Just had the rug pulled out from under me......
theresa4
Member Posts: 696
Well finally got my appointment to see the immunologist regarding desensitising me to Toccillizumab. Had already been told NICE had authorised my using it for this purpose. Had already been prescribed it previously.
Well the Rheumy tells me my disease activity (which doesn't match my pain levels or lack of mobility) is too low to be able to go ahead I wouldn't get approval???????
The scan done on 1 hand and wrist ????shows some activity and inflammatory process. I assume they take that as the same in all the other joints in pain red and swollen they didnt scan?? Not enough to reverse his decision.
I get the impression (since it was a bare faced lie he told me) that there is either a funding shortage now or that they are not sure I will respond to the desensitising as well as they might like. Id rather be told the truth.
Despite telling them Im 41 I haven't been able to work for over 3 years, in constant pain and exhaustion , cant always wipe my own backside, tie shoelaces or fasten buttons and bras and struggle most days just to move around the house apparently Im ok.
Yet Apparently were deciding all this together!!??
He gave me my first inter joint steroid injection in my 1 wrist that was scanned. What about the other one which is just as painful??????? or my ankles??? shoulders knees...........???
Oh and has agreed to give me a depo steroid in july before I go to USA with my daughter for a global leaders conference and her 18th Birthday in August. As he felt that was a reasonable request!!
I pointed out Im 41 and not really happy that my questions hadn't been fully answered to which he replied 'if I had all the answers youd all be cured' ??!!****$$£$£%^ you can probably guess what that really says!
Im so upset Ive been having quite a bad time of late but this was supposed to be my possible silver lining now that's gone... How am I supposed to stay positive living in pain, exhausted, begging for steroid injections, and trying to manage on dihydrocodeine, amitryptelene and MTX. It wasn't supposed to be long term on dihydrocodeine now it looks like that's it.
I thought I was going to sort out the dates for the treatment so I took my granddaughter with me as her trike is a good rollator too. I couldn't really voice everything I needed to because she was with me. Although it was probably a good job as I was fuming inside.
Q. Is it normal for the injected joint to ache so much?
On a positive My granddaughter is not afraid of needles like her mum and watched him inject the steroid into my wrist quite intently.
I feel like curling up and crying right now I feel like Ive no hope and although my granddaughter just accepts I cant always cuddle her or pick her upand that some days grandma is on the sofa and cant get up. She tries to 'help' me get up and holds my hand to help me get to the toilet.. but that's not good enough for me? I know people are worse off and I am blessed with a lovely understanding near 3 year old granddaughter but its just not enough for me . I want my life I want to work and I want to be self reliant again. heres me with my petulant lip stuck out acting like a 2 year old stamping my feet (in my head anyway) and here I go tears streaming again I just feel so angry and useless I feel like giving up
Thankyou to those of you who've made it his far listening to my whinging I really appreciate all youre cyber ears right now..
Well the Rheumy tells me my disease activity (which doesn't match my pain levels or lack of mobility) is too low to be able to go ahead I wouldn't get approval???????
The scan done on 1 hand and wrist ????shows some activity and inflammatory process. I assume they take that as the same in all the other joints in pain red and swollen they didnt scan?? Not enough to reverse his decision.
I get the impression (since it was a bare faced lie he told me) that there is either a funding shortage now or that they are not sure I will respond to the desensitising as well as they might like. Id rather be told the truth.
Despite telling them Im 41 I haven't been able to work for over 3 years, in constant pain and exhaustion , cant always wipe my own backside, tie shoelaces or fasten buttons and bras and struggle most days just to move around the house apparently Im ok.
Yet Apparently were deciding all this together!!??
He gave me my first inter joint steroid injection in my 1 wrist that was scanned. What about the other one which is just as painful??????? or my ankles??? shoulders knees...........???
Oh and has agreed to give me a depo steroid in july before I go to USA with my daughter for a global leaders conference and her 18th Birthday in August. As he felt that was a reasonable request!!
I pointed out Im 41 and not really happy that my questions hadn't been fully answered to which he replied 'if I had all the answers youd all be cured' ??!!****$$£$£%^ you can probably guess what that really says!
Im so upset Ive been having quite a bad time of late but this was supposed to be my possible silver lining now that's gone... How am I supposed to stay positive living in pain, exhausted, begging for steroid injections, and trying to manage on dihydrocodeine, amitryptelene and MTX. It wasn't supposed to be long term on dihydrocodeine now it looks like that's it.
I thought I was going to sort out the dates for the treatment so I took my granddaughter with me as her trike is a good rollator too. I couldn't really voice everything I needed to because she was with me. Although it was probably a good job as I was fuming inside.
Q. Is it normal for the injected joint to ache so much?
On a positive My granddaughter is not afraid of needles like her mum and watched him inject the steroid into my wrist quite intently.
I feel like curling up and crying right now I feel like Ive no hope and although my granddaughter just accepts I cant always cuddle her or pick her upand that some days grandma is on the sofa and cant get up. She tries to 'help' me get up and holds my hand to help me get to the toilet.. but that's not good enough for me? I know people are worse off and I am blessed with a lovely understanding near 3 year old granddaughter but its just not enough for me . I want my life I want to work and I want to be self reliant again. heres me with my petulant lip stuck out acting like a 2 year old stamping my feet (in my head anyway) and here I go tears streaming again I just feel so angry and useless I feel like giving up
Thankyou to those of you who've made it his far listening to my whinging I really appreciate all youre cyber ears right now..
There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx
Theresa xxx
0
Comments
-
No wonder you're feeling angry and frustrated- this blasted disease is relentlessly horrible and you've had your hope washed a way for a while at least. I have no answers but just wanted to say that folks here are listening and sharing your frustration.
I wonder whether there is any mileage in going to Patients Liaison Service for advice/support?
Sending gentle hugs {{{{{{{{{{{{ }}}}}}}}}}}}}}}and positive thoughts.
Deb xx0 -
Thank you Deb for your reply and hugs they are gratefully received.
I don't want to go down PALS route as I don't want to be removed off this list as other rheumys don't treat sero neg RA ers the same way as he does. I know realistically they have good reason for withdrawing its just the lieing that irritates me. either way Im very upset at the out come regardless of reason. excuse the typing Im doped up on dihydrocodeine now after a busy day Im done in.
If anyoneout there is used to steroid injection into joint can you tell me if its normal for it to ache and throb very painfully?
and how long will it do that for?
Theresa xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
I'm not able to say anything but keep your chin up and keep smiling (((((HUGS)))))0
-
Thankyou sailrib
I kinda forgot how nice it is to get support on here don't really want to talk to my fam at minute cos keep bursting into tears, thankyou all xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
I'm sorry things didn't go as you'd hoped, no wonder you're feeling down!
As for the pain from your injection, I had one in my shoulder on Tuesday morning, and it's still throbbing now, it is beginning to settle down though.
Take care,
Numpty0 -
Am sorry you are having such a tough time,Theresa, and hope things will improve for you soon. It's OA I have but can empathise with the pain as I also am steadily going up the wall with it (unlikely to get up the wall in state I am in) but you will no doubt understand what I mean! Am sending some very gentle hugs your way (((()))) Beryl0
-
Theresa I wont be much help, but I can say one thing and that is dont you give up,this is the first hurdle.... you know you are suffering and not able to work...so I think it is time to make yourself heard...not easy when you are going through what you are..but we are all here behind you...if you need to rant go ahead...I will be thinking about you ((((())))xxLove
Barbara0 -
I really feel for you. I have been told I will have to wait 8 weeks before I see anyone else about any further treatment. I too am in agony (knees worse but range of other joints that join in) and it is soul destroying but least I have an end date even if it does feel a long way off. When you feel a little less battered hopefully you will be strong enough to continue to fight for your case.0
-
Thankyou Beryl & Barbara and Numpty and tubby
good lucvk with yours Tubby
Beryl no spiderman tricks
O boy 2 days of this pain in my wrist maybe I souldnt have bothered oh well live and learn.
I wont give up, I couldn't do that to my family but right now I just cant stop crying between all the pain the dopiness on pain relief I still feel like ending it all but I know I cant. Ive been here before when first diagnosed , then again when my mobility ssufferd and got through it though. although previousky Ive had hope now it seems im on the scrap heap worthless despite being only 41. Ill get through it just think this times going to be very hard. I know there are no cures just never expected my life would go this way. Ive so many dreams and plans that keep getting dashed , I never finished my degree because of pain and dopiness, my beautiful heels are gathering dust I never learned to salsa.
but I have learnt to type with one finger instead of touch type like I used to. :shock:
I do enjoy the days I can and make the most of them or half days but never feel well I haven't felt well for a long time Im sure you can understand that statement the rheumy kinda didn't get it. even good days are the ones I used to call bad before I knew what bad was.
wow this is depressing ..sorry..
thank you all for your supporet goodnight x
Theresa xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
which of the biologics have you been on before , they must of had funding for them so dont see why they would need to start over again just because its a new drug out
myself was on enbrel two years ago for few months & this year up me on Golimumab & said only take few weeks as funding was already there , dont blame you having a rant & dont see why your doctors cant help you0 -
HI Trepolpen
Ive been on 5
HUmira
cimzia
Enbrel
toccilsumab
and one other I don't remember
the toccillizumab is still trial I think? which is the last one I was on but had a reaction to it covered in head to toe itchy rash for 4 weeks at a time. I was supposed to be desensitised but according to rheumy no longer meet the criteria for biologics at this time.. when Im worse than before???? and was already approved??
I accept there are reasons Im upset regardless but don't like being lied to... give me a good reason I can accept that still be upset but feel like they are doing what they can lie and I feel worthless. I know that might sound strange but I just cant abide lying.There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Hi Theresa - boy do I get where you are coming from (including the lower lip and the tears, ooh that's me at times, for sure). You described the ups & downs of getting your hopes up so well. I've been there (well we all have of course), down when I couldn't face starting strong meds ie mtx.. up when they seemed like they might work.. down when they didn't, with a vengeance.. up when i started enbrel & it seemed like i'd got onto 'the good stuff' after mtx.. down a bit now it seems to be wearing off.
I'm sitting here sulking that we're coming up to the bank holiday which is a major trigger point for me to feel bad I can't go out, they were always a big deal to me so they really nark me now.. with a 30 yr old bike in the garage I can't part with. Blah.
However! Hang in there, there are always twists & turns with treatment & you might come back up a ladder rather than a snake again soon (to mix your rug metaphor!) So might I. Just sorry you've got a patronising twit of a rheumy to deal with, that's all you need. Some just seem to insult your intelligence as standard. The lying would drive me mad too, so does telling you half a tale, fobbing you off, & anything short of telling it like it is. I've had some horrors so you have my sympathy.
Chin up & thanks for sharing your very nuts & bolts heartfelt post.0 -
p.s. i did actually move hospitals to get a different team which worked well in my case, no chance you could at least see another rheumatologist?0
-
sleep evades me so I cameback
thanks toady
Im under the main guy who runs the rheumy dept so I would have to move hospitals and the guy at the pther hospital has a reputation for ignoring sero negative RA ers. its a nightmare at least under thisguy I do get MTX and steroids small compensation for his attitude.
Seems to be quite perverse that Im glad others understand as this means they like you are going through it too.
Hope your bank holiday is enjoyable
Theresa xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Not much sleep last night between stressing, pain generally and my newly injected wrist and my snoring OH :shock: :x
I wore my hard plastic resting splint for the first time in ages as moving my injected wrist hurt too much. Bad move as I cracked my hubby over head when he was snoring instead of the gentle repositioning of his head to reduce it
I don't wear them often as with tossing and turning I often hit myself with them and I find they cause more stiffness in the mornings due to staying in one position but if in extreme pain they help. Wrist still painful but at least it's mainly on moving it now with a residual throb I can manage. Won be getting dressed today though unless my OH comes back up before going work :shock: I'm bad enough with the RA generally but I literally can't use my right hand at minute with pain in wrist more bad news im right handed. This injection had better be worth it in a day or two. :?There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Hi unsure
Thanks for that I've ordered one today shipped around online and got one for £10 my hubby may thank you.
The pain in my wrist is agony but apparently I've been told quite normal a cortisone flare which can be more painful than the arthritis and lasts a couple of days. I can't do ice packs as they cause me more pain so it's drowned in diclofenac gel and strapped in a splint to keep it rested and still.
I have calmed down today not as emotional still very upset but not a lot of point in getting worked up it is what it is. I'm so bored though couldn't get dressed today and am useless left handed and on pain relief so been quite a duvet day.
Thanks again everyone for your support.There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
I'm so sorry you've had a bad time with the Rhummy, I wanted to send you some good vibes and ((((HUGS)))).0
Categories
- All Categories
- 21 Welcome
- 18 How to use your online community
- 3 Help, Guidelines and Get in Touch
- 11.9K Our Community
- 9.5K Living with arthritis
- 159 Hints and Tips
- 222 Work and financial support
- 764 Chat to our Helpline Team
- 6 Want to Get Involved?
- 396 Young people's community
- 11 Parents of Children with Arthritis
- 38 My Triumphs
- 125 Let's Move
- 33 Sports and Hobbies
- 20 Food and Diet
- 373 Chit chat
- 244 Coronavirus (COVID-19)
- 32 Community Feedback and ideas