Pain Control - Oxy vs Methadone

Hi Heath

Your post is very interesting. My partner has just received a neurology appointmeny after 10 months to find out whether the symptoms he has been suffering after taking dabrafenib and trametinib are neurological.

He started with these after 3 months on the treatment, and 11 days in hospital with pneumonia, then caught influenza B in hospital.

On leaving hospital he had excrutiating shooting pains in his neck, shoulder, arms legs. Lost the use of his right thumb, then tingling, numbness, pins & needles & cramps in his legs & arms. 

For these symptoms he has been on 200mg pregabalin, 87.5mg amytryptiline, 2 paracetamol 4 times a day and 200mg morphine sulphate ( recently reduced to 100mg because of extreme constipation) a day, with oramorphe to take as & when as back up for extreme pain.

He struggles to get out of bed & get going before noon most days ( is this withdrawal).

He still has pain in his knees, walks with a gait, & can't walk too far, & has sometimes fallen with muscle weakness. He is having acupuncture for knee pain now.

Finally he has received a neurology appointment 19th Dec, so will see what they say. We cannot work out, & neither can his consultants, whether the symptoms were caused by the dab & tram, or pnemonia & influenza.

We are uncertain when & how he can reduce/ come off the drugs he is on, & how much these are still controlling the pain.

Having read up the symptoms of peripheral neuropathy, this sounds like what he has. Will see what his neurologist says soon.

Your post may have answered some of our questions.

Best wishes

Margyy

Heath

Your post is very interesting. My partner has just received a neurology appointmeny after 10 months to find out whether the symptoms he has been suffering after taking dabrafenib and trametinib are neurological.

He started with these after 3 months on the treatment, and 11 days in hospital with pneumonia, then caught influenza B in hospital.

On leaving hospital he had excrutiating shooting pains in his neck, shoulder, arms legs. Lost the use of his right thumb, then tingling, numbness, pins & needles & cramps in his legs & arms. 

For these symptoms he has been on 200mg pregabalin, 87.5mg amytryptiline, 2 paracetamol 4 times a day and 200mg morphine sulphate ( recently reduced to 100mg because of extreme constipation) a day, with oramorphe to take as & when as back up for extreme pain.

He struggles to get out of bed & get going before noon most days ( is this withdrawal).

He still has pain in his knees, walks with a gait, & can't walk too far, & has sometimes fallen with muscle weakness. He is having acupuncture for knee pain now.

Finally he has received a neurology appointment 19th Dec, so will see what they say. We cannot work out, & neither can his consultants, whether the symptoms were caused by the dab & tram, or pnemonia & influenza.

We are uncertain when & how he can reduce/ come off the drugs he is on, & how much these are still controlling the pain.

Having read up the symptoms of peripheral neuropathy, this sounds like what he has. Will see what his neurologist says soon.

Your post may have answered some of our questions.

Best wishes

Margyy

Hi Margyy

That sounds tough, well done both of you for keeping at it. Sounds just like neuropathy to me without any doubt, mine was very specific to my feet, shooting pains, hot needles, shoes full of angry wasp, dead bits, tingling etc.  If the mornings are cramps, sweats, shakes, wanting to curl up in a ball and wait for it to go away thats withdrawal. 

Unfortunately, in my case, it looks unlikely that the neuropathy will ever go away, it has got better over the last year and is not as debilitating as it was to start with.  From my eventual discussions with the neurologist every case is different where levels of improvement vary dramatically so don't think this is how its going to be forever, its possibly going to improve and be much less of a burden.  I tried amatrip, duloxetine and couple of other drugs, and for me oxy does the job, on a good day i'm almost normal (for any given definition of normal lol)., on a bad day before the drugs I would be rocking in a corner crying with the pain for hours on end, it was absolute hell for both of us.  I did find that walking bare foot on cold wet grass took the edge off quite dramatically and we decided that it was overstimulating the nerves and swamping the pain messages with different ones. You could try something like that, I also tried a TENS machine but that was less successful.  Last year I was given capsaicin patch treatment and that was really really effective so definitely ask about that, i'm now waiting for my 'booster' session.  I also tried accupuncture and that again took the edge off but had a very short effective period (4 weeks max).  

These days I have a shot of oxy (25mg) drawn up ready next to my bed and the very first thing I do is take that and wait for the warm glow to turn up.  I take senna almost every night, lots of fibre and prunes etc and when all else fails lactulose is a gentle option - Oxy has the same constipatory affect.

Best of luck with your appointment, hope my story has helped and has some things for you to look at.

H

H

Thanks very much for your detailed info. You tend to feel like noone else has ever had the same symptoms, & this site has really helped.

Managing the pain has been trial and error, but certainly improved over this year.

We will see what the neurologist has to say, & hope very much that your symptoms improve too over time.

Take care

Margyy