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more rheummy more things! Options
jenni_b
#1 Posted : Thursday, March 04, 2010 11:22:09 AM Quote
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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 x
how to be a velvet bulldoser
mel1
#2 Posted : Thursday, March 04, 2010 11:52:50 AM Quote
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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
prioryc
#3 Posted : Thursday, March 04, 2010 11:56:51 AM Quote
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Oh Jenni,

Praying for some success and a rapid treatment this time. What is Rupus?

Eleanor x
Maria_R
#4 Posted : Thursday, March 04, 2010 2:19:55 PM Quote
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Fingers crossed. Good that you have a dishy doc .

maria xxx
BarbieGirl
#5 Posted : Thursday, March 04, 2010 5:41:58 PM Quote
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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!!!Smile
BARBARA
jenni_b
#6 Posted : Thursday, March 04, 2010 5:55:32 PM Quote
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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!
Huh

Jenni xx
how to be a velvet bulldoser
jeanb
#7 Posted : Thursday, March 04, 2010 6:29:02 PM Quote
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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
Damned76
#8 Posted : Thursday, March 04, 2010 7:22:34 PM Quote
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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
Glenys-H
#9 Posted : Thursday, March 04, 2010 8:06:07 PM Quote
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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
Calmwater22
#10 Posted : Thursday, March 04, 2010 11:10:31 PM Quote
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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
jenni_b
#11 Posted : Friday, March 05, 2010 8:20:06 AM Quote
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Well the knee is a happy knee this morning! Half the size of yesterday!BigGrin ThumpUp I am flushed and a bit buzzy (lovely stuff that steroid)RollEyes LOL Blushing Razz.

Richard is not happy. He says that he doesnt want me to have another drug that sends me out in a box.

Im afraid I got cross and said its alright for him swanning off to work at 7.30 and not coming home til 6 and leaving me on my own in hideous pain, not able to move, juggling in extra care and having no bloody life at all. As if I want to have the damn stuff in the first place. GRRRRR

this was not my finest hour.

he never says this sort of thing to the drs.

Then he went on about miraculous instant remission he had read about on the net........

told him in no uncertain terms that he needs to get real.

anyway, feeling flushed and illuminous pink, but with a much better behaved kneeSmile

Jenni x

how to be a velvet bulldoser
LynW
#12 Posted : Friday, March 05, 2010 9:14:03 AM Quote
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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 Mad. 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!!LOL

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

jenni_b
#13 Posted : Friday, March 05, 2010 9:32:46 AM Quote
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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 cupsScared 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 xx


how to be a velvet bulldoser
barbara-o
#14 Posted : Friday, March 05, 2010 1:09:25 PM Quote
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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

chockers
#15 Posted : Friday, March 05, 2010 1:16:23 PM Quote
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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
dorat
#16 Posted : Friday, March 05, 2010 1:20:48 PM Quote
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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
jeanb
#17 Posted : Friday, March 05, 2010 1:34:51 PM Quote
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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
Kathleen_C
#18 Posted : Friday, March 05, 2010 3:11:30 PM Quote
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Glad your knee`s feeling better Jenni - let`s hope other things improve soon.

Kathleen x

lyn2
#19 Posted : Friday, March 05, 2010 4:48:14 PM Quote
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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
Calmwater22
#20 Posted : Friday, March 05, 2010 6:01:53 PM Quote
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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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