Diffuse Scleroderma

[Scunny1]

Symptoms started Sept 2022. Diagnosed Scleroderma Dec 22.

I have now being diagnosed with diffuse Scleroderma and I have been taking Hydroxychloriquine for 7 weeks and have noticed a marked improvement. I went private to see a Rheumatologist for a diagnoses and have now been referred back to NHS for yearly checks. I am still waiting to hear back from the NHS. Should I be having the tests now so any changes can be found at the next test or should I wait a year? I have had my eyes tested and all ok. I am just concerned at the speed any change could occur. Any advice would be welcomed.

[amc282]

I am not sure what waiting times are in your area. I also had to push for a private referral to see a rheumy and then waited at least 6 months before I could even be seen by the NHS rheumy. It was a bit of a fiasco. I have limited systemic sclerosis ANA 1.86 with Centromere and I receive an annual Echocardiogram and an annual Pulmonary Function Test. You will likely be referred for further annual testing in some areas. It will depend on your blood work from diagnosis. There are various ANA numbers and patterns. inspire.com also has a great systemic sclerosis group with some pretty knowledgeable members. Best wishes to you.

[billybob60]

My GP suspects that I have scleroderma and referred me to see a rheumatologist. The referall was in January. I had heard nothing from the hospital, except for a letter saying that they had received my referral, so I phoned them earlier this month to ask how long the waiting list is. I was very polite and said that I understand the pressures that the NHS are under. They then gave me an appointment for 4th April.

I woud have thought that you should get an initial appointment with the NHS so it might be worth giving them a ring. I was considering going private if the waiting list was lengthy.

[Redwine53]

I was diagnosed nearly 4 years ago ( when I was 66) with systemic scelerderma on the NHS which was a different place then pre Covid. I also have myositis and lupus. I had a lot of baseline tests ( haven’t had any since unfortunately) - ct scan, mri on my legs, echocardiogram, lung function test, bone scan ( as on steroids) and an EMG test.

It’s such a strange disease to live with as no one knows where it will go. I also have 3 monthly blood tests as I am on mycophenolate which is an autoimmune suppressant so the nhs might want to review your drugs. I am also on hydroxychloquine too! I certainly rattle more than I did !

Good luck with everything.

[Scunny1 in reply to Redwine53]

Thanks for your reply Redwine53. I have had a couple of followups with the private specialist to confirm my diagnosis. It was them that did the blood tests.It was all a bit of a whirlwind and to be honest Mr Google didn't help. Could I ask how you have been since your initial diagnosis and any flags I should be aware of? I am assuming as I will be on yearly tests and with the Hydroxycloriquine it will be a slow progression ?

[Redwine53 in reply to Scunny1]

hi Scunny1 this is quite a difficult question to answer for me everyone is so different and with having three chronic diseases I am never quite sure when I have a flare or what belongs to what disease. I think mine is progressing slowly and for quite a long time nothing seemed to get worse, the consultant’s words ring in my ears “ I hope we have caught it in time”. I read somewhere that the first five years are important in things progressing, so hopefully my slow progression stays that way.

I have noticed that my forehead lines are disappearing so I have started frowning and raising my eyebrows and trying facial yoga that was mentioned in a previous post. I have always done my mouth and hand excercises, nearly everyday, so I hope they are helping. Sometimes the skin on my hand is red and sore, and then I remember the hand cream.

Don’t know what is happening inside me, though I am now on blood pressure pills and take my blood pressure fairly regularly as we can go quickly into renal crisis. I try not to panic or get too anxious which can be difficult as I live alone and my husband was diagnosed as being terminally I’ll just five months after my diagnosis. So trying to be in a good place is important. I love travelling and so keeping going while I can. Just back from visiting my daughter in Zimbabwe, and more holidays planned, where I can take it easy when I get tired.

I seem to have rambled on, don’t know if I have helped.

[Scunny1 in reply to Redwine53]

Thanks very much I wish you well and enjoy travelling.

[Fishie1]

I was diagnosed many years ago. I used a private healthcare insurance that we had at that time to get diagnosed. After that the insurers didn't want to know as the yearly lung function and heart test were ' maintainance '. They explained that as there was no cure they couldn't help.

I have been seen by NHS since.

Good luck!

[Scunny1 in reply to Fishie1]

Could I ask what type you have? Are you keeping well?

[johncot]

I have annual lung function test and echocardiogram but I also have 3 monthly phone consultation with my consultant and 3 monthly blood tests.I also have annual bisophonate effusion as I have severe calcium deficiency which I think is linked to the scleroderma

[Sashmo_L]

My first symptoms started in Sept 22 and I went privately and received a diffuse systemic sclerosis diagnosis in Jan 23. I have been referred back to the NHS and was given an appointment within a month. My diagnosis has slightly changed in that it’s limited not diffuse (although apparently that too can change). My new rheumatologist is incredibly knowledgeable about this and I have had a host of tests with more to come. From what I understand it’s important to have these tests now so they have a clear picture of any or no internal involvement. Had there been a long wait on the NHS I was prepared to have the tests done privately as I just want to sleep at night knowing all the bases are covered. Where do you live?

[Scunny1 in reply to Sashmo_L]

Kent

[marbelina]

Hello Scunny1.I was diagnosed with limited ssc November 2019 and had a whole host of scans and tests, I would presume as a baseline. The pandemic hit and I had a telephone consultation mid 2020 where I was prescribed hydroxychloroquine, this helped reduce general aches and pains. I have managed to get another telephone appointment a couple of months ago (I had to call a couple of times) which has resulted in re scans etc with a face to face appointment when all the readings have been received. I too was initially very alarmed at how the disease would progress, especially throughout the pandemic with NHS radio silence. However, I feel much calmer as it doesn't seem to be raging away. Be aware of your body and don't be afraid to shout up if you notice changes. The nursing staff at my rheumatology clinic are very helpful with queries, as is this site. I take comfort from the comment by redwine that the first five years of progress after diagnosis are an indicator. Good luck.... And for your own sanity stay away from Dr Google.