Swallowing issues

[Lucyscure]

Hi all, I have being having swallowing issues, for quite a while now. I've got to the point where i can't swallow solid food. I'm waiting for a endoscopy to access what is happening, but unfortunately it's about 3 weeks away. I know this is a common problem people experience with scleroderma but i'm finding it difficult to cope with this particular symptom. I also haven't had an official diagnosis as i don't have any skin changes although i do have mild raynauds, muscle pain, the swallowing issue and SSc antibodies. I just need some advice from any of the other members who have this particular symptom and what medications or strategies you used to reduce it?

[DizzyLiz57]

I've had this problem for some time now and combined with severe acid reflux and burning mouth/throat I have an NG feeding tube. A JPEG to be fitted in a week.Unfortunately I haven't found any medication that's helped as there are so many things my throat won't tolerate, although Omeprazole did bring a little relief . All my meds are in liquid form and go down the tube.

It's a horrible symptom and I feel for you xx

[Lucyscure in reply to DizzyLiz57]

Thanks for the reply and i'm so sorry to hear you are suffering with these awful symptoms and that medication didn't work for you. Have you had these particular symptoms a long time? Was the decision to go on a NG feeding because of a lack of nutrition and weight loss?

[DizzyLiz57 in reply to Lucyscure]

Yes I ended up in hospital in December due to weight loss and poor lung function and they put me on the NG feed then. My swallow has worsened since so that I can't even get readybrek or custard down (as I was). They've decided to put in a PEG extension into the small bowel which hopefully will make the GERD better - we'll see 😊 xx

[Lucyscure in reply to DizzyLiz57]

Oh no sorry to hear you ended up in hospital, but it seems that they are being proactive in getting you the right treatments. I hope things improve for you very soon. 💛

[DizzyLiz57 in reply to Lucyscure]

Thanks Lucy. I hope your endoscopy gives you the information you need and you get some really helpful advice too xx

[Kilncadzow]

I suffered badly with this when I had scleroderma many years ago and although I’m fine now apart from a clawed right hand I still suffer occasionally with swallowing problems. I do have a hiatus hernia which doesn’t help but I take Omeprazole regularly so most of the time I can now eat and swallow normally. I keep saying this but I was treated with Penicillamine which stopped the scleroderma and got rid of most of the problems it had left me with but I don’t hear any mention if it now. Does anyone know why?

[nanagill in reply to Kilncadzow]

Hi Kilncadzow, I too would like to know the answer to the penicillamine question. I have been on it since being diagnosed almost 13 years ago and it has kept me stable. When first prescribed it my rheumatologist said they use it for arthritis but have good results with systemic sclerosis too. I've been a member of this forum for a lot of years and this is the first time I've seen it mentioned. 🤗

[Kilncadzow in reply to nanagill]

Hi - I was warned about side effects from Penicillamine but experienced none of them. I was warned that it might affect my immune system which it did - but in a good way. It seemed to give me protection from common colds etc. I went onto it in 1976 and was on it for about 8 years and was weaned off it gradually and I can honestly say that I have never had a bad cold in all that time .

[Lucyscure in reply to Kilncadzow]

Hi thanks for the reply. I'm glad to hear you are doing well on Penicillamine and that most of your symptoms were resolved using this (DMRD) drug. It gaves me hope that perhaps with the right medication i meant be able to achieve some semblance of a normal.life.

[OldTed60]

yes I have stages of this problem. I think it’s also associated with Myositis and Sjögren’s so maybe they need to look at overlaps if not positive for scleroderma. Eg CK and muscle biopsy for Myositis and lip biopsy for Sjögren’s if not showing in blood? I take maximum esomeprazole causes me other issues eg SIBO but does seem to help swallowing. I have hiatus hernia and Gastroparesis plus slow colon transit so think it’s part and parcel - mostly on a liquid/ soft food diet now but if even liquid is problem then you may need parenteral feeding ie NJ etc. hope not but worth researching so you don’t get nutritionally deprived.

[Lucyscure in reply to OldTed60]

Hi OldTed60, I hope you you're feeling much better now after your last stint in hospital. I do remember you mentioning in a previous post that you suffer from a lot of GI issues and my heart really goes out to you, as it can't be easy dealing with all of that.

In regards to the sceleroderma antibodies i did test postive to both Anti - centromere and Scl-70, but due to a lack of skin involvement I don't reach the criteria for an official diagnosis. I also tested negative for both myositis and Sjögren’s antibodies, but further testing may be needed such as a muscle and lip biopsy to make a definitive diagnosis I can still drink liquids and take supplemented things like complan, but anything else really causes a lot of issues so hopefully i won't have to go onto parenteral feeding just yet.

Thank you so much for your kind words and advice it's always a pleasure chatting with you.

[OldTed60 in reply to Lucyscure]

Thanks so much. Oh dear we are in very similar position then with scleroderma antibodies but no real skin involvement. I do apparently have perioral furrowing which my dermatologist is sure scleroderma related but backs of hands still quite stretchy to the pinch. I guess I’m fortunate to have a rheumatologist who treats me regardless of labels. Lip biopsy was very positive despite no Sjögren’s antibodies so the local scleroderma said my antibody could be my own unique sjogrens one. It’s very unfortunate for those of us who don’t tick the rigid diagnostic criteria boxes though xx

[Lucyscure in reply to OldTed60]

Yes it's highly frustrating to be left with no diagnosis, even though i have specific antibodies and symptoms that point to scleroderma. I mentioned in another post that i'm actually starting to think that i may have the sine form of systemic Sclerosis as it seems to fit that particular presentation. Though in all honesty I hope i don't as i have seen how difficult it is for those who have this subset ( you included) to be properly diagnosed and too, more importantly, receive treatment in a timely manner. The delay in diagnosing people does worry me a lot.

I must say it's good that your rheumatologist is willing to treat your symptoms regardless of any specific labels. As I imagine a lot of rheumatologists would have been very dismissive given the rarity and complexity of your particular case. Was it your dermatologist who suggested and performed the lip biopsy? If so bravo to him/ her for thinking outside the box.

[OldTed60 in reply to Lucyscure]

thanks. Yes sine ..hmmm it seems not really to be an accepted / acknowledged thing judging by omission to mention on ACR or EULAR criteria or here on SRUK?

For me it’s been a rambling long journey as I started out being diagnosed with RA back in the day - likely a misdiagnosis looking back although I see how and why. I tried all the first line meds. Then years later Sjogren’s got missed because my blood tests for it were (and still are) negative and I finally had schirmers and spit test done when I was already on steroids and eye treatments. So nothing showed at all.

No one ever tested for Raynaud’s but my old GP diagnosed and treated with nifedipine on strength of my RA diagnosis. It’s all been a long catalogue of unfortunates errors in judgement and timing really. It was a now retired rheumatologist (old school but great although only saw him the once) who pieced all my bloodwork and high ANA together and ordered a lip biopsy from dental hospital 7 years ago.

The first scleroderma antibody only showed equivocally once or twice so scleroderma drs here dismissed as likely false positive and we’re going to discharge me from their clinic with seronegative Sjogren’s only .

My dermatologist could see the red spots dotted about my face and hands and was sure MCTD so referred me for second opinion internally. And that’s when the high titre sclero antibody showed up first time under this new rheumatologist in 2020. The other is for limited but this one is more diffuse. And now I’m sort of half diagnosed but mainly as Overlap Syndrome without specifying. The treatment I get is mainly because I have high immunoglobulins of sjogrens and presumed neuropathy - which some rheumatologists take more seriously than others. Mine specialises in lupus so she’s more aware of neuro complications - although to be honest mine have never been confirmed as neuro. Both diseases put me at very high risk for pulmonary hypertension and lung problems and I suspect that’s why I’m treated belt and braces now.

When in hospital very recently for infected portacath, a different one who is some kind of registrar challenged my diagnosis and treatments - particularly my eligibility and benefit from Iloprost infusions . This was my dread come true. She pinched backs of my hands as some do and said no Sclerodactyl asked about digital ulcers - answer only on toes occasionally so far but loads of painfuk blisters in finger tips if I don’t get Iloprost. She did confirm little lines around lips were perioral furrows but maybe they can be an ageing/ weight loss thing too?

My own consultant overrode this person finally but it was a very low few days and made me realise how fortunate I am to have my present rheumatologist. I know from long experience that they are one in a million x

[OldTed60 in reply to Lucyscure]

ps from amount people here describing sine as their diagnosis and elsewhere on scleroderma communities seems sine is much more prevalent than the medical community is prepared to concede?

[Midgebite21]

Only way I find to cope is by having smaller mouthfuls, chewing rigorously and always having water available to sip and soften mouthfuls of food up. I eat very slowly compared to everyone else at our dinner table. I also tend to eat a lot of soup and dishes with a lot of sauce or gravy. Plain chicken is a nightmare. I had an endoscopy and a barium swallow a few years ago and afterwards all I got was advice like I’ve just stated above as my issues don’t warrant any treatment intervention like oesophageal stretching (which I don’t fancy anyway) or PEG feeding.

[Lucyscure in reply to Midgebite21]

Hi, Midgebite21, thanks for the reply, yea chewing everything really rigorously and eating smaller mouthfuls is a good way to get the food to go down the throat without it getting stuck and causing choking episodes. Unfortunately i've tired doing that and it just causes me a lot of pain and discomfort, so far now i'm.just sticking with complan, soups and milkshakes, but i do worry i'm causing myself nutritional deficiencies.

I'm having an endoscopy in a few weeks, ( not looking forward to it) so i'm hoping they will be able to offer some solutions, though the oesophageal stretching sounds really unpleasant so hopefully i won't need to have that!

I take it that they didn't find anything significant in your tests, did they just put your swallowing issues down to a motility problem ?

[Jaq1971]

hey there so I have what they call muscle spasm in the oesophagus I also have gerd reflux I take 40 mg omeprazole and have fortijuice when bad soft foods small mouthfuls and liquids are the best way forwards I have scleroderma with no skin issues it’s called systemic sclerosis I also have nifedipine which helps with raynaulds and swallow speak to your doctor there are things that can help xx

[Lucyscure in reply to Jaq1971]

Hi, thanks for the reply. I'm sorry to hear you're dealing with all those issues especially the oesophageal spasms I imagine that is very painful! It's being quite surprising to see the amount of people on here and in other forums who have sceleroderma without skin issues, yet rheumatologists say it's incredibly rare. Thank you for the advice i will talk to my doctor about the medications you mentioned.

[OldTed60 in reply to Jaq1971]

yes I forgot to suggest oesophageal spasms - I get them too - terrifying painful but now well controlled by double esomeprazole, Famotidine and Raynaud’s meds just as you say. Silent reflux an ENT confirmed last year.

[janetfmauk]

I take esomeprazole and Famitadine along with metoclopramide which is particularly for swallowing problems but they may not prescribe it as it can cause brain problems. The only skin evidence I have a re Telangeictasias on my hands and feet. It is Sine Systemic Sclerosis in this case and affects me from my lips all the way through my system.

[Lucyscure in reply to janetfmauk]

Hi Janetfmauk, Sorry to hear your dealing with all the symptoms of Sine systemic Sclerosis it seems to really effect the Gastrointestinal system. I'm beginning to think I may have that variant, due to my symptoms and lack of skin involvement. Thanks for the medication mentions, it's good to know there are drugs that can relieve these awful symptoms.

[Sandy2012]

I had esophageal stricture which made it very difficult to swallow food. I had some type of rubber tube inserted in my esophagus to open it up and never a problem since then and that was about 30 years ago!

[Lucyscure in reply to Sandy2012]

Hi Sandy2012, Firstly thanks for sharing that and I'm sure you were so relieved to get that procedure and not have a reoccurrence of those awful symptoms in all these years. It's reassuring to know that there are medical procedures and other options that can correct these things and that we don't have to suffer needlessly.