Good Lord what do I have to do?!

jenzie06

I wrote on here a while back saying that I'd been poorly, my throat had closed and the docs didn't really know what the cause was but blamed my Humira. I was left without any RA drugs other than tramadol and paracetamol for the pain.
Eventually after a lot of me phoning the dept I managed to get an appt. Less than an hour before the appt I get a phone call from the rheumy nurse wondering why I was coming into the dept (bear in mind that I'd only spoken to a nurse two days before and they confirmed why I was going in) and that the person I was seeing wasn't even in the dept!

So I sort of lost it. I cried and told them that I was coming in anyway even if it was only to complain to PALS.
I went in and had a very successful appt and it was decided that the person I needed to see would phone me this week to give me an appt. So it's Friday night and there's been no phone call.

What do I do apart from call and 'lose it' again? Why should I have to keep doing this? Feel like standing in the dept and screaming with frustration! It shouldn't be this difficult to get on some drugs! Agh!

skinnylizzie

Hi Jenzie06,

I'm so sorry to hear about your troubles, I can imagine how annoyed and frustrated you are! It would definitely be worth talking to PALS; you are the patient and you have a right to the medication that you need. I sometimes wonder what planet these medics are on!! Would it be worth contacting your GP first thing Monday morning, because in my experience, they can sometimes 'push things along' a bit with regard to hospital things.

Hope you get sorted soon 8)

tjt6768

Evening Jenzie, boy you've been messed around eh? It's not fair when the medical folks just do things like that all matter of fact like, I wonder where the care has gone sometimes :roll:
I hope that you can get something resolved and soon


Be well

skezier

Hi Jen,

Sorry your having so much hassle but know the feeling and sadly i think a good half of us do as well.

I don't know what the answer is but hopefully you will hear monday. If you don't and can do so ring before 4 and remind them. I don't do complaining and Jen your right to cus sometimes I think they only treat the people who will keep bugging them....

leaving you a ((( ))) and a hope they will ring first thing monday. Cris x

valval

did you get there name and number if so phone and ask for sectary she will help you good luck if not google them on hospital sight works a treat if you can not remember who it was jogs the mind val

tillytop

Hi Jenzie

Sorry you are having so much hassle. If I were you I might be tempted just to turn up in the dept and refuse to go away again until I was seen. I know that is a hard thing to do if it's not your normal way of going about things but it might get you seen which is the important thing.

One other thought - am I right in remembering from before that the plan was for you to try the Humira again, but at the hospital in case you do have a reaction? If so, if you can't get an appt at the hospital, could you perhaps make an appt at the GP, either with the nurse or the doc and inject it there, under their supervision as an interim measure?

Also, re your throat closing up, thought of you this afternoon was I was trying to research arthritis of the vocal chords (which may be one of my problems). Apparently it is a fairly common, although little recognised symptom/complication of RA and can, in rare cases, cause breathing difficulties. Crycoarytenoid arthritis is what it's called apparently. Just thought I would flag that up to you, given that docs weren't sure if it was the Humira causing the probs.

Really hope you get it sorted soon Jenzie.

Love Tilly xxx

frogmorton

Hi jen

I am so proud of you girl! You did right you did good and maybe just maybe they will realise how much you need their help.

Well done

I hope your weekend is good

Love

toni xx

jenzie06

Cheers Everyone.

Tilly - Thanks for the heads up about the throat thing. Will check it out. My Rheumy initially wanted me to have the humira again but he changed his mind (without consulting me and I only found out after ringing so many times!!) and wants me to try another drug.

tillytop

You're welcome Jenzie. Might be totally irrelevant but though worth mentioning to you just in case.

Given what happened I can see why consultant would want to swap you onto something else.

Really hope that you manage to get this moved forward this week, so you can hopefully get some relief.

Thinking of you.

Love Tilly xxx

tillytop

Any news Jenzie?

Thinking of you.

Tilly xxx