Feels like a death sentence or shouldn't it ?

[waermebaer]

Dear Scleroderma warriors,

thank you to everyone that responded by one way or the other to my post from approx. 3 weeks back. Much appreciated !

Being new to this illness, it really does feel at the moment like a "death sentence" to me (looking at the significantly worse prognosis that we men face compared to women also does not help). Did you also face this in your "early days" with Scleroderma ? If yes, how did you overcome this ?

All the best from very cold Germany,

Waermebaer

[Wanderinglost22]

What's your first symptoms band how long did it go on for? I'm early in this I think but I havn't found a way of dealing with thinking about it yet

[Kilncadzow]

I’ve told my story to several people on this website and I’m happy to tell it to you if it helps. I was diagnosed with scleroderma around 1976 aged 30 - I had swollen rigid limbs, difficulty in eating, Raynauds, tight expressionless face, could hardly lift my arms above my head etc etc. I’m now 74 and in better health than most of my friends. I have bent rigid fingers on my right hand but have learned to cope with that, occasional acid reflux problems and occasional Raynaud symptoms but other than that I enjoy life to the full. Don’t give up hope!

[boome]

My dear, I felt the same when I was diagnosed in 2013! I even wrote a letter to my child, feared I would die soon. Well, I am still here and I live a normal life. Yes, it is a hard condition, yes you will have to make compromises and some days will be worst than others. But you will make it. Here is some piece of advice:1. Find a good therapist and talk it out. I felt alone and desperate at first. Also I was healthy and only 33 when diagnosed and could not accept my “bad luck”. This gave me a nice depression, so do yourself a favor and start working on it with a professional.

2. Organize a support net; talk to people you love and trust (family/friends) and explain that you might need help (emotional or actual)

3. Find good doctors. Good means that you trust them scientifically, but also that they will be there for you. You may need to consult more than one or try a few to choose

4. Treat yourself better than before. Take care of you, eat better, do things you like, give yourself praise

And don’t forget: we are here to listen and help if we can. All will be ok, I am sure

[trunchalobesity]

Please believe a positive mental attitude really helps. I was really in decline 20 years ago, now I’m reasonably fit and healthy. I took charge and believed I would be ok Funyun children xGood luck and love

Don’t despair

[Fishie1]

I know how difficult this must be for you. I remember feeling the same at the beginning and I am very lucky as only mild symptoms. I think time helps, as it takes time to come to terms with your diagnosis.

I can remember being consumed with negative thoughts and then one day there was a change in my thinking. I realised that I cannot control the future, what will be will be. As long as I do all I can to keep myself as fit and healthy as possible then I can do no more. I felt I was spending to much time thinking about what ifs.

It helps if you have a good rheumatologist who can reassure you.

I have found my biggest problem is worrying as this definitely takes its toll.

I'm so sorry you are struggling with this but I totally understand. I hope you can get in touch with other males who have as positive a story as possible to share with you.

Take care.

[GGhere]

Hello WaermebaerSo sorry to hear you are feeling despondent. It gets you like that in the beginning and it seems like like there's no way forward. I believe it helps if we confront this awful disease and make up our minds that it's not going to win. I put the bad days out of my mind and try to enjoy the better days. I've been ticking along with it and I'm now in my 81st year. I still have to attend a lot of medical appointments but I think I'm lucky the NHS is there to help me. However, you are much young than me so I understand your feeling of hopelessness. Don't let it beat you - look after yourself, I see there's some good advice from all the other people here. Wishing you well. Betty

[Sanmateogirl107]

keep looking for answers and never give up, book scleroderma the proven cure that can save your life on ebay get it i ordered it. julie

[waermebaer in reply to Sanmateogirl107]

Thank you for your comment, Julie- The book you are recommending is "Scleroderma: The Proven Therapy that Can Save Your Life" from 2003 - right ? I heard from friends that this is a completly unfounded and scientifically unproven therapeutic approach. What makes you think this works ? Waermebaer

[Sanmateogirl107 in reply to waermebaer]

i am not saying it will work i am trying to learn more about scleroderma so i can educate my self and maybe find something that will work when meds make me sick. i love learning i am going to read it see what it says. i did find a great pain reliever wild lettuce extract julie

[trunchalobesity in reply to waermebaer]

It is best to listen and learn from reliable scleroderma specialists. Here in the UK these are rheumatologist at specialist hospitals. They work with colleagues who also have in-depth knowledge of the disease, such as lung consultants st The Royal Free London. Professor Chris Denton at The Royal Free is widely recognised as the lead specialist in the UK. He does a question and answer section in the SRUK magazine that comes out. Some of the best advice I was given by a rheumatologist before I was referred to London was ‘you need aggressive treatment by specialists urgently, you don’t have time for alternative medicine.’ I had 3 children under 3, and had progressive lung disease. I’d been told I might only have 3 years but 20 years later, having taken all my meds as instructed, eaten healthily, kept fit, attended every appointment and been my own advocate I am still here, reasonably fit and healthy having benefited from advancements in medicine and new treatments.

Please don’t give up hope x

[waermebaer in reply to trunchalobesity]

Thank you for your reply. It is great to hear that you are reasonably well & fit ! I have heard a lot of good things about Prof. Denton and his team at the Royal Free Hospital in London - unfortunately I am from Germany. What medication stopped your progessive lung desease (ILD I assume) ?

[trunchalobesity in reply to waermebaer]

My first treatment was a course of methotrexate orally but it had no effect and I continued to deteriorate so that’s when I was referred by my rheumatologist to London. There I had a barrage of tests and a lung biopsy.

I had two separate 6 month courses of cyclophosamide by infusion, once a month.

Prior to this I had already been put on steroids.

I tried various drugs some I couldn’t tolerate like Aziphiaprene ( which my liver couldn’t tolerate I also had a liver biopsy).

The real game changer for me was mycophenolate, I took it as soon as it became Available at the maximum dose. It’s not only arrested my ILD but reversed it.

I’ve always taken medicine as it’s become available but not taken part in drug trials on Drs advice in case of placebo. I have done other trials like skin, reflux etc that haven’t interfered with my treatment.

Modern medicine is advancing, kidneys used to be our biggest killer but kidney medicine advanced so that’s no longer the case.

Stay positive