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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 mammabear40

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Posted 16 December 2015 - 12:26 PM

Hello Everyone, I'm new here.

I have been having issues for the past year but have just been given the diagnosis of scleroderma last month. My doctor says he is seeing changes and that he wants me to begin treatment asap. I'm no doctor and won't pretend to know more than what I have read on the internet but I'm wondering if this means something bad?

I am 40 and for the most part in good shape. I started with swelling in my hands that progressed to thickening of the skin on my forearms, Raynaud's and some joint pain and reflux. I am not sure what to think about all this, I have always tried to stay away from medications of any kind, be it for a headache or cold and now they tell me I will be on treatment for life. Did anyone else here start off this way? I am a bit scared and want to do whatever I can to make it better. Is there any lifestyle changes to be made? Any responses will be welcomed, you are all talking from experience which is better than what the internet can tell me.

Thanks.

#2 Joelf

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Posted 17 December 2015 - 03:14 AM

Hi Mammabear40,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with scleroderma and I can understand how worrying it can be for you to be suddenly on a regime of strong drugs, having never taken anything stronger than an aspirin.

 

I was in a similar position to you, always very fit and healthy and horrified to be taking strong drugs. However, as it was important in my case to treat the inflammation/fibrosis aggressively because my lungs were affected, I soon realised that if I didn't take a cocktail of drugs, I would probably be dead, which tends to concentrate the mind wonderfully! :wink: Now six years on, I am starting to decrease the amounts of prednisolone I take, with a view to coming off it altogether and also I have decreased the immunosuppressant I take, so it is possible that you may be able to decrease your drugs in the future, depending how the disease pans out for you.

 

I've included some links to our medical pages on Skin Fibrosis, Raynaud's, Joint Involvement and Reflux, which I hope you'll find helpful and informative. We also have a page on Living with a Chronic Illness which I hope will help you discover ways of living with your illness and maintaining a high quality of life.

 

We do recommend that our members, if possible, consult a Scleroderma Expert, as this complex disease does require treatment from a rheumatologist with specialist knowledge and expertise.

 

Kind regards,


Jo Frowde
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#3 mammabear40

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Posted 17 December 2015 - 11:37 AM

Thank you Jo, your response means a lot. I feel like its all happening so fast and I haven't had time to process it all.

Did you have to make any changes when you went on the immunosuppressants? This is the path they have set for me to take. I am just waiting for a few weeks until it is safe to start them after taking vaccines that were recommended.

I meet with the rhematologist again next week to go over the info on the medication and then I can start the week after. I'm still waiting for an echocardiogram and a lung function test but of course these may take a while. I guess my biggest question of all is how it will affect my life?

I have chosen not to tell my family though of course my husband knows and I'm wondering how long/if it is possible to keep it from them. I don't want to add any stress to anyones life right now, which is why your site is a blessing. I feel better knowing that there is someone out there to talk to about this. So thank you :)

#4 Sweet

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Posted 17 December 2015 - 02:49 PM

Hi Mammabear!

 

Welcome to the Sclero Forums. I'm so glad you joined us. This is the place you'll find accurate information, encouragement, and people that truly get what you are going through. Again welcome. 

 

I know it can all seem so overwhelming at first. I've been diagnosed for almost 16 years now. When my husband and I found out, it felt like a death sentence. I think we literally went through the grieving process. I was/am like you in that I don't like to take medications until I absolutely have to, and frankly even at that, sometimes I am non-compliant  :wink: Seeing a specialist really helps though. I'm lucky enough to see someone that is top of his field. We don't always see eye to eye, but he knows his stuff and I respect that. 

 

As far as telling family, I can tell you, that I had to learn more about my condition, and get my own emotions under control before I told my kids or friends. It made a difference in how I was able to help them understand. Some will never understand, but the more you can learn about it and learn what  to expect, and what's to possibly come (I say possibly because everyone is different, and you could very well stay right where you are and never progress) the better you'll feel about explaining to others. 

 

My advice is BREATHE, take one day at a time, ask lots of questions, take notes when you are at your doc appointments, brings notes TO your doc appointments with questions you have, because if you're like me when you get there NONE of your questions will come to mind  :happy:

Always be your own advocate, you know your body better than anyone else, so speak up, ask questions, and realize the decision is ultimately yours.

 

With treatment, I didn't have any bad outcomes with the immunosuppressants. Everyone is different though. The medications have helped greatly!

 

You ask about lifestyle changes... My best advice on that is listen to your body, and my new motto is "Pace not Race". I'm a type A personality, and have run myself ragged most of my life.... it was very hard for me to be humble and allow myself to slow down and take care of myself. I did end up having to quit my job as I was no longer able to physically endure it, and that in itself was a blessing. But I had to learn to say NO to friends when I was too tired and *gasp! ASK FOR HELP when I needed it. 

 

I'm so glad you are here and I look forward to knowing you better. Keep us posted!! :hug-bear:  :hug-bear:


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Joelf

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Posted 17 December 2015 - 03:20 PM

Hi Mammabear,

At the time I was diagnosed I was actually quite relieved, because I had felt so dreadful and also had foolishly googled Pulmonary Fibrosis and frightened myself witless, so once I knew what the problem was, I did feel a bit happier. I had a course of IV cyclophosphamide, which is a chemotherapy drug, but in a much weaker dose than is given to cancer patients, so thankfully I didn't lose my long, curly hair, which was my worst fear at the time. I then went straight onto azathioprine (immunosuppressant) and prednisolone and have been on those ever since.

Of course, as I said before, I would much rather not be taking such strong drugs, but as there really was no other choice, I've accepted it and arranged my life accordingly. Ironically, the joint pain and problems that have occurred with my hips have actually affected me more than the lung involvement I experienced. When I was first diagnosed with scleroderma, my friends were intrigued (as it was so rare) but unfortunately soon became very bored when I insisted on describing every minute detail of my treatment and so rather than becoming a social leper, I now hardly ever mention the disease to them unless specifically asked about it. My long suffering husband is used to it, poor soul!

I do understand how anxious you're feeling at the moment; I was very worried in the beginning, but although it may sound a bit peculiar, having scleroderma has improved my life in a strange way. The most important thing is that I've met some really fantastic people, whom I would never have known if it wasn't for this bizarre disease and got so involved with the ISN (before that I was a complete Luddite until Shelley dragged me kicking and screaming into the twenty first century!!)

So I'm happy to say that there have been a lot of positives with scleroderma; of course I would rather be as fit and healthy (and young!! :wink:) as I was, but you can't have everything and I'm determined to live to a ripe old age, if only to get my money's worth out of my pension!!

Jo Frowde
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#6 mammabear40

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Posted 18 December 2015 - 11:45 AM

Thank you ladies, I really appreciate your advice. It feels good to not be alone with all this.

#7 Tully

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Posted 20 December 2015 - 05:24 AM

Hello MB,

Sounds like your symptoms are very similar to mine. I started seeing a general practitioner in December 2007 and then a rheumatologist in January 2008. By June, he was pretty sure I had scleroderma. He sent me to a specialist and on September 29, 2008 I was told, "You have 2-3 years, get your affairs in order."

So to answer your question, Yes, it's bad, Yes, it changes your life and everyone around your life. Medicines will now be the norm. JUST KNOW, not all is lost. Look at me, 7 years later, I'm still here. Like you, I was active in sports, motorcycles and chasing a 6 year old son. Now I'm the designated putter in a scramble, haven't been on my bike in years (Most Moms tend to think this is a good thing) and now I have to sneak up on a 13 year old young man. Losing the ability to get out there and work or participate does hit hard but I'd rather here taking my daily meds than the alternative.

As far as not telling your family, all I can say is it will not take long for them to figure out something is wrong. So you probably should think about how/when to tell them. I went to all of the appointments alone, when I got my diagnosis, the doctor told me he never wanted to see me again unless I had someone with me taking notes and/or answering the questions I forgot to ask or was too stunned to.

I posted a thread on my history a few days ago "....diagnosed Sept 29, 2008" Take a few and read it and the comments. This forum accepted me with open arms immediately.

Hang in there and if you have any questions, please ask.

Tully



#8 mammabear40

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Posted 22 December 2015 - 03:20 PM

Thanks Tully, your story certainly gives me hope, and to be honest scares me as well.

I was secretly hoping that this would be as bad as it gets, but I think that's a pipe dream. I'm a little scared of what's yet to come. I start mycophenolate in a few weeks. The rheumatologist sounds optimistic about it's success. I can only hope that my outcome mirrors the success of your story. I'm hoping to keep up my active lifestyle for as long as I can; too many plans made already. :wink:

#9 Shelley Ensz

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Posted 23 December 2015 - 08:27 PM

Hi Mammabear,

 

One of the things they study in regard to scleroderma is "fear of progression".  It is so easy for us to sink into fear, over anything, not to mention something like scleroderma!  But that's one reason why we all hunker together here, to provide inspiration and encouragement for each other.

 

I've long outlived many dire predictions, and many others here have, too. I find it helpful to try to focus on how to make today as fun and happy and joyful as possible. By building many little joys into our daily routine, we don't need to fear the future quite as much, because we have confidence that we can find some way to somehow make ourselves happy regardless of our outward circumstances.

 

The most difficult thing for me was learning to not take life so seriously just because I had a serious illness. The illness will be whatever it is going to be. We have little control over that, except for trying to get the wisest counsel and do our best to follow it.  Then for the rest of it, it can help reduce our stress to take things as lightly as possible; to try to find the silly side of ourselves and of humanity.

 

I hope your new wonderful friends here will warm your heart this holiday season and brighten your life in the coming year.

 

:hug-bear: :hug-bear: :hug-bear:

 

:hug-group:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 mammabear40

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Posted 27 December 2015 - 04:14 PM

Thank you Shelley, that is really good advice, sounds like a good New Year's Resolution to make.

I have already started a "bucket list" for this year.....hope that doesn't sound morbid, but I wanted to make sure I did some of the things I have always thought of doing in case mobility becomes an issue in the future. I think I will add your " making each day a good one" to that list as well. :happy:

Everyone has been so wonderful here, thank you!

#11 Shelley Ensz

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Posted 28 December 2015 - 11:51 AM

Hi Mammabear,

 

A bucket list is a great idea for anyone, whether they are healthy or sick. 

 

It's a very positive approach to take, and also one to revise whenever your abilities increase or decrease. At the top of my To Do list, I always put Rest - Refresh - Relax, so that I always have a sense of accomplishment, come what may, and that alone makes me happy.

 

Sometimes you may need to swap out Tour of Europe to Tour of Neighborhood Coffee Shops. Or swap Become Olympian Gold Medalist for Play a Card Game Tonight. What matters isn't achieving any bucket list items, so much as having a list of things that we can look forward to.  Setting a timer to watch the sunset tonight can be just as inspiring a goal as climbing a mountain, if we're doing what is within our present abilities and entirely letting go of self-pity (so that we can wholeheartedly enjoy it.)

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Amanda Thorpe

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Posted 28 December 2015 - 01:34 PM

Hello Mammabear

Welcome to the weird'n'wacky world of scleroderma! You might not wanna be here but we're mighty glad to have you!

You've already been given so much good information and encouragement, I would like to hopefully add some more.

I've had diffuse systemic scleroderma 8 years now and the life I now have, and my husband now has, are so different that I consider our lives in terms of pre and post scleroderma. This is not the same for everyone, however, yes every experience changes us in some way but not everyone has life changing symptoms.

Yes, it's a progressive, unpredictable disease but as we all have our own tailor made version of scleroderma, you never know what you're gonna get, or not as the case may be, until you get it, or not.

Even if it does radically alter your life as it has mine, I am now wheelchair dependent, have crippling pain and fatigue to name a few symptoms, you can still have a good life, as I do. Once I adjusted my horizons, I saw that there was still good life to be had, it just looked nothing like I thought it would but that wasn't necessarily a bad thing. I coined that phrase 8ish years ago and I'm happy to say that it's still as true today as it was then.

Take care and keep posting.

PS You see I mentioned how my husband's life had changed as well?
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#13 mammabear40

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Posted 10 January 2016 - 11:38 AM

Amanda, it never ceases to amaze me at how positive everyone's responses are no matter what their situation. I am quickly learning that how things go depends a lot on your frame of mind, and while I won't pretend to have that one down, I am working on it. :wink:

#14 mammabear40

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Posted 10 January 2016 - 11:50 AM

Out of curiosity, do any of you have any experience with mycophenolate mofetil (Cellcept)?  I've heard good and bad things about it, but have been assured that under the circumstances there isn't much else suitable for me. I start it next week and am wondering what I'm in for.



#15 Joelf

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Posted 13 January 2016 - 10:30 AM

Hi Mammabear,

 

I've never taken Mycophenolate, so can't give you any first hand advice, although I know we have had members who've taken it with varying degrees of success and I expect they'll be able to give you some more help and advice about it.

 

I've found another link for you to Mycophenolate and also a recent article which I've just posted in the News Forum which does give information about the possible side effects etc. which I hope you'll find helpful.


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