Back Surgery - RA Flare and oxycontin

[Guest guest]

Sorry this note is so long...I hope you will read this and provide any

suggestions or help you can.

I have had RA for many years and have been in an all out flare since

June of this year. I have been on complete disability from work since

July 3rd and since my RA meds had completely lost their efficacy, I

have been participating in a drug study for Abatacept/Orencia since

Sep 05. After each infusion, I was seeing more progress from my flare.

I was having horrible back problems and the neurosurgeon said I needed

surgery. The Rheumy ok'd it and they even got approval from the

director of the abatacept studay also.

I had back surgery on Dec 13th. I had a herniated disk at L4-L5 and

the facette joints were very deteriorated and had split and were no

longer supporting the disks at all. These joints needed to be

stabilized with rods and screws. The name of the procedure was a

posterior laminectomy with interbody fusion using rods and screws.

The nuerosurgeon said the joints were so far deteriorated that they

were rotted.

Following the surgery, my RA started acting up. I was not allowed to

lay on my back and had to keep swtiching sides. My shoulders, hips,

elbows, knees, ankles and stuff were killing me and I couldn't sleep.

My pain level was at a 10, they were giving me high dose steroids plus

2 percocets and 1 roxycodone every 4 hours. These pain killers took

my pain level to a 7 or 8. This level was at least tolerable.

The OT and PT were aggravating my RA even more and I started missing

the afternoon sessions if I attended the morning session (while still

a resident at the hospital). I was talking with one of the nurses

about the pain level and how bad my RA was and she put in a call to

the doctor and said I needed to explain this to him. Bringing my pain

to a 7 or 8 was not bringing me out of pain and they needed to do

something more to actually take me out of pain. I shouldn't accept

living at this level of pain.

The Dr. came to see me and I explained everything. He ordered an

airbed be brougt in to help with the sleeping. He talked about long

term pain management with strong pain meds that are longer lasting.

He talked about good reasons and bad reasons for doing it but for

someone like me, it made sense to do this change. He asked me to call

my rheumy and talk to him and see if he would be willing to continue

this treatment method once I left the hospital and did he have a

preference between oxycontin or methadone. He ended up starting me on

oxycontin.

This drug is making me very nervous, just the idea of being on it. I

read up about it now that I am home from the hospital (after 10 days)

and I have several of the " milder " side affects that are listed. I

then read up about the methadone and its side affects are almost

identical and so are its warnings. Does anyone know about these 2

drugs and have a preference either way. Is anyone using either of

these for pain relief for their RA?

The relief that the Abatacept had been giving me from the infusions

seems to be gone at this point. My stiffness in the mornings is

severe and lasting much longer. I am not sure if my extreme fatigue

and need for sleep during the day is from the oxycontin or the RA. My

shoulders, hips, knees and all that are now hurting me in my own bed

when I am trying to sleep at night, this had gotten better. I am just

not sure what to do at this point.

Thanks for taking the time to read this long post,

Miriam

[Guest guest]

Dear Miriam- You should start back on the injections somehow if they help. Get yourself a two inch thick foam mattress topper or an airbed to help you. I guess nothing else besides abatacept works. Have you tried Remicade yet? If not, that is a good Idea especially in your situation. They can do that at your Drs. Office. It sounds like your spine was very deteriorated. You poor girl. I can only say that modifying the disease and not the pain is your best defense. Its a catch 22 with Oxy and other drugs. You might try a course of naltrexone which is a beta endorphin for pain. With big gun Opiates break through pain is frequent and you need more and more overtime until they put you on methodone to wean you off. Are you on soma or ativan? Those will relax your muscles and calm you a bit. My wishes for a happier pain free 2006. Yours, Deborah

[Guest guest]

>

> Dear Miriam- You should start back on the injections somehow if

they help.

The Abatacept is an infusion and I had one just before the surgery

and I have another one coming up. The relief that I had been

getting from it seems to be gone now. I don't know if its because

of the surgery, the oxycontin or what!

> Get yourself a two inch thick foam mattress topper or an airbed to

help you.

We have a select comfort bed with the large foam topper. Its

supposed to be a great bed but I am having tremendous pain in my

shoulders and hips from lying on my sides.

> I guess nothing else besides abatacept works. Have you tried

Remicade yet?

No. I had been on Enbrel for about 2 years and then it slowly

stopped working for me.

It sounds like your spine was very deteriorated. You poor

> girl.

It was very deteriorated. The neurosurgeon said the joints are all

in very bad condition.

> Are you on soma or ativan? Those will relax your muscles and

calm you a bit.

I have heard of those but I am not sure what they actually are. I

take skelaxin 800mg for a muscle relaxer and I take other drugs for

depression and anxiety.

My wishes for a happier pain free 2006.

> Yours, Deborah

Thank you so much,

Miriam