The Rocky Road to Enbrel

[Neonkitty]

I have been left in "pending" apparently!

For those who are bot aware I have been screening for Enbrel since 27 February when I had blood teats and met my Rheumy nurse. Since then xrays and TB and all manner of GP visits due to despair and pain as I am flaring badly with swelling.

I had been waiting for confirmation after a root canal on 9 April I didn't need antibiotics so could give the nurse the go ahead to tell the healthcare at hime team i could have the Enbrel. I did already alert her to the fact I would be available mid April even if did need antibiotics.

I last spoke to her before yesterday the Tuesday Easter and was told she was registering me with HAH and it eouod be dine whilst she was on holday.

I had heard nothing last week and phoned to try speak to her to confirm no antibiotics required for my tooth and found she she on holiday. Each day I am experiencing more and more pain and I am now on Fentanyl 50 transdermal patches which take some of the soft tissue pain away but I am so out of it on these and I sleep most of the day to try get away fri the pain in all my joints.

I spoke to a secretary last week and said I was in such despair and could someone please let ke know when I could start Embrel as i had din all my tears etc. The secretary said last week the nurses were all on holiday and i would have to wait five to

Seven days. I was really devastated as each day my morale is getting worse.

I waited patiently for six days then phoned herder ah to say. I ant take much more and got to speak to the nurse. Ejected ke she ouod chase up healthcare comoAny and gt back to me Wednesday and also that she hadntvreceived my TB result. As I DID three days after it ess taken at beginning of march why hasn't it found its way a very shirt distance down the corridor where they are!

Then today I got a call from the nurse this lunchtime to say that as the hospital haematology had not sampled my bloods in February for Hepatitis C there being a request, that Heathcare at Home won't let me have the drug till they get that confirmation. So I have to go to the hospital on Friday for another blood test. I wonder why I wss left pending as i did remind her just before Easter about my dental. Even that was hard t get in touch and I had been phoning on and off for a few days.

So Healthcare at Home knew there was a blood test missing but didn't chase up at Rheumatology? Haematology knew there was a TB test to the give result to at Rheumatology. The nurses snupld hsbe chased up my progress from the end of February tears and also chased up HAH to see why no confirmation of me being registered with them. As if it isn't stressful enough.

The nurse was ver apologetic but it doesn't help my case when.someone goes on holiday and all stops for me. My pain hasn't stopped. It worsened each day for about three weeks now.

The nurse will Tske my bloodcridau snd Tske to ne analysed straight away and the result on the screen that afternoon she says and confirm all OK to HAH. She wants them to deliver Enbrel to me

next Friday and me to take it to her in the hospital to inject for me so I don't have to wait till Tje following week for my first ije with HAH at home.

I have to say I pulled up the duvet and cried after I heard all this. I felt seized up even more by the evening.

I feel I have been in the hands if sie inefficient people and even if Tne nurses goes on holiday surely someone else can make a phone all to check this or look in my file. She did say to come for a blood test today but I couldn't move. I was in bed when she phoned. I do appreciate trying to things but it should have been all ready and waiting for me to say OK i AK ready after my dentist on 9 April.

So it could be a week on Friday but Who knows.

I can't remember feeling so bogged down with it and I am a very upbeat person. This is making my RA worse.

Anyhow, enough. The Fentanyl is making my eyes close and it is late so off to bed. See what can be sorted out Friday. I AK not wanting to sound ungrateful, but if hadn't chased it I think I would be here suffering all this flaring and seizing till the next

Rheumy appointment mid May.

Neonkitty

xx

[Neonkitty]

Tests not tears and sorry my typing crazy but so tired. Repeat blood test Friday.

[Munchkinella in reply to Neonkitty]

Don't worry about your typing lovely, I could understand you lol

Sorry you've been messed about hun. Sending you lots of gentle hugs. Love Janet xxx

[Neonkitty in reply to Munchkinella]

Ha ha Janet! If the RSA ever saw this mad typing lately they would take my typing teachers' diploma away! (Not that I ever use it these days!) it is typing in the little box where you can't see your errors. Thanks for your kind thoughts. If only someone would do the nurse's job when she went away. They have been stretched in rheumatology for the last two years but each day is a madness for me. Trying to keep going best I can. Love & Hugs xx

[_andy_]

i feel for you , i know what this is like ,, the same thing happen to me ,, i was suppose to start enbrel 3 weeks before xmas ,, only to find a blood test had being missed , by the time id being given the test ,, xmas had arrived , so there was no chance of a delivery ,, even after the xmas period the enbrel people were so busy playing catch up . i eventually got my first delivery thrid week in jan .. roughly about 4 months in total , from the time i was told i was going on to enbrel .. i later find this is about the norm .. eventhough it does seem crazy and the 4 months wait can seem like forever ,, i wouldnt be to hard on the nurses , its more the system at fault ,, im sure the nurses can get so frustrated at times too .. i know its easy to say ,,but try not to let it get you down ,, i know its a long wait ,, its worth it though .. hopefully it will be for you too .. be strong ..

[Neonkitty]

Thanks Andy. My. Ruse is nice but some of the staff have not been very helpful at all.

[Neonkitty]

Nurse! Sorry it's my damn fingers!!

[Hidden]

Hi - this sounds so frustrating and awful for you it almost makes me feel lucky up here actually. My GP surgery prescribe my Metoject and I was able to start almost straight away. If I ever have to go on anti-tnf it may be a different story but because I have a really good surgery I'm very fortunate that there is no HAH involved - just the practice nurse, GPs and pharmacy. I'm really hoping it starts for you very soon now and works brilliantly when it does.

I use the iPhone first thing to try and get my fingers slowly moving. Brain is quite another thing though! Xxx

[Neonkitty]

Thanks, Tilda. There's definitely something to be said about a smaller community where there's less places or blood tests to go AWOL

etc!

The GP surgeries don't really want to get involved in anything like that with there actually being a Unit at hospital dedicated to the administering of many injections and infusions. Unfortunately, Enbrel isn't one they keep orb give there. I will have to take my Enbrel to the nurse when it arrives hopefully a week tomorrow and let her show me/do the first one so I don't have to wait another week for HAH to come out to me. Well, that is the plan, anyhow but I am not sure it is going to happen like

that.

MTX was never a problem with HAH or any delay and I was at the hospital for that for 3 weeks to start with. The biologics are of course a different scenario.

Good luck with your return to MTX and hope everything goes well for you.

Julie xxx

[allanah]

Hiya Julie. Its awful and I hate to say it not so surprising. I was talking to my biological nurse yesterday and she was saying that there is only her for 500 patients on biological and this number is increasing all the time she says there is no one to cover when she is off sick and the nurses are sick of trying to put forward the case that rheumatology has changed so much, they need less hospital beds and more nurse specialists. They are piloting a sort of walk in unit where you can call and they will see I if you have a very urgent problem suchnasnbadnflare or swelling, as they r also finding that too many people have to wait too long to see the doc "urgently"

So I think theynarenwell aware and feeling very stressed themselves.

However that doesn't help me or you as I can't walk at the moment due to flaring but have to wait till next week to see docs! So same as you, in bed with morphine.

But I do think you really need to chase everything up now and keep phoning hospitals as we do get left too frequently in pending, it took them about 4 month to get my biologics but after that it all seemed straightforward.

Good luck and hope u feel better very soon xx

[Hidden]

Just wanted to say how horrible this is I've been following your Enbrel developments but having the whole sorry story here in one bit just drives it home again how appallingly they're treating you!!! I wish there was anything at all we could be doing for you!!

Makes it only worse that you have to do all the chasing when you're barely able to function as it is. My advice is to keep noting all the delays and screw-ups so that once you get Enbrel you can let all hell break loose over the people responsible for this. Nobody should be allowed to suffer like this in this day and age. I feel RA just isn't taken seriously still. I can't wait for the time when biologics will be the norm and all these assessments (I mean just the idea that you need to 'prove' you need a drug to some bureaucratic w*nker who has the control about the money makes me angry) will be gone.

I'm so sory you have to put up with this level of incompetence, non-communication and indifference. It's shocking.

All the very best, Christine xxxx

[Hidden]

im on a very rocky road too!! hit a pot hole at appointment today, keep chasing yours!! hopefully soon??!!

[Neonkitty]

Oh no, Summer :-(. Haven't had chance to read everything yet. Will see what else you have posted. I did read you were going for your decision and I had really hooed it would be in your favour. Thank you for your kind thoughts and I will comment on the relevant thread.

[Neonkitty]

Thank you Christine. Your support means so much and also the other lovely people here, I have noted all thst has happened. I feel for the nurse because she put her trust in others go co things and also in her absence. She is two to three days in clinic giving infusions etc but she should be given time to chase up pending people like moi!

As I said if I hadn't started to make a bit of a nuisance of myself I would still be very much pending.

xx

[Neonkitty]

Yes Christine, forgot to say .... It is also awful when people like Summer are not being given the go ahead when she is obviously too in a similar state of pain, immobility and visible swelling.

There has never been doubt about the rheumy's approval etc for me to have a biologic. I hope Summer gets hers very soon.

[Neonkitty]

Yes Christine, forgot to say .... It is also awful when people like Summer are not being given the go ahead when she is obviously too in a similar state of pain, immobility and visible swelling.

There has never been doubt about the rheumy's approval etc for me to have a biologic. I hope Summer gets hers very soon.