Which medication is available next?

EVen

Hi everyone, I'm 49yro female with OA in neck, hips and lower back. Had my dx about 4 years ago. My pain is increasingly getting worse, and over the years. Each time my GP ups the meds to something stronger. However they've now told me I am on the highest level of each of the items I'm prescribed. So now this means my pain cannot be managed and is steadily getting worse.

I have had an urgent referral to an Orthopedic Surgeon, but due to the completely understandable backlog they can't say when I will be seen, apart from "less than six months".

My quality of life is decreasing at an alarming rate, some days I can barely move. It's like a really long drawn out and never ending flare up.

My question (finally I'm getting to the point lol) is what medication is available next? I'd like to know names of products. Is there any hope, is there anything?

My GP has said the referral will enable discussions to give me something stronger, or investigate further to see if there is an alternative to pumping me full of drugs.

Currently I am on:

Gabapentin (1800mg a day total)

Amitriptyline (50mg a day total)

Zomorph (60mg a day total)

Oramorph (20ml a day total)

There have been other drugs along the way, but this is where we have ended up, and with what I am told is the highest dose a GP can prescribe.

Any comments / thoughts will be greatly appreciated. People to talk to at 2am when the pain wakes me up as well ... any pointers on where I can find a 2am club?

Thanks in advance

Em

Mike1

I have widespread OA and am on Zomorph and Oramorph, the longer one is on them the bigger the dose is needed to achieve the same level of relief. I have been on them so long that all they do is knock the edge off the pain. From time to time I do take more Oramorph than the recommended 20ml a day, although I do not use a measure I merely swig it out of the bottle. When the GP asked me how much I took and I told him I swigged it he said "you didn't tell me that!". Seriously though it is important that only a doctor amends your dose as there are so many variables. It may be that you get better relief from morphine from patches or suppositories, I would ask you GP for a referral to a pain clinic if you have not already had one. I find that sitting in my recliner at 45 degrees relieves some of the pressure on my back and neck, I also use crutches around the house and a wheelchair outside. I only get 2 or 3 hours kip a night and frequently nod off during the day for short periods. What I would also say is do not rely on meds, try to distract yourself by doing something that you enjoy and which does not elevate your pain. I find reading good and watching the TV. I also make models and do a bit of woodwork, although sometimes I can only do so for 10-20 minutes at a time. My cat helps too!!

EVen

Heya mike1, your situ sounds very much like mine. Yeah I swig from the oramorph bottle, and at times have taken more than prescribed. I can stay in same position for about 40 mins before I start helping in pain. I use a stick to walk, and am looking into getting a mobility scooter for outside as I so miss canal and woodland walks with my husband and dogs. I do draw, so that can distract me for a bit, I can get lost in that and don't think about how much everything hurts as much as I do when not. I did a virtual pain clinic in the summer. However it more about how to visualise my pain and recognising the 'I can't do that anymore' thoughts. I was told that by going on the pain clinic would get me access to a pain consultant. But that isn't happening. It took me breaking down on a phone call with a doctor and sobbing for 20 mins that got the urgent Orthopedic surgeon referral. I just wonder what they will be able to do. Are there stronger or different meds they can suggest.

We have 2 dogs, the eldest is 13 and just hangs out with me being quiet and enjoying naps or lazy mornings, the younger dog my husband will walk for over 5 miles a day on his days off, so I don't feel too guilty for not being to walk like that when it's just me at home. Animals are great source of silent support aren't they? 😊 they are mostly happy to chill next to you.

N1gel

I've got OA in my left elbow and right thumb; I can feel my right elbow going the same way (20 years on crutches).

But drawing or anything creative involves a state of mind called 'flow' which takes you away from the pain. There's a lot of life models doing on-line Zoom sessions now, which is almost as good as the real thing and you can often find a nice little supportive community around your model (probably not at 2AM tho!) I draw once a week for about 2.5 hours solid.

Ellen

Moderator's note:

Mike1's Dr was quite right to advise against 'swigging' from his oramorph bottle. This is potentially very dangerous as no-one knows how much has been taken. A Mike says "Seriously though it is important that only a doctor amends your dose as there are so many variables."

Please everyone only take medications as prescribed by your GP.

Stay safe.

Ellen.

YvonneH

Good morning!

@Mike1 and @EVen We have had this problem before on the Online Community - how we can help those in need either late at night or early morning. We had a discussion called 'Night Owls and Early Birds' and whenever someone was around they logged in there so they could be found if another popped into the community later on and they could find each other for a chat.

Maybe that would help you both (and any others too 🙂

Yvonne x

EVen

Thanks Yvonne for the info on the Night Owls discussion thread -- I will check it out 😊

Em

Anna

Hi @EVen ,

It sounds counter-intuitive, but I was in great pain for over a year with RA and osteoarthritis (I had to take early retirement because of it) and I found that movement, although very painful, was one of the best ways I found to alleviate some of the pain. I don’t mean strenuous exercise, just very gentle stretches. It often hurt to do them but I always felt better afterwards, physically and mentally. Perhaps you could talk to your GP or consultant about whether it would be appropriate for you? The Versus Arthritis page called ‘We are undefeatable’ suggests exercises for different parts of the body - I found the neck stretches the most helpful.

https://www.versusarthritis.org/we-are-undefeatable/

All the best,

Anna : )

Airwave!

Now there’s something the mods can pick up on, a live chat in which what you say is just a line and not a permanent post. Great idea. I don’t think everything should stay live for long, some might want to forget what they say when in extremis? What about 48 hours?

Only registered users of so many posts standing can post? Might save a few souls in those desperately dark hours? Or at the least give them someone to talk to? Even on a limited use basis it might prove useful?

it’s a grin, honest!

frogmorton

I go up to the max dose of gabapentin 3600 if it works it could still be upped. The only medication i ever took which didn't have any side effects for me too🙄

sadly it didn't work for me. If you start at 2am club I can join anytime form 5-6am!

MERRY CHRISTMAS