what's the next step?

jenzie06

Need some advice. It's a bit long, sorry.

After being poorly with a virus which (possibly in conjunction with my Humira) made my throat close my Rheumy consultant told me that I could only restart the Humira as an out-patient just in case my throat decided to close again.
When I saw the consultant I had major problems with my knees and my neck which he dismissed as fibro and refused to even consider anything else just told me to increase the tramadol. Now I was given a load of steroids when I was in hospital and this didn't help my neck but made my knees feel loads better (after incredible pain in them for 6months). Now the steroids are wearing off my knees are hurting again, not only that, I'm starting with a big flare.
Currently I'm not taking anything to help my RA. I rang the hosp on fri to find out when I can go in to take my Humira, they should have sent me an appt already (I'm unsure whether I should take it anyway as the ent consultant I should avoid infection as the throat closure should come back). I've heard nothing and left another message today.

What should I try next? I feel really abandoned and let down, like nobody cares. Should I have to be stamping (gently) my feet and shouting? I'm starting to really struggle to care for myself, let alone my son. How rubbish do I have to feel before getting some help?!

skezier

Hi Jen,

Sorry your having trouble their flower and guess maybe you will have to gently stamp about a bit to get them to help you?

With a bit of luck you will hear from them tomorrow morning but if you don't can you get your gp to help get things moving for you again? Its not fair to leave you high and dry and understand totally why you said you feel abandoned and let down. I'm sure they don't mean that its juts for them its a 'when they get round to it' and for you its really needed now.

Hope they will soon get back to you and help you. Cris x

Wonkylegs

HI Jenzie

sorry that the hospital are like mine and have a different definition of urgent to ours :roll: :roll: :roll:

in addition to Cris's suggestions you could also try ringing the PALS service for your hospital and asking them to help you get this problems resolved.

good luck!

WONky

nanasue

Hi Jenzie, yes you really do need to make a fuss and stand up for yourself to get what you want. I did a few months ago and it worked, plus I got an apology, the consultant I changed to even admitted I'd been badly treated and let down, so it just goes to show, but I did have to get PALS involved to get it sorted, they're really good (well, they were for me),keeping my fingers crossed (sort of, it's a bit difficult) that you can get something sorted, let us know. Take care, chin up,

Sue x

frogmorton

Hi jen

Oh dear :sad:

you must be frantic.....the jab seems to have been effective for your knees at least and was good but as it is wearing off and you ahve nothing else I am not suprised you are flaring :shock:

You must be so frantic - l would be not just for yourself but your baby (how old is he now by the way?)

I am of the opinion like the others that a fuss has to be made...if you have rung teh hospital and got no joy then via your GP - maybe he will give you oral steroids as a kind of sticking plaster till you get some 'proper' help?

LOve

Toni xx

tkachev

I would keep ringing the hospital. Don't take your Humira at home because of what happened before with your throat.Otherwise Could you take your injection to the hospital without an appointment and demand to take it there and then.

Elizabeth

tillytop

Hello Jenzie

I think you do need to be "stamping your feet" to get an answer and, although you may already have tried this, just wanted to suggest trying to speak to the consultant's secretary, rather than the general rheumatology number. I have had success this way in the past.

Difficult tho it is to "make a fuss" when you are feeling so wretched, I know from recent experience that is the only way. I do hope you get your appt soon.

Thinking of you.

Love Tilly xxx

jenzie06

Hiya
Thanks for the replies. I kept ringing the hospital and got to speak to the rhuemy nurse. She is liaising with the consultant regarding my meds etc. She's not in tomorrow but has spoken to a colleague who will help. It's difficult as they are busy but I am struggling.

My baby boy is now almost 10 months!! Where has the time gone? He's bypassed crawling completely and just wants to walk all the time! He can walk but has no balance so my back is protesting with all the bent over walking about. Also if I sit too close to him he tries to pull himself up on my trousers. It's lovely to see him progressing but it can be a bit wearing!!
He's also taken to pointing to things he's interested in or things he wants (which makes things easier!). Last week we bought him his first shoes and he had his first haircut (as he has a lot of hair!). He now looks very grown up!
He also has got yet another cold. He has had a constant cold or the after effects for almost two months. We keep passing it back and forth. Roll on Spring!!

skezier

Hi Jen,

Harry sounds brilliant and sounds also like he going to keep you busy. bless him is it really 10 months? Your right where does time go....

I really hope they will hurry up and still think you have to gently keep pushing them cus they need to get some help into you.

Keep in touch flower and fingers crossed.

oh and what does harry make of shoes? Cris xx

jenzie06

Evening all.
Spoke to Rhuemy nurse finally late on Fri and turns out my consultant was thinking of changing my meds anyway! Wonder when he was gonna tell me? Rheumy nurse said not to worry as I could try etanercept. God I could scream! But calmly explained that I'd already tried etanercept and I had what my stupid GP called a stroke but because I was living a 2 hr drive away from hospital and GP couldn't give a toss, I wasn't scanned or followed up. Just told I had had a stroke and had extremely high blood pressure and I had to try and calm down!! Nothing was recorded therefore my consultant doesn't believe me. Nice!
I'm getting really fed up of having to have this conversation with consultant through a third party. Apparently I will have an appt with biologics nurse this week to sort it out. Nothing mentioned about knees.

My blood pressure will be up when they record it this week! AGH!!!

Cris - Harry loves his shoes, he knows that when I get them out that we are about to tramp round the garden or go somewhere more interesting. He's really coming along. He points at things he wants and says that 'dat' and he tried saying my sister's dog's name. Plus if you ask him where things are like his bunny or his hair he will point to it. Seems like the small amount of morphine I took at the beginning of the pregnancy hasn't had a detrimental effect. Thank goodness.

Hope you all have had a nice weekend.

tjt6768

Hi Jenzie, hope they all stop messing you around soon.. And that you can get into a good routine of treatment too.

Best of luck