sjogrens!

[sarahj]

after reading my comments ive noticed a few replies have mentioned they suffer from sjogrens....i thought i was pretty much in the know about R.A.(via google).so i decided to investigate sjogrens further and its come to light that ive many symptoms i.e my eyes feel inflamed everyday,ive a blocked saliva gland,oral problems and aches and pains,even though my rheum consultant told me MTX was working.please can anybody relate to this as ive no support? thank you and hope to return the favour xx

[ariadne]

Hi sarahj,

The type of sjogrens we tend to get with RA is secondary - it doesnt tend to show the antibodies that go with primary sjogrens ( that is when you have sjogrens on its own). It is very common to have it with other autoimmune illnesses, and it shows up with lupus and sclero too quite often. There are a lot of drops and eye ointments that can ease the eye problems, and biotin mouthwash is good to use with dry mouth.

I suspect that methotrexate makes the dryness worse. I have had sjogrens symptoms that have flared and eased and flared for the past 6 years. I didnt realise what it was until I read an article online. When I started being really poorly with the joint pain the dryness rapidly got much worse and an opthalmologist tested and diagnosed the dry eyes as sjogrens. I have been taking mtxt for just 2 months and the dryness is worse, and both my mouth and eyes have needed constant treatment. You can buy a treatment called geltears in England which helps. But I get a prescription from opthal clinic for optive drops and an ointment for night use.

The mtxt clearly is not working if you still feel poorly and your rheumy has clearly missed the point! It can mask the blood/lab results, but if it doesnt work on your symptoms, then it isnt working!! My platelet count is normal for the first time in 14 years on mtxt, but it has not touched the other symptoms. Frankly I can live with a bit of bruising but not the joint inflammation pain and fatigue! If you have given the mxtx enough time to work, then I think its fair to ask to try another treatment. 6 months is usually enough time to tell if it will help you. It is far too risky a drug to take if you dont get a fair return for taking the risk, so I really think you need to explain to your doc that you are not getting a fair trade here.

I hope that this gets sorted for you, let us know how you get on .

Best wishes x

[Beth58]

Hi all, I don't think this is a problem with MTX I stopped using it some yrs ago and still have problems with dryness,

There are many treatments available for dry eye,nasal and throat. I've had dry eye/nasal passages for years, it was my optician who diagnosed it and advised I get eye drops and a nasal spray put on my repeat prescription (which my doc did). Next thing to go was my voice, during a routine visit to my GP's (for another issue) she asked about my voice and how long had it been so horse, next thing I knew was a referral to the ENT cancer unit which was pretty scary at the time.

Turned out it was dry vocal cords, I was advised to use a nasal tube and squirt a saline solution up my nose and down to my throat to vocal cords (not pleasant) and drink lots of water to keep my passages moist.

So the drops and nasal spray are used 2/3 times a day and constantly drinking to keep my voice working!

Good luck, hope you find the right treatments for you. xxx

[LavendarLady]

I've only had Sjorgens since being on MTX unfortunately. I spoke to my consultant having seen an article about it and he confirmed I did have a mild version. I do get dry eyes, nose and mouth. I use eye drops such as Viscotears for my eyes, a nasal spray and try to drink plenty to keep my mouth moist. Though I must admit since my cataract op last year, the eyes have been much better! Not quite sure of the connection there.

GP also suggested steam inhalations as well which help keep tissues moist and particularly good if you have a cold which dries you up even more.

Like Beth I have also lost my voice on occasions and often end up with a very sexy husky voice. Beth, that must have been really scary for you having to go to the ENT cancer unit but glad everything was ok.

I always find our local pharmacist extremely helpful in suggesting things to keep me on an even keel and he will also contact my GP as well to check it is ok to give me something to soothe whatever is dry and sore.

There is plenty of help out there - don't be afraid to get help and ask for it.

LavendarLady x

[nicky-nras]

We've noticed your question and we wonder if you've come across this source of information, British Sjogren's Syndrome Association (BSSA) at bssa.uk.net; Tel: [phone]; Helpline: 0121 478 1133 ? In addition Arthritis UK have a helpful booklet ' Sjogren's Syndrome' that can be downloaded from arthritisresearchuk.org and if you would like to call our Helpline at the National Rheumatoid Arthritis Society 0800 298 7650 we would be more than happy to help with any queries.

[Hidden]

Hi Sarahj, I am so pleased that you have raised this issue of Sjogrens. It is something that has troubled me for years. But no one I know has ever heard of it.

I always had a sore throat and swollen glands and blamed my teaching career and my students for ages! And my eyes used to itch or sting which I blamed on central heating. Then I had other "dryness issues" which I blamed on the menopause.

One day I was bored in the Rheumatology waiting room and picked up some leaflets to flick through. One was about Sjogrens. And there I was - all my symptoms, plus my migraines and my fatigue.

I mentioned my dry eyes to the consultant and she said "Oh, you probably need to see the Sjogrens expert in the Dental hospital." Which seemed odd. But no, it can cause lots of tooth problems too. I had lots of tests for tear flow, saliva flow, my glands were scanned, and now I have a whole lot more things on my prescription list.

I have got punctal plugs to stop my eyes drying, lacrilube every night, eye drops all day, special toothpaste, mouth gel and mouthwash, the list goes on. I wish I had been told what was wrong a long time ago. But who would ever imagine that RA can cause all these things?

Finally, I must say that for all its faults, MTX has helped a bit, as I can go for several hours now without needing to use my eye drops.

Oh, and one more thing, the BSSA mentioned above has been a great help to me.

[Treesha]

Hi just wanted to say that I was diagnosed at the dental hospital 20yrs ago and I find drinking lots of mineral water helps plus sugarfree gum and mints. the dry mouth mouthwash is ok too. I have severe dry eyes and have had 4 corneal ulcers and get so frustrated each time I go to eye hospital and they ask how long have I been wearing contact lenses? I do not wear lenses and wish they would just read their notes. Intraocular lens implants ( cataract ops) usually make the dryness worse but if the corneal nerve is damaged in the process this can offten mask the symptoms . I find keeping rooms well ventilated help with dryness as well as steam inhalation( as alreadly mentioned ) soothing with essential oils. Remember to have regular eye tests and dental checks for optimal health hope this helps xx

[ariadne]

came back to this question as my throat is really sore and dry and Im having difficulty swallowing, let alone speaking! I dont think the Mtx causes the problem, but I do think it may make it worse for some of us, Beth. I already had the symptoms for 6 years before starting the mtx. It got worse with the onset of the joint swelling, and has got steadily worse this past 12 months. But the mtx has made it unbearable. I use lacrilube at night too, and optive and gel tears during the day. optive has a preservative in it, which isnt great, but it still helps the dryness. Geltears is soothing and preservative free.I keep it in the fridge.

Room humidifiers can help, and other advice like sugar free gum, glycerin sweets (good for outdoor emergencies, but brush well after to help prevent decay) water by the bedside is a must too.

I get raw patches/sores in my nose and hadnt thought it was part of the sjogrens until I read here. Havent tried nasal spray yet, but will ask my doc about that.

Thanks to Nicky for the useful links!

Best wishes allx

[sarahj]

thank you,thank you,thank you to everybody that replied to my question. i made an appt with doctor on monday and will discuss everything with him then.also trying to get appt with dentist but they dont answer the phone.thanks again,never had anybody there to answer my questions before xxx

[Barnsleychop]

Hi, I have also got all the symptoms of Sjogrens and have an appointment with the GP Friday. I'm pretty certain that he/she will say it is a symptom of the menopause,so my age and yes, it's more then possible but such a coincidence that I'll push for tests running for, amongst other things, Sjogrens. I'll keep you posted. Best wishes.

[jinirules]

When I was 30 I had my first retinal detachment and then 3 years later I had it again in the same eye didn't think about it very much When I had my child at 27 my fluids was very less the doctor suggested in her notes possibility of sjorgen's I was fatigued went to the doctor nothing after 8 years asked my GP to test me for this and ra found I had all this all along. Happy I got a diagnosis but hard to managed the dentist can give you a special toothpaste refresh eye drops and biotene mouthwash I also had vocal nodes my voice did sound sexy and husky new job opportunity maybe

[Hidden]

This is an interesting thread as I've just posted a question about lip biopsy for Sjogren's. I also spoke to a very helpful person on the BSSA helpline who felt it might well be worth me seeing if I have had primary Sjogren's for years before the RA started. I think this is very possible as I've always had weak teeth, sores in nose and been generally very dry with many allergies and outbreaks of rhinitis and alopecia over my life. Also of interest if you have primary or secondary SS, is that it could explain drug intolerences if, like me you no longer sweat at all or produce tears and saliva/ moisture because your body can't get rid of toxins as easily. For me potentially the most serious and under-recognised effect of Sjogren's has been a progressive small fibre neuropathy which is being investigated slowly now.

[darb1 in reply to Hidden]

What test are you having done to find small fibre neuropathy? Where do you live? I had a lip biopsy 16 years ago. Personally, I would never do that. They botched up the inside of my lip, it is numb daily and I often bite myself while eating because of the small protrusion. Write me if you are still on this site. ([e-mail]

[Hidden]

Hi Darb1. I had many tests, including a lumbar puncture, to rule out MS and immune mediated peripheral neuropathy but am one the wiser for these.

I won't be having a lip biopsy but the Neuro thought I should still have a skin biopsy on my legs/ feet to see how advanced this SFN actually is. He says it is looking as if it's idiopathic ie cause unknown.

I think he and the neuro physiologist privately believe it is from one of the DMARDs I tried - most likely Hydroxichloraquine or perhaps MTX but the timing is more likely with Hydroxy. They say it may be permanent or may even progress. I've just started treating it myself with magnesium spray oil and B12 tablets. I've tried Amitriptyline, Gaberpentin and am now trying to wean myself slowly off Duloxetine. I do respond very badly to many drugs re tolerance. I live in northern Scotland.