hi everyone,

apologies but i feel i need a rant !! and also haven't done an update for ages.

as some you know i have been waiting to start on Humira .. having failed on Methotrexate and Hydroxy.

diagnosed last June, was on Methotrexate built up to 20mg and then added Hydroxy in November. i'm back down to 10mg Methotrexate now.

had no improvement at all, so the decision was made in March to start me on an Anti-TNF.

had my two DAS scores does in March and passed the criteria. then came the waiting game. i had a message a a few weeks ago that i had to have failed on Hydroxy for 6 months .. that took me till the end of May.

my Rheumy Nurse has been keeping me informed, well she was off for six weeks but there are two that share the job, so one or other has been there for me.

anyway my Rheumy Nurse who did the paper work for the Humira came back a couple of weeks ago and phoned me to say that the paperwork has now gone off to the PCT, in our conversation she said it was Bedfordshire PCT. i thought i was with with Buckinghamsire PCT and had this confirmed by my GP. so i don't know if this has slowed things down. i live in Buckinghamshire but am on the border of Bucks/Beds. council tax etc is paid to Bucks.

anyway i had a call earlier from my Rheumy Nurse to say that the PCT wanted me to have another DAS score done, as a few months have now passed since my last two in March !! i also confirmed to her that i was under Bucks PCT and she said she would look into this. so this means more waiting, and she said they do drag their heels.

so i now have to go on Thursday morning for the DAS Score to be done again.

also i've had a Urinary Tract infection since March, ( it's low grade ) and doesn't always show up when the sample is sent off to the Lab. but i've had 5 lots of Anti-Biotics and cream to treat from outside in so to speak, and still it won't go. would be interested to hear if anyone has had an infection that just doesn't want to go.
i finish this lot of Anti-Biotics tomorrow and i feel it's still there,

so i know i won't be allowed on the Humira till that clears.

i think i need a much higher dose of Anti-Biotic to get rid of this infection and will try and see my GP next week, i am taking in a sample pot to the Surgery on Wednesday first to check it hasn't gone and will also be able to tell my Rheumy Nurse on Thursday morning.

my Rheumy Nurse said there are no Doctor's on the PCT board, so how you feel doesn't seem to matter.

my ESR and CRP are both high. but they don't suggest i have a Depo injection as hopefully it's too near my starting the Humira.

i know there's no magic answers so this, but i am feeling tearful, scared, vulnerable and so many other things now that i will every get under control.

i am trying to carry on with day to day but have to say this has knocked me for six as i though Humira day would be approaching soon. and that's another story as i am anxious about starting the Drug. i was the same with the Methotrexate.

i am due to see the Consultant mid August, who thought i would be well established on the Humira by then. also my holiday is the beginning of August and really not feeling comfortable about going instead of looking forward to it.

anyway thanks for listening, as i said i know there are no magic answers and i know so many of you have gone through long waiting game.

think that's my story to date.

Suzanne x

Hi Suzanne

Sorry to hear all you have been going through, it has been such a terribly frustrating time, and totally understandable that you feel so low. Is there any way your consultant can put some pressure on the PCT to speed the next das score up for you ? Try and let them know this is really pulling you down, say having a word with his secretary, sometimes they need a bit of a jolt to understand how difficult the situation is becoming.

Thinking of you Julia x

Oh, Suzanne, rant away! I do enough of it! It's a flaming full time job sometimes isn't it? I had to ring the surgery again this morning for something, that's 3 times in a week. I don't blame anybody really they are all part of big, inherently dysfunctional organisations facing cuts and job losses etc but the effect is always the same, hurdles, hoops, rings of fire and you're only a person at the end of the process after all!

I don't know how you've kept your patience with all this I would have lost the plot a long time ago, Miss Impatience Herself here and not very tolerant of incompetence either. I suppose the only thing I would do after a good old rant, cry and general door slamming is write down the steps still to go through and tick them off as they happen, it would help me see some progress and keep that glimmer of hope alive.

And if you can get the energy together you've got to try really hard to look forward to your holiday. I've had wobbles about this before and I think its because we go through the what ifs and buts and forget that it really doesn't matter because we're on holiday! It doesn't matter what we do or don't do or whether the travelling knocks us for six or we feel like doing this or that because that's the point of a holiday!

Hope things look brighter for you soon, this blasted drizzle doesn't help much either does it?

Take care
Sara
xx

Hi Suzanne

I had this last year and it lasted about 5 months and I ended up being neutropenic as a result and had to stay off MTX; each time I re-started it the infection re-appeared. In my experience, immuno-suppressant drugs such as anti-tnf, methotrexate, leflunomide etc are often required to be stopped when antibiotics are prescribed. Whilst the immune system is supressed your body will struggle to fight the infection and hence it may linger. The two drugs appear to work at cross purposes.

Hope you are able to get it all sorted soon. I had a horrible time last year with one infection after another, it went on and on and on so understand where you are coming from. It is both distressing and upsetting for you.

Take care Suzanne,

Lyn x

Hi Suzanne
Sorry that things are being delayed yet again! You definitely need to make a fuss! Like Lyn said they really should have stopped your mtx when you had the water infection. You prob also need some stronger antibx to completely clear it... Good luck hun you will get there!! Love Ceri xx

thanks for your replies,

feels that i'm not alone !!

i normally take my Methotrexate on a Thursday morning, but not going to take it this week ... i see the Rheumy Nurse at 9.30 a.m. thanks for the info re that Lyn.

i am taking my sample pot into my GP's again tomorrow morning as i know it's not cleared up and i can go armed with the information on Thursday ... although i know this side of things is with my GP am wondering if the Consultant can get involved,

i've just had a long chat with the Helpline, but basically we agreed as i am going to the Hospital on Thursday morning i might as well see what's what and make good use of this appointment.

told the Helpline i would have gone mad had it not been for the Forum,

i'll post once i've had my appointment on Thursday,

really appreciate all the support.

Suzanne x

Oh Suzzane Oh Suzanne

Oh I know what down and frustrated you must be feeling. Poor Poor you. I so understand Suzanne
I came of leflun last July 2010, and after all the checks, delay of appoints and then having 3 lots od
antibi and lastly a dose of high penicillan 1500 per day to get rid of a streptacocal infection. Taking
all that into account I started the Humira 8th June for the first one and second one tomorow. So
I went 11 months with no DMARD being taken. Frustrating was not the word. . . . . .

As Lynn said you should have stopped mtx to give the antibiotics time to work off the infection.
I so wish you luck at your appointment and I do hope it is encouraging and goes well for you

Chin up Suzanne, very difficult I know, been there and worn the tee shirt so to speak. I
take my second tomorrow but I seem to have not been very well for all sorts of reasons so
fingers crossed for tomorrow.

Rose x

Hi Suzanne
Pleased that the infection has gone good luck for tomorrow, and make sure you get answers to all your questions! Love Ceri xx

Hi Suzanne,

So pleased for you that the infection has gone.
Good luck for tomorrow. Why not delay the mtx for a few hours and discuss it with the rheumy nurse?

Love, Doreen xx