Anti CCP results

Nicchick

Hi!

Anyone know if an Anti CCP result of 199 is likely to make me more eligible for anti-tnf?

I asked consultant what the result meant and he didn't tell me, asked GP and she just said to ask him!

I know getting angry doesn't help but I'm pretty fed up that it wasn't done three years ago when the RF one came back as negative given the amount of inflammation and pain I have had since summer 2009.

Annoyingly a response to my complaint letter to the hospital has come in the post (I know it will do no good but it made me feel better putting all my concerns in writing!!) but no MRI or consultants appointment. My GP also thought that the consultant would wait for results of MRI before referring me to pain clinic but I'm sure he said he was referring me anyway. After all I am in pain and it's not really being treated properly, unless I ask which drugs are ok to take in combination I'm not told...

*fed up face* Nic x

stickywicket

I'm afraid I'm pretty rubbish with anything involving initials. (I'm not sure they had any initials when I was first diagnosed )

I don't think they put anyone on anti-tnfs unless they've exhausted other avenues first. I do meth and hydroxy and it's worked well for me for years. Lef was OK but I'd to come off it for other reasons. Others take meth, hydroxy and sulph. There can be a lot of trial and error in all this. We just don't all respond to the same meds.

I hope the Pain Clinic is useful.

Nicchick

Thanks!

I've had two and a half years on first sulfasalazine and then methotrexate, neither of which have helped totally, still had a lot of pain and inflammation. Anti-tnf was suggested and then vetoed by my last consultant who didn't examine me, made his decision in 8 minutes using x-rays from 2009!

Oh well, I can only hope I hear something soon!

Have a good day, I'm off to work and it's my knitting group today

Nx

stickywicket

Have you never had DMARD combinations then? Just a single one at a time?

frogmorton

Nickchick

Maybe you can get em to do a DAS next time you see them? the 'old' rules were to have failed on 3 DMARDs at least one being MTX.

Horrible to have it promised then taken back

I would be very upset and frustrated too

Good luck

toni xxx

7worlds

When i was at the rhumy last week, he talked about tnf treatment. He told me that it would only be considered if my DAS score was 5.1 or over. I was 4.9. I have failed 3 Dmards and am on no 4, so unless i meet the critera i have to keep on trying the traditional drugs. He said that the guidelines are very strict, however i live in Northern Ireland.It may be different on the mainland.

7Worlds

dreamdaisy

Even though I regularly had ESR and CRP measures in the 150s plus despite the meds I was taking I was denied anti TNF treatment until I had spent three years failing on meth, lef, cyclosporin and sulph. These were used in varying combinations during that time but never achieved much. In the end my consultant sneaked me onto infliximab citing my case as a trial for the meds - something she's had to do with every one since. DD

Nicchick

Hi!

Back from a lovely day at work and a call from a lady at the hospital complaints department asking me to go in for a meeting with head nurse of rheumatology and a matron so that we can 'chat through my concerns' and they wanted to do that next week! I explained that I am waiting for three referrals and as one was an MRI and one was for the pain clinic I would prefer to wait until those dates come through....and the letters have still not arrived!

Grrrr! I also explained that I had asked all the questions during visits to the hospital but very rarely got an answer - she then said she 'could quite understand' and that I 'was having trouble with the way that things were explained to me...' Huh?! That makes me sound like a simpleton...

Anyway...in answer to your question Stickywicket, I have only ever been prescribed either NSAIDs on their own or a single DMARD combined with a NSAID with added pain relief in the form of diazepam or codeine. The consultant I was under at the time (though saw just once in almost three years!) saw fit to stop the sulfasalazine and start the methotrexate rather than doing what had previously been his practice to do overlapping the two drugs - the pain was indescribable and due to getting absolutely no help from the hospital I started to do some research and used some steroids leftover from when I was first ill just to get through those first few months. My friend describes my being in so much pain it hurt to speak...

Thanks Frogmorton, the last two times I was examined using DAS I was just outside (but they wouldn't say how far) and was told that 6 weeks before I would have been put on a three month trial. I had also just had a steroid injection which did bring the swelling down so my hands and feet weren't as bad looking but were still painful!

Thanks for the replies everyone, looks like the guidelines are being tightened so I stand little chance...:(

Nic x

frogmorton

Hi Nic
so any further forward.....doesn't feel like it yet
Suspect the steroid may have been masking symptoms maybe? .....
At least they have been in touch even if it DID sound a tad patronising...
Take care Nic
love
Toni xxx

mig

Steroids can and do mask symtons,they will make your das score lower.You have to have two scores done 4 weeks apart and they have to be over 5.1.It 's difficult though when you are in pain you will willingly try anything to lessen it.I hope you get things sorted soon.Mig

Nicchick

Precisely Mig! That was MY argument re. the steroids! They say the jab will last a couple of months UNTIL I questioned this factor re. the DAS score and then I was told it would only last a few weeks....and they wonder why I question them? I didn't even really know that was what they were assessing when I was there and really don't react much as all of me hurts all the time, some bits hurt a bit more sometimes...I certainly don't scream or yelp in pain!

They only want a meeting rather than a letter response because they don't want to provide any hard evidence. I've been in business all my life and know that when people want to keep boundaries, information and agreements *fluid* they do it verbally rather than on paper... managed to get a friend to do some homework and come along to support me, she's good and won't get upset like my folks would!

The baby chick I'm hand rearing has stomped all over the laptop and changed my settings....:)

Nic x