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#1 ladyhawke

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Posted 09 February 2008 - 09:50 AM

Hi all
I've just joined and surfing through some posts and information. I'm so glad to have found you! I started with a diagnosis of polymyositis early 2007 when I could no longer walk or turn over in bed, did the wheelchair/walker/cane thing. Was put on 16 pills a day of prednisone. Am now down to 2 1/2 as well as 3 pills of imuran. Am able to walk now, still have some moonface going on. My hair has grown back thank goodness. Ended up in CCU to have water removed from around the heart. They tell me now that I also have scleroderma, don't know which one as of yet. Have to see the gastro guy in march after all my tests are done. I see a nuerologist and rheumatologist as well. They are hoping that the gastroenterologist will have the answers. From what I am reading, there are no answers. Any advice on it would be appreciated. I have very bad reynaud's. Fingers and toes go white and charcoal gray and painful. From the top of my throat alllll the way down is being effected. I take 2 pantoloc and zantac every day (morning and night) as well as Domperidine (2 half an hour before each meal - 6 a day) it's a motility drug. And that does help somewhat but not a whole lot. Also have an incontinent problem which no one seems to want to talk about but it's there and it's not nice. Anyway, I have spent most of my day today looking through posts and finding my way around here. I did set up my profile and put an album in with some pics. Thank you for being here......Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#2 peanut

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Posted 09 February 2008 - 12:04 PM

WELCOME Lisa,
I'm glad you found us. It's good to hear you can get around now. I too am on Predisone and have moon face. Actually I look 8 months pregnant.

There are treatment options available like Cellcept, Imuran, cyclophosphamide, etc and clinical trials you may look into. Have you looked into Revatio/Viagra for your Raynauds. I take that + Norvasc + daily paraffin wax baths and it really seems to help.

Ask lots of questions.
peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Sd53

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Posted 09 February 2008 - 12:21 PM

Welcome!!! I was also glad to find this website :D I don't have any answers for you yet, but we are here to support one another, no matter what our physical problems are. So sorry, for all the problems you are having, but at least you have a diagnosis and now the doctors can help you. I have Sclero as we all call it, and I was scared to death when they first told me, but the doctors can help with meds. Thats where this website is helpful too, there are lots of benefits like encouragement, the ISN Newsroom with very informative articles about everything and lots of input from others, you'll hear from others that have your same diagnosis. Meanwhile, I hope you feel better soon. SD53 :)

#4 epasen

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Posted 09 February 2008 - 12:24 PM

Lisa,

welcome, I'm so glad you've found us. Sorry to hear that you have to go trough all of that daily.. It's really hard and I know people in here will understand how you are feeling. I hope you will find some answers, at least I've found. Hopefully your "gastro guy" can give you something to make things a bit better.

Take care,
Emmi

#5 ladyhawke

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Posted 09 February 2008 - 04:23 PM

Thank you so much, Peanut, Emmi & SD53: I'm going to check out these links that you sent, I've found so much out just today by surfing through this site and reading through the forum. They haven't suggested anything for the raynaud's so far, I have done the parafin wax and it's wonderful. I'm thinking of getting my own machine. I will be asking the doctor about the drugs you mention. Thanks so much. I'll be seeing you on the forums again - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#6 jefa

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Posted 09 February 2008 - 11:47 PM

Hi, Ladyhawke (Lisa) and welcome to the ISN Forums. Just had a look at your photo gallery and you have such a lovely, friendly face. Sorry to hear about your troubles, but as you can see from the warm welcome you have already received, you have found a great place for information and support. I look forward to getting to know you better.
Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 ladyhawke

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Posted 10 February 2008 - 03:13 AM

Thank you so much Jefa....what a nice thing to say....I am going to try and get in on the chat tonight, I am way out in the country and am on dial up so don't know how that will go. I am so glad to have found this group and have already received some wonderful information from an angel on here who PM'd me. I am taking some names to my doctor next week to get some help on one of my "issue's". One problem at a time seems to be the way with this horrible disease. Finding this group, feels like I've "come home".....sigh......Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#8 Snowbird

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Posted 10 February 2008 - 03:32 AM

Hello Ladyhawke

It's nice that you joined us...many of us are fairly new too and those that have been here a little while are very knowledgeable and helpful with this disease and the ISN Team are terrific too! Sounds like you have been through the mill, but someone here will always understand how you feel and be able to help somehow with good advice and ideas....at least, that's what I have found. Good luck with your appointments...hope you can keep us updated.
Sending good wishes your way!

#9 Peggy

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Posted 10 February 2008 - 05:23 AM

Welcome Lisa! I too am a fairly new person to this forum as well and I can tel you since I've been on it that it has been fantastic! I have diffuse systemic sclero which means its in my organs and pretty advanced skin involvement. I too have terrible gastro problems and just saw a new gastro doctor last week who will be doing an endoscopy to see how much damage these attacks that I'm having are doing. They are so bad that I have to take a GI cocktail to get relief from the burning. The best advice that I have gotten from people is to see medical doctors that know what sclero is and if they don't move on as it is so frustrating when dealing with someone who doesn't know what it is and what it can do. I am finding that there is always something with this disease.

Warm hugs from Minnesota.

Peggy

#10 ladyhawke

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Posted 10 February 2008 - 09:08 AM

Thank you for your response Snowbird and Peggy.....it's so nice to find "friends" here. And to see so many going through this awful disease is amazing. I actually met a lady the other day at my physio who has had this for 13 years. She is the first one that I have come across with it. She was older than me and it was like looking into a mirror when I looked at her. Her mouth and chin and lips look just like mine do, she talked like I do etc. etc. Her face wasn't puffy like mine though but that is the prednisone. It's really something when you can finally talk to someone who "knows".....people around you can symapthize but they "can't feel what you feel" and it's so hard to explain to them. My husband is my hero. I truly believe I would not be here today without the support he has given me. We've been married 33 years and I'm very thankful for this man. I know that I'll be talking to you again here, as I have many questions and I hope that I can help others through my experiences as well. - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#11 truman

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Posted 10 February 2008 - 01:07 PM

I've been put on Plavix for the Raynauds in addition to my Norvasc, and seem to be handling things pretty well lately.
Tru

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

#12 ladyhawke

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Posted 10 February 2008 - 02:22 PM

Thank you Tru....I'm writing all these names down to ask my gastro guy when I see him Mar 6. What is Norvasc for? Is it for Raynaud's as well? Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#13 janey

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Posted 10 February 2008 - 03:48 PM

Lisa,
I'd like to join the others in welcoming you. I'm so glad you decided to post after browsing. This site has lots and lots or information and I can't say enough about the forum members. Lots of experiences and tons of support!

You ask about Norvasc - actually it is a medication for lowering your blood pressure by relaxing your veins and blood vessels to improve blood through. Well that's exactly what we need to do to help prevent problems associated with Raynaud's, so many doctors prescribe it. I took it for a few weeks but it made my heartburn (reflux) unmanageable, so I had to come off it. For many others it has worked wonders. With Raynaud's it's crucial to try to prevent attacks as much as possible by keeping the whole body warm and making lifestyle changes that help to reduce Raynaud's attacks. Here's some pages you might want to explore: Raynaud's prevention, rewarming tips, and tips from patients.

Like you I have both polymyositis and scleroderma. Both were diagnosed in 2003. It's been a struggle, but with a great relationship between my doctors and my doctors and me, it appears that we have both diseases stable at this point.

I love your pictures!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
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International Scleroderma Network (ISN)

#14 emmie

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Posted 10 February 2008 - 04:36 PM

Welcome, Lisa! Aren't ya glad you decided to post? We are certainly happy that you did.
So sorry you've been through so much. I hope you find some information that is helpful to you. And we're always here to listen to and cheer with and for each other.

xoxo emmie

#15 ladyhawke

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Posted 10 February 2008 - 04:47 PM

Thanks so much Janey, that is interesting about the Norvasc. The woman that I met at physio....for her Raynaud's they put her on a nitro patch. She had already lost two toes. The nitro patch thinned the blood and helped with circulation to her hands and feet. I'm going to ask about that next time I'm at the doctor's. Sounds reasonable to me. She said they told her had she started the patch sooner, she would not have lost her toes.
Thanks so much for the warm welcome. I did the chat tonight but wasn't feeling so good so had to leave. This is just such a great place! And I have learned alot in a short period of time. There are such good people here - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#16 Stacey

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Posted 11 February 2008 - 04:07 AM

Hi Lisa,

First off, welcome to the posts. I don't get to post on here very often but like to whenever possible.
I like you have Polymyositis. Well ok my exact diagnosis is Scleroderma with an overlap of Polymyositis. I know how you feel with the prednizone moon face. Mine has finally gone away. I was originally on 60mgs a day and now am down to 9mg. I am sorry to hear that you have all of this going on. I do hope that they are able to get the right diagnosis for you! The longer it takes it seems the longer you suffer! Just know that you are not alone in all of this.

Hugs
Stacey :D

#17 ladyhawke

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Posted 11 February 2008 - 11:28 AM

Hi Stacey:
Thank you so much for the welcome. Wow, you have polymyositis too?? I started with the poly a year ago and am on the prednisone and imuran for that. So far I have nothing for the sclero. I see the gastro-guy in March and the other doctors rheumatologist and neurologist are hoping that he will have the answers. I started at 80mg's of prednisone and am down to 12mg's now. I tried to go down to 11mg's, was dropping 1mg per week but couldn't do it. So stayed at 12mg's and will drop 1mg every 3 weeks. Man it is hard to get down on that stuff! I still have the moonface, was told you don't lose that until you get down past 10mg's. How long have you had the poly? Are you on the myositis group as well? Thanks again - Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#18 Stacey

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Posted 11 February 2008 - 12:55 PM

Hi Lisa,

I have been officially diagnosed with is since August of 2007. I had been dealing with problems with it since November 06. My first rheumatologist ran all the normal tests but didn't find anything. In April my CPK levels were normal but by the time August rolled around they were up to 8,000! It's a miracle I was able to do as much as I was. I haven't joined the Myositis group yet. Please PM me the link for it? Now that I've hit the lovely mark of 9mg of prednizone I only get to go down 1mg a month. That's if my levels stay normal. I don't have many things because of the Sclero yet either. Except for my hands have a little bit of tightening and I now have high blood pressure which my rheumatologist says is from the scelro. Other than that I haven't been affected. Both of my grandmas have Sclero also so I've seen what it has done to their lives. Were you ever on the Methotrexate?
I hope everyone has a great day!
Stacey

#19 ladyhawke

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Posted 11 February 2008 - 03:49 PM

Hi Stacey
I just PM'd you the link to the TMA. It's a good group just like this one. Everyone searching for answers and more than willing to share. - Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.