I have been diagnosed with systematic scleroderma and it has affected my stomach and esophagus, among other things . My treatment is lansopranzole 30mg and domperidone before each meal. My rheumatologist has treated me with an immunosuppressant infusion called mabthera (drastic substance called rituximab) this July and my skin has softened somewhat. On the other hand, I have trouble swallowing and keeping good down. The worst is a choking feeling. My pharynx hurts and feels really tight . I would like to know if anyone else has the same symptoms and how to copy with this situation. Last year I had an examination called esophagus manometry to define scleroderma damage and it was little . Ian worried it has worsened but I don't know if there is a solution. I forgot to mention I live in Greece and scleroderma is quite rare. So any help, info or advise would be most welcome
Trouble swallowing: I have been... - Scleroderma & Ray...
Trouble swallowing
It could be that the swallowing function (peristalsis) has weakened rather than further damage - that's something for tests to tell you. I have ssc and gastroparesis too I feel your pain! There are potential solutions depending on what's going on - something to call your Dr and discuss - write a list of your short and long term worries and get answers.
Thank you for your reply.i will do that
Am very much feeling for you...I have v similar problems due to systemic lupus & have been managing them all my life, (I'm 62) with these problems continually getting worse despite conscientious life style management + compliant prescription meds taking. i've had the same tests you have, and have been on & am now on similar meds to yours...the main diff is that I don't have diagnosed scleroderma (yet) and I'll only go on rituximab if my current lupus meds cease to help me as much as they do (am on a heavy duty treatment plan including daily mycophenolate & hydroxychloroquine, with prednisolone tapers as required, + a long list of prescription topical meds for various multi system conditions.)
Am sure you'll get good replies like The Bear's. I realise my diagnoses are too different to mean I can be truly helpful...but: The main reason I'm replying is to suggest you consider trying out fresh ginger tea... ( please Forgive me if you're doing this already, or can't tolerate ginger): .I make a pot every day using a piece of fresh tuber at least as big as my thumb. This tea has helped me greatly to cope with my chronic dysphagia (trouble swallowing), my chronic gastritis & oesophagitis & gastroporesis etc etc. I let the root sit in the pot for several hours, so that the tea is very concentrated & strong. Then I use it like a squash: diluting it with warm or cool water. My meds & all my other lifestyle management do help me a lot, but sipping this fresh ginger tea all day long, all year round, is vvvv soothing & makes my life much more bearable
Take care
Hello Barnclown,
What put you onto the idea of making a strong ginger tea / drink? Does it have medical value, or is it only the 'soothing' effect it has?
T
Good question
Would you believe, I was reading a good bit of historical fiction set in 1400s....heroine was a herbalist who was using ginger tea to soothe another character's nausea..the author explained the great tradition way back in human history of using ginger to treat various maladies, especially inflammatory illness of the GI tract. At the time of reading this book, I was extra poorly in a horrendous phase of my chronic GI inflammation stuff, so when I read this about ginger💡💡💡i thought💡💡💡: and I rushed out to buy some ginger root....this was nearly 15 years ago: the start of a beautiful relationship between ginger & me❗️ it wasn't long before I realised ginger REALLY REALLY did help damp down my GI inflammation...(alongside my prescription meds of course) ....so I experimented with how to prepare ginger, & eventually came up with the concentrated ginger tea system I've described above....i have posted about this system several times over the years on my various health forums...all my lupus buddies have tried it & been converted to it. My Drs all know I use this system & have been very enthusiastic about it too: they say ginger is an ace herbal anti-inflammatory. Ginger tea is extra helpful to me when am on antibiotics or any other med that causes my oesophagus & stomach to inflame
Sounds interesting Barnclown. How much water do you use to make the initial infusion? I find the PPIs are not totally controlling the reflux and anything is worth a try.
Best wishes to all.
My teapots are mostly approx 1 pint...lately I've been using a slightly larger piece of ginger root so I get a stronger concentrate. I use those 'stump pots' which have an infuser serve that holds the pieces of ginger and sits inside the top opening...after 4 hours or so of infusing, I remove the ginger & dump it in the compost. I keep the teapot full of concentrate in the fridge until I've used it up...I prefer to use each pot of concentrate within 24 hours while it's relatively fresh. This really does help me just that bit more...even when I'm on oesomeprazole & domperidone...and certainly helps hugely when am on antibiotics. Hope this works for you too
Many thanks Barnclown will give this a try. First I have to buy the ginger and stump pot tea pot. Not quite sure what this is. I have never used fresh ginger, do you use it as it comes or do you have to prepare it?
Keep as well as you can, Anne
I buy my ginger root at the supermarket. They usually have a big veggie tray full of loose root at tesco and at morrisons. Waitrose has little bags of root pieces in their herb section. I think all the other chains will have it too....cause so many cookery recipes call for ginger. Hope you get on well with this
NB I do peel the chunks of Tiber or root...I take a sharp beg knife & trim off the thin brown skin...sort of like the skin on a new potatoe. Then I slice the root very thin straight across...as I do carrot rounds
Once again thank you. I'll definitely try this. I will be away at my daughters for about 4 weeks. I will let you know how I get on when I come home.
Best wishes Anne
Great! It's lovely to imagine you having a great time together. Am hoping ginger will help you as much as it does me. Take care
I have your problems..but i was not diagnosed with sclerdoma..i was given similiar medicine.dexilant..$11. A pill.and domperdone..my esphogeaus was designed not right it narrows in two places..and i have hiatus hernia..dexilant was the best pill for me..nothing works like it..i was scared to take domperdone..but i. Now have no choice.food just builds up in esphogeaus..sclerdoma patients have
Tight skin.no wrinkles..good luck with this terrible infliction.only one that deals with this everday knows how awful it is..
The truth is that sometimes I feel like Ian choking and this makes me panic. It's a relief to know that you know what i am talking about and at the same time I am sorry people have to suffer like me or even worst. Barnclown I hate ginger but I will give it a try! Thanks for sharing your recipe!
Hi I to also have systemic scleroderma diagnosed advanced in 2008 , I have lung trouble mainly ,my hands are fibrosed very little movement , my esophagus is widened its not like a normal one, ive had numerous test bowel, throat, chest ct scans , im on methotrexate tramodole n osteo panadole for pain ,my joints are thickened I broke me femur last year as I have low bone density and now can only walk with an aid such as a rollator or im in the wheellchair, I have choked twice in the last 6months but not on any other medications I'd love my skin to be softer again I hate it it so depressing as you know but day by day we go on , I thank the good Lord I wake up every day , I live in Australia my condition is also rare here
I admire your strength and I wish you all the best. The choking feeling I was talking about...I went to the hospital on Monday , I couldnt swallow my saliva. The rheumatologist sent me to the otorinolarygologo(this is the Greek term, I hope it makes sense) and he diagnosed amygdalitis in the base of the tongue! I had never heard of this before ! They gave me antibiotics and I must tell it stopped, even though I thought they misdiagnosed at first.
Nutrisips anyone?
Who has problems with their mouth with Scleroderma?
Does anyone know if scleroderma can cause one to see bright flashing swirls if one blinks in darkness?
Seeking info for Mum suffering with Raynaud's and Scleroderma
