Pain Concern
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Update on changes to David's meds.

To the many friends who have asked what is happening with David changing meds....thank you...an update.

Waiting for letter from pain consultant and getting GP appointment takes time but we made contact on Wednesday

I don't know what is wrong at the pain clinic but something is. Dr James hasn't come up with any alternative apart from his original suggestion of reducing Oxycontin right down - from 140 mgs per day to 40 mgs per day - then bringing in Butrans.

It is known how Butrans isn't very effective especially at David's level of pain. Very odd.

However David has had a long talk with himself and decided pre GP apt to stick on the Oxys. He finds the pain relief from them excellent and maybe getting used to side effects - I'm not sure. Maybe the thought of cold turkey was one step too far. GP was relieved! So was I ! So was David!

Pat x

Note. I have just been told that our pain clinic now has 1,700 patients on its books. These are seen by 2 part time clinicians. ( by trade anesthetists) Waiting times from consultant to procedure has risen from 12 weeks too 16 weeks. Waiting times for follow up and further treatment is appts is anyone's guess although for second and subsequent spinal procedures it is 12 months plus. It should be around 6 months.

This is One local NHS board in Scotland where NHS devolved but it is the same right across UK.

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Hello Paton, sounds like a reprieve for you all for the moment till David sees the pain Consultant, which I am sure is much better than cold turkey at this stage. By the time the appointment is due David will have a better idea as to how the pain is and it is his choice really with a little help from you . Best Wishes till we speak again xx

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Thanks Katie. No not seing pain consultant. He emailed GP which is where discussion took place.

Smiles and onwards

x

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Sorry did I get confused? Senior brain drain is my excuse :)

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Don't worry - David and I gibber away to each other all the time. Frightening bit though is we both understand each other completely!!

x

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Thanks Dan. Think the breathing was the worse side effect as he has COPD. Uses his inhaler a lot more and will distract him from the others.

I've heard of Fentanyl Buccan and it's onlly for those who have high tolerence to other Morphines eyc. Hope you have a sympathetic GP!! And an understanding bank manager. That is pricey.

Hugs

x

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Thanks Dan. All our info has come from consultant in email to GP and then on to us. At the moment I haven't been able to speak with the man himself. So....no idea what his logic or reasoning was.

I knew butrans is a very low pain med and that worried me.

Lots of questions which don't add up. Certainly will find out why even if it's only to keep info for another day. For now though David seem a lot happier now he has made the decision to stick with the Oxys.

Pat x

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Dan mu friend - you are amazing. Where do you get your knowledge from?

Listening to those links it almost soundss like a double negative.

All David's pain meds have worked but as his body degenerates he needs stronger meds. It was the allergy to side effects that caused problems with the Oxy. Mainly his COPD and breathing.

Will keep this info- will be useful

Thanks

P x

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Pre the Oxys he had been on Fentanyl 100 for about 8 yrs with coccodamol top up. Any higher on the Fentanyl and he couldn't drive so it was felt a change was needed.

He manages, with careful monitoring, COPD with assorted inhalers. It is stable but who knows what future years will bring?

We all know the balancing act of enough pain relief to hopefully keep it in its place yet not too much that some of life's enjoyments stay a distant memory.

We come as a team...him my eyes whenever possible (which is less and less now) and me well what he can't do. Sadly these days that is most things.

But the sun has shone today and bulbs are poking their noses out!

P x

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Hi pat hope u and David are alright so is david staying on OxyContin I am up to 80mgs twice a day now also on oxynorm 5/10ml four times a day but I have up it to 20/30mls

I don't know what my pain specialist will say when he knows how much I have put it up to.

Love to u and david

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You will get a telling off fromm your pain specialist that is certain. Seems the rough dosage of Oxynorm is 10% of daily Oxycontin twice per day.

Yes he is staying on Oxycontin 70mg x twice a day and Oxynorm 10mg twice daily for breakthrough.

Inhalers for lungs and antihystermine for itching.

Yes thanks I'm fine now don't have to think about him doing cold turkey and we won't mention my painful sisj.

Hugs

x

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Hi Pat we are having real problems in North Wales with all our departments not just pain clinic, I'm waiting to go on pain management course but have so far waited 7 months despite telling the consultant my pain meds are no longer working I'm on 200mg slow release Tramadol twice daily plus antidepressents and a low dose of Gabapentin at night, I don't know how much longer it will be, I was told 6mths ! But will have to wait and see.

Glad to hear you and David are a bit more settled, keep as well as you can

Big hugs Sheryl x

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Thanks Cheryl

Ask where you are on the waiting list meantime there are a few self help things you can do.

I listened to an article earlier about how hospita;s that have been sold to private compalnies are failing big time. This and junior Doctors leaving is oonly going to get worse.

If we got rid of all those admin staff patients might get the treatment they need

And don't forget 'pester power' - your MP, head of your local NHS board - top down I always say!

Luvs

x

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Thanks pat will do

Hugs x

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