Ra and now sjogren

I have had RA for 16 years. It has been well controlled but I have now got the syndrome of sjogren and seem to be getting ibs with it as well. Anybody in the same situation? Sjogren is very debilitating!

[Ali_H]

Hi MarieT,

The symptoms of what ultimately may prove to be sjrogen's has been the blight of my life for the past 6 - 7 months. Tuesday saw me at the ophthalmologist who has diagnosed Essential Blepharospasm-never heard of it until Tuesday but it sure describes my eye problems to a tee. My eyes are worse if I have neglected to keep my water intake up and if I'm not vigilant with my eye gels. I've tried viscotears and hypromellose with little success. I have also been lacrilube since November and have just started using Hylo-forte. It's also worth noting that when I try and 'fight' it or get over frustrated it seems worse. A warm compress seems to help.

Symptoms? In hind sight started about eighteen months ago with moments of rapid eye blinking (noticed by others and interpreted as a sign of 'stress') and has progressively got worse with dry, red itchy eyes and the rapid blinking is almost constant now with periods of me having to concentrate to get my eyes to actually open, eyes are very light sensitive to the extent that I can't be in a room with a dimmer switch on as my eyes react to their supple light flicker (my clock radio Lumi lamp is now out of action because it causes a 'fog' which persists when my eyes are open and closed), I wear prescription wraparound shades which helps when out and about as they not only take out the glare they also stop the breeze/cold air irritating my eyes. My regular glasses have always been 'reactalights' so go dark when outside but they were not enough mainly due to the wind factor.

Readings has become a chore, TV watching is more of a listening exercise and computer work takes 3X as long. Headaches across the eyes are a common feature for me (warm compress helps ). One bizarre thing I have found is that if I lightly flick my eye lashes the rapid blinking and difficulty in opening my eyes eases, the consultant was not surprised at this effect and assured me that I would not irritate my eyes further by doing it but would actually help them to relax.

I am waiting for results from sjogren's related blood tests ( anti-Ro and anti-La -also known as SSA and SSB) and there is a treatment for the Essential Bl......spasm thing - namely Botox injections around the eyes to stop the muscles twitching all the time apparently it works in about 90% of cases - the treatment will need to be repeated every 3 months or so.

If your Rheumy has mentioned possible sjogren's I would suggest that you ask for the blood tests - they are not conclusive but a a stepping stone in getting a diagnoses so the sooner the better really (I wish I'd asked back in November rather than leaving it until last week to ask as I would now be closer to getting effective long term relief - hey ho live and learn!

I hope that some of that ramble is or use to you

All the best

Ali

[Hidden in reply to Ali_H]

Thank you Ali, my problem is not so much the eyes but the mouth. It was enough for my rheumatologist to look into my mouth to know that I have secondary sjogren following from rheumatoid artritis. It is so dry and unpleasant. It is also making me anxious and tired. I hope they manage to help you with your eyes.

[Hidden]

Hi, I have similar problems. I think dry mouth symptoms mean a lack of an enzyme in saliva which starts the digestion of carbohydrate foods in ones mouth. (From school days, Ptyalin I think) Anyway, my own current theory (and I am not an expert!!) is that if I eat a lot of pasta, or bread, or potatoes, then my digestive system slows right down and gives me IBS symptoms. So I have tried to follow the low carbohydrate way of eating and it seems to help. Look up LCHF diets.

Sjogren's is such a complicated illness, affecting eyes, nose, mouth, digestion, etc. My consultant sent me for lip biopsies, parotoid gland scans, and eye tests.

My dentist is brilliant and has supplied me with special toothpaste.

My GP supplies me with Biotene products on prescription and lacrilube and Celluvisc for my eyes.

But the IBS is something I try to manage myself, as it hasn't been mentioned.

There is another group on Health Unlocked that you might find interesting. It is called TASSA, the Australian Sjogren's Syndrome Association.

Hope some of this helps.

[Hidden in reply to Hidden]

Thank you for your suggestions, Phoebe.

[Ali_H]

Hi MarieT,

Have you consulted with your dentist? Mine recommended using a toothpaste that has extra fluoride in it called Duraphat 500 (if you can get it on prescription do so as it's expensive!). It's not to be used daily but helps protect against the extra risks of tooth decay that a dry mouth causes.... At the first sign of extra decay we will go down the road of painting my teeth with a special enamel to protect them.

Good luck

Ali

PS the biotene daily toothpaste and mouth wash are also good but, again, expensive.

[Hidden in reply to Ali_H]

Yes Ali, my dentist has been very good and has given me duraphat. I also take pilocarpine eye drops orally for dry mouth and that seems to help a bit.

Thank you for your help.

[Hidden]

I've had RA for 27 years and Sjogren's for 24. Now have rheumatoid vasculitis too!! coped pretty well with the original two, but the RV is really getting me down. Hope you get some relief from yours mariet. xx

[Hidden in reply to Hidden]

In what way, poemsgalore? How have you been treated for RA and Sjogren?

[Hidden in reply to Hidden]

For RA I have had several types of treatment, culminating in 25ml MTX injections and 10mg Leflunomide tablets. I was on those for about 10 years. For Sjogren's, I have Hypromellose - preservative free eyedrops. Beconase nasal spray, and glandosane oral spray. I had to stop the MTX in January 2013, as I was diagnosed with breast cancer and needed to have chemotherapy starting in February 2013. After that, i had problems itching for 15 months, not connecting it to my RA. I had been seronegative for 27 years. In September 2014 my rheumy told me I had changed to seropositive, and that I had RV. It too affects my eyes, mouth and skin, among other things. So I had my Leflunomide doubled from 10 to 20 mg, was prescribed Prednisolone 40mg and put back on MTX 20ml injections. Pred has been reduced gradually and now on 10mg, but also had methylpred infusions 3x1,000mg and later 2x1,000mg. RV still not completely under control, and don't know which symptoms are RA, RV, or Sjogren's. It's a nightmare!!

[Hidden in reply to Hidden]

Poor you! What a nightmare!

[sylvi]

I have Ra,Fibro,Cfs and possible sjorgens as well and it is no fun,i don't have any answers for you i am afraid.I am not sure which causes the most of my problems. Hugs.xxx

[benjijen]

I have very dry eyes and mouth as well and thought it was just another symptom of the RD I had to put up with! I have bought some gel today and will give it a try. Don't know what to do about the dry mouth though as it is constant even though I drink loads of water throughout the day and night! I hope you get a solution soon and I will certainly be bringing it to my rheumy's attention when I go back in February.

[Hidden]

My rheumy has given me some eye drops that you take orally, they are called pilocarline eye drops. They seem to be helping my mouth. It sounds as if you are suffering from Sjogren! I find the fatigue and anxiety that goes with it the hardest.

[corrective]

I had ra for 29 years, developed felty syndrome, neutropenia which has now developed to blood cancer leukemia. However in that mix I developed Ibs, my immunologist put me on dairy and gluten free diet, I am now fine if I don't eat gluten! Good luck