Update to my post re Scleroderma

[Songbird6]

Just an update to my earlier post, approximately a month ago, I have now received my blood test results which show nothing alarming or different so while I am very relieved by this, I am still concerned.My GP has not contacted me regarding the results, yet, as nothing seems significant about them. I do think that I am showing symptoms of Sjorgens and have put this to him a year ago, he didn't dismiss it but was let's say, sceptical in his views about it. My symptoms are skin rashes that itch, are raised, red and only in certain areas, that then give joint pain, also mouth ulcers that come and go, dry, sore eyes, nose, lips and mouth. Tiredness/ fatigue and swollen glands below my left ear and jaw.

I just wonder how bad the symptoms have to get before they are taken seriously.

Today my Raynauds attack was quite out of the blue, I was only in the kitchen chopping veg and today's temperature has been positively balmy in comparison to what it has been, on other days I've been outside in below minus conditions, well wrapped up and not been affected at all. Bizarre but frustrating. 😔 Happy New Year 🙂

[OldTed60]

It is difficult when immunology bloodwork doesn’t support what we feel is going on when generally unwell with fairly non specific symptoms. I have seronegative Sjogren’s with seropositive Systemic Sclerosis but was previously misdiagnosed with RA. RA was taken seriously whereas Sjogren’s and Raynaud’s were shrugged off as secondaries of little concern. Several rheumatologists told me to try to keep my diagnosis of RA because I’d access treatments where I wouldn’t if my main disease was Sjogren’s. I’d already tried and had an allergic reaction to Hydroxichloraquine. It was only when my scleroderma antibody showed up that a Sjogren’s specialist diagnosed it and requested I try Mycophenolate- which has worked very well for me.

Your mention of mouth ulcers and negative bloodwork makes me wonder about Behçets - which I believe causes similar symptoms to Sjogren’s but is seronegative and hallmark is mouth and genital ulcers. In your situation I think I’d want a lip biopsy - which I had and was definitive - and possibly a biopsy of your ulcers if you can face this. But whether or not a sceptical rheumatologist will request these is another matter. Well worth asking though as there are effective treatments for both diseases if you can find a good rheumatologist. The Raynauds attack is just typical. I think it’s because our bodies are unprepared for damper colder weather after periods of anticipating being cold. Stress doesn’t help. Best of luck xx

[Clangerscat]

Hi songbird, happy new year to you to. When I was eventually diagnosed with scleroderma it was by sheer fluke. I was having a gastroscopy to try and sort out stomach issues and seen by a consultant whose husband had a special interest in scleroderma. She recognised what was happening with my hands, which were getting slightly clawed and sent me for some very specific blood tests as well as referring me to a scleroderma specialist. I was very lucky but feel I would have still been struggling now if it wasn’t for her. My GP’s reaction to this was “ well I guess someone has to have it” although I have to say he is now completely on board and very helpful. GP’s just aren’t looking for these rare diseases but keep pestering yours and hopefully you will start getting the help you need soon. Good luck.

[DutchDreams16]

Have you had any blood tests specifically looking for antibodies? Certain antibodies will support diagnosis of an auto immune disease.Have you been referred to a rheumatologist or are you solely dealing with a GP? I would push for a rheumatology referral.

Chopping veg sets off my reynauds too, especially if the veg has been in the fridge. Even the handle of a knife can be cold enough to trigger an attack.

[George369]

Hi Songbird6,As i have just replied in another post, i was missdiagnosed for two years because my blood reports were always normal and also negative for antibodies. Yet i had all the symptoms, hand clawing, ulcers, skin tightining, Raynaud and myositis.

While ignoring the real disease, things were just getting worse gradually and eventually one fine day my kidneys just gave out and i was admitted to emergency ward in a life-threatning situation,with blood pressure at 220. I was then finally diagnosed with Aggressive Scleroderma with Renal Crisis.

So my advice is please do not wait for the symptoms to get more serious, please do try to find an experienced Rheumatologist as soon as possible and don't just rely on blood reports. Take care always !!

[Songbird6 in reply to George369]

Thank you for your message