Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Issey on April 16, 2009, 03:18:47 PM

Title: UK members
Post by: Issey on April 16, 2009, 03:18:47 PM
How many members on the list live in the UK? and what area are you? I am just trying to see if anyone lives near me and who hospital they attend;)

Also how about we all tell what products have helped us? I am using all the BIOTENE products - toothpaste - mouthwash and gel - But got some samples of BIOTEX and am hoping my DR will prescribe them instead as the mouthwash is not as sickly sweet as the BIOTENE. I also use viscotears gel at night and in the morning and drops during the day for my eyes.

Title: Re: UK members
Post by: Scottietottie on April 16, 2009, 05:17:51 PM
Hi Issey  :)

I'm in the NE of England. I have ultra sensitive teeth so I use Sensodyne although I did buy a tube of Biotene which I use from time to time.

I hold water in my mouth or suck Salivix pastels for a bit of spit. I use lacrilube at night and celluvisc and minims atrificial tears daytime. Boots now does a dry mouth mouthwash.

Whereabouts in the UK are you?   I know there is someone near Manchester, someone in Yorkshire, someone near Glasgow, someone in London and someone inj brighton. Now - who have I missed out!!!???????

Take care - Scottie  :)
Title: Re: UK members
Post by: Issey on April 17, 2009, 01:27:36 AM
Hi scottie
I live in Lincolnshire - it would be nice to know how members have got on getting a dx in this country and if there are any specialists that actually work with us rather than dismiss us!

Where do you get the pastils from? I have never heard of them:( Oh and the product I got free smaples of was called BIOXTRA - NOT Biotex - duuuurrrr I think that one is a washing powder <LOL> :-[
I put my eye drops `liquifilm tears' in the fridge and they are soooo cooling when my eyes get itchy:)

Title: Re: UK members
Post by: fluffiebunnie on April 17, 2009, 05:40:55 AM
I am in Kent.. I have bought all the Biotene products before, but the cost of them will stop me in the future.  My doctor prescribes me nothing for dry eyes or mouth yet as I have not been diagnosed.... but I do buy Optrex eye drops mainly.
Title: Re: UK members
Post by: wednesday mc haggis on April 17, 2009, 06:11:16 AM
hi issey

im the one in glasgow :)

  i found a private rheumatologist said it was stress lol, but my NHS rheumy dr donaldson a young woman about my age (37) didnt dismiss me she says its all fitting sjogrens but as im sero negative, im awaiting  a lip biopsy , which i see maxillo facial next week about, have had dry eyes since i was 7 years old, and all ive ever had was hypromellose, which just dont do the job!

  i use sensodyne toothpaste as well, as anything else makes my gums bleed badly, though ive not tried biotene products as yet, will ask my GP about your suggestion :)

    i seen opthamologist yesterday and he gave me quite a few products there and hten , he says everyone likes something different, so try them all and see what you like, i love the celluvisc, during day as my eyes are very dry and the drops just dont last anymore than 5 minutes and the pain in behind my eeys comes back, celluvisc is thicker and works much longer i found and not as messy as the viscotears, but i did like that too.

   i got lacrilube that i used last night and i liked that, so i ll be saying to my GP lacrilube and celluvisc please, though the opthamologist said there was another product that worked better, but its expensive so if these dont work for me he will try to get me it :)

   as for dry mouth treatment , i ll talk to rheumy about that again next visit, as GP seems to hate spending money, and the consultant i have would be able to ge tthem to prescribe it.

  hang in there with the docs, and keep trying has taken me many years to get someone to beleive in me, but finaly its happened, likely because its got to stage now that i cant do my nursing job and am in alot of pain, so theyve no other option , when it was just IBS eyes and mouth and skin, they looked at me like i was mental lol

 but sensodyne, celluvisc and lacrilube seem to be the ones i liked best :)

    T x

Title: Re: UK members
Post by: beverley on April 17, 2009, 08:10:59 AM
Hi Issy,

I'm the one Scottie forgot.  I'm in Cornwall.  I was diagnosed at the eye infirmary after a bout of very dry and sore eyes.  Following year I had a major flare and my GP referred me to a rheumatologist who is really supportive.  I am on plaquenil with Naproxen when I need it, lacrilube at night (i'd be suprised if you could get it on prescription because it's way cheaper to buy over the counter than the cost of a script) and viscotears preservative free single dose gel during the day (about six a day), Glandosane artificial saliva spray and orthogynest vaginal cream.  I also use Sensodyne (particularly like the new gum protection one which has reduced bleeds and ProNamel) and I use Beconase nasel spray to protect my sinuses.  It's all so glamorous!

Title: Re: UK members
Post by: Scottietottie on April 17, 2009, 08:44:46 AM
Aw - sorry Beverley! I have a feeling you're not the only one I forgot! I'd forget my head if it wasn't screwed on!

Issy - I get Salivix pastilles prescribed by my doc.

Fluffie - you really must ask your doc to treat your symptoms whether you have a dx or not. I agree he's unlikely to prescribe Plaquenil but there's no reason why he can't prescribe something for the dry eyes and the dry mouth as these conditions are not confined to SjS but both need relief!! You're going to have to hassle him!

Take care - Scottie  :)
Title: Re: UK members
Post by: fluffiebunnie on April 17, 2009, 10:42:01 AM

Fluffie - you really must ask your doc to treat your symptoms whether you have a dx or not. I agree he's unlikely to prescribe Plaquenil but there's no reason why he can't prescribe something for the dry eyes and the dry mouth as these conditions are not confined to SjS but both need relief!! You're going to have to hassle him!

Take care - Scottie  :)

Yes I know I have to be stronger.. I always feel so inadequate and like the doctors are doing me a favour even seeing me... I have an appointment on 5th May with my GP to follow up this facial palsy thing.. so I will ask her then to prescribe me some things... I will have to make a list of stuff that other people are getting prescribed... I dont have to worry about prescription costs as being a single parent and on a low income I qualify for tax credits and free prescriptions which does help.

I would like daytime eye drops and nightime gel for dry eyes and then some toothpaste and mouthwash items ... thats all I would need for the moment to keep me going.. but the doctors have always said they wont prescribe me anything until I am diagnosed  :-\

I will try on 5th May.
Title: Re: UK members
Post by: Chickpea on April 17, 2009, 11:08:30 AM
Hi Issey!

I'm in Brighton, probably the Brighton 'one' Scottie mentioned.  There's also someone in Kent, a couple f people in south London, a couple in Yorkshire and someone in Warrington, Cheshire.  We seem to be pretty scattered but sometimes in chat on Wednesday night - the best time of the week for hosted chat for people in the UK - we toy with the idea of meeting up.  Although whether we could find somewhere to host us I'd be surprised because it can get like a hen night in that chat room!  Wild, wild women ...

It's too far for you to travel but I see the neurologist at the Hurstwood Park neurological hospital at Haywards Heath and the rheumatologist at the Royal Sussex County Hospital in Brighton, plus other specialists at both hospitals.  They're good so I don't feel the need to go to London hospitals even though it's less than an hour away.

I don't have lots of dryness issues - mostly neurological - but I do find the mouth pastilles useful, plus the Boots Expert dry mouth spray.  But mostly little sips of water as Scottie says.  I haven't found the right stuff for my eyes yet, partly because the symptoms are changing so rapidly. 

What meds are you on?  If you're on lots, and using other products you could get on prescription, it might be worth your while getting a pre-paid prescription certificate which works out at about ?10 a month.  It's saved me a fortune.

Take care - Chickpea
Title: Re: UK members
Post by: Jayne on April 17, 2009, 12:32:11 PM
I'm in Surrey, SW London. Not officially diagnosed. Attending Oral Medicine at Guys for parotid gland issues.
Good luck
Title: Re: UK members
Post by: Issey on April 17, 2009, 02:54:07 PM
Hi everyone
glad I am not the only one here in the UK then<G> I see there is a UK forum but they dont have the chat groups and you have to pay 25 pounds to join - not sure what i would get out
of it :-\

I use the viscotears morning and night for my eyes - mornings seem the worse for me - I use liquifilm tears during the day - they are handy when driving or out and about as are a single dose and you can keep them in your

I also use sensodyne as well as biotene. my Dr will perscribe the biotene mouthwash - but not the other products?
my worse symptom to cope with is the night time dry mouth -  well thats an understatement
its so dry my tongue sticks to the roof of my mouth and I am constantly waking to take sips of water - I used to use the glandosane spray - but read somewhere it is bad for your teeth? So use the pastels from bioxtra - they sent me a free sample of everything mouthwash toothpaste spray pastilles and chewing gum:)
I have also started to write a sort of journal and I have found this helpful adding new symptoms as they appear and by doing so it has helped fit together bits of the jigsaw. Like about three years ago I had a full body aromatherapy massage ( I gift from the kids:) and the therapist said then how dry my skin was and she had never worked on anyone with such dry skin? I didn't think too much about it - but now it all makes sense.
But the journal will also help me when I go to see a new Dr as I can take it and use it or just say `here you go - here is my life make me better' <LOL>
Title: Re: UK members
Post by: Dolly Dimples on April 17, 2009, 03:24:27 PM
  Hi, Dollys' here in Northumberland..   My main issues are the dryness   (everywhere) for which it seems the Biotene comes out tops!

Fluffy     , ask  your Doc for  biotene Oral Balance mouth gel, it is far better than that Glandosane!  Scottie is right  (as usual)
he should precribe it wether or not you have seen a specialist..  I have not seen a Rhuemy for about 12 years!  I was sent to the eye infirmary about 2 years ago, but he was so horrid, and useless, I told my Doc about him and asked if I could have the Viscose Tears gel, and lacrilube, which I had read about on this site, and he prescribes it no bother!

   I see my own Doc every six month for  a review, and if I hear of anything that I think would be better than I am already using I ask them for a trial..
         I have the ribcage and upper back problems , for which I am on Naprosyn..    I am far from happy about this condition, but I try not to let it win, I shed tears, then slap my wrist and get on with it!    I am far better than a lot of some poor Sjoggies of this brilliant site!       Good Luck, Dolly.
Title: Re: UK members
Post by: lelole on April 17, 2009, 04:02:47 PM
Hi all,

I am not officially a Sjoggie yet, but am pretty sure I will be officially joining the ranks soon.  I am in Plymouth, Devon, and have only been under investigation for Sjogren's when my corneas started to tear back in January.  I have been lucky really as I kind of self diagnosed - after I had the eye thing I did a bit of research on causes as they were mystified why it had happened, and found Sjogren's.  The more I looked into ot the more I found the answer to random symptoms I had been aware of (and unaware of - such as dry mouth I took to be thirst) for a couple of years or more...

I have been taken seriously from the start, and have seen a great GP, a very kind Rheumy, and have been lucky it has all ahppened quickly as I have private medical cover with my work...Just waiting to see if I have SSA SSB antibodies, and have 1st appt with opthalmologist next week.

I am currently using: Paracetamol +codeine (allergic to aspirin and ibuprofen)
Viscotears during the day and 1/2 hour before bed (with lacrilube just before I turn light out)
Biotene gel and toothpaste (and lots of drinks and gum, aquadrops, and the lovely sugarfree bioled sweets in boxes by the tills in M and S).  Tried Glandosane and it was worse than useless for me, and vile to boot. (in my opinion, I know some like it!)
Sinurinse bottle and saline rinse and/or sterimar saline nasal spray for dry nose (with ky if it's really bad)...

It's great to have a forum to come to, and to know that there are a good number of Brits here too!!

Leah xx
Title: Re: UK members
Post by: Dolly Dimples on April 17, 2009, 04:40:37 PM
  Gosh Leah, for a newbie you certainly seem to have got it right first time!  Your Docs seem to be on the ball..
 Great , when one gets a good un!  Long may it continue for you,   ( I love Devon, my Mother came from Plymouth).
   Excuse me  Leah but... did I read right ? that you actually put KY in your nose?  Honest?

                                                                         Dolly x
Title: Re: UK members
Post by: Issey on April 18, 2009, 04:45:06 AM
I was born in Plymouth too ;D I left when I was 8 - but many happy memories on the Hoe!

Title: Re: UK members
Post by: lelole on April 18, 2009, 05:25:35 AM
Hi Dolly,

Yes, you read correctly - I did say KY - actually it's not KY it's a generic water based lubricant jelly, but essentially the same thing! I actually picked the tip up when I first came on here...can't remember where, but it definately works, and although it sounds disgusting it's actually lovely and cooling on a dry nose...I should add that this tube is kept for nose only!!!

I do agree I have been very lucky, though I have to say it was mainly because I did a lot of my own research and self diagnosed... though I know from my short time here, that for many people even that does not help!

Lovely to hear that you like Plymouth - (and Issey!!) it's not the best looking city, but it's a great place to live, and we have easy access to some gorgeous beaches and the moors!

Leah xx
Title: Re: UK members
Post by: loulou on April 18, 2009, 07:21:37 AM
Hi Issey


I am from Oxford. I have been diagnosed with Sjogrens, hypothyroid in 2004 and just in the last month Primary Biliary Cirrhosis.

I have to use Celluvisc for eyes during the day, Lacri-lube at night it stops my eyelid sticking to my eyeball during the night.
I use Salivix pastilles when needed if i am out, i drink regularly throughout the day. I take amitriptyline at night for the aches, pains and trouble sleeping.

I must admit i still use colgate for toothpaste, and plax mouthwash. I have hydro cream for dry skin.

I have digestive issues and have to use slippery elm powder as tea in the morning to sooth the acid reflux and gerd probs. I have a terrible time tolerating tablets, i found iron tablets very discomforting for the stomach, infact pain killers are becoming harder to tolerate.

I am under the local hospital for sjogrens and liver disease. But i see my gp on other occasions.

I never got onto the chat line on Wednesdays, probably coz i am dim wasn't able to do it successfully.

Please look afteryourself and take care.

Title: Re: UK members
Post by: Issey on April 18, 2009, 02:54:46 PM
Hi LouLou - I use slippery Elm for my dogs when they get tummy upset - I have not been able to get my head around drinking it myself though :-\ I cant drink milk and I feel it may be milky tasting? Anyway I take omeprazole morning and night for my gerd - it got so bad at one stage I thought I had an ulcer:( but these seem to keep my symptoms calmer.
I take ibuprofen for the pain which can be anywhere knees hips back neck at the moment in both arms:( I guess this is why the Dr's dispair of us they don't know what to treat first<LOL> so many symptoms!
Title: Re: UK members
Post by: Scottietottie on April 18, 2009, 05:08:17 PM
Hi Issey  :)

You're lucky they kept yopu on Naproxen! Once I was on Omeprazole - they took me off it.  :(  I really liked Naproxen but they reckon it wasn't good for stomach inflammation at all!

Take care - Scottie   (who is now on Tramadol and paracetamol)
Title: Re: UK members
Post by: Maggie12 on April 19, 2009, 02:30:46 AM
Hi All, It has been a while since I have posted on these boards, but I look daily.  I live in Berkshire, not far from Windsor.
I have now been on Planquenil for about 9 months, it took well over 6 months before I felt any better, but still get off days with Fatigue, aches and pains, I try not to take too many painkillers and fortunately I have not taken any for the past 2 weeks  ;D but I have just finished a  course of antibiotics for a gum and tooth infection, so not sure if that has helped me through any aches and pains? but I am sure they will return at some stage. I have had itching on my arms - but that seems to have disappeared and put that down to Planquenil, also night dreams - which I am afraid are constant since being on this medication, I never sleep solid for more than 2 hours at a time or less, and have not done for months.
I went back to my Rheumy in January, my 6 month review, my blood test was done when I went to him for the first time back in July. He said I definitely have Sjogrens my tests were positive,  but he doesn't want to see me for 12 months ? He did ask me to get a blood test done for Thyroid, but I have not been back to my doctor yet to get this done. I have to have more blood tests 2 weeks before my next appointment next January, so the results will be with my Rheumy when I make that visit with him. 
I also use Viscotears for my eyes, some days they feel dryer than others, I do have burning in my lower legs especially during the Summer months - the humidity seems to make them worse - so not looking forward to this coming summer only for that reason. I mentioned it to my Rheumy but he said it goes with my condition  ???. I actually wrote a list of symptoms and gave it to him at my appointment, he did read through them and gave me the list back. No comments were made just that he usually sees Sjogren patients annually.
I find if I do anything too strenuous like gardening and bending over weeding, my legs ache like mad, it really makes my fatigue worse, but it has to be done  ::). Good luck all of you - I will try to get on live chat again one Wednesday. God Bless  xxx
Title: Re: UK members
Post by: harrigan on April 19, 2009, 09:39:49 AM
Hello from Warrington!  Reading everyone's posts, I feel very lucky.  I had no major problems till Janary; my GP sent me to a rheumatologist, was seen the next week, diagnosed last month and started on Plaquenil and amatriptyline.  I have had blood tests every 2 weeks and see the rhemy again next week. 

It's great to hear there are so many of us here in UK - we should work out where is the most central place for us all and meet up!  xx Ailsa
Title: Re: UK members
Post by: Scottietottie on April 19, 2009, 09:50:28 AM
Hi Maggie  :)

My second visit to my rheumy was after 4 months, my third 6 months after that, my fourth was meant to be a year but my GP got it put forward a couple of months because of new symptoms and my fifth visit will be a year from the last. I pretty well expect to see him annually from here on in unless my GP ever thinks I need to see him sooner.

Unless one is flaring badly - there's not a lot they can do really and pain killers etc can be prescribed by the GP. Mine added amitripyline to the mix because of nerve pain. Seemed to do the trick.

Take care - Scottie  :)
Title: Re: UK members
Post by: Maggie12 on April 19, 2009, 12:13:07 PM
Thanks Scottie, I will make a note of the drug you mention, Amitripyline........perhaps I may try that and see if it helps with some of my burning leg problems.
I meant to mention when I read about KY Gel, I used to use that for nasal dryness, as one of my nasal passages seem to bleed occasionally, not sure if it has anything to do with Sjogrens or not, I used the KY Gel it did help, but I did read on these boards that to sniff KY could cause a lung infection, so I have not used it since, I have bought some Sterimar, Sea Water Nasal Spray, which clears nasal passages as well as the dryness.
Would be nice to meet up somewhere all of us U.K. Sjoggies.........I am sure we have alot in common  ;D.......take care Luv Maggie
Title: Re: UK members
Post by: Issey on April 19, 2009, 12:36:29 PM
Hi Scottie
did you misread my post? It was not me on Naproxen -  :-\

I too get very dry nasal passages that sometimes bleed:( not tried anything yet -
and am also dreading summer as react badly to insect bites and now cant take any antihisamines - as am dry enough:(
What a shame we are all spread about the country :'( - a meet up to have a good whinge about our symptoms would have been a hoot<LOL>

Title: Re: UK members
Post by: Scottietottie on April 19, 2009, 01:10:10 PM
Hi Issey - sorry - brain fart!  You said Ibuprofen not Naproxen. I'm not allowed Ibuprofen either - they told me to stay away from anti inflammatories.  If I get bad muscle pain I resort to it though because I know its alright to alternate it with paracetamol.

Sorry again!    It would be good to all meet up somewhere - mid country!!     :)

Take care - Scottie  :)
Title: Re: UK members
Post by: Jane on April 20, 2009, 08:32:01 AM
Hi....Isle of Wight calling !
I sometimes think I'm the only person in the world with this !
I'm not suffering as badly as some of you. I was on Prednisone for 3 months and it was wonderful (it even made me dust under the beds) but that was a year ago. Now I am all aches and pains and seeing my rheumatologist this week. So Prednisone or not. I am too fat already !
Title: Re: UK members
Post by: Chickpea on April 20, 2009, 03:37:40 PM
Hi Jane

We're near neighbours, well 'almost near': I'm in Brighton.

Good to hear that Prednisolone worked its wonders for you, although I'm sure the dust is quite happy under the beds again!  When I first started on a high dose I couldn't stop baking, although I wasn't that bothered about eating what I'd made.  The rest of the family got fat, but happy.

Did your rheumy start you on any other meds, for example Plaquenil?  It's the gold standard treatment for SjS and many people here have been on it for years and found a lot of benefit.  What about pain relief?  Have you tried different anti inflammatories or just paracetamol?

Let us know how your appointment goes. 

Take care - Chickpea
Title: Re: UK members
Post by: on April 21, 2009, 11:41:50 AM
Hi Issey
Not been on the forum for a while so just picking up the threads - I'm from St Helens which is between Manchester and Liverpool.  I'm lucky to have a good rheumy who dxd my SjS nearly 2 years ago.  Main probs for me is the fatigue, when I have a flare I can barely manage to get out of bed and down the stairs, plus problems with my knees and legs.  Also have the familiar dryness - everywhere!!!  Use Liposic for my eyes, salivix for mouth, and any moisturiser I can get my hands on for my skin.  Been on Plaq since dx, and no probs with it so far.  Nice to meet you,

Ailsa ... we must live quite close - whereabouts in Warrington are you?

Wen x

Title: Re: UK members
Post by: harrigan on April 21, 2009, 11:55:10 AM
Ooh yes, we do Issey!!  I'm fairly near the town centre - a couple of left turns from the lights at McDonalds on A49 south!  It's good to know you are close by.  Which hospital are you under then?  I'm at Warrington and my daughter is at Alder Hey.  My GP was going to refer me to Halton but the rheumy appointment came from Warrington and they have been fairly swift at diagnosing and treating, so can't complain.

 :D Does this make us rugby rivals then?!!!!  I'm not a real supporter but 2 of my boys are!  Good to hear from you xx Ailsa
Title: Re: UK members
Post by: nice gal on April 21, 2009, 12:00:33 PM
Hi everyone, I'm from Yorkshire too. I was diagnosed back in 1989 with SS and in 2007 with Non-Hodgkin's Lymphoma.

I use Clarymist, a spray for dry eyes that you apply to closed eyelids, sounds mad but it really works and is cooling, and less obvious to use whilst out and about than tipping your head up for drops. It's expensive (around ?12 for 100 mls, much cheaper if you buy online) but lasts for ages and doesn't have an expiry date once opened (well, it lasts for 3 years, but you'd be on your next bottle by then! Optrex have just brought out another version. I use Viscotears or similar preservative free drops otherwise, in the individual capsules, and Viscotears gel or similar at night. I recently tried Lacri-lube gel again at night but have again given up with it as I can't see the clock! Or read if I wake early.

I have been prescribed Salagen (pilocarpine) by the hospital I go to annually but I haven't got round to taking them yet. I used Salivex pastilles for dry mouth for years then switched to SST which stimulate the saliva production, but have recently been prescribed Salivea Orthana lozenges which are incredible and really does feel like you have saliva in your mouth. The first product I have ever tried which actually seems to work. I too read that it's not wise to put anything inside your nose, like Vaseline, petroleum jelly or anything other than a spray like Sterimar.

By the way, the UK forum doesn't charge ?25 simply for membership of the forum - it's the annual fee for joining the British Sjogrens Syndrome Association and it provides you with a regular magazine full of hints, tips, medical articles, the latest research etc plus details of all the groups all over the country. Well worth the money.

Tomorrow I am going to have my tear ducts cauterised (in one eye) and am very nervous.

Title: Re: UK members
Post by: harrigan on April 21, 2009, 12:43:59 PM
Hope it goes ok for you, Nicegal - thinking of you tomorrow with the eye treatment.  Let us know how it goes xx Ailsa
Title: Re: UK members
Post by: wednesday mc haggis on April 21, 2009, 04:42:07 PM
nice gal

best of luck and thoughts with you for your procedure tomorrow, thinking of you and as harrigan says, let us know how your doing, hopefully its not to uncomfotable, got my lip biopsy on friday, slightly nervous too, dunno why but i am , you take care, and hoping you get goof relief from it
T x
Title: Re: UK members
Post by: Scottietottie on April 21, 2009, 04:45:44 PM
Hi Claudia  :)

Welcome to Sjogren's world!  :)  I hope you get on well tomorrow. Keep us posted as to how it goes. There's been quite a few postings about tear duct cauterisation and they've all been pretty positive.

There is a hosted chat from this site at 7 p.m. UK time, Wednesday evenings so if you want to caht in 'real time' - do come and join in. (It's been described as being a bit like a hen party! - This tones down if a male sjoggie comes in and of course they are welcome too!)

The other chats are in the middle of the night UK time - which is good to know if you're an insomniac!

Take care - Scottie  :)
Title: Re: UK members
Post by: nice gal on April 22, 2009, 01:01:47 AM
Thanks all, and good luck with the lip biopsy, wmch - do I call you haggis for short? I had a lip biopsy done and it was completely painless, over in seconds and no complications. I even got to see the stuff removed, teeny strands, who'd think they could cause so much trouble?

I will try to drop in on the Wednesday night chat, but perhaps not today!  8)
Title: Re: UK members
Post by: wednesday mc haggis on April 22, 2009, 01:54:15 AM
nice gal

you can all me what you like :) i get WMC  Mc H , haggis, am not fussed lol , hope to see you in chat, great bunch in there

T x
Title: Re: UK members
Post by: suecy on April 22, 2009, 05:14:02 AM
Hi everyone - I'm from East Berks. I'm new to these boards. I've had Sjogrens for over 10 years but I'm experiencing a flare up so as you may see from my other post I am trying Imuran for the first time. I will see how I get on with it. Other than that I am on plaquenil which I have had no problems with. It's nice to know there are other Uk members out there!
Title: Re: UK members
Post by: jgillman on April 22, 2009, 05:26:50 AM
Hi I'm from Gloucester
I was diagnosed with sjogrens about 5 years ago but it only went systemic in the last couple of years. I'm on plaquenil, etorixicob, pregabalin and tramadol along with celluvisc, lacrilube etc. My rheumy is really quite good although I only see him every 3 to 4 months and sometimes it doesn't feel as though he is listening to me.  Drugs have  helped but not enough. I work full time and am really beginning to struggle to keep going.  I used to sleep for hours because of the constant fatigue but now I hardly sleep at all.  I get about 2 hrs a night and then wake up with pain across my whole body.  Consequently I'm tired all day and a couple of times have actually dropped off at work!  It's all so frustrating. 

It's great to know there are other UK members although I wouldn't wish this illness on anyone.
Title: Re: UK members
Post by: wednesday mc haggis on April 22, 2009, 07:55:56 AM

not good to hear your having a right flar eup , hope the imuran works for you and you get some relief from it, let us know how is going


ive had dry eyes and nose and other things i just never added up for 30 years, now mine shas gone ssytemic, not fun we know, and no we dont like the thought of anyone esle suffering this, but its good to share with those who have it, welcome to the forum , feel free to ask any questions, and get advice i know i do :)

T x
Title: Re: UK members
Post by: Scottietottie on April 22, 2009, 08:20:34 AM
Hi Suecy and Jgillman  :)

Welcome to Sjogren's world!

Wow - that's quite a few of us from the UK now!  Good to see that sjogrensworld is actually global! Well done the founders!

Take care - Scottie  :)
Title: Re: UK members
Post by: Linda196 on April 22, 2009, 09:31:00 AM
Hello and welcome Jgillman, and hello again Suecy.

I'm glad to see the word is being spread in the UK, hate to see so many people with this insidious disease, but it's nice to know that we all have a place of information and understanding to go!
Title: Re: UK members
Post by: Bonnie on April 23, 2009, 06:22:12 AM
Hi all,

I am from Menstrie, Near Stirling (Scotland)  I am still waiting on a rheumy appoinment (due to a clerical error).  I haven't been back to my gp in a few weeks.  Have had some more tests done, but have not been able to get time off work for a gp appointment.  I am going on holiday next week and I am feeling not too bad at the moment, so I figure I will just go on holiday and enjoy myself and try to forget about SJS for a few weeks.  I am now being tested for sarcoidosis (sp?) and had a brief google for this and have decided that until I know if I have it I am not reading any more :-)  I enjoy the wednesday chat's, when I can make it , but my poor laptop at home needs some intensive care.  Another thing I'm planning on dealing with after my holiday.

Take care all.
Title: Re: UK members
Post by: nice gal on April 23, 2009, 07:05:24 AM
nice gal

best of luck and thoughts with you for your procedure tomorrow, thinking of you and as harrigan says, let us know how your doing, hopefully its not to uncomfotable, got my lip biopsy on friday, slightly nervous too, dunno why but i am , you take care, and hoping you get goof relief from it
T x

Well, all's well that end's well. The procedure for cauterisation of the tear duct was not pleasant but neither was it terrible. I wouldn't rush to have it again, but if it were necessary I'd go right ahead. The worst bit is the anaesthetic injection but that's not as bad as I had been led to believe either. I can't tell you yet if the result will be worth the effort, but I'll let you know as soon as I can. In the event I only had the lower right one done, had a plug put in the upper right. I still have plugs in upper and lower left eye which were put in place around six months ago and that's a record for me as they usually fall out within weeks of insertion.

Fingers crossed your lip biopsy will successful.

Best wishes to all, Claudia
Title: Re: UK members
Post by: Scottietottie on April 23, 2009, 08:47:54 AM
Hi Claudia  :)

It'll be interesting to see how that works out for you. I hope its GOOD. If it is - will you have the other one done?  Keep us posted.

Take care - Scottie  :)
Title: Re: UK members
Post by: wednesday mc haggis on April 23, 2009, 09:00:14 AM
nice gal

oh glad its all over for you, cant be pleasant, but glad it wasnt terrible and bearable, hoping it helps you, and you get some relief, theyre talking plugs for me as well, so see how that goes, hope your procedure brings some much needed relief, and it helps you, as scottie says keep us posted

T x
Title: Re: UK members
Post by: beverley on April 26, 2009, 12:02:44 PM
Nicegal, I have punctal plugs in lower lids (couldn't get them in upper).  Well I say I have them - that was three years ago, I must look in mirror and see if they are still there!

Maggie,  I grew up in Windsor - it's a wonderful place and I had a great childhood roaming in Queen Anne's Forest and Windsor Great Park.

Leah,  I live in Callington, Cornwall, about 15 miles from Plymouth.  I agree with everyone, not pretty but a great city.

Isn't it great, I had no idea that so many people were from the UK.

I went to the rheumy Tuesday morning and Dr. Tuesday evening to update prescriptions.  Beginner nurse left me very bruised in both arms with blood tests (my veins collapse) and waited in Dr. (even though it was 7.20 p.m.) for over half an hour with no one else in the waiting room.  At end of consultation he said I had a great attitude to my illness (I try to see it as an inconvenience rather than a handicap, unless I am flaring and then, of course I am dead) and as I left he said, "but don't underestimate it will you.  Sjogrens can be very difficult and you need to be aware and remember that ..."    Just as I was feeling good (apart from my left knee, my feet, oh and my elbows first thing in the morning, and my dry eyes which are worse because of hayfever and...............).   Yunno what - he's right!

Title: Re: UK members
Post by: nice gal on April 26, 2009, 12:12:44 PM
Beverley, you are lucky if your plugs stayed in that long! I can always tell when mine have gone, by the dryness of my eyes, then I feel for the little bump to see if it's there or not. I must have had dozens of plugs inserted over the years, most fell out after 3 months, the shortest was the last one - one week. Anyway, the cauterisation seems to have worked and the expected black eye and bruising never materialised, though the duct is looking a bit swollen tonight. The eye is swimming in liquid when I put drops in, so I'm not complaining. I have the upper ducts plugged because I found they made a tremendous difference. So now left eye upper and lower and right eye upper are plugged, lower right is cauterised. And my tear production has begun to return after 20 years, so there's hope for us all...

I would have found your doctor's comments very depressing. When I developed SS over 20 years ago I would have been devastated to hear something like that. For me, after years of CFS and very dry eyes, the disease is definitely much milder than it was. Sorry got to go now, but will expand later if you like.

All the best, Claudia  PS lived near Windsor for 25 years, now my daughter lives in Twyford, Berkshire.
Title: Re: UK members
Post by: tabbykitten on April 29, 2009, 03:37:37 AM
Hi all - just seen this!

I live in Ripon, N Yorks but sadly there is no BSSS group around here. I would like to join the Wednesday chat and have tried but HATE the Microsoft software I have to download for it - far too intrusive and annoying... could the chat not be via some other platform - pref where we don't need extra software?

Anyhow, interesting to see where everyone is and what you are all using! Don't forget that all the Bioxtra stuff is available on prescription, plus Viscotears gel, Artelac and Celluvisc preservative-free eyedrops. I am on my third GP since returning to the UK and have not had any problems getting them to prescribe these items, which saves me a fortune esp with the prepayment certificate. Also don't forget the Recaldent Tooth Mousse, those of you with dry mouth. There is now a better one, called MI Paste which I will be looking for as my Australian supply is about to run out (nb - anyone has relatives in Oz - get them to buy it from a dentist there and post on - easily available and much cheaper!)

Just a note on dry nose - I also read that it is not good to use KY jelly or is not meant for this kind of tissue. I use sesame oil which you can buy easily and put some in a small bottle, to apply with a clean finger,  or in a small spray bottle. It is very pure (best from a health store) and has a long history of being used in this way.

I have plugs in my left eye, but have noticed recently they are becoming less effective.... anyone recommend a good eye doc/plug expert in York area? Think I will have them put in my right eye now.

Take care

Title: Re: UK members
Post by: nice gal on April 29, 2009, 04:06:20 AM
Hello Tabby, sorry can't help with duct inserters in York area, I go to Airedale General Hospital and Bradford Royal Infirmary. We live near Keighley and I did go to the Leeds BSSA meetings a few times but I think the group has dispersed now - the meetings were very well attended so it seems a shame.

By the way, if you only have the lower ducts plugged, might I suggest you try having the uppers done too? I found it made all the difference, though I can't work out why. I always feel sorry for those with dry eyes in the States, as they have to pay for plugs, and that would have cost me an absolute fortune over the past twenty years. I am on the largest size of plug now, and for the first time they have stayed in for months instead of weeks, or even days.

Thanks for the recommendations of mouth paste, I shall look that mousse up.

Best wishes, Claudia
Title: Re: UK members
Post by: nanny annie on April 29, 2009, 08:18:40 AM
Hi - another one from the UK - have only just read this post.  My name is Ann and I have posted on several occasions, but not too recently.  I am from Nailsea, Near Bristol in the South West of England.  My rheumy is based at the Bristol Royal Infirmary . I have not been positively diagnosed but he is treating me on symptoms thankfully.  I am on plaquenil, celluvisc and Lodine (anti inflammatory).  I have also been prescribed Salagen - but found them to be overpowering and was dribbling all over the place.  However, my dry mouth does seem to be getting worse - so I may have another try with them.Its surprising that there are so many of us now from the UK - I am very fortunate with being over 60, as I can now qualify for free prescriptions - I therefore get all my biotene products and dont have to pay for them.  However, my GP does tend to wince everytime I make a new request.  He did try to fob me off with a cheaper eye drop, but found nothing was available.  H told me that I should use the single vial drops and make them last for two applications.  Cheapskate heh.All the best to everyone. Ann
Title: Re: UK members
Post by: lelole on April 29, 2009, 12:52:38 PM
Hi Beverley,

You are virtually a neighbour then!  ;D

Funnily enough I was only in Callington yesterday, for work - I did a lunch presentation to the Community Nurses at Haye Rd.  We did toy with moving there at one point, but my OH works in the city centre so has to bus it and we decided it was too far.  :(

Your Rheumy sounds nice - is he at Derriford?  I am seeing Dr Hutton, who I believe has retired from the NHS, but luckily my work gives me health insurance so I have been able to see him at the Nuffield... He's a sweetie too, althoguh I have only seen him once!

Take Care

Leah xx
Title: Re: UK members
Post by: Issey on April 29, 2009, 03:48:45 PM
How nice to see this UK group grow:))) I also tried salagen but it made me sweat and dribble - far to strong and not what I was expecting - however it was a while ago and as symptoms have got worse I may try is again - wish you could just take it at night - but I would proably drown hehehe. Never heard of the mouth mouse but will def check it out. I got the salivix pastilles today from my Dr they seem OK but don't last very long? will keep on with them though.
I went to Dr's surgery today to look up my medical notes I just needed to see what had been written down and see if I could find a clue as to when all this started. i was almost at the end of the second file (yes my files are that big :-[) when I felt like Miss marple I found what I was looking for a letter from a consultant in London - before I moved to Lincs - he was checking out my knee pains - and the letter states - An x-ray of her left knee does not show any abnormalities at all I believe we are dealing with an auto immune polyarthritis YES at last someone else beside my Dr believes me! But this was 12 yrs ago and I remember him telling me untreated it could get worse - I just thought he meant arthritis:( I was only three weeks away from my move so did not follow it up . But what a great Dr to diagnose this well before I get the almost now full blown symptoms.
My latest problem is a severe pain in left arm making it almost useless - cant take a jumper off - feel like I want to rest it in a sling - but it even hurts when resting:(
doesn't SS suck:(
Title: Re: UK members
Post by: nice gal on April 29, 2009, 11:55:10 PM
You are both putting me off trying the Salagen which I have had in the cupboard for over a year. It was prescribed for me for dryness of the vagina (avert your eyes if you are embarrassed!) but I've had so many minor complications since I've never got round to starting the quite complicated regime.

Yes good of that doctor to spot your symptoms for what they were - I was extremely lucky to be diagnosed by my GP on the very first occasion I went to him with dry mouth in 1988. I told him I had difficulty swallowing and had been reading up and self-diagnosed hysterical something or other which caused a feeling of swelling in the throat but was all in the mind (I was recently widowed). He laughed and said 'have you got dry eyes?'. I had complained for two years previously of this to the optician who was clearly not clued up and just said there was nothing wrong.

By the way, I would get that pain in your left arm checked out pronto. It could be any number of things from heart trouble to tendonitis to frozen shoulder or referred pain from some other problem. Not wanting to worry you mind...   :o
Title: Re: UK members
Post by: MMCG on April 30, 2009, 07:37:58 AM
Hi there, I'm another UK Member.  I've only posted once to introduce myself.  I am not yet diagnosed by a Reumy, but my Doctor is positive that I have Sjogrens.  I only have high liver enzymes and a slight aenemia showing in my blood tests.  I only noticed this post today, because I have been feeling a bit run down lately and havn't been to the site for a couple of weeks.  I have had a severe pain again in the upper right abdomen, accompanied by a low-grade fever and quite bad joint pains.  My mouth and eyes are really bad at the moment and also the ringing in my ears and nausea/dizzieness.  When these symptoms subside somewhat, I usually get a nice crop of mouth ulcers and cold sores. Great when you know what is coming next.  (ha ha).  I live in a town in Fife, Scotland.  I take Naproxen, Co-dydramol for pain, and my eyes work well alternating Hypromellose/Viscotears.  I do attend the dry eye clinic, and the Doctor there asked me if I had a Sjogrens diagnosis yet.  So I guess everyone but the Reumatologist is convinced, but they have told me that my blood tests do not show positive yet.  Thank you for listening, and nice to know that there are others from the U.K.  Best regards.  Mary.
Title: Re: UK members
Post by: Scottietottie on April 30, 2009, 10:16:20 AM
Hi Mary  :)

I like Fife. After I graduated I went for my first job interview in Crail but it turned out the actual job was in John O'Groats! I had friends who lived in Elie.

I wish the rheumy would believe you! Then he could try you on Plaquenil or something which could help you feel a bit better. So saying - I'm not sure how it does with elevated liver enzymes.

Sorry to hear you've been feeling poorly.

If you ever feel up to it - do join in the Wed evening chat. 7.m. UK time.

Take care - Scottie  :)
Title: Re: UK members
Post by: MMCG on April 30, 2009, 03:15:43 PM
Hi Scottie, will join in the Wednesday discussion soon.  Perhaps I'll get more information than I have at present.  I try to stay away from the Doctor as much as possible, with the result I've had swollen salivary glands for around 3-4weeks now.  There always seems to be another symptom round the corner just now, and you feel you are always bothering the Doc.  So I'll join in on Wednesday, even to listen and learn.  Kind regards.  Mary.
Title: Re: UK members
Post by: SophiesMum on May 01, 2009, 02:12:32 PM
I live in Fareham near Portsmouth and have found a very supportive rheumatologist at Queen Alexander Hopsital in Portsmouth. Also the British Sjogrens Syndrome Association (BSSA)  is a good thing to be in despite the registration fee as they do send out a newlsetter and have local groups encouraging sufferers to meet together. I attended their annual meeting in Birmingham last year and found it so useful to meet other SS'S!!!! Also a couple of weeks ago the local NHS Trust arranged a connective tissue disorder day. They had to have all the SSS people together as there were so many of us!! I'm hoping to get involved in organising a local group but Lincolnshire is a little far!! Although we are seriously considering moving up that way. Where abouts in Lincolnshire are you?
Sara :)
Title: Re: UK members
Post by: Issey on May 04, 2009, 11:17:14 AM
Hi Sara

I live in between Boston and Skegness - it is very rural as i have 6 GSD's:) so need plenty of land to exercise them:)
And energy:(
Title: Re: UK members
Post by: fluffiebunnie on May 06, 2009, 06:00:44 AM
Hi Sara

I live in between Boston and Skegness - it is very rural as i have 6 GSD's:) so need plenty of land to exercise them:)
And energy:(

Sounds lovely  :)
Title: Re: UK members
Post by: beverley on May 07, 2009, 12:19:52 PM

Haye Road is my surgery.  I see Lindsay Robertson who comes from Derriford to do consultations at Liskeard Community Hospital.  It's really convenient because I teach at Upton Cross which is 4 miles from Liskeard and I can usually get an early appointment which means I don't mess up my class too much.  Lindsay is great.  She gave me her email address so when I'm suffering I can mail her for advice.  She is really understanding without being over the top.  She is full of common sense and although she says I should be working less she fully understands that I don't have that option.  I think I may have heard of Dr. Hutton.  The Nuffield is very nice, I visited a friend there once.  it's really good to know someone is that close by who understands what this illness does to you.

Title: Re: UK members
Post by: jaygee on May 10, 2009, 06:34:58 AM
Hi, I've just joined the forum today.  I live in the North West of England, near Wigan.

I have posted a new thread (probably on Page 1).  Would love to hear your thoughts and ideas.   
Title: Re: UK members
Post by: Scottietottie on May 10, 2009, 10:50:39 AM
Hi Jaygee  :)

If you ever want to 'talk' in 'real time' - Sjogren's world has a hosted chat on a Wednesday at 7p.m. UK time. 

Take care - Scottie  :)
Title: Re: UK members
Post by: abbytuttut on May 20, 2009, 03:05:58 AM
Hi I'm abbs and I live just outside Manchester,  Ive had dry mouth symptons for about 6 yrs now but umpteen doctors/hospital visits always ended with NO DIAGNOSIS? up until last year the tests for sjorgrens came back negative. 
I was diagnosed in July with Autoimmune Hepatitis and then got a lot of cramps and joint/muscle pain which my hep thought was Rheumatoid Arthritis,  so was referred to RA consultant who was a bit offhand with me and said it was Sjorgrens syndrome - that just off my notes and what i told him where the problems, he prescribed plaquenil and said come back in 3 months -  after 3 weeks on the plaquenil my LFT's shot to 800+ so had to stop that.  am now back on pred to sort out my liver and await to see the RA guy next month.  Ive had a  lot of bad reactions to medication since being diagnosed including imuran/Aza & plaquenil and due to this my hep thinks it is better to try to manage without any further medication, i  just wondered if anyone else has had problems taking these meds and what alternative their docs suggested?

Im off to go read more of this very informative forum, best lot of info I have found on SJ
thanks Abbs x

Title: Re: UK members
Post by: Linda196 on May 20, 2009, 03:36:10 AM
Hi Abbs, welcome to Sjogren's World.

Autoimmune hepatitis really complicates your treatment options, because so many of the current treatments can have an adverse effect on the liver, as you've already seen. Plaquenil is one of the safer drugs, as far as LFTs (liver function tests) are concerned, so youprobably won't want to try any of the others like Methotrexate, that starts out with warnings about the liver. Liver problems can even cause issues with "natural" supplements, like fish oils and capsules, which some people have found very helpful. With AH, you will always have to consult with the doctor who treats you (gastroenterologist perhaps?) before trying any drug, alternative or supplement.

We are building a large group of members in the UK, and maybe some of them might be able to suggest a new rheumy or hospital that might not be as "off hand", although your rheumy's plan (if not his manner) seemed to indicate that he at least was prepared to treat.

Please, read as much as you can, and enjoy're right, this is a great place for information, but also for support and entertainment.

Among our 4 weekly chats, there's one at 7PM GMT Wednesday, which we tend to call our Euro chat (although everyone is welcome) because it's the most accessable time for the UK and Europe. The link is at the bottom of my post. Please try to drop in, it's a lovely visit with fun people who understand.
Title: Re: UK members
Post by: abbytuttut on May 20, 2009, 03:53:29 AM
Hi Linda,
thanks for replying.
Yes I do seem to have problems with food supplements  and with the meds, although i try to compensate my bodies shortcomings by eating all the right foods.  I did seem to remeember him saying something about plaquenil probably being the safest to try me on due to my other conditions, but my toxicated brain doesnt remember an awful lot lately lol
I will try to bob in to the euro chat, it will be good to talk to people who understand........... i'm going through the "wow u look really well" phase with everyone at the moment because I am back on the pred.  And i do LOOK REALLLY WELL lol .......... My skin is a beautiful shade of yellow, my hair (what is left of it) makes me look like shirley temple after a night of ragties in her hair lol and im suitable fat (instead of looking like a skeleton)  its just inside my body is screaming at the slightest movement or touch, i cant see who i am trying to talk to, with my mouth full of cotton wool whilst desperately trying to stop myself from falling fast asleep yet again lol

Title: Re: UK members
Post by: Tryfan on May 20, 2009, 06:48:40 AM
You have a great way of describing your symptoms 'abbytuttut''!

I want to declare myself as a UK-er too!  I'm from Norfolk and have a diagnosis with a few 'most likely to have' phrases thrown in!  I am negative so far but positive for lots of symptoms!  As my diagnosis is recent, I'm still investigating things but it does help to know that I'm in good company here in the UK.  My name is Mary, pleased to meet you all!
Title: Re: UK members
Post by: Scottietottie on May 20, 2009, 04:26:53 PM
Hi Abbs  :)

Welcome to Sjogren's world. My son's just moved to Didsbury just outside Manchester because he got a job not to far away from there.

I'm sorry you couldn't tolerate Plaquenil. I don't know a lot about autoimmune liver disease although I'm certainly familiar with that 'fetching' shade of yellow. My daughter developed jaundice with glandular fever and I didn't know how yellow, yellow could be. She was dayglo. I hope that your rheumatologist and liver specialist can find a way of making you more cmfortable.

Take care - Scottie  :)   (up near Newcastle in the NE)