Can Sjogren's be intermittent ?????

[Jillymo]

I am awaiting a Labial Gland Biopsy for Sjogren's due to my bloods being negative even though I have all the symptoms.......or should i say did.

My mouth has returned to being moist again ! The saliva can be rather sticky at times but my mouth is nowhere as dry as it was.

My eyes are still troublesome & my tear ducts have been plugged..

My skin is also very dry & very flaky even in my ears causing irritation, the hair & scalp are also very dry.

A recent visit to Bath Hospital has shown that I have some cervical lymphadenopathy !

My question is can sjogrens symptoms come & go ? My mouth has been so dry in the past I have had blood in my mouth & my eyes so dry my eyelid was stuck to my eyeball.

Now my mouth is moist again I cant see how this biopsy is going to show anything up.

Jillymo

[MaryF Administrator]

Hi, I hope this is useful to you, a medical paper discussing the flare activity of Sjogrens Syndrome! rheumatology.oxfordjournals...

MaryF

[Jillymo]

More than helpful Mary......your a god send. Thank you x

[Manofmendip in reply to Jillymo]

Hi Jillymo

I can't remember if you know about our APS South West Group that meets at the Royal National Hospital for Rheumatic Diseases in Bath.

Best wishes.

Dave

[Jillymo]

Hello Dave it is nice to know your still on the site I thought we had lost you.

I remember you telling me about the meetings in Bath before but I am unable to get to them, I am based in Swindon.

Hope your keeping well & still singing in the choir......I hope I have got the correct Dave.

Nice to see a photo of you, now I can put a face to the mailings.

Take care

[Carole-J]

I do not know if the Doctors would agree about that but my Sjogrens is intermittent. I always know when it is active and it is active more and more. I was told that it dies down at a certain age-it doesn't

Keep well Carole-J

[Jillymo]

Dont say that Carole i'm 63 in June, how long do we have to for it to die down. ( ho joy )

Click on Mary's link above I think you will find it interesting.

Did Sjogrens show up in your blood results, what i'm trying to ask is how were you diagnosed.

Jillymo

[wales]

I have sjrogens along with APS and my bloods are negative,they have been for 7 years but i have all the symptoms and i have responded well to treatment,personally my sjrogens can be diffferant every day some days my mouth and eye are really bad the next day they are much better so i just treat the symptoms eye drops and i chew chewing gum if my mouth is dry.Recently i have been attending the Dental dept of a London hospital for dental care as i am on warfarin,they wanted to do abiopsy on me but when i discussed this with Prof Hughes he advised me not to go ahead as this is what they did 25 years ago at the hammersmith Hospital to get a diagnosis of sjrogens,and it is no longer used or necessary to obtain a diagnosis of sjrogen.Its worth thinking about as will the outcome benefit you or the dr and will it change your treatment.Good luck and let us know how you get on

[Jillymo]

Thank you for contacting me with regard the sjogrens, how I wish I could get to see

Prof Hughes.

Is that all the med you take for the sjogrens, just the eye drops ?

I have ointment for the night, drops for the day & a mouth spray.......it tastes horrid.

I'm seeing a consultant in Bath & she has recommended the lip biopsy !

I now have plugs in my tear ducts to try & keep a bit of moisture in because my eyes are so dry. I have even taken photo's of when I am really poorly, but no that's not good enough.

I'm not sure if this is sjogrens or lupus but it's hard work trying to get a diagnosis, the chronic lethargy that go's with it is hard to cope with.

Funny you should mention the dentist I have an appointment tomorrow, I dont know if your the same but I have noticed the gum's are receding.

I will let you know if & when I get an appointment, everything is so long winded in the west country..........i'm coming to Wales.

Jillymo

[wales]

Hi Jillymo,I only use eye drips when i ned to you yours seem worse than mine,I reccomend you see Prof Stamford at st Thomas,s hospital he is excellent and very understanding with sjrogens,as for my mouth my gums are receding i have to go to the hospital as my dentist wont touch me.Forget the sprays etc they are all useless try chewing gum or lemon sherbert sweets they sell them in Marks and spencers.Iam on a lot of drugs and although a welsh lass i live in the south east.i first saw Prof Hughes 5 years ago and he saved my life i was in a poor state of health but now i am much better.he is one of the consultants at the london Bridge Hospital .If you can go there it would be benerficial to you I still go there every 6 months.i also have an excellent NHS rheumatologist who does shared care with Prof .Hughes .Hope you get sorted out keep in touch

[Jillymo]

Hello again, I went to the dentist today ! My gums are also receding, your right the sprays & gels are a waste of time the dentist now wont's to see me every 3 months.

Gum I have but you be careful with the lemon sherbert sweets I hope they are sugar free.

Did you see these profs private ? I could pay a one off private visit but worried about how much all the testing would cost me plus how I would get there due to not being a car driver.

I used to attend St Thomas hospital many years ago when I lived in Berkshire, sod's law now I need to be seen by them.

May I ask if you have Hugh's ?......I dont think I have got that but have Lupus symptoms, fibro myalgia, thyroid plus para-thyroid problems.

I am so pleased to hear your getting the care you need, all I have to do is try & get the same, I am seeing a rheumatologist in Bath.

Bless you you take care. Jillymo x

[tim47]

Hi, I have had most of the symptoms but 'fail' the usual tests. I saw a dental specialist at Guys on referral by my dentist. She declined to do the lip biopsy because of the warfarin and the fact that a formal diagnosis would make no difference to treatment. I may have Sjogrens, or it may be drug induced.I now see a Sjogrens specialist from Swindon and have gone on to PILOCARPINE (SALAGEN) which is a great help. That said, before the improvement from Salagen,my experience was that, like many Hughes symptons, it can come, go and vary in intensity.

[Jillymo in reply to tim47]

I am the same Tim & fail when it comes to the bloods, from what you read on here this is not uncommon.

I have just been to the dentist & he said " my gums are receding quite fast so he wont's to see me every 3mths ."

The lip biopsy is now not going ahead as I have made some progress & going into hospital over night for further testing........result at last.

I have not heard of Salagen, I use Glandosane, various eye drops /ointments for my eyes that have now been plugged.

Biotene toothpaste is used for my teeth together with gum gels, creams for my skin are prescribed & I buy special shampoo for my hair............scalp & hair very dry.........ho joy by the time I have finished doing all that lot it's time to go back to bed.

It is the chronic lethargy that get's me down it really is disabling, this mixed with fibro myalgia & all my other illnesses is not good.

I havn't got hughs says she with fingers & legs crossed.......but have had the sticky blood & was on asprin for a while but taken off due to stomach problems, I have had an ITA & this worries me.

In hospital tomorrow ( Mon ) So I had better get some bit's sorted out to take with me........I pray I get some help with this misery. Jillymo