Author Topic: UK members  (Read 20503 times)

Scottietottie

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Re: UK members
« Reply #60 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  :)
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!

abbytuttut

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Re: UK members
« Reply #61 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

 

Linda196

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Re: UK members
« Reply #62 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 it...you'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.
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

abbytuttut

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Re: UK members
« Reply #63 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
abbsx



Tryfan

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Re: UK members
« Reply #64 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!

Scottietottie

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Re: UK members
« Reply #65 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)
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!