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Rank: Member  Groups: Registered
Joined: 12/8/2009 Posts: 27
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Not sure if anyone remembers me. I was a member of the old site, joined this one when it started but haven't been on for ages.
I am Pat, living in Durham, have had RA for 4 and a bit years now. Started on MTX in October 2009 but have just been taken off it this week as my fingers were having cysts on them, so Consultant said we need to try something else. Really disappointed as the MTX did seem to do the trick with regards to pain etc.
So now on Lef, and am really worried about possible side affects and/or it not working.
So folks, please update me on what's been going on with you all.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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hello Pat I am still here christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Pat,
Welcome back!
Sorry to hear you are having problems. I have been on Leflunamide and had no side effects from it.
It didn't do much for me but a lot of people find it very effective.
Hope it works for you.
Doreen xx
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Rank: Member Groups: Registered
Joined: 12/8/2009 Posts: 27
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Hi ladies.
Dorat, I think that's what's worrying me most, that it doesn't do anything for me.
Since being on MTX my pain levels have decreased substantially and I've been able to do loads of stuff - very important given I have a nearly 11 month old baby lol.
I really don't want to be incapacitated.
I guess I'll just have to see how it goes obviously.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Pat,
With an 11 month old baby I'm not surprised you are worried!
The mtx should stay in your system for about 3 months, and the leflunamide can take up to 6 months to work.
If you start getting return of your symptoms before the leflunamide takes affect, ask for an intramuscular steroid injection, I don't know if you have had one of these before but they are very effective and can last up to 3 months.
Mtx did not do much for me either , but it did for you, so there is every chance of the leflunamide being just as effective.
There are lots of other drugs to try if this fails but , like you say, it is a case of wait and see what happens!
Take care,
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello welcome back rubba ducki yes i remember you. aww 11 month old baby how lovely congrats. . take care melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Wondered if the ducki would ever return from migration!
Welcome home Pat xx
Love
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hello Pat, glad you found us again. Hope you get some relief with symptoms and that meds start to help, Stay in touch, congrats on baby news  Lots love Liz xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Pat, Nice to see you again - how are your two little boys? Sorry you`ve had to come off the MTX, it`s a shame if it was working for you. I was put on leflunomide after trying & failing on sulphasalazine, MTX and cyclosporin. The lef gave me hot sweats, and then played havoc with my liver so I had to stop taking it. Which consultant do you see at UHND? Take care, Kathleen x
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Rank: Member Groups: Registered
Joined: 12/8/2009 Posts: 27
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Hi ladies and thanks for the welcome back.
I see Dr Chuck at UHND. I find her OK but slightly dismissive sometimes.
Well, I started Lef on Wednesday, and tbh I feel awful. Pain is fine, BUT I am really really tired. I got up at 9am on Saturday and then ended up having a 3 hour nap at 3.30pm that afternoon and still sleeping that night. My eyes feel sensitive and my sugar levels are all over the place.
Would it be the Lef this early on?
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Pat
Welcome back - and really pleased you are with us again.
Take care
Jeanxxx
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Rank: Newbie
Groups: Registered
Joined: 6/9/2010
Posts: 9
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Hi Pat I'm a new member but but relieved to hear that mtx worked for you but sorry to hear you can no longer take it. Can I ask how long were you on mtx as I have just started taking it and it seems to be working for me with no side effects ! Did you have to take any other medication with mtx ? There is so many questions that I would like to ask but they seem to have gone out of my head I seem to be losing my memory  Take care Sharon
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Sharon,
When I started taking MTX 6 weeks ago that was all they prescribed me, but after listening to people on here who were surprised I hadn't been prescribed folic acid as well I asked my doctor, but his reply was that they were giving me a large dose to start off with to get it into my system quickly and maybe later on give me folic acid, he said the folic acid reduces the strength of the MTX, although peoples views on this vary.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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Hello Pat
Am a newbie to the site , but not RA. Am sorry that you have had the problems with Methotrexate. I am still taking it , but have had breathrough flare so my specialist is recommending a 2nd DMARD. Changing meds seems to be a normal part of having RA unfortunately. Good luck with a replacement.
I look after my 4 year old grandson so know where you are coming from about the necessity of having effective drugs so that you can take care of your little one. Is your one walking yet?
Love
Katharine
x
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Rank: Member Groups: Registered
Joined: 12/8/2009 Posts: 27
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Sharon, I was on MTX for about 6 months, but the cysts on my fingers appeared about 4 months, and when they started to increase (I had 5 when I spoke to the consultant) I was taken off it. I was on Folic Acid which was to apparently help with side affects - just one a week. My friend is also on MTX but takes Folic Acid every day. Different consultant.
Whilst on MTX I was also on Diclofenac, Tramadol, Sulphasalizine and Folic Acid.
Now on Leflunomide (sp?) with all the above minus the Folic Acid.
Hi Katherine-S, no Oisin isn't walking yet. He was 6 weeks early so a little later in the gross motor skills lol. He just started crawling on Sunday there, but I suspect walking won't be far off as he's determined to get on his feet at every opportunity and balances just holding my pinky.
His birthday is in less than 2 weeks - I'm amazed my little miracle is nearly 1!
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Pat Welcome back! I think I remember you from the old forum but I did take some time out so may be wrong on that! I've had sero-negative RA for 22 years and currently on Enbrel, Prednisolone and Naproxen, just come off methotrexate due to serious side effects. Leflunomide didn't work well for me, only took it for a few months in 2001. Since then combination therapies have been introduced and these seem to give much better results. Back then it was a case of one drug at a time! Lovely to hear that Oisin is doing well and is close to walking. One of mine was so keen to walk (9 months) he was constantly covered in bruises from falling ... his twin brother sat patiently watching and didn't walk until he was 14 months. They are all so different and with hindsight it is so much better when they just 'stay put'!! Look forward to chatting with you, Lyn x
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