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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi just thought id update how things went for me today at RA clinic Right well firstly a very productive appointment. Had big Steriod inejction in you know where!! Diagnosis. My main problem is Rheumatoid arthritis with a Overlap of Systemic lupus erythemausous,alongside these fibromyaliga. Its highly likely it all may switch fully to Lupus being main problem but for now its more RA,due to my father having lupus which is VERY RARE in a man i carry most of his genes,along with fact his mum and gran all had lupus plus RA. So time will tell especially pregancy if it will fully swtich to just being RA or just Lupus or im hoping stay same mostly RA with overlpa of lupus. im also showing partial Hughes syndrome they will re test and if shows up full blown hghes then onto apsirin daily and monitor for risk miscarriage,when get to that stage for now not a concern. Im now off Mtx as of today and onto full dose of Planequil with a view to being able start tcc in 6 months time to be managed with Planequil and steriods by injection if start to need monthly injections then they will change me to tablet form ster so i will book me self in with Gp to go over all of this as folic acid will need changing to higher strength in prepartion for ttc. I currently have fluid on both knees this is new only started having ra in kness last summer. steriods should help if not back to have knees drained. im to take things easy so i shall go rest today. so they are now looking at the while picture. Im to wear strong suncream,and get e45 from Gp for skin on face if gets any worse then a referral to a Dermatolagist. Im now off Mtx as of today and onto full dose of Planequil with a view to being able start tcc in 6 months time to be managed with Planequil and steriods by injection if start to need monthly injections then they will change me to tablet form ster joints did there worst red and angry at examination as did facial rashes,fatigue. Thanks for reading and support. so in that case il keep up nras membership for now. 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: 561
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Hi Mel glad you now know what your dx is , hope the steroid jab works wonders and you can ttc soon
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Mel
I glad you felt the appointment went well. So sorry to hear about the Lupus but at least you know for definite what you are tackling at the moment. I hope the depo works well for you, you deserve a break, and that things start to improve with the increase in Plaquenil. Take care.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi melly, just come on forum, its annoying I always miss things but cant get on any earlier!!! Glad the appt went so well for you, not that you want to have auto immune illnesses, but you know what I mean!!! Its good to get the diagnosis, makes you feel like "see, told you so!!!" Sounds like they are actually sorting out the correct meds too, so that will help alot. Why are you off the mtx though? (sorry if I missed something about it) I hope you can get some relief now that they know what they're doing at last. Glad you arfe staying on here too, we'll miss you if you dont!!! Speak to you soon on lupus forum too. Lots of love x BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Melly I really must learn to do things in order as I have just posted on another thread before reaching this one!! Duh  Anyway, not good news but positive. A diagnosis was needed and a plan of action drawn up and hey presto you're on your way! So pleased that things are moving in the right direction for you Melly and lots to hope for in the future. Make sure you rest this weekend, feet up, good book, telly on and plenty of brewing up going on! Take care Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I know we've chatted but just to say I am glad you now know exactly what you have and can move on from there.
Praying the jab brings lots of relief and lovely pain free joints soon!
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thank u  feel so sad about it all tonight mum didnt take the news to well,rather not in good place expected i suppose. glad got answers though hard to swallow. whoever bought me these tickets id rather swap for 1 way ticket no none of tham at all.! i can say im so proud of guys hospital dcotors and consultants for spotting all the bits bobs,been very long journey from 17 to 38. buut sure il look on brighter side some time soon. 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,
How are you feeling this morning?
I hope you managed to sleep last night and it is beginning to do some magic.
God Bless,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Melly
I didn't realise you've been waiting for a diagnosis for so long. Let's hope they've finally got it right, then you can be treated properly.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi slept well after relaxing with music was rather hyper to say ;east,wepy litterally forced myslef to rest. still very swollen fingers,knuckles,knees,toes grr. hope it works. hubby doing meals. taken 1st full strength dose planequil today. tummy bit odd. will need look into info regarding RA and speak occupational therpaist anything else i can have to help,and whats happened to my shpwer its still not been done. aprently ive got flat feet so il need see foot person about that just insoles and to remove the hardskin i cartn do it with hands way they are. thks thinking of me. aprently rheumy says planequil is best drug for the lupus rashes and also for the fatigue from ra and lupus. so heres praying casue all i been wanting to do is sleep. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Dear Mel Sorry to hear about lupus and RA at present. Hope your meds get you to a beter place. I know its cold comfort with such a diagnoses, though at least with a proper clear diagnoses you can get on with your life instead of being in the dark. And now with this diagnosis you can get all the treatment you require and get your body under control. Isnt your hubby lovely to do the cooking. I dont know what I would do without mine, hes a babe.  love Mari xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Melly, I am so glad you had a productive appointment and that you are getting good care and diagnosis now! I have been reading your posts and can understand how complicated all the different conditions must be. My Rheumatologist told me years ago, too, that I displayed "cross over" forms of auto immune diseases and that over time he would be able to see which was predominant. I think at present I have Sjogrens and R.A. I wish you all the luck in the world with the Plaquenil. I have found it to be a fantastic drug for me for many years now. With kind regards and best wishes, Fiona  P.S Please keep us updated as to how you are getting on.
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 312
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P.P.S. Hi again Melly, just to say are you taking your Plaquenil immediately after food because that is really important. Sometimes they will prescribe a stomach protecting drug too. I have to take Pariet tablets as I had a pre-existing Stomach Ulcer before I got R.A. Please make sure you have a meal before every tablet and at the very least a snack. Best wishes, Fiona 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Yes, that's a good point, Fiona, I always take my Plaquenil right after breakfast.
Hope you're okay Melly?
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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lots of love Melly been thinking of you xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thank you yes always straight after food,and lots water. im also on Omprezole for stomach protection rheumy says i can stay on all meds im taking inlcuding the fibro one until preggy then have to review. gp wanted me stop everything!!! by way been told my gp and pharmcist dont TAKE omprezole sametime as planequil they confilct leave them 1 to 2 hours apart. so letter from rheumy will sort that situ out. il need to get some calichew wont i as steriods long term risk to bones. grr next time i will go earlier train to avoid rush hour. having to hold on like that makes my hands flare so im glad i got the injection in REAR END! so thats my lesson learnt RA does not allow me to stand on train or bus and thats that. some of what said at appointment was not encouarging . 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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Just try to take things a day at a time, Mel. I know it's hard not to think about the future but no-one knows how we will be in just a few weeks, ever mind a few months or years. Lots of the problems predicted for me haven't come to fruition and we just hope and pray that they won't for you either.
Take care
Love Jeanxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi hubby lookin after me last 2 days flare tingly hands,arms,feet,right leg nothing sinister just swelling. thanks replies. not thinking of future at all in negative nope fact very postive.(just steriod jab made me weepy yesterday lol,thatsgone now.not had flare like this long. but it will pass. 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: 1,081
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So sorry to hear this Melly - it's no wonder you feel tearful having to take in all the news you've had to take in - glad you have your lovely hubby taking care of you. But you MUST rest and take care of yourself. Will be thinking about you.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Thinking of you Melly - sorry to hear about the Lupus diagnosis. xx
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