Author Topic: UK members  (Read 20549 times)

Issey

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UK members
« on: April 16, 2009, 03:18:47 PM »
Hi
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.

Issey

Scottietottie

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Re: UK members
« Reply #1 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  :)
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Never do tomorrow what you can put off till the day after tomorrow!

Issey

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Re: UK members
« Reply #2 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:)

Issey

fluffiebunnie

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Re: UK members
« Reply #3 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.

wednesday mc haggis

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Re: UK members
« Reply #4 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


beverley

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Re: UK members
« Reply #5 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!

Beverley

Scottietottie

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Re: UK members
« Reply #6 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  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

fluffiebunnie

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Re: UK members
« Reply #7 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.

Chickpea

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Re: UK members
« Reply #8 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

Jayne

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Re: UK members
« Reply #9 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
Jayne

Issey

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Re: UK members
« Reply #10 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 purse.car.

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>
Issey

Dolly Dimples

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Re: UK members
« Reply #11 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.
   
« Last Edit: April 17, 2009, 04:43:02 PM by Dolly Dimples »

lelole

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Re: UK members
« Reply #12 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

Dolly Dimples

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Re: UK members
« Reply #13 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

Issey

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Re: UK members
« Reply #14 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!

Issey