Hello everyone

I did the SCS trial and it's not for me.

We discussed other options and have decided to switch me from BuTrans pain patch 20 mcg/hr to extended release Morphine.

He's titrating me down from BuTrans 20 to 10 mcg/hr. I will start my first 10 patch tomorrow and will change them weekly until I see him again on Feb 8th. At that time he will take me off the BuTrans 10 and put me on ER Morphine.

Along with the BuTrans I take oxycodone 10-325 up to 3 a day and I usually have to use 3 now. I will also be able to take the oxycodone with the Morphine.

Since the only other pain med I have tried is hydrocodone I/we think it's time I tried something else. I believe I've read of a few others on here that take the combo of ER Morphine and oxycodone and it has helped them quite a bit.

I have never reached my initial goal of being able to cook, clean my house and grocery shop. This May it will 3 years since this ugly SFN monster raised his head and changed my life forever. I know I have to keep pushing to try and find something that works for my pain.

My Bubba had been gone 4 1/2 months now and I know he would want me to fight this with all I have. It was so much easier fighting when I had him by my side.

I was finally able to clear out a corner of the bedroom where he had spent his last month. I'd just thrown things in that corner for over 3 weeks in August. I shed a lot of tears while sorting it all out but I did it. It was just a small thing but he would be proud that I was able to do it.

I just wanted to share with y'all my next step in my SFN journey. Wish me luck and I'll let you know how it goes for me.

Take care everyone

Debi from Georgia

Hi Debi,

I truly hope the medicine changes work for you and so sorry to hear of your loss.

Please keep us informed about your progress...I'm praying you will meet your goals.

All the best to you,

Cliffman

Debi,

I have tried various medications over the 19 years of my PN/SFN and joint pain from Sjogren's. I can tell you that the Fentanyl patch is stronger the BuTrans patch (they are different class/schedule) and you may find it is more helpful. The pharmacist (that is a part of the my pain mgmt clinic) told me that Fentanyl works better on nerve pain than oral oxy & morphine meds...and he was correct. Just thought I would share this, in case you are still considering options. Patches are so much easier to use and you don't have the daily peaks/valleys of pill mgmt (which still come with ER meds).

I wish you luck and hope you get relief soon.

Thanks for the info. I did not know it worked well for SFN. Good to know.

I'm being a little selfish in not switching to another patch. I am having an above ground pool put in this spring because it helps me so much with the SFN. That's about the only exercise I can handle. I use a donut float and am able to exercise my legs and arms without touching the bottom (which would kill my feet). Because we will be using the pool everyday I'm afraid to use another patch right now. It also does not need to be exposed to the sun. I use the clear covers over my BuTrans patch but it still feels wet under the patch when I take it off. Not sure if it's water or sweat so I've always wondered if I was getting the full effect of the patch.

Does that make any sense ?

I know Bubba would be thrilled that I was putting this pool in for myself but I still feel a little guilty about it.

Debi

Makes perfect sense!! Let's hope you get good results with the ER Morphine. Keep us posted.

Hi Debi

Wishing you all the best with the transition from Butrans to your new meds. Hope you get some improved pain relief - you deserve it after everything you've been through . . . don't feel guilty about getting the pool - I'm sure Bubba would have put one in for you before if he'd been able to - and he'd be the first to say if it helps ease your pain then do it! Roll on spring.

Awwww.....thanks bluesfan

Debi

I'm 3 days in on my 2nd 10 mcg/hr BuTrans patch.

I started getting an earache early last week and finally broke down and went to the dr on Saturday morning. Dx: Sinus and ear infection.

I can't remember the last time I felt THIS bad ! Because of the infection I have no idea what is related to the infection and what to withdrawal from titrating down on the BuTrans.

I was finally able to get out of bed late yesterday afternoon and shower. This morning I feel like I'm on the road to recovery thank goodness.

We'll see how it goes from now to Feb 8th on this 10 mcg/hr patch.

Thanks to anyone reading this

ps....why do dr's insist on giving antibiotics that are linked to neuropathy ? I have severe SFN with no A or C fibers left in my feet per biopsy. He gives me Cipro after I specifically asked him NOT to give me any antibiotic linked to neuropathy. Vent over

Take care everyone.

Debi

Hi Debi,

Sorry to hear about the earache. I think a lot of doctors rely on "Cipro" as their go to antibiotic in most instances. For example every time my Mother has an urinary infection her GP insists it's the only antibiotic that will work, perhaps that's true but I question it.

If you don't mind my asking what type of side effects (if any) have you had from the oxycodone 10-325. My pain management Dr. told me they it does not work well on nerve pain but obviously it does in your case. I've reached 1800 mg of Gabapentin and it's not helping much with the pain.

Cliffman

You are probably right about the Cipro and I'm allergic to Penicillin so that may be why he gave me that.

At first I was on hydrocodone and it helped. Then when I went to the pain mgmt. dr and he put me on BuTrans he had to switch me from hydrocodone to oxycodone because he said hydrocodone doesn't mix with the BuTrans patch.

No side effects from it other than having to take a stool softner maybe once a month if that. I guess I'm lucky on that end

And yes the oxycodone does help me. I can take up to 3 a day and most days I have to use the 3. Not sure why your pain mgmt would say that. Sounds more like my neuro talking

When I was just going to my PCP and a neuro the neuro would not prescribe me any type of pain meds...I had to get them from my PCP and my neuro wasn't too happy about it but it was helping me.

I'm also on 1800 mg of gabapentin. That's my personal limit with that drug

Does your pain mgmt. dr not give you anything for pain ?

Debi