New girl in the town

[Poenyfan]

Hi,

Finally diagnosed with scleroderma, Reynaud symptoms though since 10 years.

Come from Hungary; live and work in Germany (sorry for my English), single shocked an scared. My doctor probably more than I am.

Want to learn from you on how to survive, or at least to cope with it.

Thanks for your support in advance!!!

[mad4cavs]

Help and welcome i have diffuse sclerodera and raynauds I've had this for 4 years triggered by breast cancer,I had chemotherapy that exacerbated the scleroderma, y consultant says i look like I've had it for 20years ,every day is different and it's best to live from day to day some better than others,try to keep warm o avoid going out when it's very cold and wrap up well if needed o take great care of my skin moisturizer is a must, there are many groups on Facebook that I've joined that offer great support to where there's always someone ready to help.and vent to who understand s you

[positivedaybyday]

Hi,

I have diffuse cutaneous scleroderma and secondary raynauds too. Make sure you have a Rheumatologist who specialises in this condition. There are a lot of very good ones. Everyone reacts differently that's why it's such a difficult disease.

Mine was triggered by two bouts of flu in late 2016. I'm ANA positive which means I'm at risk of auto immune diseases.

You will have lots of tests at hospital & this is essential to determine what stage you are at.

Your Rheumatologist will help you & this site is good if you are worried. You will be given lots of information at hospital, it is scary but help is there if you need any questions answered.

If there is a talk at a hospital near you on scleroderma that helps not only you but your family too to understand. Ask your Rheumatologist.

Take each day as it comes, you will learn to live with it. The main thing to do is stay positive, it's a powerful weapon. It's OK to cry, let your emotions out. It's a hard road but you are among friends on this site who will support you. Xx

[svanseghe57]

you must tell us what problems you have.This condition is one and only. it has one name...scleroderma....... but the issues a sufferer faces are multiple.Keep well and stay in touch.

[Sanmateogirl107]

ok immune specialist, pain doctor, rheumatologist, probiotics get tumerick and pepper to activate it. put it in salads it helps to knock down auto immune disease, stay warm during cold weather wear gloves. eat well nourish your body, dietician. support group help alot. get your family involved for support also. have scans done of your lungs, heart, pelvis to rule out cancer. naps are great yoy will get tired a lot. journal about how you feel. fish oil, nuts, biotin for your hair, pt, for your hands ask your doctor now for a referal. hope that helps. amlodipine and other meds for raynaud's get another opinion ok hugs for a better day julie

[redtree]

Hello and welcome to this group. You will need to find out from your doctor whether you have limited or diffuse scleroderma. You should also have tests of your lungs(breathing tests and X-ray or CT scan), your heart(echocardiogram) and possibly your muscles (MRI). If you have any digestive problems you may need to be seen by a gastroenterologist. When the tests have been done, the rheumatologist will be able to devise the best treatment plan. You are likely to be put on a number of medications to treat the various symptoms. Some medication takes a few weeks or even months to work. The good thing to remember is that with the correct medication you can live a nearly normal life. This site and the SRUK website have got lots of a information which will help you and prepare you for visits to the doctors.

Best wishes

Red tree

[Poenyfan in reply to redtree]

Hello Redtree,

many thanks indeed for news! diffuse / limited Sc can you only differ by checking status lungs, heart, kidney etc.? or this is also done via blood test, or other? I am having next these…

I assume there is a great difference if limited or diffuse in quality of life… (or?), still it is very comforting what you say about possible treatments and medication. May I ask you what you have?

I am reading diligently your Posts and indded the best & most informative site that I could find yet is this and the SRUK.

All the best!

[redtree]

Hi, I think the diagnosis of limited or diffuse is made by a combination of blood tests and physical symptoms. Diffuse is more aggressive in the early stages so it is even more important to get early treatment.

I have limited with Raynauds and lung fibrosis, was diagnosed in 2013 aged 61, and have been stable on a combination of prednisolone,

azathioprine, sildenafil, lansoprazole

For you the main thing will be to get an appointment with a specialist rheumatologist as soon as possible so your treatment can start and read up the information on sruk.co.org

Best wishes

Redtree

[Poenyfan]

Hi / szia Mballa,

So as mentioned come from Hungary; though since 7 years in Germany- also diagnosed with scleroderma in Germany. (I have Raynaud symptoms since 2007, though it was overlooked by my GP...) Right now I am way back to Hungary, visiting families. Where i again will try to hide the truth :-/.

Where do you live; what do you do, how is life treating you? Hope you are all well - with that also maybe giving me a little hope