Author Topic: UK members  (Read 20546 times)

nice gal

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Re: UK members
« Reply #45 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.

tabbykitten

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Re: UK members
« Reply #46 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 suchlike....it 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

Tabby

nice gal

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Re: UK members
« Reply #47 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

nanny annie

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Re: UK members
« Reply #48 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

lelole

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Re: UK members
« Reply #49 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

Issey

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Re: UK members
« Reply #50 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:(
Issey

nice gal

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Re: UK members
« Reply #51 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

MMCG

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Re: UK members
« Reply #52 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.

Scottietottie

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Re: UK members
« Reply #53 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  :)
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!

MMCG

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Re: UK members
« Reply #54 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.

SophiesMum

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Re: UK members
« Reply #55 on: May 01, 2009, 02:12:32 PM »
Hi
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 :)

Issey

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Re: UK members
« Reply #56 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:(
Issey

fluffiebunnie

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Re: UK members
« Reply #57 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:(
Issey

Sounds lovely  :)

beverley

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Re: UK members
« Reply #58 on: May 07, 2009, 12:19:52 PM »
Leah,

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.

Beverley

jaygee

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Re: UK members
« Reply #59 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.