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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 gigi08

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Posted 03 November 2008 - 05:22 PM

I am new to the forum and just wanted to share a little of what is happening with me. I was diagnosed with sclero and inflammatory arthritis in May. Since then I have been researching to see what is going to happen with me and find out that it could be a number of things. I do not know which I have but I also have Raynaud's and fatigue, swelling and pain of the hands, wrist, left knee and feet. I have been on several different medications, but so far nothing seems to be helping. My biggest struggle is getting my body to move. I was an active walker and now I have to really push myself to walk and the days that I do it are very few. I am here because I needed support and wanted to hear from others that are going through the same thing.
Gigi08

#2 janey

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Posted 03 November 2008 - 06:16 PM

Gigi,
Welcome to the ISN forums! I'm sorry to read that you are suffering from so many symptoms. That fatigue is the worst! Congratulations on continuing to push yourself. So many of us give up. That's why it's important to continue to work with your doctors until you get results.

Are you seeing a rheumatologist or scleroderma specialist? If not, please make sure that see do. You need to be seeing a doctor that is very familiar with scleroderma and its various possible symptoms. This disease is different for each of other, so in many cases, so is the treatment.

I'm very glad that you have found us. Our members are great with lots of experience and unending support. If you've read some of the postings, I'm sure you've seen it.

Again, welcome

Big Hugs,
Janey Willis
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#3 gigi08

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Posted 03 November 2008 - 06:44 PM

I have been going to an Arthritis Clinic since may. I am taking plaquenil right now. Have been on it for about 3 months and still not noticing much difference. The only thing that really gives me good days is if the put me on the 6 day dose of prednisone - where you take 6 the first day, 5 the next and so on. The first 2 days of that I feel great and the swelling in my hands goes down, but then about the 3rd day I start going back to the swollen hands, etc. I was on 10 mg., one a day, of prednisone for over a month and it didn't do anything. It gets very discouraging and some times my hands just don't want to function. I was wondering if others have the swelling in their hands and how they handle it. My fingers are getting ugly looking.
Gigi08

#4 pieski

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Posted 04 November 2008 - 06:00 AM

Hi gigi,

I find that when I am getting puffy if I drink herbal tea and lots of water it helps a lot. Its like the more good fluids in, the more bad fluids out. Know what I mean?
~ Teresa~

#5 Wohali

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Posted 04 November 2008 - 07:11 AM

Hi Gigi,

Are you taking an NSAID or anti-inflammatory? I take Voltaren and without it I can't even bend my knee to walk. I only got the puffy hands early on in the illness and haven't for years so I can't offer advice on that.

#6 jefa

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Posted 04 November 2008 - 07:26 AM

Hi, Gigi, and welcome to the ISN Sclero Forums. Hang in there with the Plaquenil. It was six months before I started noticing a difference, but it is finally making a difference. I have been taking it for almost 8 months and I have noticed an improvement in swelling and hand pain and in reduced fatigue (not completely gone, but not nearly as bad as it was). Good luck.
Warm wishes,
Jefa

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#7 Amanda Thorpe

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Posted 04 November 2008 - 12:52 PM

Hello Gigi

Glad you've joined us!

Swelling in the beginning of this disease is common, my hands and feet swelled, my feet so much so that I went up a shoe size! I don't swell anymore and never treated it as most was prior to diagnosis.

As already stated make sure you are monitored and seen by doctors familiar with scleroderma.

I'm on Cellcept and as with most drugs a few months is required before any changes are seen, persevere with your meds.

I honestly don't think there is any way to get rid of the pain but it can be managed, different things work for different people, it's a case of trial and error. Just make sure the doctors take it seriously and offer you options as sometimes it gets overlooked as a symptom. As far as fatigue is concerned I do my best to work around it because you can't ignore it or work through it so I sleep when I have to whether that's 9am or 3pm or both!

Be realistic about what you now expect from your body and keep posting.

Take care.

Amanda
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#8 Gidget

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Posted 04 November 2008 - 02:37 PM

Teresa is right -- if your hands are puffy or swollen drink lots and lots of water -- try to drink 8 large glasses a day. Not only will your skin be not as dry, the puffy and swolleness will be less. good luck gidget

#9 gigi08

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Posted 04 November 2008 - 04:32 PM

I want to thank everyone for your responses. It is just so comforting to know that what I am experiencing is nothing that others haven't experienced. I feel so in the dark with the diagnosis and I keep reading about it. In 2001 I lost about all my hair. They told me it was alapecia. I did get it back but there was several times that it started falling out again and I got shots that did help.

Then I was also told that they thought I had cutaneous t-cell lymphoma because of rashes that I was getting. Then when I changed doctors. due to insurance, they told me it was psariasis. Now the rashes are gone and have been for a couple of years.

Now I'm told I have scleroderma.

Right now I am just taking the plaqenil 2x a day and Ibruprophen 800mg 2 -3 x a day. Previously to these I have tried mobic 15mg 1x a day, pain medication, methotrexate 5 tablets once a week, prednisone 10 mg 1 x a day. I did not see any changes with any of these. Volteran is something I haven't been on yet.

I do drink at least 6 - 8 oz. glasses of water a day and sometimes more. I eat very healthy. I used to get exercise in also.

Gigi
Gigi08

#10 canon

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Posted 05 November 2008 - 07:41 PM

Hi gigi and welcome,

The plaquenil does take a long time to start working. Have been on plaquenil pills and methotrexate injections for years now and there are days that nothing seems to help except prednisone. My Doctors and I have been staying clear of prednisone due to my new fluctuating BP problems. It also causes glaucoma when I am on it. Can't take nonsteroidals or much of anything due to reflux and now Barrett's so I do other things. I use parrifin baths for my hands, exercises for scleroderma and bursitis. They are not demanding exercises. Do you have the hand out on sclero exercises? I listen to music and read some of my favorite writings. I do breathing exercises to help me relax, wrist wraps at night for tendonitis and acetomeniphen, no more than 3000 mg in 24 hours. Sometimes the search for relief can be unending but there are things we can do. It does take time for medicine to work especially with pain, skin rashes and or raynauds. Maybe your Doctor can help you brain storm too. Sometimes they are ok.

Keep looking, you'll find something. This forum and site is great for support and information. Keep us posted.

With gentle thoughts.

Judy
A happy heart is good medicine.

#11 Nina

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Posted 06 November 2008 - 02:19 PM

Welcome Gigi ~ so glad you found our wonderful forum. You will find tons of information and endless compassion and caring. We all have our own unique problems, and you will be sure to find someone with very similar problems as you have.

Keep posting, keep educating yourself and never give up, things will be better at times and things can also get worse, but someone is always here to listen no matter what is on your mind.

Much love,
Nina (DE)

#12 Sweet

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Posted 09 November 2008 - 03:58 AM

Hello Gigi and welcome to the Sclero Forums.

I'm really glad you joined us and I so look forward to knowing you better!
Warm and gentle hugs,

Pamela
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#13 gigi08

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Posted 10 November 2008 - 04:45 PM

Hi Judy,
Thank you for writing. I do not have the handout for sclero exercises. I know I need to exercise but I just haven't been able to get myself going. I used to exercise all the time. The more I read the more I know that it is good for us. How can I motivate myself? It seems that knowing exercise is good for me just isn't good enough to motivate me. My job is weight loss and of course incorporating exercise and I still have trouble doing it. My mind and body just doesn't want to cooperate.
Gigi
Gigi08

#14 canon

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Posted 11 November 2008 - 05:36 PM

Hi gigi,

Sorry I missed your post yesterday. You can private message me. The exercises are not demanding. You can do some when your sitting in the chair or laying down. They are mostly for stretching your skin.

I am so sorry you are having such a horrible time with this disease. Sometimes it makes me cry too and I don't have many tears either. I also developed dry eyes. <_< Think about someone or something you love and care for and do it for them or that to start. Then you will work into doing it for yourself to keep your skin and ligaments from tightening up. There are an awful lot of caring and loving people on this forum. Sometimes we have to go beyond feelings and do what we know we need to be doing. As my opthamologist said we only have one shot with this disease. Be aggressive. It is not worth giving up and in.

Keep posting and you will feel stronger for it. You'll meet alot who are having the same issues.

With gentle thoughts.

Judy
A happy heart is good medicine.