Author Topic: UK members  (Read 20586 times)

harrigan

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Re: UK members
« Reply #30 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
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

wednesday mc haggis

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Re: UK members
« Reply #31 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

Scottietottie

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Re: UK members
« Reply #32 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  :)
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!

nice gal

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Re: UK members
« Reply #33 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)

wednesday mc haggis

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Re: UK members
« Reply #34 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

suecy

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Re: UK members
« Reply #35 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!

jgillman

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Re: UK members
« Reply #36 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.

wednesday mc haggis

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Re: UK members
« Reply #37 on: April 22, 2009, 07:55:56 AM »
suecry

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

jgillman

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

Scottietottie

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Re: UK members
« Reply #38 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  :)
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!

Linda196

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Re: UK members
« Reply #39 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!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Bonnie

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Re: UK members
« Reply #40 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.

nice gal

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Re: UK members
« Reply #41 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

Scottietottie

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Re: UK members
« Reply #42 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  :)
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!

wednesday mc haggis

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Re: UK members
« Reply #43 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

beverley

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Re: UK members
« Reply #44 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!

Beverley