scleroderma and curled fingers

[RevereRosie]

@Maz wrote:

@RevereRosie wrote:

I have nodules in the palm of my hands which I think were my first symptoms and the swollen fingers followed after that.
I believe they call it Dupuytren’s Contracture. I was using the small exercising hand balls sweezing them for 15 reps on each hand. I’m waiting for the swelling to go down as I have not been able to wear my rings for over a year.

Hi Rosie,

I have a Dupuytren’s nodule, too, on my left palm. Mine also appeared within a month of the RA being diagnosed, but both my Dad and Uncle have had them and they have not had a rheumatic disease. I have managed to control the size of mine with NAC and glutathione and it has never got any bigger than a very small pea directly under my ring finger and I still have full range of motion of that finger. My uncle’s got so bad that he had to have it surgically fixed (but he also didn’t give NAC a go).

http://www.ncbi.nlm.nih.gov/pubmed/16563228

One thing I will not consider is the collagenase shots they are using for Dupuytren’s these days. Collagenase is the enzyme that breaks down joints, too, in RA! It’s manufactured from a bug called, clotridium histolyticum and my guess is that for someone with RA, it could ramp up the damage in the hand joints quite severely. The reverse may be true for scleroderma, but I have not researched this and would not like to say. 😉

It’s called, “Viking’s Disease,” because it normally affects those of northern European extraction

Would recommend researching NAC and asking your doc about it, as it has amazing antioxidative properties for inflammation and general health of liver/lungs and whole body. They use it via IV in the ER for folks with aspirin overdose and also for kids with cystic fibrosis as a mycolytic agent, but it’s also an over-the-counter supplement and used by those with rheumatic disease for lung health and patients report that it’s been used with anecdotal success to help prevent/reverse the effects of lung fibrosis. 🙂

Thank you so much for all the information you have provided me. I’ve been a wreck lately and very depressed. I just wish the pain in my wrist would go away so I could cook, clean and drive without my body screaming inside with pain. You are very knowledgeable and sharing it is most appreciated.

Please help with one thing. When I want to reply back to you or others, do I just click on “Quote” or click on Reply. Reply sounds like the way to go. I just want to make sure that you got my message that I appreciate you and all the others that are providing me with sound advice. Hugs, Rosie

Bless You!

[Maz]

@RevereRosie wrote:

Please help with one thing. When I want to reply back to you or others, do I just click on “Quote” or click on Reply. Reply sounds like the way to go.

Hi Rosie,

You’re doing fine replying to everyone. If you hit the quote button, you can edit out the bits in someone’s post that don’t apply to your reply and just leave those that do. Then, you can just write under the quoted material from that person’s post, like I have done just above with yours. Or, you can just hit “post reply” and start a fresh post with no quotes from another person’s post. I actually prefer to use the quote button and then I can see what I’m replying to and, when it’s posted, it helps the other person on the thread to know it’s in response to theirs. It’s really up to you how you want to reply and there’s no right or wrong way.

Hang in there, Rosie…it can take time to see results with the therapy and the improvements will be slow, but sure. It’s been described as a two-step fwd and one-step back dance all the way to remission. So, some days will feel better than others and there may be runs of days where you don’t think anything is happening at all. It’s worth keeping a personal journal (you can use the Personal Progress Thread area of the forum for this), because over time you will be able to see how far you have come and it is very heartening. 🙂 The wonderful SD folks here will keep you going and we’ll all cheer you on.

Oh…btw, you might like to add your diagnosis and date of diagnosis to your signature line, because if you start a new discussion or reply to someone else’s, it might not be clear what you have under a new subject header. 😉

[enzed]

@richie wrote:

Hi –All this talk about paraffin etc brings back unpleasant memories –however I do remember one thing that really helped on a continuing basis –I found heat helped –I remember finding electric mittens that I was able to control the amount of heat –I remember taking a long extension cord and walking around with them on –helped a lot

---

do you have 220v or 120v –if you cant find them —let me know as they are somewheres around and I will dig for them –keep in touch !!!!!
richie

I have electric mitts too. I bought them from an Australian website selling equipment to beauty salons. Sorry, can’t remember the name if the site but it should be easy to track down beauty supply websites. The gloves – mine are mitts – are great for warming the hands and you can set the thermostat if you want the heat to stay steady or alter it as wish.

[RevereRosie]

@Maz wrote:

@RevereRosie wrote:

Please help with one thing. When I want to reply back to you or others, do I just click on “Quote” or click on Reply. Reply sounds like the way to go.

Hi Rosie,

You’re doing fine replying to everyone. If you hit the quote button, you can edit out the bits in someone’s post that don’t apply to your reply and just leave those that do. Then, you can just write under the quoted material from that person’s post, like I have done just above with yours. Or, you can just hit “post reply” and start a fresh post with no quotes from another person’s post. I actually prefer to use the quote button and then I can see what I’m replying to and, when it’s posted, it helps the other person on the thread to know it’s in response to theirs. It’s really up to you how you want to reply and there’s no right or wrong way.

Hang in there, Rosie…it can take time to see results with the therapy and the improvements will be slow, but sure. It’s been described as a two-step fwd and one-step back dance all the way to remission. So, some days will feel better than others and there may be runs of days where you don’t think anything is happening at all. It’s worth keeping a personal journal (you can use the Personal Progress Thread area of the forum for this), because over time you will be able to see how far you have come and it is very heartening. 🙂 The wonderful SD folks here will keep you going and we’ll all cheer you on.

Oh…btw, you might like to add your diagnosis and date of diagnosis to your signature line, because if you start a new discussion or reply to someone else’s, it might not be clear what you have under a new subject header. 😉

Thank You Maz, I feel so lost and confused and keep waiting for some sign that the pain is lessening but no sign of that yet.
Great suggestion to start a personal journal so I can see how I’m progressing along the way. I will research my paperwork to find the exact date I was diagnosed by the Rheumatologist and add it to my signature line.

[Debbie star]

Hi and thankyou everyone again.. If anyone knows where to get those electric mittens id appreciate the link..They sound great…

Hi and welcome to you too Rosie…

Has anyone had white lumps on the knee or elbows?? & wrists, (elbow ones can be painful and wrists)
I also noticed baby ones on my fingers under the skin where the knuckle bends (they are white)..I have a feeling they are called calcinosis??

Does anyone know what they are and how to get rid of them??
I asked the dr and they werent sure… but said as long as they are going out and not in they should be okay..Seemed a bit vague to me

thanks
Debbie

[Maz]

“Debbie star”I have a feeling they are called calcinosis??

Does anyone know what they are and how to get rid of them??
I asked the dr and they werent sure… but said as long as they are going out and not in they should be okay..Seemed a bit vague to me

Calcinosis usually arises with the CREST diagnosis of SD. Minocycline is chelative (binds to minerals) and the calcium deposits may resolve slowly over time in relation to responsiveness to AP, but might also be worth researching IV EDTA chelation. If IVs are too tough (finding a vein or thickened skin), then there are oral forms of chelation, too.

http://www.amjmed.com/article/S0002-9343(55)80025-3/abstract

http://archpedi.jamanetwork.com/article.aspx?articleid=500545

The above are fairly old studies demonstrating efficacy of chelating agents for calcinosis and calcifications, so it’s a bit bizarre they haven’t been more extensively studied since, especially as adminstered correctly by an experienced doctor it is a relatively safe procedure when compared with the risk/benefit of surgical removal. The trick may be in the mix – i.e. what the EDTA is mixed with. My doc is of the opinion that EDTA mixed with calcium disodium has a better safety profile than EDTA with magnesium disodium. The mix may need to be specific, though, for SD patients and finding a doc who is experienced in treating such patients in this way may take some hunting down. This is pure speculation on my part, but I’m guessing that not a lot of large scale trials can be undertaken for SD due to the fact that it’s a relatively uncommon disease and chelative agents are past patent – no money to be made. With no large-scale trials, it’s not considered to be “evidence-based medicine” that would be automatically covered by insurance companies. For about 30 chelation sessions, it can cost around $3-4000 dollars, which is not a heavy cost (as compared to surgery) in terms of a directed treatment that may be potentially corrective, rather than just being palliative. When a treatment isn’t a “standard of care,” then even the experts won’t know about it (not in treatment guidelines, so off the radar) or, if they do, liability issues may be a concern (when side-effects are experienced with approved “standard of care” drugs, then there is protection if the drug has been administered correctly and the patient has been properly monitored and made aware of these).

Silica is an environmental toxin that some researchers believe may be a contributing factor to SD. I came across some interesting articles about fulvic acid that is said to dissolve silica, but I haven’t done any in-depth research on this and it may be anecdotal.

Just some fellow patients suggestions to research further, Debbie, and discuss with your doctor. I’ve found the referenced research at this site to be quite interesting to sift through:

http://gordonresearch.com/inner.cfm?itemCategory=46975&priorId=46753

There are other chelative agents that many naturopathic and integrative docs will know about, too, if the subject is of interest to look into further. Hopefully those affected will chime in for you on what has helped them, Debbie, and you can type in calcinosis in the search box at the top of the forum and it should pull up past discussions for you, too.

[enzed]

@Debbie star wrote:

Hi and thankyou everyone again.. If anyone knows where to get those electric mittens id appreciate the link..They sound great…

Hi and welcome to you too Rosie…

Has anyone had white lumps on the knee or elbows?? & wrists, (elbow ones can be painful and wrists)
I also noticed baby ones on my fingers under the skin where the knuckle bends (they are white)..I have a feeling they are called calcinosis??

Does anyone know what they are and how to get rid of them??
I asked the dr and they werent sure… but said as long as they are going out and not in they should be okay..Seemed a bit vague to me

thanks
Debbie

I did a google search and found several sites selling heated gloves or mitts like mine.
One that looked reasonably priced at $32.99 is called “Jilbere Professional Heated Spa Mitts” – I found it on a website called http://www.sally.com
I also saw ‘heated mitts’ on Amazon. Google around for the best price is my suggestion. Choose 110 or 240 volts depending on where you live.

If you use heated wax with them you’d need to be careful not to let the mitts get too hot or you could burn your fingers. It’s not good for Raynauds fingers to get too hot or too cold – just slowly warmed up and the comfortable heat maintained is best. I used to use the mitts every night while watching TV but rarely need them now – just when my fingers get cold and I need to warm them in a hurry to restore circulation. I don’t think the wax is needed if you use electric mitts and control the heat by thermostat.

I had calcinosis too – those nasty little white hard calcium lumps at the top pads of the fingers. At the time they appeared – back in the 1980’s – no-one knew what they were but I decided to break them up and would sit in the evenings and methodically smash them with my finger nails. Not sure I would recommend that method to anyone else but it worked for me. It was slow and painful but over a period of months of being ‘smashed’ by finger nails they did break up and disappear and never returned. I have read that these days doctors remove them by surgery. It would be quicker and less painful to have them cut out than to use my method!

[richie]

Hi It is calcinosis –over time most of the ones I had cleared up although I was left with some white spots –mainly on arms –no big thing though —
Best
Richie

[enzed]

@richie wrote:

Hi It is calcinosis –over time most of the ones I had cleared up although I was left with some white spots –mainly on arms –no big thing though —
Best
Richie

Ritchie, were they like hard and painful marbles under the skin? When you say ‘spots’ do you mean lumps on the skin or under it, or were the white spots marks on the skin? Can you describe the calcinosis before it ‘cleared up’ as you say. What made it clear up, and how long did it take? If you don’t mind sharing it, I’d really like to know what you experienced and how you dealt with it. Many thanks.

[RevereRosie]

@Debbie star wrote:

Hi and thankyou everyone again.. If anyone knows where to get those electric mittens id appreciate the link..They sound great…

Hi and welcome to you too Rosie…

Has anyone had white lumps on the knee or elbows?? & wrists, (elbow ones can be painful and wrists)
I also noticed baby ones on my fingers under the skin where the knuckle bends (they are white)..I have a feeling they are called calcinosis??

Does anyone know what they are and how to get rid of them??
I asked the dr and they werent sure… but said as long as they are going out and not in they should be okay..Seemed a bit vague to me

thanks
Debbie

I have nodules in the palm of my hands which I think were my first symptoms and the swollen fingers followed after that.
I believe they call it Dupuytren’s Contracture. I was using the small exercising hand balls sweezing them for 15 reps on each hand. I’m waiting for the swelling to go down as I have not been able to wear my rings for over a year. I don’t have any lumps anywhere else.

[Jillian]

I live in MIddle Tennessee USA. Where do you find Doctors? I have tried so many to get an appointment. Major leading Scleroderma Clinic have long waiting listz. Booked till Oct and some till Jan.
Any suggestions on what I am doing wrong.
Jillian

[Maz]

@Jillian wrote:

I live in MIddle Tennessee USA. Where do you find Doctors? I have tried so many to get an appointment. Major leading Scleroderma Clinic have long waiting listz. Booked till Oct and some till Jan.
Any suggestions on what I am doing wrong.
Jillian

Hi Jillian,

Are you looking for an AP (antibiotic protocols) doctor so you can start AP treatment? If so, have you seen the topic at the top of the forum with instructions on how to request an AP Physician list? Will paste it here for you.

viewtopic.php?f=1&t=54

Most rheumatologists and leading clinics that diagnose/treat scleroderma do not adhere to infectious theory for the disease and also do not usually recommend minocycline as a treatment. The types of doctors who generally do prescribe AP are GPs, PCPs, integrative or holistic doctors. If you have an open GP willing to prescribe you minocycline, a simple antibiotic, we can provide you with Dr. S’s (Doctor of Osteopathy in Iowa – chapter in Scammell book) contact info and he is very kind to freely consult with prescribing physicians and patients on how to administer the therapy.

We are looking to grow our AP doctor lists, so if any one has an open doctor who is willing to prescribe their AP and would also be open to being added to RBF’s provider list, then please let us know! Thanks!

[Author]

Posts