Emergency rheumy appt
janie68
Member Posts: 1,186
I am at my wits end really. I started enbrel in October, didn't start working until February but then for the past month, I have been suffering terribly, hot swollen joints, can't cut up my food, can't walk, can't sleep etc etc. So I went to see biologics nurse on Monday did my DAS score again - 7.2 I think. So I had kenalog im injection which still waiting to kick in.
But it seems that the enbrel is not working so the next one will rituximab (sp) if consultant agrees. I am so down about it all, I had gone back to work but I am now off again. It's just so demoralising and I hate my body, my RA is so much worse than 3 years ago. Then you have to wait for new meds to kick in so I will be like this for a good while. I hate it.
Sorry to go on but I need your wisdom and support, my hubby is great and my 11yr daughter, my Mum and sister couldn't care less, chin up is what they say. Great. Makes me feel soo much better, not. But then they've always been the same.
Sorry about me ranting
Janie
But it seems that the enbrel is not working so the next one will rituximab (sp) if consultant agrees. I am so down about it all, I had gone back to work but I am now off again. It's just so demoralising and I hate my body, my RA is so much worse than 3 years ago. Then you have to wait for new meds to kick in so I will be like this for a good while. I hate it.
Sorry to go on but I need your wisdom and support, my hubby is great and my 11yr daughter, my Mum and sister couldn't care less, chin up is what they say. Great. Makes me feel soo much better, not. But then they've always been the same.
Sorry about me ranting
Janie
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Comments
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janie not suprised you ranting any one would people do not understand the pain and stiffness and all that goes with it sorry meds are not helping and you will have to start again but at least you have us now .you are not on your own we will be with you wether you want to scream moan or rant (((hugs))) to help keep you going valval0
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Thank you Val
that's is very nice to hear. I am trying to stay positive, at least I see consultant on 9 th July and biologics nurse again on 21st June.
Janie0 -
So sorry you feel this way and your mum and sis unsupportive. Its really hard when you have to restart drugs and wait the 3 months for them to maybe work. I do hope you get it sorted soon and find the drug that works for you. People can seem really thoughtless but they just dont really understand what you are going through.
Im like you between drugs and have all the problems you have with dressing, walking eating etc.. and not working now for 2 years :roll:
On the upside last week I did some gardening includign driving to my local garden store, baby shopping for my soon to be born 1st grandchild , clothes shopping for me although ended up buying on line as I either didnt like stuff or they didnt have my size :roll: I paid for each thing I did for a day after but felt good, this week Im a little immobile as the pain is horrendous and stiffness following short rest periods. Instead of letting it get me down this time I look at my beautiful planters with the colours starting to bloom in my garden and think I did that. Its really helping to keep my spirits up.
As for the people who dont understand and have not an ouncxe of compassion I say **** em!! I hope they are never given a visit from arthur but they may want to remember I never invited him either
Much love and hugs ((()))
TheresaThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
janie68 wrote:Thank you Val
that's is very nice to hear. I am trying to stay positive, at least I see consultant on 9 th July and biologics nurse again on 21st June.
Janie
positive is good it hard sometimes as arther can get to you but the more positive the better and smile when you can does make you feel less down. i am back in june to see what they have to say should have been march lol but they canceled gave me one in may knew would be away so have ended up till june do not mind as meds working and they at end of phone if need be lol good luck hope things go well sure they will it trial and error to find meds that suit but well worth the messing about when they do. valval0 -
Hi janie
Well i think i'd be feeling pretty bad too if I was you
I do hope the jab kicks in soon for you - maybe it will do today??
Sorry you feel the extended family dont understand - but we do and it sounds as though those closest to you do at least.
All I can offer is my support and best wishes.
Hope really hope things feel better very soon
Love and hugs
Toni xx0 -
Hi Janie,
I am so sorry to read its failing for you. I don't know a lot about the biologicals so have no wisdom but just wanted to leave you a shed load of support and hopes they can come up with something to hep you.
I so hope you get a decent appointment on the 21st and the 9th and keep in touch. ((( ))) and a ton of hope. Cris0 -
Thank you so much for your kind words. I have also decided to go to my local arthritis care group which meets once a month at Cannock hospital as well. I met some of them when I was at hospital on Monday and they were bloomin lovely.
Work is definitely on the back burner, luckily they know how bad I am and have been very good.
Has anyone been on rituximab?
Janie0 -
Hi Janie, Hope the injections have started to work for you.
Sadly not everyone can get there head round what is happening to us. My OH is brill when I'm in pain, but even he forgets at times. :?
Please tell us how you are getting on.
Lv, Ix0 -
Theresa
actually even if Arthur did strike Mum & sis theirs would be soo much worse & would expect me to drop everything for them. But just some acknowledgement and some actual kindness from them would be nice. Gggrrrr!!
Hope you all sleep well
Janie0 -
The kenalog injectio did work briefly for a couple of days but I am now back to square one. Waiting to hear back from biologics nurse as to what to do next. I don't fancy a steroid infusion, what would that do?
Janie0 -
Hello. Steroid injections can be very effective for some, with the positive results lasting for up to three months, even a little longer. It's worth considering. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi DD
kenalog injection is a steroid so have already done that. But thanks for your reply.not sure if an infusion is the way to go. I may be going onto rituximab now.
Janie0 -
Oh, sorry! I got the wrong end of the stick. Wishing you well. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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No probs DD!
Janie0 -
Hi Janie,
For somethings the steroid infusions are very good, I do know one can help me personally. I don't know about the bones though. I so hope you can find something to help you soon. Fingers crossed for you. Cris0
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