Confused 🤷‍♀️

[Cubbyd]

I was diagnosed with limited cutaneous systemic sclerosis 12 years ago but I’m really confused. I don’t have a problem with raynauds in fact my hands get really hot when outside. I was getting regular tests but the kidney function test was stopped 3 years ago and I have not been given a lung function test for 3 years. I have had heart scans but this has been for other reasons (had an operation and irregular heartbeat). I have never been given any of the medications which others mention for immune suppression. I’m feeling quite worried that I am not being monitored correctly. I’m in Scotland.

[zenabb]

You are right. You are not being monitered. You are the one that has to ask to be followed. Do you have a rheumatologist?

[babyinny]

HI Cubbyd

I am also in Scotland can I ask were you were diagnosed and what your symptoms are ?

I have a positive blood test have been rheumatology .They did xray on my hands and I had a nail capillary test which were clear. I have to go in October for lung function and heart test. If these results are clear they say I will be monitered yearly for 5-7 years. hope your well Kathy

[Cubbyd in reply to babyinny]

I’m so sorry I haven’t replied before now but my mother in law developed severe dementia so was busy caring for her until she sadly passed away. I was diagnosed in Aberdeen by a private rheumatologist then had it confirmed at arbroath with positive anti centromere test and positive nail capillary, then passed onto ninewells for specialist care under Professor Belch (who by the way I have only seen once in 11 years). Her team are great but I do worry that something may be missed. My first symptoms were just feeling like my hands were lead weights and I felt like I was walking barefoot on pebbles all the time. I now have VERY sore hands, no skin tightness yet. I have fatigue and the only way I can describe it is I have flu like symptoms everyday. Strangely though despite all around me having coughs and colds I have only had 1 in the last 10 years and that was when I was taking steroids for suspected polymyalgia.

[babyinny in reply to Cubbyd]

so sorry to hear about your mum in law dementia is dreadful illness I lost my mum to that. I would insist on lung and heart tests I have positive centromere and been told I don't have any clinical symptoms but they will still monitor me . I do have sore hands and feet and also feel as though I have a permanent flu but I suffer from chronic fatigue syndrome .I actually went for lung function test today and was advised they cant see anything to worry about .Hope you mange to get the care you need and deserve Cubbyd take care Kathy x

[KatieAnna]

Hi I was monitored with heart scans and lung function tests annually for about 6 years then every 2 years. I think that different antibodies are associated with different symptoms. Scleroderma seems to be very differently expressed in everyone so it's possible that you will stay well longer, but I would still get monitored. Good luck with staying healthy!!

[-missymoo]

Hi Cubbyd

Really sounds like you’re not getting the care you need. Can I ask how they diagnosed Limited Cutaneous Systemic Sclerosis? If that is the correct diagnosis, you MUST be having echocardiograms and lung function tests at least annually.

I too have Limited Cutaneous Systemic Sclerosis which started off as Raynauds 13 years ago which progressively got worse and extremely painful for the last 4 years or so. Official diagnosis was Jan 17, positive ANA, ENA and positive Anticentromere. I have lots of of GI problems and dysphasia, telangiectasia and a slight skin changes. I think you most definitely need to be seen again and investigated, maybe at another clinic who are more specialist? My Rheumatologist where I am simply did not know what to do with me after exhausting all their ‘known’ meds and have now been referred on to see Professor Denton who is the leading expert in the disease and I’m finally getting the answers I do desperately needed to hear. Please push for it and good luck. X

[tanya1981 in reply to -missymoo]

Hello Missymoo, may I ask how symptoms developed for you over they years? Did you take any medicine or supplements before you were officially diagnosed with SScl? Any advice on how to keep things at bay?

[-missymoo in reply to tanya1981]

Hi tanya1981

It all started about 13 years ago with Raynauds, bloods always showed a positive ANA and ENA but not the anticentromere untill 2 years ago, although I’m suspicious it was missed previously and so was told Pre anticentromere that it was more than likely Primary Raynauds and not secondary. For me, the progression of the Raynauds over the years concerned me. To be honest for the last 4 years the Raynauds has been excruciatingly painful, I’ve tried Nifidepene, losartan, Sildenafil and most recently Glyceryl Trinitrate patches but nothing has helped. For the last 3 years I had telangiestascia (spelling) on my face and worsening reflux and now swallowing problems, certain stodgy foods getting stuck in my chest. I feel very lucky that my heart and lungs are (at the moment) unaffected. I’m still only 2 years officially diagnosed, so it’s all a big learning curve. I’m also taking Hydroxychloroquine and high dose omeprozole.

I have never taken any supplements for it, wouldn’t know where to start 🙈

How are you finding everything?

X

[tanya1981 in reply to -missymoo]

Thanks for the detailed response, Missymoo!

I really hope that you heart/lungs and other internal organs remain unaffected by this cruel disease.

I have had Reynauds for the last few years as well but it really flared when I was going through a tough patch in my life and I think that’s when the Systemic sclerosis kicked in. The diagnosis came quick for me, possibly as I was lucky to have a thoughtful GP and then went private for a quicker turnaround. I was put on Nifedipine initially but didn’t see much of a difference so switched to Ginko biloba instead. I can’t say any of them makes any real difference but I feel I need to use something during the cold winter months

Xxx

[-missymoo in reply to tanya1981]

That’s always great to hear tanya1981, so many people under the wrong care or inexperienced in the condition, it’s great to see you’ve been looked after from the onset. Long that may continue. Stress can be a contributing factor, so definitely do bare this in mind. Thank you, yes, agreed, very lucky no major internal factors at present 🙌

With regards to treatment, I’ve literally had no response or adverse allergic responses to meds 🙄 but hang in there, I’m sure there’s some hope. I dread the winter months. Eskimo here I come 😆

Good luck lovely x

[elprof7557]

I wholly subscribe to what has been stated above .Get yourself monitered at least twice a year by a rheumatologist and have necessary blood and urine tests taken.I've had LCSS in a mild form for 7 yrs .I suffer from Raynaud's only when the temp. dips below 8° C.That's the only problem I have for now, but nonetheless I am monitered every 6 months. Keep well and stay in touch with this site.

[tanya1981]

Hi Cubbyd, what are your symptoms now? Feel lucky that you’re not suffering badly to actually need to get checked. I do recommend an annual test though- bloods, echo, lung test... just to keep on top of things, as a preventative measure. I’m in a similar boat myself, after being diagnosed with limited SSc 2 yrs ago.