F s a great deal of experience and he strongly supports the Clindy IVs.  Dr. S in Ida Grove said the same thing.

Good luck, I know how painful those ulcers were for Jess, even the slightest bump gave her extreme pain.

Cheryl

[Margaret K]

Hi Cheryl,

I e-mailed my rheumatologist and he is prescribing the NitroBid paste. I'm also taking Trentel which the pulmonologist prescribed late yesterday and it is supposed to increase blood flow to the arms and legs. I mentioned Viagra to him, which is prescribed as  revatio for pulmonary hypertension – however it is a controlled drug and only available through speciality pharmacy and I may not meet the criteria for it. His office is working with my insurance on it. :angry:

I'll have the Indium scan done of my fingers and ankle to rule out osteomyelitis.

I had ulcer challenges last year and should have learned –

If an ulcer is not getting better – it is getting worse! :headbang:

Best,

Margaret

[Goodwife]

Hi,

My hubby who has SD developed terribly painful, swollen hands and 2 ulcers (one was really bad) back in Nov 06 – prior to us discovering AP.  The rheumy was prescribing nitro patches along with the procardia for the raynauds, and was going to add yet another med (I think a blood pressure med) – we said no, because on top of the two he was already taking, not doing any good, a third was out of the question – he also talked of nerve block surgery that “might” work – very scary and drastic.  Later that week, we saw a naturopathic doc who after going over history, etc and seeing his hands and ulcers, put him on a very strict antiinflammatory diet, as well as a supplement regimen, and the combo of this and starting mino 2x/day, by about 5-6 weeks later, swelling practically GONE and ulcers healed!  It was truly like a miracle.  Even the naturopathic doc couldn't believe how his hands looked practically normal!  At this point he was 5 weeks into the diet and only 1 week into the mino.  It must have been the right combination and timing, etc. and a lot of help from above.  Don't give up – everyone is different, but if you can explore any dietary changes or supplements that may help, and maybe think about seeing a naturopathic doc for guidance.

[Goodwife]

Hi Cheryl,

My hubby's doc recommended taking benedryl prior to the first IV last year (the beginning of the 5 day series) to prevent an allergic reaction – all seemed fine and has been able to do all of the following IVs w/o anything.  Has Jess tried to take benedryl as a preventative measure?  Hope all is well with you – havent “talked” to you in a long time!

[Cheryl F]

[user=44]Goodwife[/user] wrote:

he also talked of nerve block surgery that “might” work

I hadn't mentioned it here as I had never heard of it as a treatment for Raynaud's, but, 2 1/2 weeks ago, Jess had surgery and they did a nerve block that stayed in for four days to ease the pain from the surgery.  What was really interesting was that the fingers on the hand that had the nerve block on that side were warm and she had absolutely no Raynaud's while the nerve block was in.  The nerve blosk was said to affect the sympathetic nervous system (I don't really understand the differnece between the Sympathetic Nervous system and the regular nervous system), but it sure turned off those Raynaud's spasms.  I know it is not a practical treatment, but for those in acute situations, and when a limb is at risk of amputation, I would think it would be a common procedure. Her hand was really warm, haven't felt that in awhile (if ever).

Re: IVs, Dr. F did say that he would use the Benadryl as he was building up her Clindy dose. 

It is so good to hear from you, I'll send you a PM soon, maybe we could chat by phone too!

Cheryl

[Goodwife]

Hi Cheryl,

For Raynauds and/or ulcers, I think the nerve block thing is used as you mentioned, risk of amputation, etc.  It just sounded so scary and drastic at the time, I couldn't wrap my brain around it – I remember feeling panic stricken that this “thing was only going to get worse”.  I'm not sure I completely understood your post – was Jess' surgery the nerve block, or was that separate from what her actually surgery was?  I hope she is doing well.  Raynauds is still an issue for my hubby too, I'm anxious for hot summer days to see how it goes this year – this Pittsburgh weather still stinks!  ps.  your daughters are beautiful.  

I haven't posted in awhile – I have to see how to send a PM again!  Also, still working on hubby's story to post – life is so busy right now (a good busy) but I REALLY want to get his story posted if it can be of help to others.  Take care,

 

[Cheryl F]

Lauren,

You may recall that as Jess was getting her life back from her quick turn around with AP, she got back into swim competion, flew off to a big meet in Seattle and one night after the competion, she slipped and fell and broje her arm, that was Dec 2006. In June 07, we learned that the bone didn't heal, the surgeon botched the job badly, so she needed to have the ortho surgery redone. While she “should have” had it redone immediately, we elected to take the risk and postpone the redo surgery until after the colllege swim season. So, her spring break party was having her elbow fixed. The nerve block was a standard part of the and post op pain control. She has recovered amazingly fast, went back to practice a week later. The nerve block was just really interesting.

Cheryl

[Cheryl F]

Lauren,

You may recall that as Jess was getting her life back from her quick turn around with AP, she got back into swim competion, flew off to a big meet in Seattle and one night after the competion, she slipped and fell and broje her arm, that was Dec 2006. In June 07, we learned that the bone didn't heal, the surgeon botched the job badly, so she needed to have the ortho surgery redone. While she “should have” had it redone immediately, we elected to take the risk and postpone the redo surgery until after the college swim season. So, her spring break party was having her elbow fixed. The nerve block was a standard part of the anesteasia and post op pain control. She has recovered amazingly fast, went back to practice a week later. The nerve block was just really interesting.

Cheryl

Code:

[Goodwife]

Cheryl,

Wow, that is a long time to get a problem fixed!  There are a few gymnasts on my daughter's team who have had broken ankle bones most of the season which still haven't healed properly – it is a long haul.  Glad her swimming 'career' is going so well.  Good luck to her and your family,  take care, talk soon,

Lauren

[Author]

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