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Peter

New diagnosed limited scleroderma

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Hi I was diagnosed with Limited Scleroderma in December 2009. I was admitted to St Luke's hospital for test to ascertain which type of Arthritis I had. After numerous tests they came to the conclusion that I had Raynuads and scleroderma, apparently I am the wrong gender. They have put me on methotrexate, nifedipine, losartan, and naproxsen. I suffer from a lot pain in my hands and feet, some of my joints ache and get short of breath. Could anyone tell me if the pain will dissipate once they have stabilized my medication?

Prior to this I was very active with skiing,sailing, mountain biking and fell walking. What are the chances of me being able to carry out these activities? Look forward to other peoples idea and experiences.

Regards

Peter

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Peter,

Welcome to the ISN forums! Yes, statistically, you are the wrong gender for scleroderma, but males do get it. We have several males as active participants on this forum, so I'm sure some of them will chime in.

 

As far as what will happen in the future, how will the medication help you and will you be able to resume your previous activities - no one can say, unfortunately. This disease affects everyone differently. Sometimes the pain goes away and sometimes it doesn't. I'm not a doctor, but everything I read, and something that all of my doctors tell me is to stay as active as possible. I became a couch potato for a couple of years and my cardiologist made me get up and get back to the gym. She was so right. I feel 100% better and my stamina and strength increased tremendously. No - I haven't returned to backpacking and cross-country skiing and will never return (can't stand the cold anymore!), but I've replaced those activities with others that I can do and do enjoy. It's so important to maintain friends, family and fun.

 

Here is a menu to some research on limited scleroderma in case you haven't seen it yet. We have pages of information and hundreds of experienced people to help you. Just ask. We're here for you.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Peter

 

Welcome to the forum!

 

Despite being recently diagnosed your medical team seem to have you on a comprehensive treatment regime which is great!

 

Everyone with scleroderma has a unique experience of the disease and as Janey has already said no one can predict progression and outcome. What is worth bearing in mind is that the symptoms can wax and wane so you can improve as well as get worse and some things you can't do now you may be able to do again with time. Scleroderma is never boring because you never know what you're gonna get or when! :lol:

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Peter,

Welcome to the forum. I have CREST which is Limited Scleroderma. Raynauds and Eosophageal dismotility have always been my biggest worries although all the other things have been there in the background. I know that my disease started in November 1966 and it took until May 2003 before I was diagnosed, so as the others have said, everyone is different and the path the disease takes differs from person to person.

 

I will be 66 in a couple of weeks and it would seem that I am one of the older participants in the forums. I am fortunate that I do not have any pain, joint involvement (except for one knee) or skin involvement except for my fingers and cuticles, so I have been able to function more or less normally all these years.

 

I have been able to be an active Mum and apart from almost disabling Migraines and EXTREME fatigue have done pretty much everything I wanted to as long as I kept warm. You have the advantage of a drug regime which should keep a lot of the symptoms at bay , and you also have the advantage of the huge strides research has taken, at least in my lifetime.

 

Remember to keep educated about your disease, get copies of all your reports and tests, ask questions and don't accept shrugged shoulders or comments about you being over anxious. I have had all those thrown at me over the years but now I know to keep on enquiring till I get a proper answer. There are still practitioners out there who don't really know about Sclero.

If you meet one of those, move on to somebody else.

 

Keep warm (especially your trunk) there are wonderful undergarments now which will keep you warm and nobody will know how many layers you have on. I live in New Zealand and our Merino wool has been developed into a wonderful fine, machine washable yarn and I wear up to 5 layers at a time then put a coat or jacket over the top.

 

Carry on with your drug regime, don't think because you are feeling better you can start to leave things out. That is something else I have learned from experience!!!

 

Be brave, proactive, and active and keep cheerful

Best wishes

 

Judy T

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Hi Peter,

 

Welcome to the Forums. I'm sorry for your diagnosis - it takes a while to come to grips with even the idea, but once you do and once your treatment regime gets stablilized, things do get better. There also appears to be a pattern of improvement after about the 3-year mark.

 

I no longer live in the UK and miss not only the fells, but things like the Lyke Wake walk, but I have carried on walking here in the Rocky Mountains of the USA, aided by supplemental oxygen and my 'helpers' who carry extra O2 for me (one of them is a back-packing border collie who is happy to carry 2 small cylinders because it means she always gets to go too). I also do back-country horseback pack trips.

 

I'm soon to be 63, have both pulmonary hypertension and pulmonary fibrosis, as well as Raynaud's, etc. My advice is to keep active and look for work-arounds for the things that have become difficult. The Forum is a great place for advice in that line - somebody always comes up with a good idea.

 

So once again, welcome to the Forum. It's always nice when we have a new fellow join.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Peter and welcome.

 

I'm glad you've joined us, but sure sorry it's due to your illness. We do have other men on the board, so you are not alone! Each person is a little different and you never know how this disease is going to affect people one way or the other. For me, after being put on Plaquenil and meds for GERD, my pain did ease up. Take one day at a time, look around the site, as there is so much information, ask questions and we'll try to help you along the way.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Peter

 

Welcome to this friendly & informative forum although it's a shame that you had to be diagnosed with Scleroderma to find us.

 

I have Limited Sclero & take Prednisolone & have just started on Azathioprine (so far so good!! ;) ) Like you I was very active before I had Sclero but although my lungs have been affected, thankfully the excellent treatment I received has reversed a lot of the damage & I am able to work out successfully at the gym, if not as hard as before, certainly enough to keep myself pretty fit. In fact I put a lot of the success of my treatment down to the fact that I was very fit previously & was therefore able to spot the problem with my lungs early. I've also found that a positive attitude goes a long way!! ;)

 

Hopefully you will still be able to lead an active & full life albeit not perhaps at quite the same intensity! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you for all your replies,it is heart warming to find it is not the be all and end all. I will continue to monitor this forum as there is a lot to gleamed about other people in the same boat.

 

Judy T thank you for your reply in reference to keeping warm. I already use clothing made of Merino wool.I use a company on the Internet that only deals with companies that produce in New Zealand it is really good and they have started using it in conjunction with Possum fur, which I understand is a pest in your country.

 

I have decide to try and go back to work in the next 2 weeks and see how I get on. One problem is it is a very stressful and intense work, having to deal with customers in a contact centre for a housing association One problem I find typing quite painful which is the major part of the job, hopefully they will involve occupational health to find alternative position.

 

On an other note I applied for life insurance as I realised that I need to make provisions for my son. The company decline the application due to this condition. Does anyone know of a company that will allow cover?

Once again thank you for all your replies and good luck to everyone.

Peter :emoticon-insomnia:

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I am new to the site and to the disease, just diagnosed this month. I have been dealing with symptoms for years. I always hoped they were just random issues. A definitive diagnosis just pushes me to read and read and get more and more frightened. I don't know what's worse, hearing what could happen, or hearing that everyone's different and so you'll never know what will actually happen. It's draining me going from doctor to doctor double checking and drilling me into the ground with casual attitudes toward my life. it seems like no one cares, or takes it seriously, or thinks its a big deal. am I reading too much into it all or do I need a stronger group of support?

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Hi Masterst2,

 

Welcome to the Forums. I'm sorry you've had a rough time getting diagnosed - unfortunately a common scenario as you will probably have read.

 

When one is newly diagnosed, I believe there is a tendency to think no one is taking one seriously, up to and including the medical people one deals with. Because of the hugely variable course of the scleroderma spectrum of diseases, doctors can certainly appear to be complaisant to the patient who wants all the answers and rock-solid predictions (a nice contradiction there) and treatment right now, this minute. Fix it!! It just doesn't work that way. Would you really want to be given inappropriate treatment for a complication that doesn't exist at this time and may never occur? Would you want a doctor to say, with no clinical grounds for the opinion, that you are going to develop each and every symptom ever associated with the disease and that you should go away and put your affairs in order? I certainly wouldn't.

 

All I ask of my doctors is that they are vigilant and open and honest with me. I also expect them to explain anything I might not understand. For my part, I try to understand the limitations they must work within and be understanding with them. Much as I have occasionally wanted to scream and break things, it really doesn't help to show how completely frustrated one is. One thing that can work well when dealing with doctors is to have a friend go with you to appointments, as an advocate and as a second pair of ears.

 

You don't say what you have been diagnosed with nor what problems you are experiencing. You also haven't said why you are going from "doctor to doctor, double checking" nor if you've been seen by a scleroderma specialist (something I think most of us would recommend). It's hard to know what to tell you, as far as knowing whether you are reading too much into it all or not. I do know that the stress of worrying about an unknowable future is extremely bad for all of us and I'd like to suggest you have a look at the various sections and articles on the Emotional Adjustment Main Page. Would it be helpful, perhaps, to find a local arthritis (scleroderma is a form of arthritis) support group? Sometimes establishing a support system that works can be complicated. What works for one person doesn't always work for another.

 

I wish I could give you better answers. There just aren't any. Hang in there.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Masterst2

 

Welcome to the forum! Adjusting to a life with a chronic illness, whatever it may be, is a long process and something none of us would choose to have to do but do it we have to. Hopefully being on this forum will help you in that process.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Masterst2,

 

Welcome to the Sclero Forums. I'm so glad you joined us. Now you will be amongt people who truly do "get it". We'll understand what you are going through, and we can support each other.

 

When I was first diagnosed I was ready to dig my grave. I was so overwhelmed, and the more I learned the worse off I was. Then I found this site, and became friends with so many people that have scleroderma, and have lived a very long satisfying life.

 

It really does take time to adjust to everything. I hope with each day you find less anxiety.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Peter,

Pleased to hear you are already keeping our country's end up by buying our Merino clothing. :emoticon-hug:

 

Possum is great too. We have a saying here that the only good Possum is a DEAD possum - just a pity they can't use the roadkill ones for clothing!!!!!!!!!!!!!!!!!!!!

 

I have lovely warm tops which are merino, possum and silk or mohair.

 

Keep on keeping warm, and hope your weather starts to warm up soo.

 

Hot hugs from New Zealand.

 

Judy T

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Hi there

 

I want to welcome you both Peter and Masterst2....you've come to the right place for factual and good information...this is the place to be!


Sending good wishes your way!

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I am a 55 year old male with scleroderma. For the first 25 years, there was little trouble other than Raynauds and some muscle aches. This disease tends to effect everyone differently, so it is very hard to try and predict your future as far as pain and activities go. However, you can plan on a future of trying many different drugs and therapies, since we all are effected so differently. Be careful with anti-inflammatory steroids (Prednisone, and a few others). They can make you feel great - but can have serious side effects.

 

Good Luck,

 

Craig

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