Help needed please

[Shorty100]

Anyone know if I should be on any medication as I have Systemic Scleroderma and Parenchymal Pulmonary Pathology? Don't seem to be getting anywhere as specialist I am under never calls back. My GP said they can't prescribe as it has to come from my specialist. Thanks in advance

[positivedaybyday]

Hi Shorty100,

Sorry to hear of your problems. I can't imagine having Systemic Sclerosis without medication! I can't comment on your other health issue, sorry.

I have read on this site some people with SS haven't had medication for years but I do feel this is very rare.

I know when I first visited my doctor he started off by prescribing low pain killers & finally moved me up the scale to Tramadol. It was my Rheumatology Specialist i n SS who placed me on a pain management plan when in hospital three weeks later. I was then on very heavy medication including morphine as I have Acute Diffuse Systemic Sclerosis & mine was rapidly advancing.

Are you recently diagnosed? You really need to see a specialist in SS.

It has been terribly difficult during the pandemic to make any headway if you've been unfortunate to have the diagnosis in this period.

I was given a special telephone number for a sister who worked in the team if I had any problems. I could always leave a message & she always called me back.

Also I found the secretary to my Specialist very helpful for appointment issues.

If you're having pain & movement issues you really need help. Keep badgering your Dr to at least give you something to take the edge off & continue to try & make contact with someone at the hospital who can help.

It can be very frustrating at times but you need to keep pushing to take charge of the situation.

I hope you're able to get some relief quickly as I really feel for you if you're in a lot of pain.

Be strong & keep fighting. Xxc

[Shorty100 in reply to positivedaybyday]

Thanks so much for replying. I’m on a fair amount of meds for a lot of neurological problems such as cervical myopathy, spondylitis, etc. I have found Fentanyl patch to take edge off pain. You are100% correct as my SS sister at the clinic and the secretary reported specialist to management as she never rang me when appointments booked. She was supposed to arrange scans, heart and lung tests last July but her secretary said all results are back from last week and she needs to speak to me this morning. Just spoke to my own GP after reading your reply and she said definitely need meds especially as I work with over 500 and I must tell her that I should be in vulnerable list too. Honestly thank you so much x

[Redwine53]

I have been on mycophenolate since I was diagnosed with SS ( as well as lupus and myositis) which is an autoimmune immune drug three years ago. My rheumatologist says that hopefully we have caught everything in time! Also steroids and hydroxychloquine!

[Shorty100 in reply to Redwine53]

Thank you. I think I have the short straw as just spoken to her, tests show 2 leaking heart valves and lung nodule and she said I do not need any medication!! All she said was if I get Covid there is a new trial drug they can give me to help. I am being referred to a lung and heart specialist next. I did ask last year to see another SS specialist but she's the only one at the hospital. Will just keep everything crossed - even my eyes. Thanks so much for your reply

[bertie203 in reply to Shorty100]

I'm also on mycophenolate - but my rheumatologist specifically prescribed it because of lung issues (ILD i.e. fibrosis/scarring). Other than that I wasn't given any medications after the initial diagnosis - I did end up on Nifedipine and Pantoprazol later on because of the associated Raynauds and digestive issues.

So I personally wouldn't be concerned about the lack of medications right now - being referred to heart and lung specialists is probably the most important thing right now, because they'll be able to figure out if any lung or heart related medications are needed. In fact, the mycophenolate was prescribed only after my rheumatologist had liased with the lung specialist.

[Shorty100 in reply to bertie203]

I can’t thank you enough. You have really put my mind at ease now. I’m on Nifedipine and Omeprazole for same issues. My son actually has a leaking heart valve so could well be hereditary somewhere down the line. Thank you all so much