Yvon is going on Humira

[YvonS]

Hi Yvon hope you got to see the doctor or talk to him. Or are you still waiting to hear back ?

Well, i was called back by a assitant nurse, who i havent met before. She was a terrible listener, didn't listen to my questions at all.
She gave me two options, 1. change the painkiller that i'm also taken next to the Humira. Or 2. quit with the Humira to see what will happen. "So what do you want?" she asked.. 

I can't make that decision in one minute of conversation and if it's not well substantiated/founded (don't nknow the right words)

Ofcourse i asked her my questions again and explained my worries. But no, this are the two options, you choose. So i choose the change in the painkiller, because i don't want to quit with the Humira if it isn't sure that it doesn't work.

So i got the painkiller Naproxen (1000mg). I wasn't happy about that and a litlle bit surprised, because my Rheumatoligist knows i had some complains with this painkiller in the past, thats why he put me on Cox-2 painkillers. But what do i know? Perhaps it will work this time

So on friday i started the Naproxen, it didn't work for the pain, got more nausia, didn't sleep at all that night. Got into a huge fight with my husband in the early morning, because i was getting no sleep and was extremely irritated by everything. (thats not good for your relationship)

My headaches got worse, not yet a migraine, but close... 
Last night i slept for maybe 3 hours...

This morning i looked back on this horrible weekend,  i feld worse and worse. I was also gasping for breath. 
So what changed? AHA the painkillers. So no more Naproxen ever again for me 

And no, i'm not gonna call back. I will waith till the 13th of October, then i will see my Reumatoligist again and ofcourse i will mention the above to him.
 .... stupid assistent  

[Turnedlight]

Oh poor you that’s rubbish - they should be offering the option of changing to a different bio, not just stopping it! They know very well that they don’t all work for everyone and you have to experiment a bit.

As for Naproxen, I’ve not had that one but I was given meloxicam and I got a migraine straight away. Came off it for a few days, tried again and bam, migraine. But they know I can’t get on with it, and I haven’t been offered it again nor any other nsaids. It sounds pretty silly if you didn’t get on with it before to make you try again!

Anyway, I hope you soon find a bio that works on your psa, then you won’t be needing the pain killers.

Good thing you are seeing the rheumatologist soon..

[YvonS]

Oh poor you that’s rubbish - they should be offering the option of changing to a different bio, not just stopping it! They know very well that they don’t all work for everyone and you have to experiment a bit.

As for Naproxen, I’ve not had that one but I was given meloxicam and I got a migraine straight away. Came off it for a few days, tried again and bam, migraine. But they know I can’t get on with it, and I haven’t been offered it again nor any other nsaids. It sounds pretty silly if you didn’t get on with it before to make you try again!

Anyway, I hope you soon find a bio that works on your psa, then you won’t be needing the pain killers.

Good thing you are seeing the rheumatologist soon..

You are right, it's rubbish.
And i don't get into an discusion with a assistent nurse who doesn't want to take her time to hear the questions and symptoms.., so i'will try be patient until my appointment.
This happend once before with a other assistent nurse and i'm sure my Reumatoligist, like that other time, isn't gonna be happy when he hears about this. He realy listens and want to help me.. 
So in the mean time, i have to deal with it and wait

[jiml]

It's awful Yvon that the assistant treated you that way, she obviously had no idea what to do for you. So gave you impossible choices, not good choices she could have said she would check with the rheumatologist rather than giving you an ultimatum
I hope you can stick it out till the 13th and you get some sensible advice from the rheumatologist then 

[YvonS]

It's been a while.... sorry about that... i'm not feeling soo good, i'm in a lot of pain.

I went to my Reumatoligist on the 13th of October, and he was not amused by the assitant nurse giving me another painkiller. But because my compliants went away when i got back on my old painkillers, i had to go on with the Humira. For the pain in my neck and arm, he send me to a Orthopedist, to see if there's something he can do.
i had to make a new appointment for over 4 months, and my Reumatoligist also told me he wouldn't be working in this hospital anymore, his last day will be in december,  that i had to see anther Reumatoligist  
I was in shock, finally i had a doctor who realy listend, who was there for me...and now he is going away? Who is replacing him?

Then, on the 13 of November, i had my flu shot, and all my pain and fatigue came back 
So i thought this would go away in time, before my next shot.
I took my next shot 12 days later..... nothing, still in pain.

I went to the orthopedist, got another CT-scan, long story short, he is convinced that the pain in my neck and arms/elbows/shoulders is not from nerves, or bone, or arthrosis, but it's all due AP. So it seems that the Humira isn't working for me at all. He advised me to speak to my Reumatoligist about that.

I got a new apointment for a new Reumatoligist, 26th of Januari. I looked this doctor up on the internet. She is not a expert on AP but on a other Artritis. So i called the hospital that i want to have a apointment with a Reumatoligist who is an expert in AP... They didn't want to help me, i had to this, take this Reumatoligist, i got angry and told them that i had to walk hospital in and out for 10 years because reumatoligist don't have expertise in AP, they told me they would phone back.... After 3 days still no call, send them a email, explained them also about my pain, the orthopedist, and told them that waiting for Januari is long, so please chance the Reumatoligist before i get an appointment until februari of March...

And still waiting.

[jiml]

Ohhh no Yvon that sounds terrible when you know that changing from humira to another bio would probably help, it sounds like you are not getting the best help from your rheumatologist
I hope you can put up a good case for changing the bio when you do get to see the rheumatologist. There are so many they could choose from see Biological Treatments For Psoriasis

[Fred]

Yes I agree with Jim, have a look at the thread he pointed you to and ask about trying one of the "interleukin" types. I would recommend Stelara as a good starting point.

Good luck Yvon

[KatT]

Hope the next treatment works Yvon 

[YvonS]

Thank you all for all your support, that helps a lot for me feeling better
Hopefully i won't have to wait to long for a new appointment.
Also thanks for the advise and the link!

[Turnedlight]

Hope you get a new bio - humira didn’t work on me at all, but the next one did.