Hi my partner has scleroderma,,he has lung problems,,finds it hard to swallow sometimes,, don't know much about it treatments,, medication

[Tullos12]

We live in aberdeen and there's not much doctors know about this condition.

[smiler2012]

HiTullos 12

Has your partner seen a rheumatologist?I googled it and there are some at Aberdeen Infirmary.One of them lists interest in scleroderma.It is vital your partner gets the correct help and medicatiion.Your partner's GP should be able to refer them.Best wishes x

[Tullos12]

Yes he sees him about twice a year,,but to me I don't think there is enough information, and also think my partner hides a lot of his symptoms.

[smiler2012]

Does he have the usual lung function and echocardiogram on a regular basis.These should show any deterioration and appropriate medication prescribed.Would it be possible to have his appointment brought forward and would he let you go with him?

I always take a list of symptoms which are new to me or worsened since my last appointment.My rheumatologist appreciates this as this illness varies so much from person to person.

Maybe a telephone call to the secretary at the hospital or ask the GP to send a letter.

I really feel for you as like my husband the partner can feel at a loss as how to help.

[Ruth462]

Raynards & Scleroderma Association have a booklet that you can give to the GP.

[Carolanne]

Ask your doctor for a referral to the Royal Free Hospital London. I attend this excellent hospital and they have the best specialists in England. Go to their website. The Royal Free and type in Scleroderma

[judyt in reply to Carolanne]

This is the best suggestion of all. The Royal Free I have been told is the absolute tops. I live on the other side of the world and am very envious of my friends who are able to attend this hospital.

[Carolanne]

You live in Aberdeen - that is not so unattainable. You may be entitles to a disabled Train pass which gives 30% off the price of a ticket. I attend the Royal Free twice a year and do the visit in one day. If you get an appointment ask for the earliest. They start at 2.00pm then you have time to get a return train home. My clinic is always on Thursday

[Tullos12 in reply to Carolanne]

How do I get co saltation with them

[Tullos12 in reply to Carolanne]

I'm not disabled I'm working

[Drew]

Hi! I am from Aberdeen too and have been diagnosed with Raynauds and Scleroderma since 2008. I see 3 consultants and my GP regularly and could not have had more support. Please get in touch if you think I can help u in any way

[Tullos12]

What's consultants name ar they at woman hill how do ye get refers to them

[Drew]

Hi..GP did blood tests then referred me to rheumatology . Dr Youssef there did loads of tests to find out how far the scleroderma had progressed. I then needed to see the respiratory consultant and get treatment for my lungs. The latest tests were with the gastro intestinal consultant to check for further effects on my gut. Out patient apps are held at woolmanhill . Hope this helps

[Tullos12 in reply to Drew]

What kind treatment you get for your lungs do you smoke

[Tullos12]

That's the same consultant as him,,he just got out of hospital yesterday and having severe stomach pain they said his stomach was very inflamed,,but the doctors dont know much about scleroderma so we are still unclear with what will happen next.

[Tullos12]

What medication are you on,,he was on nifedipinel but stopped this as He was getting severe headaches.

[Drew]

Did dr Youssef see him in hospital ?

[Tullos12]

No he never saw him,,trying to phone rheumatology but there's no one there.

[Drew]

I was on nifedipine but this was changed to Amlodipine. This is to open up blood vessels to help with raynauds. I am on loads of other meds for scleroderma . Have u been told what type of scleroderma he has?

[Tullos12 in reply to Drew]

Limited I think

[Drew]

His current probs might not be related to Scleroderma but I would contact your GP. I always feel reassured when I go to mine because anything she is not sure is connected to scleroderma she always checks with the hospital .

[Drew]

There is also a support nurse for scleroderma who can speak things through with you

[lifeforce]

Many swallowing problems are associated with the esophagus being damaged by the scleroderma and causing acid reflux and GERD. He should ask his doctor about a proton pump inhibitor like Nexium that will stop the acid production and helps the swallowing. I have had scleroderma for 14 yrs. and found all this out long ago. Good Luck!!

[Hidden]

Hi have what is thought to be secondary Raynauds along with Rheumatoid Arthritis. I live in Orkney but my rheumatologist is based at Aberdeen Royal Infirmary and as far as I know he covers the full gamut of rheumatic conditions - but I'm not sure if he would know that much about Scleroderma as it is relatively rare I believe? However I recently spoke to a woman who knows a lot about Scleroderma and Raynauds, having had systemic Scleroderma for a long time, and she told me that the nearest expert for this condition is in Dundee. Perhaps your partner could explain to his GP that he would like to see a rheumatologist with a special interest in Scleroderma?

[Tullos12]

Hi thanks for that,, he has been taken back into hospital a scan showed fluid round his heart don't know if it is connected to scleroderma rheumatology are now getting involved at long last,,, so here's hoping we .will get some answers today,