Sicca/ sjogrens too

[LilaJoe]

Hi

Anyone out there with diffuse plus sjogrens?

It adds to the dryness and means swallowing is hard.

It would be good to chat if so! .

[janetfmauk]

I have diffuse, but without any skin involvement, apart from telangeictasias, and Sjogrens. Mt throat is virtually permanently sore and I have difficulty in swallowing but it varies as to how bad it is but often food feels as though it has got stuck in my oesophagus or it causes pain as it tries to go down.

[LilaJoe in reply to janetfmauk]

Hi Janet

Yes,it's hard to know which bit is the sjogrens and which the SS!

The dry eyes are quite difficult to manage with so many temperature changes l find,and the dry mouth too.

I am having more soups, and find that helps,along with slow cooked stews so the food is soft.

I don't have any medications yet, and find just drinking lots of sips of water helps . It's all quite a juggle !

Best wishes

Lila

[janetfmauk in reply to LilaJoe]

I too eat soft food, I don't eat crusts off bread or anything hard. I am on a lot of medications for various conditions and recently tried Pilocarpine but unfortunately it didn't work so I use water and a gel I was given. I was given a spray as well but it is very painful to use. I have had a permanently sore mouth for 2 1/2 years and no-one can resolve it.

[Hidden in reply to janetfmauk]

I hope you are get onto effective treatment soon - how long to wait until you are seen by the rheumatologist?

I have Sjögren’s with Raynaud’s rather than Scleroderma but my ANA blood work is more suggestive of Sclero than Sjögren’s and I do have telengecstasias as well. It affects my whole body system one way or another. I use Hyloforte drops and artelac gel for eyes and Oralieve gel plus Salivex pastels all the time 24/7. I try to let them dissolve very slowly on the roof of my mouth overnight. I too can’t bear the spray.

The Sjögren’s expert told me the other day that most of her patients with both diseases have the anti RO positive type secondary Sjögren’s. Mine was lip biopsy positive which would be more unusual with Scleroderma - but it was hammered hard initially as mistaken for RA.

So Sjögren’s is probably my main disease and is mostly neurological for me m - although I do have the dry eyes and mouth too - but it’s the MS-like symptoms that affect me the worst of all. I’ve had Sicca for much of my life.

She said that people who can ride through the side effects of Pilocarpine usually find it very worthwhile. Meanwhile my main doctor is a Scleroderma man and has advised me not to bother with Pilocarpine so not sure who to trust on this!

I am presently sucking a sugar free strepsil - which is the most effective relief I have for the constantly sore throat. I try not to sip water during the night because it only makes me want to pee more often and apparently washes away the good enzymes in our saliva which aid swallowing. The soreness in my throat affects my voice box and makes me breathless plus dry cough and reflux -even affects my guts all the way through. Ranitidine twice daily and raising pillows has helped the reflux so I cough less - which helps throat.

I haven’t found any affective form of relief from system wide dryness despite taking max dose of Mycophenolate.

In case this is useful for either of you I think the sore throat might be partly neurological in my case rather than all due to dryness - because my whole face has gone semi numb and tingles 24/7 - lips burn - and I recently read this from John Hopkins neurological manifestations of Sjögren’s - the Sjögren’s rheumatologist confirmed:

“2. Trigeminal neuralgia and glossopharyngeal neuralgia

Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.”

[janetfmauk in reply to Hidden]

My anti RO is negative according to a blood test in April. I next see my Rheumatologist in early January - appts every 6 mths - she will send me for another ECG as I have a ? over my PA reading and get breathless very easily - am having to keep notes on what happens - the condition being checked on is Pulmonary Hypertension.

In July she referred my to an opthalmologist and I have seen him a few weeks ago - the advised using my gel tears even more frequently and another appt in 4 mths.

It wasn't the side effects of the Pilocarpine that was the problem but the fact I had no positive effects having tried it for 4 mths although my GP thought a problem I was having might have been caused by Pilocarpine but despite stopping taking it the problem still remains and after a 2 week referral worked out badly in terms of the attitude of the consultant I am now on a general referral as I think it is my SSc that is the cause.

As far as my mouth is concerned there is nothing else in drugs that they feel will help. I did not have a lip biopsy but had a scan done by a head and neck specialist who found that the salivary gland on the left side is totally shrivelled up and on the right side partially so and other evidence from the scan proved I have Sjogren's. Currently I have an infection in my gum and the tooth concerned which has been loose for about 18 mths has got to come out as it has no bone to hang onto.

The back of my teeth show that I have reflux eroding them away which fits with the sore throat even when I don't feel any reflux. I take 2 esomeprazole a day because I had 2 ulcer - which these cured and have to keep taking along with 2 Ranitadine at night. I suck a salivix at night and now use gel in the night to replace the water. I have an electric bed thus can sleep at an angle but also sleep with my feet up along with a pillow under my knees which along with coconut water and tonic water has considerably reduce the spasms, cramp and restless legs that I get if I stand up and walk around too much ( I have to use a wheelchair for anything other than very short distances - have done since 1990).

[LilaJoe]

They are horribly trying these conditions aren't they! Like you Twitchytoes my main and early symptoms were sjogrens,but seronegative and ultrasound scan found salivary glands are ok. I hope the facial pain doesn't develop...

With the scleroderma on top,lm concerned about skin changes as all round my eyes is so vulnerable and sore anyway.

I've got ikervis drops now and punctual plugs,so am desperate for them not to get any drier for a few decades!

I've such difficulty with chewing and swallowing too,it's alot to deal with really and I'm still adjusting.

I think some of this is neuropathy related/ slow digestion ( l used to be such a good fiend,and now find it hard to get excited as the sjogrens dryness has affected sense of taste and smell too)

Very very trying!

I'm wondering how people manage cooking,with the tight skin on fingers and hands? Mine feel very inflamed already and l think theyre getting thicker skin