It is four days since my last post, and I spent two of those in a semi-comatose state.
I either reacted very badly to this particular opioid, or the patch was just too high a dose. The pain doc has opioid conversion charts, and using the amount of oxycodone I usually use daily, he decided that the 10mg per hour of Norspan (Buprenorphine) patch would be the place to start.
There is a 5mg per hour patch, but this is only for people who have never been exposed to opioid or strong narcotic pain medications. So regardless of my previous dosage of oxycodone, I would have started there anyway.
So what happened?
At first I felt nothing. A few hours in, the nausea began. But I thought the pain was lessening also. Good! Though I wasn’t a fan of this treatment approach, I started to feel quite happily wrong.
Then I started feeling tired, so I decided an early night was the way to go. When I put the kids to bed, I went to bed too.
Around 11pm I woke up feeling so nauseous I headed for the bathroom. Or rather, I tried. I rolled over in bed and the whole room spun. I tried to stand but couldn’t. I crawled to the bathroom. I tried to throw up, but only retched pathetically. Then the room was spinning so much I lay down on the cold tiles.
They felt wonderful.
I passed out.
I woke up around 2am. I crawled back to bed. Lying on cold tiles doesn’t make arthritic joints feel wonderful. I slept for another hour. I woke to intense nausea. I fell asleep again.
At 7:30 I heard the kids had gotten up. I managed to walk down the hall and to the kitchen. I had to sit down on the floor. I crawled to the couch and then called for my son to get me the phone.
I had to call my ex-husband to come and take the kids to school.
He had already gone to work.
The kids were amazing. The made their own lunches, and they walked to school. Not a big deal for a normal 10 and 11 year old. But my son has Asperger’s Syndrome. He has never walked to school without me before.
So if there is an upside, he achieved something that day that he hadn’t previously been able to do. Necessity is like that. I am proud of him, so proud. But angry too. It cost him great anxiety and it wasn’t easy for him. It also wasn’t easy for my daughter, who supported him all the way.
My husband came home from work early and picked up the kids. He took them to their after school activities and fed them. He stayed with me until bed time and made sure everyone was OK.
I am very thankful to him too.
But this drug incapacitated me more than RA does.
It would seem the choices are either deal with severe pain. Or take strong opioids. The problem with that is for the narcotics to be strong enough to manage the pain, they are also so strong that they sedate me completely.
OR.
Take prednisone.
Again I am thinking quality of life is more important that quantity. In the end it will be my choice.
But if I take the prednisone I will look fantastic when I see my new rheumy. That appointment is still eleven days away.
I can’t wait that long. The pain is too awful. I don’t think it’s worse than it was before…but now that I know I can make at least 50% of it go away, I can’t live with it anymore. My tolerance is gone.
I am spent.
Prednisone it is.
Oh so sorry that the patch didn’t work. Maybe it was just to strong? This is the patch that my rheumy ordered for me, but the insurance would not pay for it until I had tried Morphine. Hopefully they will be able to get something done for you. Kudos to your kids!
I know what you mean about looking good for the rheumy. When you feel so bad basically, but the pred perks you up it’s a problem describing how bad it is.
Your kids did great. You must be so proud of them.
With RA you always seem to be waiting for something – that’s what I hate about it. On the plus side it used to be even slower
Hi,
I am sorry to hear about the reaction.
Did you end up pursuing the antibiotic treatment? Your rheumy is unlikely to be supportive, mine were not at first but reluctantly now are happy to support it now they have seen my improvement. For me it is the best non toxic long term treatment.
Dave
Hi David, I did try antibiotic therapy. Probably not for long enough though, I must admit. I have just stopped it, because I am starting Arava (leflunomide). My new Rheumy asked me to stop it and try Arava. You’re right, none of my rheumies have had any faith in antibiotic therapy. I am very glad to hear that its working for you! Are you taking minocycline?
Hey, I,m rheumy abroad
Norspan is the worst choice.
Arava will work for you, i think,
Good luck!
Hi Choi, I do believe you are right – norspan was not a good choice for me. The jury is still out on Arava…but so far so good! Thanks much for your good wishes 🙂
There is a CD set called called Baby Blessings which was written and narrated by Arthur Burk, and published by Sapphire Leadership Group. Even though it was meant for babies, many people find it to be very helpful to them. Some, including Arthur Burk himself, have been miraculously healed by doing this type of work. He was cured of a congenital eye defect. (A missing part of his eye grew back.) These CD’s may be helpful to you and also your son. I have been healed of autoimmune illness through the teaching of Pastor Henry Wright. These are the two best resources I know for anyone who needs a miracle. I lost more than 20 years to incapacitating illness during the prime of my life, from 30 to 50 years of age, and I think I could have been healed much sooner if I had known about these things. God bless you.
Thankyou Susan, I’m a firm believer in trying every therapy available. Its amazing what can heal…I’m glad you’ve had so much success. All the best to you.
I am 58 and just getting into the Internet . I have had severe rh for over 15 yrs and to see all these people and what they have to say is the best thing . I live on my on my own and I have found rh to be a very lonely place especially if you don’t no anybody with rh . I have been on so lone planquienil and methotrexate for 7 plus yrs . My councillor got onto my dr about pain management . I thought wht I was doing was it . Next thing I’m on norspan patches 10 and 5 . Went to see my rhumy and he took me off metho just like that I have lost to much weight . Now I think I’m worrying about the patches I think there making me nauseous or is it the planq doing it he put that up from 200 to 400mg daily . It’s all so confusing but at least I can c now I am not alone . Talk to me . Everything I’ve read has been helpful in some way .
Hi Marilyn, I totally understand how lonely you must feel. My marriage broke down, with RA being a big factor in that. I am grateful for the fact that I have two kids, so I’m not all alone. Have you been to my facebook page? https://www.facebook.com/arthriticchick. You will meet more people with RA there…it helps 🙂 Most people just cannot understand what we go through, even if they are caring enough to try.
The norspan patches definately made me nauseous…really quite nauseous in fact. It might settle down, but there might be better options for you? Is it controlling the pain? Are you on anything else aside from the plaquenil and the norspan? Plaquenil is really only for mild disease…can you get a second opinion? It doesn’t sound like things are under control. Please post here or on the facebook page and keep me updated? We’re here for you 🙂 Take care.
Hi
I started on the 5mg patch, it helped a little but did not manage the night pains. My doctor prescribed the 10mg patch. I wore it for two days and the nausea set in, then the ‘out of it’ feelings, tiredness, bad eyesight and general feeling like s..t!!
I have taken it off yesterday, and still feel nauseous, week, tired and generally unwell.
Sorry Jill…its a nasty experience, isn’t it? You must be like me…5mg is not enough, 10mg is too much!!! Hopefully you’ll be like me, and it will be out of your system in 24 hours. I hope you feel better soon. And find a pain med that works for you!
hi all
im a chronic pain sufferer after surviving a motorcycle accident in 1977 that almost severed my lower left leg and injured my back.i got by for many yrs without pain relief but I am now on norspan . started 5 mg no effect then to 10 mg no effect then to 20 slight relief but in reality not much im waiting for my dr to get approval to increase it too 30 mg ive not suffered and nauses with them at all but not much pain relief either.
I hope you find something that works for you the pain day in day wears you down,
all the best dean
Hi Dean, sorry I missed your comment. I’m sorry you’re living with so much pain! Have you tried different opioids? I’m sure you have…I hope there is something out there for you…pain sure does wear you down. Stay strong!
I have been taking Norspan 20mg patches for some years now.
Recently I have had surgery to overcome the chronic pain causing bone and joint issues.
How is the best way to come off these patches/drugs?