Jump to content


Newsflash: "Small Changes and Hopes for Preventing Dementia." See News subforum for details. Then chill out in the Fun and Friendship forum.

Photo

Another Scleroderma case


  • Please log in to reply
17 replies to this topic

#1 werewolf

werewolf

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 03 January 2012 - 11:23 PM

Hi, my name is Steve from NSW.

So glad to find an Oz forum!

I'm 48 and have been healthy all my life - no broken bones, stitches or other serious medical issues. Never smoked or abused drugs/alcohol etc.

My story begins in March 2011, when I developed symptoms of Carpal Tunnel Syndrome in both wrists. Wore splints every night for 3 months until I saw a specialist who recommended endoscopic surgery, which I underwent in August last year. Surgery seemed to do the trick as the night numbness vanished, although my hands still appeared slightly swollen at times. A few weeks or so later I began noticing a shortness of breath when walking uphill, and I began to feel the cold more than I usually do. I was also unusually tired in the afternoons. Went to my general practitioner for a check up and all was going well until he heard crackling in my lungs, so he ordered a chest Xray and several bloodtests. The Xray proved negative, however the bloodtests showed raised levels in my ANAs. So it was off for a CT scan to look further, and sure enough small sections of 'ground glass haze' were found in my lungs.

So it was off to a lung specialist who ordered lung function test and more blood tests, and also referred me to a Rheumatologist. In the meantime I'd developed numbness in part of the right side of my face, which soon spread to parts of the left side.

The Lung specialist and Rheumatologist both suspected Scleroderma immediately, and yet more tests were organised, including an MRI on the brain and bone density scans. Thankfully the MRI ruled out a brain tumour causing the face numbness (they suspect the facial nerve sheaths are inflamed).

I'm now on Prednisone daily (10mg), and Methotrexate weekly (20mg), as well as Lyrica and Endep for facial problem. The face numbness has not improved as yet, but generally I feel ok with no drug side effects as yet. I have noticed my hands turning slightly blue when I venture into cold water at the beach or pool - which freaks me out!

I can imagine a long road ahead and a lifetime of medication, but as the doctors have said I'm still reasonably young & otherwise healthy, and they have caught the disorder in it's early stages.

In the meantime it's more tests to keep an eye on progression, and blood tests every fortnight to monitor the Metho effects.

I'm detemined to beat this thing as I have a full life to lead, a great wife to share it with, and a cheeky 7yo to watch grow up!

Thanks for listening!

Steve

#2 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Melbourne Australia

Posted 03 January 2012 - 11:51 PM

Hi Steve,

Firstly I am so pleased that you found our sub forum and decided to post!

Yes, you were lucky to be diagnosed early, though it seemed to take some time from when you had the carpel tunnel operation. I know of a lady who was being prepared for a carpel tunnel op. when the nurse said "How long have you had scleroderrma?". Sometimes these nurses perhaps see more all round conditions.

Your attitude is great. I guess you have already been through the ups and downs which are very common when first diagnosed. Your attitude, and the help of your family will certainly make a difference.

Please keep those hands warm Steve, prevention is far better than cure. There is information here on Raynaud's

Scleroderma Australia have a book called Understanding and Managing Scleroderma together with leaflets on Dental Care, Eating Well, Hospital Check List, Travelling with Scleroderma to name but a few. Joining an organisation is not for everyone but it may help. Scleroderma New South Wales are not having a Seminar this year but propose to have one in 2012. Will keep this forum posted on all activities.

If you would like the information I have mentioned please register with www.sclerodermaaustralia.com.au and we will send them via post.

Once again, great to have you on board, although not great that you have scleroderma!

#3 Joelf

Joelf

    Diamond Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,755 posts
  • Location:West Sussex

Posted 04 January 2012 - 07:59 AM

Hi Steve,

Welcome to these friendly and helpful forums!

I'm sorry to hear that you've been recently diagnosed with Scleroderma. Your progress sounds very like mine as I too developed Bi-lateral Carpal Tunnel Syndrome, suffered with swollen, painful fingers and noticed increasing shortage of breath when exerting myself (like you, I was physically very fit at the time.) Thankfully, I was also diagnosed and started on my treatment very quickly for which I'm eternally grateful. I had 6 monthly intravenous infusions with Cyclophosphamide, which in my case was very successful and improved my lung function and again like you I'm taking Prednisolone and a similar immune suppressant (Azathioprine) which seems to have stablised everything satisfactorily. I've included a link for you to Lung involvement which I hope you'll find interesting and informative.

Certainly your positive attitude will help you deal with this disease; I'm very pleased that you've found our forums and look forward to reading more of your posts.

Kind regards.

Jo Frowde
ISN Sclero Forums Manager
ISN News Manager

ISN Chat Host
International Scleroderma Network (ISN)


#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,777 posts
  • Location:U.K.

Posted 04 January 2012 - 01:57 PM

Hello Steve

Welcome to the forums! As unwanted a diagnosis as scleroderma is getting an early diagnosis is a real bonus from a treatment and slowing progression point of view. Some people take years to achieve diagnosis and all the while scleroderma is wreaking havoc.

Your attitude towards having a chronic illness invade your life is a good one and will serve you well.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Assistant Manager
ISN Video Presentations Manager
ISN Email Support Specialist
ISN Blogger
ISN Sclero Forums Support Specialist for UK Scleroderma

International Scleroderma Network (ISN)

#5 werewolf

werewolf

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 05 January 2012 - 12:31 AM

Thanks for the warm welcome folks! Those links are much appreciated too, lots of reading to get through. I'm actually dreading winter this year - mild though it is compared to those in the northern hemisphere.

The face numbness is the only thing bothering me at present. It's tolerable most days but sometimes I can feel the nerves tingling in my gums & teeth. I see my Rheumatologist early next month and hopefully he'll have other options to deal with it.

Take care all,

Steve

#6 Joelf

Joelf

    Diamond Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,755 posts
  • Location:West Sussex

Posted 05 January 2012 - 12:48 AM

Hi Steve,

Just to give you a little more light reading I've found a thread on Tingling in the face, etc. which I hope you'll find interesting.

I do hope your rheumatologist can suggest something to improve your symptoms when you have your next appointment.

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
ISN News Manager

ISN Chat Host
International Scleroderma Network (ISN)


#7 stillriding

stillriding

    Bronze Member

  • Members
  • PipPip
  • 25 posts
  • Location:Sydney Australia

Posted 17 January 2012 - 03:47 AM

Hi Steve,
Sorry to hear of your diagnosis. I thought I would say hi as I also started my journey similar to yours. I also live in NSW-Sydney and think our weather is probably okay for this odd disease. Mind you I have removed skiing from my favourite sport list!
After I had my carpal tunnel operations my hands just never returned to 'normal'. They remained puffy and looked a bit odd. I was also very fit at the time. I am 36 and a mother of 2 young children. My recent diagnosis was not Chronic Fatigue but Sclero/Auto Immune Hepatitis/Polymyositis.
After coming out of the fog of high dose prednisone for 6 months (still reducing) I have realised that I have been given another chance at life. I enjoy my time with the children - playing and running after them has become a gift rather than a chore. I have created personal 'spare time' with the help of my network. I now spend my 'spare' time meditating, practicing yoga and reading books.
I am on weekly methotextrate injections which so far has had few side effects - I think I will take almost anything to get me off prednisone. Anyway, that's me,
Take care
Simone

#8 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Melbourne Australia

Posted 17 January 2012 - 07:24 PM

Hi Simone,
Thanks for joining in with Steve's post.

Seems you have had a rough time, but coming out the other end.

Well done on your positive attitude Simone.

#9 werewolf

werewolf

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 20 January 2012 - 05:55 PM

Hi Simone, nice to have a fellow NSW person on here! Sounds like you're on the right track. I see my doctors next month and I'm hoping they don't increase my Prednisone intake! Also hoping to get off the very expensive Lyrica which is not working at all on my face numbness. I'm booked in to see a Neurologist in Feb and I'm hoping they might suggest alternative medication for the face problem.

Apparently there is a specialised Scleroderma clinic is Sydney - have you heard of this?

Luckily I'm still not experiencing any adverse side effects from the various medications, and apart from a mild chest infection which the whole family has, all is going well here.

Steve

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,191 posts
  • Location:Minnesota

Posted 01 February 2012 - 08:40 PM

Hi Steve,

I'd like to welcome you to Sclero Forums, as well. I'm very glad you found us!

Have you and your family recovered from the chest infection by now?

:emoticons-group-hug:
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.

#11 Jaggers

Jaggers

    Bronze Member

  • Members
  • PipPip
  • 16 posts

Posted 05 February 2012 - 02:25 PM

Hi Steve and welcome to the forum.

Born and bred in Sydney, moved to Tasmania 6 years ago; I've had Raynard's ever since I was kid (makes the fingers,toes and lips go a lovely shade of blue). Around 4 years ago I was diagnosed with Scleroderma; I was lucky my general practitioner sent me to a lung specialist who is studying this disease and as soon as I walked in he asked how long I had it as my face showed signs of it. For me the effective drug that works on me is chemo; first time treatment went for 22 months then next went for 9 months and was only stopped because I had a reaction to the last treatment so they tried Iloprost which had to be stopped 3 hours into the treatment and I can say I will never have that again. I've told them I would rather have the chemo again and I'm back on it for the last 3 months and have to have a high dose of steroids before they begin the treatment.

#12 stillriding

stillriding

    Bronze Member

  • Members
  • PipPip
  • 25 posts
  • Location:Sydney Australia

Posted 13 February 2012 - 04:21 AM

Hi Steve
I was wondering if you made contact with the Scleroderma clinic in Sydney? I'm off to see my Liver doctor next week, but haven't yet made contact with Sclero experts.

Also how are you going?

Cheers
Simone

BTW Jaggers I loooove Tasmania. It is beautiful.

#13 werewolf

werewolf

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 21 February 2012 - 06:40 PM

Hi folks,

Seems things have stabilised for now! Rheumatologist very pleased with my progress. Still on the Methotrexate but the Prednisone has been reduced to 7.5mg. Blood tests now bi-monthly rather than fortnighly. Lung function tests were same as 2 months ago while my follow up CT scan actually showed a slight improvement!! Off to the Neurologist today to see about my face numbness, sort this out and I'll be flying!

So all good at this stage and let's hope it stays this way.

Simone - my Rheumatologist will only refer me to the Sydney clinic if my lungs deteriorate.

Steve

#14 Joelf

Joelf

    Diamond Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,755 posts
  • Location:West Sussex

Posted 22 February 2012 - 01:41 AM

Hi Steve,

What excellent news about the improvement to your lungs; I'm so pleased for you!! :emoticon-congratulations:

I do hope that things continue to stablise for you and that your facial numbness can also be improved. :emoticons-yes:

Best wishes,

Jo Frowde
ISN Sclero Forums Manager
ISN News Manager

ISN Chat Host
International Scleroderma Network (ISN)


#15 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,777 posts
  • Location:U.K.

Posted 22 February 2012 - 10:02 AM

Hello Steve

Excellent news about your lung function, any headway on the facial numbness?

Take care.
Amanda Thorpe
ISN Sclero Forums Assistant Manager
ISN Video Presentations Manager
ISN Email Support Specialist
ISN Blogger
ISN Sclero Forums Support Specialist for UK Scleroderma

International Scleroderma Network (ISN)

#16 werewolf

werewolf

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 22 February 2012 - 11:47 PM

According to my neurologist I have 'trigeminal neuropathy', which is very different to trigeminal neuralgia. Apparently about 4% of scleroderma patients suffer from this, so it's quite rare.Unfortunately most of the medications used to treat trigeminal neuropathy are not compatible with Methotrexate, so I'm back on larger doses of Endep (amitriptyline) to see if that helps. Ibuprofen takes the edge off the pinching pain, and I've been asked to also try aspirin and a combination of parecetamol and pain medication.

With time Metotrexate may make it vanish, but time will tell I guess! I hope it goes away soon as it is very uncomfortable.

Steve

#17 Joelf

Joelf

    Diamond Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,755 posts
  • Location:West Sussex

Posted 23 February 2012 - 11:41 AM

Hi Steve,

I also hope your trigeminal neuropathy goes away very soon, as it does sound very unpleasant!

Hopefully the combination of medicines prescribed for you will have the desired effect.

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
ISN News Manager

ISN Chat Host
International Scleroderma Network (ISN)


#18 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Administrators
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,777 posts
  • Location:U.K.

Posted 23 February 2012 - 03:34 PM

Hello Steve

What about trying a different immunosuppressant like mycophenolate? About 4% of people with scleroderma suffer with trigeminal neuralgia as opposed to trigeminal neurophathy. Trigeminal neuropathy is described as one of the most painful conditions in the world according to Wikipedia! Like I said how about changing your immunosuppressant so you can take the medications that treat trigeminal neuropathy?

Take care and I am so sorry you have this awful, painful condition.

PS I am not suggesting that trigeminal neuralgia is a walk in the park! It's also know for the pain it causes.
Amanda Thorpe
ISN Sclero Forums Assistant Manager
ISN Video Presentations Manager
ISN Email Support Specialist
ISN Blogger
ISN Sclero Forums Support Specialist for UK Scleroderma

International Scleroderma Network (ISN)