Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group On slow release patches now

They have to be kidding, Kevin. What has changed? Have they been able to figure that out?

No there not kidding the pain management Doctors told me a while back there's not a lot they can do now.So much damage in all my joints even the surgeon I saw in London said that if he operated it would make hardly any difference to my long term pain.If my hip is knackered they could give me a new one but then there's the risk because of my fused neck.The only other option is going back on Humira or one of the others. And that is too big a risk after my last reaction.So I will just have to suck it and see until I see my Rheumy and go through it with him. People were asking how do you define severe AS well this is it.

Kevin

Kevin - my guess is many of the newer members haven't seen the photos of your kyphosis so may not understand what you're talking about when you discuss severe AS.

Will you talk to your rheumy about other anti-TNFs besides humira? It wasn't so much the reaction to humira that was the problem, was it? I thought I remembered that you got pneumonia and it was attributed to your lowered immune system from the humira? Did I get that right?

kevin, so sorry to hear how much pain you are in

i looked up Buprenorphine and found this on wikipedia:

http://en.wikipedia.org/wiki/Buprenorphine

if you tell me the brand name of the patch, i can probably find the literature that comes with the med on the internet and post it here for you.

though my flector patch is a different drug (its a topical nsaid), it takes a few days to fully kick in for me, but then if i leave one on 24/7 and change it every 12 hours like i'm supposed to, it makes a huge difference. so hoping your pain patch might work the same way for you.

and reading the drugs you are on, looks like they've put you on "milder" pain drugs first, as they seems like they are supposed to be less addicting. but if they aren't cutting it for you, i'd let the doctors know and see if they could try stronger pain drugs, just my thoughts. just hate to hear how bad your pain is.

Yes, now I get it. I looked up kyphosis and buprenorhine patches and realize that you experience a completely different kind of pain than I do. On my worst day I ever had I only took 3x 5mg oxycodone. My sympathies are with you, and I hope so much that the new patch works well for you. I'm so sorry that you have to deal with such an obnoxious level of pain and the pain meds that come with it. Are you able to get massage? Or the ocassional hot tub? I'll keep praying for you if that's ok, if not I'll just send many good thoughts your way

The trouble is I'm on so many other drugs as well for my COPD and my Diabetes, blood pressure, Depression,That I am susceptible to get things like pneumonia chest infections ect. Your right I worded it wrong about the Humira it wasn't a reaction against it.It was the lowered immune system that caused the pneumonia.We have talked about trying a different one but like Alan will tell you it doesn't help damage pain which is what is affecting me the most.The trouble is I've had so many different pain medication over the years its very hard to find one that will work now.And also wont react with my other drugs.

Kevin

Hi sue,
Thank you for looking that up for me I appreciate it,
The one I'm taking is called BUTRANS I'm on a low dose at the moment and then Doctors going to build it up slowly. My other drugs Co-Codamol is 30/500 which is the highest dose you can take and tramadol 50 which is taken the same time as the Co-Codamol which the Doctors are not happy about me taking both at the same time but it helps.

Kevin

Hi Erica,
I am going to put a photo of myself up soon so you will see how I'm affected there is one on here already but I'm going to put it on my signature so every one can see it.There several others the same me and James look the same and so does Brad. Also my neck is fully fused at about 30 degrees.
Pray away I need all the help I can get at the moment.

Kevin

hi kevin,

here is the page for the patient information leaflet.

if you click on the pdf or the link within the gray box, you'll find the same info as would come with the drug if the pharmacist had given it to you.

http://www.medicines.org.uk/emc/medicine/17008

hope this helps. though i'm sure what would help the most would be to get rid of some of this pain. i do hope that as you continue to wear the patch, that the pain lessens in a few days.

the only other thing i could think of, remembering that chris (fyrfytr) has a pain pump surgically implanted; you probably already know that though, but thought i'd point it up, just in case.

i'll pray too, as you told erika, it can't hurt. hope you get some relief soon.

Hi sue,
Thank you that is very helpful.

Kevin