Author Topic: UK members  (Read 20585 times)

lelole

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Re: UK members
« Reply #15 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

loulou

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Re: UK members
« Reply #16 on: April 18, 2009, 07:21:37 AM »
Hi Issey

Welcome.

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.

Loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

Issey

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Re: UK members
« Reply #17 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!
Issey

Scottietottie

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Re: UK members
« Reply #18 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)
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!

Maggie12

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Re: UK members
« Reply #19 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

harrigan

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Re: UK members
« Reply #20 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
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

Scottietottie

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Re: UK members
« Reply #21 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  :)
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!

Maggie12

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Re: UK members
« Reply #22 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

Issey

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Re: UK members
« Reply #23 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>

Issey

Scottietottie

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Re: UK members
« Reply #24 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  :)
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!

Jane

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Re: UK members
« Reply #25 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 !

Chickpea

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Re: UK members
« Reply #26 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

wen.uk

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Re: UK members
« Reply #27 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


harrigan

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Re: UK members
« Reply #28 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
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

nice gal

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Re: UK members
« Reply #29 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.

Claudia