I am struggling a little since I was diagnosed with scleroderma last year and looking for a little bit of advice.
My story behind the diagnosis was due to routine bloods showing I had extremely low ferritin levels causing iron defiency anaemia, which led to iron infusions and emergency endoscopy/colonoscopy to rule out cancer but showed I have GAVE. My Drs didn’t seem to want to do much after that apart from give me iron tablets but I looked into it (as never having heard of it) and asked for the ANA test, this came back positive 1:640 titre with centromere pattern so was referred to a rheumatologist.
My rheumatologist has sent me for lots of tests to get a baseline of my health, but how do I know if she specialises in scleroderma or does that not really matter. She seems to monitor my health by making me have bloods every 3 months but hasn’t been monitoring my iron levels which I feel are dropping again. (Iron tablets have caused problems with my stomach and bowels so have had to stop taking them) I have raynauds which I take losartan for (nifidipine I couldn’t tolerate) but the dose is low as I already have low blood pressure, so I do have attacks most days but mostly my feet so I just tolerate it.
I have severe itching, mostly ears and head plus I have a large patch of tight skin on my lower leg that has hives when hot. I ache most of the time and get extremely tired some days, other days are not so bad. I could go on but then everyone would be bored!
If anyone has any advice or anything it would be greatly appreciated. For reference I am based mid Cornwall so choice of hospital etc is very limited down here!!
Thanks for reading 😊
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Lily52
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Has the rheumatologist put you on any kind of immunosuppression, e.g. methotrexate? This would slow down disease progression.
I have GAVE too and also cannot tolerate iron tablets so I have iron infusions when needed instead.
I would ask for a referral to a scleroderma specialist centre like the RUH in Bath. A long way to travel but you may only need to go once a year and see your current rheumatologist in between.
Thanks for replying, sounds daft but nice to know someone else suffers from GAVE too! They have mentioned immunosuppressants but my dermatologist doesn’t want me to have methotrexate as I have had dodgy moles in the past and therefore my chance of skin cancer is high. So they have talked about hydrochloroquine but they seem to talk about things then send me off to wait until the next appointment which are yearly, with just 3 monthly bloods between.
I don’t mind travelling to a specialist i just don’t want to waste anyone’s time which is how I am made to feel when I have an ache or pain so I end up just ignoring them! 😀
I know exactly how you feel I am not seen at a specialist centre and i am thinking of asking to move rheumatologist nearer to my home, I have the centromere antibodies like you but because my nailfold came back normal I haven’t had an official diagnosis. I am now showing signs of Sjogrens as well. My rheumatologist as said I have fibromyalgia and probably systemic sclerosis and with regards to the Sjogrens, he his going to trial me on Hydroxychloroquine and see if symptoms improve. I am on Losartan too.
He doesn’t seem to do regular checks without me asking.
I don’t think he specialises in systemic sclerosis either but he says he was trained and spent some time in the specialist centre, I worry things are being treated lightly and he tell me there is no cure ,but that really doesn’t help me at all.
So I share your concerns and worries, it appears mine is a waiting game till I get a positive nailfold test, a diagnosis won’t change things for me but at least it would be definite.
You could ask to be referred to a specialist centre as a one off if that would help, I realise this may involve travel, but it may help you.Then go back to your usual rhematologist if that’s easier.
It is a complex disease , with little understanding in the general public and even professional to a degree.
Thank you for replying, I do have the nail fold issues but just one finger is visible to the naked eye at the moment although two more fingers show it under the microscope thingy they used apparently. I have had this for over a year before I was diagnosed but didn’t think anything of it, I then started with raynauds in my feet but as my other half has always suffered from it we just thought it was like his. I also suffer from fibromyalgia but my rheumatologist seems to ignore that when I mention it so I end up just being quiet and walking out as frustrated as I was when I went in!
Was your ANA titre high or low when you were tested? I do remember at my first appointment when I felt like I literally was talked at for an hour, I did ask if I definitely had scleroderma and she said my blood results were high so yes and now we just wait for it to progress!
My ANA result are positive, anti centromere >8 which I believe I was told this is a high titre as normal range is 0-0.9 my Rhematologist write on my letters:Diagnoses Possible systemic Sclerosis ( ANA positive,anti centromere >8) then list other health problems.
When I ask he always say it’s probably but we will see. Very frustrating.
Same wait and see!
Just about to start on Hydroxychloroquine,had discussion with pharmacist about it.
Hi Lily52....someone on here posted that Prof. Denton at the Royal Free is happy to see anyone with diagnosis of Scleroderma. I phoned his secretary directly and she confirmed this was the case, and asked for a letter to be forwarded from my GP. He does a satelite clinic in Bristol 3 times a year, so being based in South Devon, I secured an appointment. That was 2 years ago. He wrote to my Rheumatologist, suggesting I increase my Hydroxy, and that if I needed to see him again, he was more than happy to do so. He is the most caring, kind and informative man, and he answered questions my Rheumy couldn't. Hope that helps.
Thank you so much for that I would travel to London if I could see him! I will try to contact his secretary and see what they say. My drs aren’t the most supportive there initially just say i am a complicated case and leave it at that!
So little is known by a lot of GPs and Consultants...that's why I sought advise at the top of the food chain....I seem to recollect him saying that he did the odd clinic at Exeter too...worth asking.
Hi Lily I also have GAVE and was very ill with it requiring two emergency blood transfusions followed by iron transfusions. It was actually through being referred for my GAVE that one of the gastroenterologists noted my clawed hands and referred me to rheumatology. I was lucky that my area had just asked a scleroderma specialist to set up a centre at my local hospital. The treatment for my GAVE however is still being done by the gastroenterology department and I think you need to be referred back to them incase it needs more treatment. My iron levels are always below normal and although my hemoglobin is a lot better I don’t know if it will ever be as good as it should be. I think perhaps a referral to a specialist in either Bath or North bristol would be beneficial to you but also ask about treatment options for your GAVE. Good luck, take care.
Thank you for your answer sorry to hear your GAVE is so bad. I was under the gastroenterologist but unfortunately he was off ill so I had to see a temporary consultant over the phone who didn’t listen to me wrote on letters I had lupus and then when the original dr came back they just signed me off as I just have iron deficiency anaemia and take iron tablets!
It all gets so frustrating as you don’t know which way to turn or what to do to try and stay as healthy as you can!
Hi Lily52, I feel your pain I too am in cornwall so we probably have the same rheumatologist who is very nice but not an expert. There are just no resources down here and I get fed up seeing so many different people for one over arching condition. My main problem with the scleroderma is intestinal failure with a tummy that looks like full term pregnancy, but the gastro team down here don't seem to have a clue and I now haven't seen anyone regarding it for more than two years, just get on with it which is very depressing. I have been to Bath when it first started and they recommended a stoma but cornwall over rode them and will not consider it. Like you I don't know where to go next as we don't have specialist nurses or similar down here and I feel particularly isolated in trying to cope on my own, take care
I am so sorry you are struggling so much with your stomach. I have a friend with a stoma bag (not because of scleroderma) and it changed her life. The problem with Cornwall is that although its a lovely place to live the NHS is not great, you need to be an advocate for your own health so keep pressing them to help you out. If you feel isolated please reach out having a rare immune condition can be so lonely and daunting especially when you don't know whats going to happen next!
I am sorry to hear you are struggling. I have scleroderma with severe raynaulds. I do not have GAVE.
I would echo what others have said about getting an appointment with Prof Denton. I am now in a split-care setup between Prof Denton's team at the Royal Free and my local rheumatology team. This means I have an annual consultation in London with Prof Denton (or usually one of his team), but all my other care is covered by local team (e.g. lung function tests, ECGs etc.) which logistically makes everything much easier. I am not on any medication as I could not tolerate losartan or nifidepine (I also have low BP) plus I did not notice any positive effects. So I manage my raynaulds by staying as warm as possible (disposable hand/foot warmers, good gloves, avoid getting wet hands etc).
I also had an iloprost infusion treatment for the first time in November and this is the first winter without any new digital ulcers, so I think it has been effective. Again, I was able to have this done locally and travel in each day rather than spend a week at the Royal Free.
My skin tightening is severe on my face, so I have tried lots of treatments in regards to this - happy to share if relevant, please just ask!
I am very interested in alternative/more natural methods of managing my condition. Here is what I have found useful in case it helps:
- daily probiotic: I take symprove which is a drink each morning on an empty stomach. There is a strong link between gut health and autoimmune conditions, plus if you have to take lots of medication or antibiotics then this can help calm the digestive system.
- medical grade manuka honey to use as an ointment on any ulcers or cuts
- drink loads of water
- keep moving: I am a pilates instructor so am very passionate about encouraging healthy movement patterns and building strength and mobility to aid overall wellbeing. Also it is great for mental health and giving the brain a break from all the worry.
Hi Sophie, thank you so much for your response. My next stop is natural remedies as I seem to still get Raynaud's attacks even on the losartan but my pharmacist said that it will be stopping the digital ulcers, I don't know if that's true or not, but went with it! I also have the disposable foot/hand warmers, although a friend bought me a heated pebble thing that I can recharge which is great in my pockets on an early morning dog walk! Sheepskin boots have also helped and living in Cornwall you can get away with at work as it seems to be the norm! Exercise wise I walk at least 5 miles a day, also go to a Pilates class once a week mainly because I have arthritic hips which have been aggravated by the Scleroderma and I do feel like I am seizing up around the back and hips. So basically I work through the pain and do feel better mentally afterwards my little dog also helps me a lot as she never judges if I am not quite up to speed! 😂
Hi 😊 I’m recently diagnosed and in Cornwall too! My symptoms are different to yours but I have the same ANA titre and centromere pattern, but with very obvious nailfold capillary changes, Raynaud’s, and severe musculoskeletal pain and swelling - it really does seem to affect everyone differently!
I’ve found the Rheumatology Nurse Advice Line very helpful re new symptoms, so it might be worth giving them a call? Alternatively, you could speak to your GP and ask them to submit an Advice and Guidance Request to the Rheumatology team?
Thank you, its good to know there are more people diagnosed in Cornwall and I not the only one trying to battle the joys of Treliske and the local Drs! (its not even summer yet!)
I have to go for more bloods tomorrow as they forgot to check my iron levels last week which I think are low again. After that I will give the advice line a call, I find I have to prioritise my battles each day otherwise I find it all overwhelming. I end up sitting at my desk and wondering if this is a new symptom of scleroderma or just a symptom of getting older! 😀
You are ever so welcome, and it’s lovely to know there are others in the same, albeit a bit leaky, Cornish boat!
Prioritising your battles is key, alongside learning to pace yourself, which is something I’m struggling to do as I always end up overdoing it when I’m feeling well and causing a flare of my symptoms!
I hope you’re able to get some help from the advice line. Take care.
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