35 Days to go

The world has gone crazy!

Unfortunately 2 weeks ago my White blood count dropped to 0.2 which meant emergency stop of all RA meds - sulphazine was the culprit.

On the brighter side of the story my consultant told me I now qualify for anti tnfs and gave me leaflets, told me to pick which one I wanted and come back in 2weeks.

The pain over the past weeks has been unbearable and at one point I couldn't feed myself. So the excitement of my Tuesday consultant appointment was my only thing keeping me going.

Tuesday arrived I barely slept I was like a kid at christmas. I decided that humira was my drug of choice and off we went to the hospital.

Then came the disappointment. My consultant explained all about humira showed me the pen and how to do it. I was then told that due to government guidllines and the NICE department I have to wait another month and to come back in a month.

They packed me off with tablet steroids to keep me going as the injections haven't worked.

I now have to wait till the 20th September :-( 35 days away

My mum could see the disappointment in my eyes and I sobbed the hole way home. I couldn't believe I qualify, I'm in severe pain and they can just pack u off all because of government guidlines.

Once I stopped crying I told my mum I was going rioting as I have something to riot about and I am going to run over David Cameron so he can't get out of bed too.

The people that make these decisions don't have the crippling pain and fatigue we have. They sit in there fancy office sipping Starbucks and making decisions that change people's lives and I can't believe the drugs are there but we can't ha e them.

What a crazy world we live in

:-)

Marnie x

18 Replies

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  • Oh dear Marnie. What are they doing to you. What a disappointment. So Ok it might be "guidelines" but what guidelines - he should have said exactly why!

    It really is mad. When talking to my consultant about the various drugs, it seems that in future they won't go through this system of drugs. and hopefully people will be able to be treated with the right drug for them irrespective whether it is a DMARD or anti-tnf/biologic.

    I am sorry you have to go through this. Keep your pecker up and keep sane. We do indeed live in a crazy world.

    Take care

    Julie xxx

  • She told me it's because they get audited and the guidelines state that it has to be a month apart between disease scores! Craziness :-)

    X

  • Hi Marnie, crazy just isn't the word, I'm sure if they were the ones suffering like you/we things would be different. It's extremely frustrating for you I know I've been there many times myself. There's nothing I can say to make you feel any better I wish I could take it all away for you as I know how you are suffering at the moment.

    All you can do is hang on in there, still keep pestering the helpline if you have to there may be something else they can give you to help tide you over. While I'm waiting for funding/clearance etc I am offered a steroid infusion on the day case unit. These work much better than the pills and would help you until you can start Humira.

    I wish you all the best

    mand xx

  • A steroid infusion?? Ive never heard of that. Il google it now x

  • Hi Marnie, I had steroid infusions when first diagnosed as was so bad. Dripped into my arm at hospital over 4 hours each day for 2 days. I then had to go back a couple of months later for another 4 hour session. It is a rapid way of getting the drugs into your system to start combatting the pain and inflammation and works quicker than injections or tablets.

    Hope all goes well for you and you get the Humira on time. It will make such a difference. Love LavendarLady x

  • you may need to google Methylprednisolone infusion. As there are different types and strengths.

    mand xx

  • Feeling for you hun. They do actually have to carry out two DAS tests a month apart and you have to have tried 2 DMARDS to begin with.These drugs are not to be taken lightly so it's good they check properly but I know the wait is unbearable having been through it too. Hopefully once you get on it you will feel better. I am literally waiting for the nurse to arrive right now for my first Humira injection AAAAgghh!! Scared but hopeful. Good luck xxx

  • Good luck x

  • you may need to google Methylprednisolone infusion. As there are different types and strengths.

    mand xx

  • ooh you poor thing. I do feel your disapointment.. so close.. just hang on get and take those steroids I found/ find that even tablets came make a difference in about 8 -10 days so heres hoping xx

  • I was approved for Humira. Had 1st injection then told that my heaf test was dubious so then had to wait for that to be clarified. Then got told that they had to liase with Neurologists as I ? had vasculitis. Eventually after 4 months I got going. The injections Help a bit and they are not as bad as you think they do sting for a matter of seconds and then it is gone. I do my own mainly because nobody else to do them and being a Midwife I would probably be laughed out of the surgery if I asked for the Nurse to do them. Hang on in there a month isn't that long and will soon pass

  • Hi Marnie

    As Lulul said it is a requirement that two DAS are done one month apart to ensure that you meet the criteria for biologic treatment. You don't want to be taking drugs such as these without due need, believe me! DAS can change from one month to the next so two provide a more accurate and relaible assessment.

    I am stunned that you have been given steroids! It's unusual, in my experience, to be given steroids in between DAS assessments for anti-tnf as they are likely to bring the inflammation under control meaning you may have less painful and swollen joints and therefore a lower DAS and perhaps not qualify for Humira on the second test.The same goes for methylprednisolone which tends to work more quickly.

    It sounds as though you may need to see your GP to get some adequate pain control. You shouldn't be living in this sort of pain there are plenty of drugs out there that will help you. If you pass the second DAS assessment you may have to wait 4-8 weeks after that for the drugs to be delivered from the supplier and for a nurse to visit you to show you the administration process.

    Please do check with someone about the steroid use though, I'm not medically qualified to say but you could end up with a considerably lower DAS and fail!

    Lyn

  • Lyn.. that is a good point about.. the steroids, but we cant argue with the consultant.

    !Marnies consultant gave them to her, and obviously they are medically qualified.. I think you are possibly right. but there are two other issues. we dont know what strength of steroids were issued and how long a course and whether it was involving a taper down prior to next das score.. my consultant.. has never done a das score to my knowledge though I laugh she has never seen me without steroids!.

    I had a good 8 month spell with methotrexate without steroids.. but I saw a registrar then!

    From my personal experience I still showed inflammation on ultrasound scan in the first year of diagnosis whilst taking about 10mg of prednisolone but every one is different.. the consultant might have built in a taper? not sure if we have enough information to comment..?

  • I merely stated that I was stunned that Marnie had been treated with steroids, I wasn't arguing ... you clearly haven't seen me in argument mode!! The guidelines in our Trust are such that steroids and anti-inflammatory drugs are not given between assessments for anti-tnf. Doesn't matter whether the dose is tapering or not it will still be in the system and may well affect the DAS result. (I understand it has been known for authorities to use this as a way of avoiding prescribing potentially very expensive drugs to patients; they simply let them fail the assessment)

    I imagine Alison you haven't had a DAS because you haven't been considered for anti-tnf. They are generally used to assess the efficacy of biologic drugs and done regularly every six months.

  • I can give you it all :-) I am on 20mg for the first week, 15mg the second and 10mg the third and by the time I go back I will be down to 7.5mg. The steroids have just made me less stiff so my go gave me a new pain relief yesterday of top of my tramadol. It's a patch, so it does look like I'm quiting smoking. So I have my steroids, my patch, my tramadol, my naproxen all the others I take so I don't get nausea or stomach ulcers. If you shake me I rattle :-), I don't have faith in my gp surgery or much of the nhs but my consultant is brilliant so fingers crossed :-)

  • Hi Marnie,

    I went through the same process late last year early this year. When I was given the leaflets and told to come back in two weeks I went and expected to come home with my magic drug.

    But I was told to come back in six weeks again I expected to come home with my magic drug I was told come back again in six weeks , another six weeks later I was told yes you qualify but again no drug, I was then told I needed x rays, blood tests, water tests etc and then if the consultant was happy with results he would sign the prescription, I was told to give them a couple of weeks to get the results and review them, two weeks later I phoned and I few days later the nurse got back to me to say that they were waiting to speak to a consultant I had seen a year before about hieatus hernia and barrets essopogus ( excuse spelling) so basically I had to wait another 4 weeks before I was finally told the consultant has signed your prescription and just expect to wait up to 4 weeks for the drug company to deliver, I waited 3. When the drug company phoned to arrange delivery they said once you receive the drugs our nurse will be in contact with you to arrange you doing your first one I waited a week and nothing so I phoned them basically lots of promises the nurse would phone me but a week later still nothing, so this time being totaly fed up I phoned and said you either Get a nurse to speak to me today or I am doing the injection myself tonight! A nurse phoned me back in the hour and arranged to come out a few days later.

    So all in all it took me nearly 23 weeks to get my anti tnfs. Hope yours don't take this long just try not to build your hopes up to getting them on your next visit.

    As for the steroids I too was given an increase while waiting for anti tnf and I was told it could make a difference to das but even with the steroids I had das rscores of 7.8 and 7.2 I think nice says it has to be 5.1 or more for anti tnf treatments to be given. I took doses of between20-40mg while waiting for anti tnf and even though I am on them now I still crash and flare like hell if I go lower than 20mg on the predisolone.

    Hope you get your injections soon and hope they work well.

    Take care

    Julie x

  • Pleased you are on a taper dose of steroids thought that is what they might do?! pleaased you are happy with your consultant xx

  • It would appear from Julies experience that a low dose of steroids can still give a high enough das score to qualify.I still registered active inflammation on ultrasound at 10mg last year.

    Dear Lyn

    I Havent had ant tnf.. severe cost saving going on. I had to sit at a pharmacy meeting a month ago were I had to sit and listen we must stop the consultants using these expensive rheumatology drugs!! boy would I liked to have got up and say something.

    I am just having to assume that Marnie's consultant Is acting in her best interests with a short steroid course.. and that she will still be able to qualify?I think that you and I might be looking at the situation from different prospectives and as well all know not all trusts follow the official guidelines.. ie some give ant tnf straight away , without any dmads. and mine is using maximum ant tnf avoidance techniques for all patients!

    . I seem to remember you saying on one of your comments on a blog somewere that they are just" guidelines?"

    With best wishes

    Alison

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