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Discussion Starter · #1 ·
Hi everyone :)

I hope you are all keeping well..my sincere apologies for my rare appearances on the site :blush: although I haven't been around I often think of you all.

Just thought I would give an update about myself and I will try not to complain too much :wink2:
well, I have had a rough year :sad: my health has deterioated to the point were I hardly go out of the house anymore ( mostly only to college one day a week ) I have stopped driving and rarely cook and clean. This is mainly due to the constant joint pain I am in. and any sort of activity sends me into a worse flare up.

A couple of months ago I was refused approval of Rituximab even though I was told I had very high chance of getting it and had waited for 2 months..my new rheumy ( my previous caring one retired ) told me there was nothing he could do for me as the damage was done & I had to live with the pain and adjust my lifestyle accordingly :mad: even though I have managed quite well for nearly 16 years until now! oh and he suggested coming off my meds if I don't feel they are helping :eek:


I take immuran, hydroxychloroquine, celebrex, ibuprofen and codeine phosphate but they don't seem to be helping much at all. I am unsure as to whether it's the lupus or the RA acting up, I really don't know anymore.

However the good news is that I have an appointment at the Manchester Royal Infirmary on monday! I have waited 8 weeks but hopefully it will be worth it :hehe: so fingers crossed there will be some light at the end of the tunnel..I really hope so because I can't bear to accept that this will be the quality of my life at the age of 38 :worried: thank goodness my children are older!


oh I'm sorry for such a long post :eek: thank you for reading/listening ( if you still are :lol: ) and I hope everyone is as well as can be.
hugs to you all
love karen xx
 

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Hi Karen,

I am sorry to hear you are doing so poorly. Maybe the doctor at the Manchester Royal Infirmary will have another option for you other than just going off all your meds and living with the pain :mad:. Not a viable option in my book. I will have my fingers and toes crossed for you on Monday.

Let us know how the appointment goes.

Take care,
Lazylegs
 

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Hi Karen, sorry that you are feeling so rough. I really hope that your appt on Mon goes well. You deserve more treatment so that you can have a better quality of life. Let us know how you get on.

Take care

Deb
 

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Hi Karen

Im really sorry to hear how unwell you have been :sad: What an absolute toe-rag of a rheumy to suggest coming off your meds if they werent helping you :mad::mad: Damn smartass jerk :mad::mad: Sometimes I think these docs think we are making up symptoms to get attention :mad::mad: Who the heck would want to live with those type of restrictions in their lives :(

What a blow about the Rituxan :sad: It seems to be a bit of a lottery as to who gets it approved. I will keep everything crossed for your appointment on Monday. Of course it goes without saying that you need to impress upon them how poor your quality of life is at the moment and that you really want to try and improve it. Its not a big ask and if there is something else you can try then why not give it a go, I say....

I will be waiting to hear how you got on on Monday

Take care of yourself Karen and I hope things improve for you soon
Luv n stuff
Joan:rose:
 

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Dear Karen i often wander where you got to, shame you there monday well good you are,, im there wednesday at 11 30am could have met up ,you have had rough ride,

Really hope they will help you all the best Lin xxxxxxxx
 

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I am very sorry your having such a tough go of things and I will also be thinking of you on Monday. I will keep my fingers crossed that things go well this time.

Please keep us posted.
 

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Hello Karen and welcome back,

I'm sorry to hear how bad things have been for you and also about that stupid doctor's comments :mad::mad:

I really hope things go well for you on Monday :)

love and hugs :grhug:

Katharine
 

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Hi Karen,

Welcome back, have missed you on the site. I am sorry that things have not got any better and that the Rituximab was turned down...perhaps you need to lodge an appeal with the help of the new specialist!

Fingers crossed for your appointment on Monday, let us know how it goes!

Love
 

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hi Karen

So Sorry you having such a bad time of things. I would push for the rituximab
again. Perhaps you will have more luck on Monday. I to became so ill that I could barely move and put up with the pain for months. Its bad how you can become used to feeling ill all the time. All meds they tried on me didnt work till last resort meds. Now I have rituximab every 6 months and Im out of the wheel chair. When I was in hospital the Pallitive care nurse came and sorted my pain out. She was an angel. Cant believe I put up with the pain 4 so long. So you can be helped and life will improve.:p

take care dont take no for an answer

dee
 

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Discussion Starter · #10 ·
:grhug: Thank you ladies for your lovely kind words, it means a lot to me..
I will let you know how I get on monday, hopefully it will be good news..It can't be any worse than my last appointment :rolleyes:

It helps to know you share my feelings regarding my rheumy..I did actually doubt myself for a while after thinking maybe I should just learn to put up with it :worried: but thankfully I saw sense! I think after 16 years you learn how much pain you can tolerate.
He just seemed to base everything on the inflammation in my body even though I explained that although I have deformities I don't actually swell much and I am not extremely flared at the present time because I am living a very inactive lifestyle. however he could see the pain I was in but just didn't care :mad:

aw Lin what a shame I would have loved to meet up! I am seeing Dr Pauline Ho, apparently there was a mix up with my referral I thought I was seeing Dr Bruce :sad: but It would have meant cancelling this appt then waiting longer for one with Dr Bruce so his secretary advised me to go to this appt and then I could be referred to him once I am under their clinic :)

Dee, I am so glad you have found relief from the rituximab :) you are so right you do get used to living with the pain and we shouldn't have to..I keep telling myself there are millions of people worse than me & keep plodding on for the sake of my family.

I will post again on Monday, thanks again to you all for your support.
lots of love and hugs :grouphug:
karen xx
 

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All the best will be thinking of you, yes i see dr bruce, but sometimes you see another person anyway, all the best, and tell them everything, xxxxxxxxxxxx Lin
 

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Good luck on Monday. You have dealt with enough of a life alteration that they should be able to see that life is not active at all, but have had to give up a lot of it.
Sally
 

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Just adding my good wishes for monday.
I hope a tertiery centre like Manchester will have more clout to push for the Rituxin
Stay in touch:)
 

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Karen,
good luck and best wishes for your appointment at MRI.

Im under an endocrinologist (top Professor) at Manchester royal infirmary (over 15 years), live bout 15/20 mins drive from that hospital. I see him with my PCOS, my rheumy is at Salford Royal (formerly hope hospital) 5 mins from my house.
Manchester royal a fantastic hospital, im sure they will help you and get you to some point of meds to assist, ive always found it a top hospital, no problems.

very best wishes, take care.

chat soon
love diane XX
 

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Hi Karen,

I will be thinking of you on Monday. I hope it all goes well for you.
Love,
Lyn
 

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((((Karen)))),


Lots of hugs and good wishes going your way for todays appointment!

Love
 

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Discussion Starter · #19 ·
Thank you all so much for your good wishes, I really appreciate it :grhug:
my appointment went very well, I am so pleased! sorry I posted a new thread about it, thought it might get lost in here :hehe:

love and hugs to you all for your support, thank you! xx
 
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