Scleroderma

[Songbird6]

Hi, I have suffered with Raynaud's since a teenager, my mum also suffered with it.

I think? I may have some symptoms of Scleroderma, I have acid reflux, a persistent cough, flu-like symptoms in the last few days, which come and go and two of my fingers on my right had became swollen recently, and I found it difficult to straighten them, they are still troublesome today.

I was diagnosed with Polymyalgia Rheumatica 2020 and Osteoporosis in 2022 with Kyphoscoliosis and many compression fractures to my thoracic and lumbar spine, due to Steroids given without Calcium/ D3 medication, even after I raised concerns to my GP, but that's another story! 🤥

I have an appointment for a health check this Thursday at my GP surgery and wonder if I should raise concerns then.

I have a phone appointment with the Pharmacist tomorrow about my raised Cholesterol and Famotidine and Peptac which I am taking for acid reflux, I recently asked to be taken off Omeprazole because of concerns it can cause Dementia over long usage, and it doesn't help Osteoporosis either.

I feel worried about talking to my GP about these concerns and that I won't be taken seriously! 😧

[Buttsy]

Morning,

I know how you feel, I go often to the GP with various symptoms ect, but if you don’t tell them what’s going on they can’t act. You deserve to find answer's, however daunting it may feel.

When I first went with my concerns , I felt awful and was in a lot of pain and discomfort and struggling to sleep.I explained how I was feeling and the GP ordered blood test, I think they checked me for rheumatoid arthritis, and ran ANA blood test ,when that came back positive they did ENA testing. I was positive for the Centromere antibodies which can be an indicator for Systemic sclerosis,I was then referred to a Rheumatologist.

I would discuss alternative PPI with pharmacist or something to help with the acid reflux. I tried to come of mine and my symptoms came back with a vengeance and I struggled to get it under control again , I was on Raberprazole but it didn’t seems to be as affective anymore so I was then switched to Esomeprazole by the Gastroenterologist,it has helped. Not sure if there is any connection to Dementia,I hope not.

Good luck at the GP, you have to be your own advocate,please raise your concerns, you could mention this site and the information you have read.

[Songbird6 in reply to Buttsy]

Morning,Thank you for your reply, I will talk to Pharmacist today and the Nurse tomorrow, I can't go on like this.

[Buttsy in reply to Songbird6]

That is just how I felt, I was desperate when I first went with my concerns , I ended up crying, which isn’t me ,but I felt like I couldn’t cope with it anymore. It can be a long process to get a diagnosis but you can get the ball rolling.

🤗 take care and hope your appointments go well .

[Songbird6 in reply to Buttsy]

Thank you, I will let you know how it goes 😬

[Clangerscat]

Hi songbird, I’m sure your GP will take your concerns seriously. If you are already under a rheumatologist then I would just ask to be re-referred to them. Something like Scleroderma needs specialist attention to get diagnosed and treated. It took me about 2 years to eventually get a diagnosis for my symptoms but my GP had no idea what he was looking for. So be patient 🤪 hope it won’t take you to long to get some answers.

[Songbird6 in reply to Clangerscat]

Thanks, I asked to be referred to a Rheumatologist when diagnosed with Polymyalgia Rheumatica, it fell on deaf ears 🤨 Not holding out much hope on that score! Autoimmune illnesses and GP's 🤷‍♀️

Heyho 😏

[OldTed60 in reply to Songbird6]

It’s different with Systemic Sclerosis to PMR. PMR is usually diagnosed and treated with high dose steoids by a GP and usually only lasts for a few years before burning out. Scleroderma is a rare and more serious autoimmune disease and only a rheumatologist can diagnose it. It is incurable and rarely remits so needs regular monitoring. If you think you might have it then you should ask for a work up with full blood count and ANA etc. if anything shows then your GP should be willing to refer you on to rheumatology. The only alternative is to go private but you still need to get basic bloodwork done first this first so I would firmly request this bloodwork even if a GP can’t or won’t see you in person. Also be aware that if you’re still on steroids even low dose this can mask your bloodwork so you maybe need to taper slowly off before getting tested. Your GP would need to advise and help you with this.

[Songbird6 in reply to OldTed60]

Thanks for your reply.

I have been off Steroids for a year now, PMR can last for more than a few years! I have been a member of PMR&GCAUK, I recommend reading HealthUnlocked's page for the group, it is extremely informative about the illness. Myths about PMR need to be put right, like it only lasting a few years and it only affects people of a certain age. 🙂

[OldTed60 in reply to Songbird6]

I was misdiagnosed with both RA and PMR in my late 40s so am well aware of what you’re saying re myths. My grandmother and my mother-in-law both had PMR too. But if you read any literature about Systemic Sclerosis you will find that it carries the highest mortality of any rheumatic autoimmune disease so I stand by what I say that it’s a more serious disease than PMR - or RA or Lupus come to that. PMR is relatively common and is usually diagnosed and treated by GPs without the need for a rheumatologist’s input. I’m sure there are exceptions to this as there are for most autoimmune diseases, particularly if it leads to GCA. However if you think you might have Systemic Sclerosis then you need to get your ANA and other bloodwork checked and then be referred to a rheumatologist because many GPs haven’t even come across Systemic Sclerosis, let alone know how to diagnose or treat it.

[Songbird6 in reply to OldTed60]

I just know what I'm experiencing this time is different to PMR. I am filled with dread knowing that I have to explain how I feel to my GP and be taken seriously. 😏🙄🤨 Thanks for taking the time to write 🙂

[OldTed60 in reply to Songbird6]

No worries. I get full of dread too when I have to ask a GP for anything I know they may be dismissive about. But if possible try to be as politely firm as you can about at least getting your ANA and other bloodwork tested. Puffy hands with Raynauds should be enough to require your GP to follow the correct protocol, at least in the first instance. It took me 12 years to get properly diagnosed but I’m fortunate that I had a good Gp when symptoms started and was already diagnosed with hypothyroidism so they knew I had autoimmune diseases and my bloodwork spoke for the rest, even if quite non specifically. Shockingly he only tested my rheumatoid factor and FBC rather than ANA back then and steroids later masked another rheumatologist’s attempt to search for rarer autoimmune diseases so it’s good you’re off steroids now at least. Best of luck and please let us know how you get on.

[Songbird6 in reply to OldTed60]

Thank you, I will. It's a case of filling out a triage form, which can be helpful as you can take time to add all that's presenting cause for concern. Not likely to forget to mention things like you might in a f to f appointment. My biggest symptom at the moment is the awful acid reflux, dry irritating cough, stiffness and pain in my body in the morning.

It's reassuring to talk about things.

Thanks so much. 🙂