Gut and hands!

[cheeselover342]

I would say these are my two major symptoms. I started suffering from acute indigestion in late summer 2018 and the GP prescribed Omeprazole. Only a few weeks later my hands and lower arms became swollen, red and painful. As luck would have it the same GP who happened to have a special interest in rheumatology and dermatology, immediately suspected systemic sclerosis and referred me to specialists in both fields. It was pure chance that this happened as I know other people and my own relatives have had a 2-3 year wait for diagnosis of auto immune conditions (and I realise many people wait even longer). After two gastroscopies, gut biopsies, numerous blood tests (largely inconclusive) and finally a skin biopsy, I was diagnosed with scleroderma in June 2019. I was later discharged from dermatology but still have regular check ups from my rheumatologist, plus echocardiograms and lung function tests (although waits for these are variable!!). My gut issues (reflux, bowel frequency etc.) are manageable at the moment but I have to be careful - I am currently on mycophenolate, hydroxychloroquine, esomeprazole and antacid, plus eye drops for dry eyes.

I think GPs require more education about this and other auto immune conditions. They can cause so much distress for so many people. Even though they are relatively rare there are still a lot of people suffering acute anxiety waiting for a conclusive diagnosis for mysterious symptoms.

[OldTed60]

I can relate to your worst symptoms - although mine would also include my feet. It’s taken me 12 years since onset to get correctly diagnosed. Although, to be fair, I was always taken seriously - just had lots of misdiagnoses - or perhaps it’s just morphed from RA to others, mostly Sjögren’s and antibody positive systemic sclerosis.

I sometimes think others are just much better at describing symptoms accurately - or better at focussing on key symptoms and not overwhelming doctors with extraneous stuff.

I read, post and comment here often because it’s helped me so much to get advice and support that I really like to try and give back. And it’s those living with diagnostic uncertainty I tend to remember most. Like yourself I’m haunted by the multiple brick walls so many hit. Mine seem to have been relatively climbable in comparison.

[cheeselover342 in reply to OldTed60]

Oh my goodness, 12 years! That's shocking but I'm afraid all too common. My son-in-law's mum has been suffering for years with various symptoms and has only been told it's an "unspecified auto immune condition"!!! It is so distressing for her. I suspect that many of us suffer from 'over-lap' syndrome which doesn't help. I'm glad that your condition is at least reasonably manageable.

[OldTed60 in reply to cheeselover342]

Your poor son-in-law’s mum - that really would drive most of us to distress because there are so many autoimmune diseases out there. Many of us belong under one main umbrella within the vast spectrum but not even to have a broad support group or to be able to tell friends and family where our condition sits must be impossible x

[DiNiro in reply to OldTed60]

I had a swollen left arm in 2007., but I never heard of this condition and may have a connection to the gut. I thought it may had to do with my hypothyroidism and medication.

In 2013 I was diagnosed with Ulcerative Coloitis. My arm has been swollen a few times since then, but since it goes away, I didn’t think more of it. I had to change doctors since the one I had for 14 years suddenly died.

None of my GPs were specifically concerned about a swollen arm.

[OldTed60 in reply to DiNiro]

Sorry but I’m confused by your reply - I don’t have a swollen arm? Do you have diagnosis of scleroderma or Raynaud’s or do you mean you hadn’t heard of scleroderma? If so then I recommend that you just go to the SRUK website and have a read. Hypothyroidism and Ulcerative Colitis are much more common and quite different autoimmune conditions. Systemic Sclerosis is rare and is usually associated with Raynaud’s and at least some degree of GI problems - some severely from top to tail - others mostly reflux/ heartburn. Scleroderma literally means hard skin - but the skin itself is actually the connective tissue throughout our bodies, including vital organs - not just outer skin 😊

[SheenaC]

Hi cheeselover

I have had Scleroderma for 25 years - also Rheumatoid Arthritis and Raynauds.

I was lucky to be diagnosed fairly quickly with all three - back in the good old days when tests were carried out quickly with no long waiting lists!

I am in Scotland and get good care via Glasgow Royal Infirmary.

I no longer take hydroxychloroquine. I was on it for years with no adverse affects. My consultant felt it was no longer helping me. He has also taken me off sulfasalazine and has asked me to very slowly lower my dosage of methotrexate(8 pills per week) all for the same reason. I have been on all of them for a very long time and as they are no longer helping then my internal system is better off without them.

I don't know why you are on omeprazole and esomeprazole - don't they do the same thing? I am on lansoprazole (1 a day) to help protect my stomach. I don't have reflux and don't take antacids.

Sorry this is probably not of much help. My biggest problem is my hands with the skin tightening on the RA makes them very painful and I have difficulty picking up small things - like pills! I also have calcinosis on my two thumbs.

Hope things improve for you.

Sheena C

[cheeselover342 in reply to SheenaC]

Thanks Sheena C. Sorry if I was misleading. I started on omeprazole but after gastroscopies etc., a couple of months later I was put on esomeprazole instead. I too have difficulty picking up small things, doing up small buttons almost impossible etc. Best wishes to you.

[SheenaC in reply to cheeselover342]

I forgot to ask if you take folic acid? I take one a day for 6 days but none on the day I take methotrexate. My consultant put me on it years ago to help with any stomach problems when taking methotrexate. Best wishes