New diagnosis - scleroderma/systemic sclerosis

Lisa1967

Hi everyone, I received a diagnosis end of Jan after almost a year of not knowing what was going on with my body. Since then I've been very overwhelmed trying to absorb all the information and dealing with side effects of medication (and waiting for them to work). I went down with a cold last week after not having one for over 2 years and it's really hit me hard - is this normal if you have an autoimmune disease? Can symptoms of a cold feel worse and last longer? Covid tests are negative by the way. Sorry for trivial question but on top of everything else, I feel like I've been hit by a bus!

Ellen

Hi @Lisa1967 Welcome to the Online Community.

I see you have been diagnosed with Systemic Sclerosis. I can imagine you have been overwhelmed since that time. Most of us struggle when we are initially diagnosed. There is a lot to take in and our future can feel very uncertain.

This is an excellent place to continue to learn as well as to seek and give support from and to others who really understand.

You don't say which medications you have been put on, but I am wondering whether it is a Disease Modifying Anti Rheumatic drug?

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

I am querying these as our members do sometimes report infections such as colds lingering.

Can is suggest you perhaps contact your medical team; Dr for example although rheumatology nurses are often the easiest to get hold of as are pharmacists to ask for some advice?

I am very pleased to hear you are testing negative for COVID.

Just in case you haven't read this:

https://www.versusarthritis.org/about-arthritis/conditions/systemic-sclerosis-scleroderma/

there is a good story by someone who has your condition.

Best wishes

Ellen.