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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all
Been to see dr chris dishy edwards and he has had a look, a poke and a most important HMMMMMmmmm.
He has stabbed me knee.
the RA is in melt down. The azothyaprin isnt working at all (no surprises)
he is putting me forward for another treatment but in the meantime, wants to know if there are any new things I have heard of other than biologicals that I may want to try, I suggested the WORM POOP and he was keen to know all about it. cANT REmember it now so looking it up.
In the meantime putting me forward for Certolizumab (Cimzia)
Off to investigate further. Lumps are a concern. he mentionned, RUPUS- they think I may have this. he has overbooked me in 2 wks. Keeping a close eye.
Jenni xhow to be a velvet bulldoser
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Well Jenni it does seem that this dishy doc is keeping a close eye on you which is to be encouraged. I am so glad and I hope that you are able to try the new drug and for it to be the success thet you deserve it to be. Love Melanie
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Oh Jenni,
Praying for some success and a rapid treatment this time. What is Rupus?
Eleanor x
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Joined: 12/4/2009 Posts: 856
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Fingers crossed. Good that you have a dishy doc .
maria xxx
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Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, so glad you have been seen. I hope he can sort this out, never heard of the med you mention though!!! p.s. can I borrow your dishy dotor please!!! BARBARA
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Rank: Advanced Member  Groups: Registered
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prioryc wrote:Oh Jenni,
Praying for some success and a rapid treatment this time. What is Rupus?
Eleanor x Apparently it is a cross over between Lupus and RA. he is pretty certain about the schleroderma too. But he says it is rare for the RA and schleroderma to go together- it normally goes with Raynalds (which I dont have thankfully).
must make my own RA related bingo card!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Didn't you mention the gnats pee and the sheds, Jenni? As for the Rupus...hmmmm...very strange.
Thanks goodness you have been seen and Dr E is trying to do something to help after all this time. Just wonder how you feel about trying a something else? Are you in in the morning?
Much love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Am so pleased that someone is finally keeping an eye on you Jenni. You'll have to let us know what you find out about the new drug. Have you had any joy in getting some extra help?
Julie
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Joined: 12/4/2009 Posts: 336
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Hello Jenni, I am pleased that you had a good consultation today. I was thinking about you earlier today, about you seeing different Docs and not knowing what the other is doing and that in this day and age with all the technology that they could access one anothers information like in a pool of ideas. I was thinking that your case is unusual but perhaps there are Rheumatologists who are treating others with your problems and gaining some insight into what may help. I was just wishing that there is some way that you could be helped. So I hope they are on to something good. Fingers crossed for you. Glenys. x
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Hi Jenni so glad u seen dishy doc,aww Rupus yes heard about from the lovely lot on lupus site,glad hess eeing u again quickly prayers here ,much lv thinking of you melly cuddly cats make my world seem so much more fun
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Oh Jenni, so pleased to hear that you have at least got some relief from the knee. That is brilliant, even if everything else is duff at the moment! I was at the docs about my extremely swollen knees yesterday but he wouldn't inject; said he would've preferred to draw off fluid first then inject but unfortunately no fluid to remove it's all solidified synovium so requires synovectomy to remove. He's referred me to orthopaedics. Had my left knee done once and it was miraculous so just hoping they will do it again. I've had injections before and they just don't seem to work for me so probably would have been a waste. I'll just keep hobbling for now! I had a meltdown with other half yesterday so I guess we all do it at times. Much like you really, stuck here feeling c**p trying to organise stuff and get it done, no help, wingeing kids!! Aaahh ... life, such as it is at times, gets you down, I don't need to tell you do I?! Went into school to pick up some stuff only to be met by a member of staff with bad foot. Asked how she was and when I commented that I understand how she felt as I have RA she bleated "ah well Lyn that's old age creeping up"!! Well, as you can imagine, I could have hit her  . Another perfect day, not!!! Hope the flushed feeling continues throughout the day and things are better when Richard returns. Instant remission?? Wonderful do spill the beans!! Lyn x
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he didnt actually remove much fluid in the end- I was a bit worried as in the past it has been literally 3 cups but this time only 5ml.
there is synovial hard stuff in there too- cant do much about that but the steroid likes it in there and the local anesthetic helps too.
mum thinks the knee still looks too big and lumpy- it probably does really but I can do so much better this morning on it.
re the drugs- with a CRP at 92, there is no chance of me getting round the rheummy this time. I will have to have one of his drugs and I dont like them.
Although, strangely feel happier with the injection ones. perhaps ask to do the first in hosp?
love Jenni xxhow to be a velvet bulldoser
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Hi Jenni,
Sounds like things are moving, and like the fact that your rheumy actually asked you about what helpful treatments you may have heard about, is a real first in my book! Are you serious about the worm poop, don't laugh, is it something new, or am I being a bit slow on the uptake here?
Glad to hear you got some relief with your knee, as for the rest of the RA related illnesses, what can I say, it's beyond me and never ceases to amaze me what one can also get with RA. On a positive note, from now on it can only be on-wards-and-upwards for you Jenni, and will be keeping my fingers crossed that something will be found to help you manage this awful illness.
love,
Barbara XXXXXX
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Jenni Well R.a and scleroderma does go togeter .We are rare people but its commom at the royal free hospital London and the scleroderma soctioy may be able to help . Proff chris denton and Dame proff Carol Black might be who you need to be in concact with from Royal free .As when i go too the agm for the Scleroderma Soctioy i have meet 3 others with R.A and scleroderma and other with M/S lupus and scleroderma a few lupus/scleroderma . one of these people does not have raynaunds she has r/a and scl tell me she used to have raynaunds but not now .( i have her e.mail address ) And i e.mail Lisa who has both . Sometimes each runs niceley beside each other .Or one will take over ( domatite ) Would it be an idea to be checked out at the london free as they have a scleroderma unit and do know there stuff . i am so luckey my R.A man used to be part of the team there . love Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni, Glad your knee is feeling better and you are getting some positive treatment now. I had my knee stabbed last week, we'll be well ahead in the skiing now!
Doreen xx
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Think chrissie's idea about the Royal Free is a good one - if you can manage to get there? Love Jeanxxx
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Glad your knee`s feeling better Jenni - let`s hope other things improve soon. Kathleen x
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Glad to hear one little bit of you is feeling better, Jenni, now let's hope your dishy doc can do wonders for the rest of you! I too have never heard of worm poop and rupus, sounds like something growing in the garden!
Love Lyn
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aww glad to hear jab helping you jenni, yes its not easy is it but your life,body,health and as u said got to try as crp so high. i pray that new 1 does trick and knee settles more. rotten ra grr. yes rupus, ahh yes as lupus if only that u dont get rasied crp aprently only esr so if both shows ra and lupus [rayin for answers and more imporatntly better quality life for you hun all that agony not able move,hugs. take care lv melly cuddly cats make my world seem so much more fun
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