De ja vu

[Snookums]

de ja vu

Why do I feel like I have been here before?

Had results back from MRI and docs decided to start remicade. It was happenning quite quickly and was all scheduled to start last Friday 24 june.
On thursday arvo get the call to let me know that remicade has been cancelled and that I must go on a course of steroids for six weeks instead.

This is the second time they have done this to me and words couldnt possibly begin to express how I was feeling once I got that call. I only ever have taken the steroids once before and that was straight after my diagnosis.
It may have been 2 and a half yrs ago, but remember how they made me feel then as if I had just recently taken them.

So I express my concerns and explain that I dont like taking them because they make me so cranky!!!( My husband says crankier babe) It falls on deaf ears and unfortunately the plan is set and this is something that must be done before remicade can be issued.

I know there is a lot going on in there at the moment due to the pain and amount of off days Im having, but please tell me what is the use in using a bandaid treatment that you cant stay on long term, has loads of side effects and will probably stop working the minute I stop taking them?

I just dont understand it and I am so frustrated!!

I have managed to fully give my house the top to bottom clean it has needed for some time now but havent quite had the energy for. I have been buzzing for the last 3 days and i started them 3 days ago. I have already been eating like you would not believe, but this isnt sitting well with me in the mornings when I wake up and Im sore from all the food I ate the night before.

Dont get me wrong its so nice to have some well missed energy back and the food intake is well needed as Im very underweight, so should I just be grateful for these two things or do I have a right to question it all as it just doesnt seem to quite make sense to me.

Am I being treated as a person here or as a number????

 

[handle]

They do make you jump through the hoops unnecessarily sometimes. When it gets that way, and it can't be changed, I tend to do whatever I have to in order to survive ..... like saying I'm taking the steroids (which for me prevent any sleep whatsoever) while actually only taking a tiny dose of them. It is sometimes easier to play along than to fight through the madness, especially when really sick.
Good luck however you manage it! You are a person first and foremost.

 

[Snookums]

So many people have told me to do the same and take a lower dose, just so I can sleep and try to avoid some of the kranky mood swings. Get this, even my pharmacist who knows the whole story suggested it to me. I have done as I am told and started at the recommended dose and will follow course but still cant seem to get my head around the madness of it all. I fully agree with the going along with things just to meet the so called requirements for every new avenue one may need to take, but sometimes it really does feel like its so unnecessary.

 

[handle]

Hi,
Are you and your G.I doc filling out the P.B.S authority forms (Australia) for getting Remicade? These include the 'crohns disease activity index' and all the paperwork stating that pred and 6mp haven't worked for you...etc. I believe this is the only way to get Remcade or Humira.
Talk about hoops to go through! Sheesh.

 

[Snookums]

Hi handle

Apparently, (or so I am being told anyway), this is one of the only boxes we couldnt tick in order to get approval. I think I am a lil annoyed that this time round there is a new reason from last time. You can appreciate how easy it is to sense I am getting the run around here. I know there are procedures and precautions and I understand that all these have to met first. I think I just want to be treated as someone with a voice and I want to feel like Im being heard, not someone whos not meeting a score card.

 

[handle]

Hmmm. I would think about changing G.I doc. Any decent G.I doc who wants you on Remicade/Humira will fill in the paperwork to ensure you get the treatment. The 'activity index' is quite vague and can easily be made to give the necessary score - it's only paperwork. Have a look at it online and you'll see (C.D.A.I /Medicare.)
I hope things work out for you.

 

[Snookums]

I think what the problem is, is if this cant be canberra approved then the hospital in WA that I go to were going to approve it themselves. Hence the runaround to try to get approval from meeting canberras requirements first so the hospital dont have to pick up the tab. It really disgusts me. After about 6 days of the pred I am already back to feeling sore, bloated, uncomfortable, tired, kranky. They dont seem to have helped me at all .... already. Is there any need to keep takin them if they arent doing anything. I know I now have to be slowly weaned off them, but oh the frustration!!!!
Have appointment on the 18th of this month and will be fully venting when I go in there next. Im ready to give up on the lot of them as they dont seem to be putting my health as the priority here. Its so understandable to experience high and lows with this terrible illness, but when you are also having to desperately fight for anything that may help you try to have a slightly better life, and your having to jump through rings and do backflips to get it, you have to wonder why??? somebody please listen to me.!!!!!!

 

[handle]

Yeah that's right - it has to be approved and you have to show that you meet the requirements...because remicade and humira are expensive. When you next see them I'm sure you will have better luck when you tell them that the current treatment isn't working and that you need better treatment. Keep standing up for yourself and don't give up. There are some decent G.I docs out there who don't make things so difficult for sick people!