Emergency rheumatology appointment for tomorrow!

janie68

Well I was doing so wellish on Cimzia, but I have felt in the last few weeks that it is losing its efficacy. Awful pain returned and swelling, you know how it goes.

So a phone call to the biologics nurse on Monday, she phoned me yesterday. It is either failing or its the damage that has already been done that is the problem or both. My bloods steadily rising again, ESR 35 last week from 19 in January which isnt much but enough, all other bloods showing inflammation what ever that is.

So received phone call today to attend tomorrow afternoon, eek, that was quick for urgent appointment,

So, this is the 3rd anti-tnf, but she says there are more treatments to try, thing is the next ones are infusions, and I really dont like them! Rituximab I found quite stressful, my body didnt like it either with high BP etc.

But we shall see, can I call upon you lovely peeps to attend pocket duty at 2.30pm?

Sorry for long post

Janie x

weejean

Hi Janie

Make room for me in your pocket. Hope everything goes well xx

mig

Just count me in as well.Mig

julie47

Hi Janie

Hope the appointment goes well tomorrow and they can find another med to help you.

will be in your pocket so don't worry.

Juliepf x

dreamdaisy

What a blow. Count me in for tomorrow, I hope they can do something or find something that works as meant. Take care. DD

valval

hi i will be there as well good luck val

janie68

Thanks everyone!

I will empty my pockets tonight of old tissues, sweets and fluff in readiness for tomorrow.

Hubby coming along too for support, he actually went to sleep once when I was seeing the nurse in the same room. Can you imaging how embarrassed I was?? Imagine I mean :oops:

Janie xx

suzygirl

Just wanted to wish you all the best for tomorrow.

ironic

Hi Janie,
It is good that your husband will be with you tomorrow. Do you want me to bring a couple of matchsticks just in case he gets the nods again...sorry that did make me laugh. Mind you my hubby can catnap anywhere so it shouldn’t surprise me. Glad you have made room for us in your pocket, I will be thinking of you at 2.30 with everything crossed for you.
Lv, I x

frogmorton

Oh Janie :sad:

l am gutted on your behalf :sad:

This is really so upsetting l hope they do have some ideas....should the biologics promote a total remission or is this a flare and temporary?

If so maybe a course of oral steroids might help?

Everything crossed for you that they have some ideas and help you

Love

Toni xx

janie68

Hi Toni

Oral steriods are in my opinion the cruellest drug, they mask your symptoms, make you put on weight, grow hair in places well you know, put up your BP to horrendous levels. Thats what they did to me when I was on them, but it maybe time for another lot, I hope not though!

Thanks for all your kind words everyone, I will update you later today

Janie xx

janie68

Update tomorrow, I am really tired, but not much further forward

Janie xx

roses1

Hi Janie,

Sorry i missed your pocket duty :oops: Hope the appointment went well and they sorting you out!

I will pop in tomorrow
Sleep well

Rose x

skezier

Hi Janie,

I also missed it flowr, I am sorry but I hope it went ell and will look out for your up date. Cris x

frogmorton

Janie

you are right about the steroids in a sense, but if you are desperate enough??? :sad: :sad:

I hope you are ok today???

Love

toni xx

Ps coffee with Rose and l next time....DEFINITE!

janie68

Hi everyone

Ok sp definite inflammation. DAS score high. New set of bloods done incl thyroid, immuno, CCP, Rh factor, etc to check for underlying condition. Ultrasound scan referral for hands and feet to go to but waiting list 4-6 weeks.

She wouldnt give me any steroid injection or infusion as that would jeopardise the ultrasound results, so great Ill suffer for 6 weeks then shall I?

Imsee my consultant on 22nd Sept anyway so all results will hopefully be available for him to assess next step, new treatment or poss clinical trials.

But how does help me when I go back to work in 2 weeks? I struggle enough when I am well, if I go sick again then thats it, final review!

I will really have to consider ill health retirement now, if my job is going to go down the toilet.

Im quite frustrated by it all, they dont seem to grasp how painful it is and I cant wait all this time, gggrrrrrrrr!!

Going to watch x factor soon

Janie xx

roses1

Hi Janie,


They do not understand the pain we suffer!

Waiting lists for scans well you would think they would just send you as there never seems to be anyone waiting when you get there :???:

Good luck with the rheumy at least he will have all the results back , whats the clinical trial that may be on offer?


Could you do part time work instead?

sorry not much use am i


Keep your chin up (((((hugs))))

Rose x