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Skin Tightening


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#1 lizzie

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Posted 01 December 2007 - 08:56 AM

Hi everyone, am feeling pretty fed up today- My husband has gone to Paris for a few days (I haven't gone because have work deadlines to meet here), the weather is nasty (cold, wet and windy), I had to go and get a passport photo taken and hardly recognise it as me!, and to cap it all my skin seems to be going through a new phase of tightening. My face and hands feel really tight today, feels like an effort to smile (and not just because I'm feeling sorry for myself) and the skin on the back of my hands is pulling more when I make a fist and is looking increasingly shiny (I know I should be grateful that I can still make a fist). It was like this a few weeks ago and then started to feel less tight - but is back with a vengeance now. I'm just wondering if the tightening really does happen in stop/start phases and if so is there a trigger for it or is it is a continuous process and its just that I'm sometimes more aware of it?
Lizzie

#2 Michelle2

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Posted 01 December 2007 - 11:00 AM

Hi Lizzie~

I am with you. :angry: I am getting so tired my my hands becoming increasingly tighter and swollen as every day passes. It started back in February 2007 and I can now barely make a fist. Every month it gets worse and worse. My knuckles are thick and get really scaly. I have even resorted to using a nail file on them to ward off the potential cracks that it might lead too. I use lotion and creams everyday all day long. I do finger exercises (thanks to Janey) a few times a day. This seems to help my flexabilty. I feel bad complaining because at this time, this seems to be my only system besides Raynauld, acid reflux and a digital ulcer. There are so many out there far worse off than I am. Please forgive me for complaining. :huh:

I've been going to a rheumatologist since 2004 because of Raynaud's, which as progressed over the years. I am still waiting for my test results that my "NEW" rheumatologist has ordered. From what he see's so far by a visually looking at me, he has diagnosis me with either Localized or limited. I can't remember because I am still so confused with how many different forms there are. :blink:

My doctor has put me on a new medicine to help with the tightness its COLCHICINE TAB 0.6MG. I haven't seen a huge difference, but I can tell you that when I skip a dose I notice that. I go back to the dr's on December 14. I'll be asking him about the PUVA treatment that I've heard many of you talk about as well as Methotrexate to help with swelling and flexibility.

So Lizzie, I would like to know if anyone knows what we can expect in the future with our hands. I know everyone is different, but some insight would be very helpful.

Thanks again everyone for your continued support!

(BTW sorry you weren't able to go to Paris with your hubby, try to enjoy some quite time, perhaps warm next to the fire with a yummy beverage :P )

I forgot to mention that my hands are really red too. When I straighten them out they turn WHITE with red knuckles....almost looks like finger do when I'm having a Raynaud's attack.
Take care and stay warm,

Michelle

#3 truman

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Posted 01 December 2007 - 11:18 AM

Lizzie:

Have you tried methotrexate? My rheumatologist has me on this for the past two months. It's supposed to reverse the sclero tightening. He also told me that the tightening will reverse itself in time without medication.
Tru

It is what it is...........

#4 truman

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Posted 01 December 2007 - 11:25 AM

kuntrybumzz:

I am also on Colchicine. It's generally prescribed for Gout. I am on it due to the calcium deposits that form on my arm. I thought it was doing no good, but when I went off the drug, the deposits took over. I'm now back on and see no new deposits forming.

I don't believe this medication is prescribed for Raynauds alone. My doctor is considering Viagera and/or equivalents to control that symptom and presently has me on Plavix which seems to be working nicely.
Tru

It is what it is...........

#5 lizzie

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Posted 01 December 2007 - 11:30 AM

Hi Michelle, your hands sound in a worse state than mine - in the general scheme of things mine aren't that bad, I don't have any problems with function. I also only have skin, vascular and GI involvement, nothing more debilitating or life threatening so really shouldn't complain. When I was in hospital a few weeks ago I also saw a dermatologist because of psoraisis, she suggested the possibility of PUVA if the psoraisis worsened and said it may also help with the scleroderma related skin issues. Re your suggestion -I am now going to watch a chic flic on TV- with a cup of coffee and some chocolate ( I know its bad for the reflux), my son has gone out with friends, so I actually get full control of the remote - a rare ocurrence.
Lizzie

#6 aniwallar

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Posted 01 December 2007 - 03:41 PM

What is a PUVA treatment? My hands are getting so bad now and people are noticing specially because they get red and very puffy.

Ani

#7 Piper

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Posted 03 December 2007 - 05:57 AM

Hi Lizzie,

My tightening seems to almost come and go. Some days I think it's all in my head. I wondered if anyone else started with tight palms on their hands. The very first tightening I noticed was just up to the first joint in my fingers, then the crease in my elbows has gotten hard and tight and now the palms are very hard. My hands are curling in but not from the whole finger being tight but from the tight skin on my palms pulling on it and swelling.

The last couple of times my ana has been really low so my Dr. doesn't know what's going on but he has mentioned the tightening as well and told me to work on stretching them.

Sorry about your miserable weather. We've had it too. Ice storms mostly but very grey outside and depressing.

Hugs, Piper

#8 lizzie

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Posted 03 December 2007 - 01:10 PM

Hi Everyone , thanks of your replies

Truman: I haven't tried Methotrexate, but don't think my skin involvement is bad enough to merit its use.
Aniwallar: PUVA stands for Psoralen and UVA treatment. Psoralens are found in plants and can be sensitized when taken orally or applied to the skin ( apparently they used to be used in ancient Eygypt!). When used with UVA (long wave radiation) they allow for a lower dose of UVA. Its not really known how it works but there is a theory that it might have an efect on the skins immune system. It can sometimes have some not very nice side effects though so not in a hurry to give it a try!
Piper:Like you , I sometimes think its all in my head! My ANA was negative the last time I had it done (although has been positive in the past) but am not sure to what extent, if any, ANA relates to disease activity in SSc, although my rheumatologist appeared to think that the negative ANA was a good thing.

Lizzie

#9 CraigR

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Posted 05 December 2007 - 09:28 AM

Wow. Two drugs mentioned that I hadn't associated with scleroderma. The old gout drug colchicine used for calcium deposits, and Plavix.
Plavix is advertised to help prevent blockages/blood clots in the heart. Since I have a history of blood clots in my legs, I inquired of my internist (who is also a cardiologist) of its use for prevention of leg (DVT) blood clots. He said that it is only helpful for clots of he heart, not elsewhere. This explained why a search of the web could turn up no information on Plavix for DVT (obviously not approved - and you know that if it were they would let it be known! [increased sales opportunity]). But Plavix for Raynaud's - that's interesting.

If you need help with Raynauds, don't forget Prazosin (minipress). It came up a while back on this forum with mixed reviews - two of us found it very helpful.

Craig