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Rank: Advanced Member  Groups: Registered
Joined: 12/28/2009 Posts: 39
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hello everyone, I was reading the posts on this forum and became curious about the fact that many people seem to suffer from many disorders as well as RA, particularly Lupus and Endometriosis. I have had endo for over 15 years ending up having a hysterectomy. I was fortunate, as after several miscarrages i was at the time where i had decided not to continue to try to become pregnant anymore. In the last few weeks, i have been diagnosed with RA. I'm at a very early stage and coping at the moment with using only celebrex and lanzaprazole. I hope that RA will not become a nuisance, but time will tell. About the multiple disorders i was referring to, i came across this article: http://www.scienceblog.c...er/2002/F/20022313.html
You might find this interesting. Good luck everyone and hope that 2010 brings some pain relief to everyone ! xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Linda welcome to NRAS shame has be because you have RA. may i ask do you belong fertility friends i do for the endo,fibroids etc. yes its my post hun im suspected of lupus/ra or both-or still inflamatory arthritis linked to the lupus whcih in systemic lupus most have. it does seem once have 1 auto immune discease other follow. Thanks for link thats kind of you il have look. just popped on to see how you all are. do also post in newly diagnsoed with ra section i joined only last year wondrful support,friendships ive gained. all latest info. How are u finding your diagnosis,medication ect. so sorry to see how you have suffered with your endometroisis,mine is early stages so far though my relative is stage 3 toward stage 4 so like yourself no children. anyway back to youself hows your care etc hope the rheumatolgist treating you well. take care inky07 cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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That's so sad Linda and I am very sorry to hear you had to have a hysterectomy.
I hope your RA does not become more troublesome. Once one has one auto-immune disease it is more likely they may develop more, but not necessarily.
Thank you for the article too,
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello Inky and Amanda thank you for your feed back on my post. Hello Inky again  Amanda, it is unfortunate but i dealt with my endo on my own. I wasnt aware of any support groups and was given very little information by consultants and GP. I have put this episode of my life in the past as the hysterectomy has resolved the endo completely. It was shocking and drastic but as said before, i was in a good time to do it and that was 3 years ago. ... and there is a new threat upon me with RA. I thought that i had discovered something new about auto immune disorders, and there you are clever people, you all knew about it through, unfortunately having gone through it. I hope you both can have respite from pain to celebrate the new year  ... and i hope Amanda that you will not have Lupus, only if it can easily be treated and helps you get rid of some pain. Please let me know. About how i have found this early stage, for me it is a confusing time. Though the rheumatologist has said that he thinks that i have RA, i'm still at an early stage and i'm not sure what will be the road ahead. I'm also not very familiar with RA so i dont know how mild or severe this is going to go. I'm also perhaps hoping that i'm having a bad phase and that everything will be back to normal in a few weeks !! I'm sure you've all been through these confusing thoughts !! My consultant is good but i need to ask more questions. I tend not to ask because, during the appointment, i dont think of any questions but i will be better prepared for my next appointment. If you have any questions you think that i should ask, please let me know. Hope you have a good new year and wishing you both all the bests in 2010. Take care Linda xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Thanks for replying Linda, I have just written on your thread.
I am not awaiting dx of Lupus, that is the lovely Melly.
I do have coeliac disease which is also auto-immune...
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Linda your welcome anytime we can listen support we will. hapy new year i wish you.so sorry to see youve ahd tod eal with endo on your own do you know of the endo site its very good even for after surgery i joined didnt have to pay. il pm you the link. ps its me awaiting lupus diagnosis told me could be some years however rheumy did put me on lupus and ra compatible medication lupus wise it seems be helpig at least a little for which im grateful. so sorry you have rotten ra,glad u found the site. ps do you belong to the lupus site to its really good has chat room its free all latest info and quite few on there have ra aswell as lupus. il pm that link also. must dash got shopping being delivered. t care melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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hello again,
thank you for your replies. You have given me a lots of information and i will visit those sites Inky. Thank you again
Linda xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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your welcome. on subject Amanda is imuran as strong as mtx think il have look at meds site about it did you get any skin problems with it. 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: 1,582 Location: Oxfordshire
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In terms of strength I am not sure although I would say not. It is an anti-rejection drug fo kidney transplants which is why women can take it throughout pregnancy (ie, you couldn't possibly come off it had you had a transplant etc).
You do have bloods every 6 weeks or so.
I don't remember it affecting my skin however I was sweet 16 when I first took it....LOL
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thanks Amanda i looked it up on medicine .net yes also says not during pregancy. ok ta see what Rheumy has to say first. Rheumy /Gp are keeping close eye on my kidneys at moment through bloods and urnine joys! t 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: 1,582 Location: Oxfordshire
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It is safe during pregnancy but, of course, ALL medicines are never deemed 'safe'. (a little like some herbs).
It is, along with SLZ and Hydro, often used throughout pregnancy to keep the RA at bay, but after 4 months gestation it would be advised to lower the dosage if the RA is well suppressed..
A
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 ahh ok thanks amanda ahh yes i carnt have sulphazine until lupus is a no as it makes lupus flare so the rheumy says wont risk it. blast. thanks alot help apreciated dear buddy bud. hope you ok after all unpacking yesterday. lv 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: 1,740
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UPDATED TODAY Right well its now been 3 months since starting Planequil 200mg or Hydroxycholqourine as others know it. Bloods are bit errractic still,feel improvment in skin esr up then down then up crp up then down then up. skin rashes not completely gone by def an improvemnt. now i was prescribed this to see if helps rashes. facial inflammation. just had Gp appointment still discease active. so shall bear this in mind for forthcoming rheumy appointment. have had side effects not eyes at all so thats a big plus,nope for me dizziness so told to take in evening def made a difference. 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: 3,006 Location: Timperley
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This is so wierd, Mel. Since starting hydroxy. my skin has deteriorated. The whole of the right hand side of my face is now red, blotchy, scaly and lumpy. There is nothing at all on the left hand side of my face which is even stranger still. Isn't it odd how these drugs affect us all in different ways?
Love Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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hi jean yes very,thought i was only 1 odd side effects everyone else on here said eyes eyes and only 1 other headaches. weird. some my friends who have lupus for instance soem get headaches,some dizzy,some eye trouble and some skin rashes go worse ebfore get betetr or get rashes ddint have. but in general they are the minority and most i know sing prasies of planequil for lupus though, also amanda got on well on plnaequil for some time no problems we all so different,for me its the dizzness i shall tell rheumy as ears do feel bit odd and do get sinus trouble also balance issues. but also mtx amde me giddy for 2 weeks only day fo dose then it would go. so im hopeful it will ease off take it tonight as agreed with gp. hope your settles have u mentioned it do gp at all? should do. i got told off not going getting checked over but anyhow im ok now just a virus and skin well its there. t 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: 1,582 Location: Oxfordshire
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Hi Mel,
Well it's good news the Plaquenil has helped your skin, isn't it?
I am not unduly surprised it hasn't made a significant difference in the levels as it is known as the 'softer' option for RA as opposed to say, SLZ....
I have now been on it nearly two years (I think!LOL) and it is fine although I am SURE I can't see in the dark as clearly and driving in the dark scares e where it never used to at all! BUT I do have bad eyesight! LOL
Hope you're feeling better....
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hiya oh yes of course skin of any improvement is great. other bits umm yes but am only at min dose so heres to march. hope u ok. me pain alot less just ladies gyan stuff yukky bore bore. anyhow off to pack and watch movie weekend time wiht my hunny bun. enjoy weekend 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: 1,582 Location: Oxfordshire
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Yes you may be increased to two a day! I am only one one....and three SLZ still (no one has noticed!LOL)
What film are you watching? We never agree on films! LOL But I get first choice because it is the vigil of valentine's night! LOL
Valentine's Day was Marie's due date....weird! LOL
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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ahh naughty naughty but i do understand lol the battle of the pills!!! film ohh don bought 3 big dvd sale at sainsburys. 2 romantic comedys 1 action. dont mine im totally zonked out gynae trouble. yes may up or may not depends what he says re side effects.lol seem be having a list of emm. melly cuddly cats make my world seem so much more fun
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