Ive just been dropped for biologics

theresa4

Hi all
just 3 weeks before my new biologic was due to start I get an unexpected appointment with the arthritis consultant. Im now told I cant have toccilizumab as I am not showing enough swelling and joint pain (despite being on the baclk of a steroid jab which is running out!) also the seemingly familial background of a bowel disorder may prevent me from having it anyway and on top of that my now newly classed ear and throat infections are now regular enough to have concerns.

Thats all well and good but I feel awful my joints swelled perfectly yesterday just a day late for my appointment (probably the stress) I couldnt walk without help or move my fingers due to pain.

The registrar whom I saw first has re diagnosed my fibromialgia (how kind of him to tell me something they already told me months ago.... he looked so pleased with himself stupid a@@ )

He then told me I needed to excercise more ( yes Im fat as he gave me that look of this is your own fault...) luckily my rheumy nurse was there and pointed out that I walk my dog regularly the distance dependant on the day.. and I do tai chi, and I go swimming when I dont have ENT infections.. otherwise my hands may have been hurting much more after planting one on his smug chin!! :evil I had a good figure til \i got this damn arthur and I used to use my gym we have at home, I used to go hill walking, bowling, dancing until arthur put the brakes on so yes im overweight I dont over eat I dont eat rubbish as my food intolerrances dont let me so why does he have to make me feel like Im responsible for my pain and I cant help feeling that some of the drugs Im on have helped the pounds gather. I cried most of the day when I got back on Tues aft and still feel like crying now. I felt so insulted and pushed out. I burst into tears in the room with him and he couldnt wait to get rid of me Im so scared that I wont get help when arthur gets a grip of me when my steroid is completely gone hes already trying hard.
Thankyou for listening I just needed to let this out. Im going to the park with my daughter and granddaughter now as my daughter doesnt want me on my own not sure how I will manage the walking but she promises we will sit down as much as I need..

Poppyg1rl

Oh Theresa,
You Poor love, wish I could give you a big hug, you sound so (rightly) low :sad: what is wrong with some of these rheumys? It baffles me why you would ever go into a profession where people are in constant chronic pain if you don't have an ounce of sympathy or empathy :evil
It's good that you seem to have a sympathetic/understanding Rheumy nurse, can you make an appt to see her and tell her how this appt and the rheumys attitude has made you feel? It may help to see also if your GP can refer you to another Rheumy, I definitely would get a second opinion.
Have a lovely time with your daughter and grabdaughter, try and enjoy the sunshine, and make a plan, talk it over with your loved ones and do what you think is right. We are behind you a 100 percent, sending comforting and supportive hugs your way, keep your chin up Xxx

suzygirl

(((hugs))), I too have lost my figure since arfur and good old pred. I am also now a type 2 diabetic. I feel like taking a photo with me to clinic appts to show what I looked like before arfur and the pred THEY gave me!!! I too, get the 'fat looks', have you tried diet and exercise advice.

I used to swim reguarly, cycle miles, play footie in the park etc etc. Now I can barely make it up the stairs. I also eat healthily, and watch my diet etc. It is a very unfair situation, that arrogant young junior docs don't really comprehend.

I am so pleased to hear you had your rheumy nurse to fight your corner. They are worth their weight in gold. It does sound as though the biologic may not have suited you anyway. Have they discussed, whats next for you?? I really hope they come up with a combination suitable for you. This disease is a pig, and really takes it toll.

Enjoy the beautiful sunshine and your grandchildren and the bank holiday weekend. Maybe you could contact the helpline to see if they have any advice on what next to try or NRAS?

Chin up, we understand and will support you along the way! Sorry I haven't any more useful advice, but I just wanted you to know I understand.

Take care

theresa4

thank you suzy girl and poppy

Ive just had a lovely but tiring afternoon with my daughter and granddaughter and my nephew (3 yrs old). I know tomorrow will be very painful as just resting is causing stiffness.

My rheumy nurse isnt always so supportive but maybve Im being too demanding as I know they are so busy but Im only thinking aboiut me.

That registrar need not bother seeing me again.
If I dont get the ENT infections under control thedy are reluctant to give me further biologics. It is unlikely im going to get the toccillizumab now due to family history and since Ive been lucky and had 4 biologic trials its unlikely I will get offered anymore.. I will just have to cope with the pain and occasional depo steroids I think. so 6 weeks pain free then a few months or 6 of pain then 6 weeks pain free :x suppose Ill have to get used to it.

THankyou for your replies
Theresa xxx

julie47

Hi theresa

Sorry to learn you are not having the med you were so looking forward to starting. I hope you can have something else to help with your pain.

I am pleased you had a lovely day yesterday with your family and I hope you are not too tired today.

Take care
(((((((())))))) gentle hug for you
Love Juliepf x

barbara12

Hi Theresa
I am so sorry you have been turned down for the meds. but please dont give up...you keep pushing and make yourself heard..
Like one of the others said get together with your lovely family and talk things through.
Again I tell you dont give up we are all behind you, and here when you need to talk or have a rant.
Theresa I went to the gym for over 20 yrs, and now when I go to appointments like you they see me has overweight and not moving around enough...my last appointment I had my say....and told them what life was like before arthur....boy did it make me feel good....even if they didnt listen.. :roll:
You take care my love
And I do hope you get the treatment you deserve very soon.
Love and lots of hugs (((((()))))
Barbara xx