Pain medication changes due to regulations

Posted by cmedina1 @cmedina1, Sep 4 10:03am

I’ve been told twice now by my current doctor that they have to lower my pain medication because they’re being forced to by the government. I myself have lowered my medication twice to cut it in half. I’ve been on this medication for 26 years. I’ve tried to lower it again, but life as you know it changes so quick that I was not able to take care of myself. Now I’m in this position where they will have to lower it. I’m just wondering if anybody else out there has been told the same . Thanks for any input you may have.

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Profile picture for cmedina1 @cmedina1

@mslee56
I am under care of pain management. This is coming from that doctor. This will be the 3rd time trying to get it down lower.

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@cmedina1 I feel the government is cracking down so doctors and pharmacies are getting nervous, but they are still prescribing and filling opiods....especially if you are a current patient. If your pain requires the meds to get relief, your doctor should be giving it to you. Perhaps he is getting an incentive to cut your doses down? I would try to find another PM doctor and let them know that you are not getting the pain relief from your current one. It's worth a shot.

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Ridiculous, isn’t it? Laws made by people who have no idea what the pain is like.

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Profile picture for cecilyl @cecilyl

@tyyne21wigwam Back problems are tough ones.
NSAIDS have their "dark side" as well. I've said to my PRP that I'd rather take one Vicodin, maybe two, instead of six Advils or whatever number of Tylenols to deal with pain.
PT is good but it's not a magic bullet.
Great you don't give up!
How is the meditation working?
I don't know about Nalu or the stim devices for backs, but see if they give you a trial period to see if it works. If you feel it's not enough time, say so.
I had a Curonix put in over my not great knee replacement a few months ago and it's worked very well.
The trial and permanent implant post op were painful (for me) though. This isn't always the case.

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@cecilyl what is a Curonix ?

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Profile picture for kjoed53 @kjoed53

I take 3mg LDN as a bridge from prednisone to kevzara for PMR pain. I'm down to 2.5mg prednisone and at 6 weeks I'm only halfway to full effect with kevzara. I take it at night and I know it helps me sleep relatively pain free.

LDN (low-dose naltrexone, typically 1–4.5mg/day) has a growing but still niche role in chronic pain management — used off-label, not FDA-approved for this.
Where it's used:
-Fibromyalgia (the most-studied use)
-Neuropathic pain, complex regional pain syndrome (CRPS)
-Chronic pain associated with multiple sclerosis, Crohn's disease
-Generally tried after standard treatments haven't worked well enough

If you're in pain, it may be worth discussing with your doctor to see if it's an option. It's one of those cumulative effect options so pain reduction may be gradual at first. Anyone trying it should give it 90 days before judging it's effectiveness. Insurance doesn't cover it and it requires a compounding pharmacy, but I pay $110 for 90 days at a local compounding pharmacy. Online compounding pharmacies are in the $80 range for 90 days supply.

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@kjoed53
What is a "compounding pharmacy" ??

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Profile picture for kayraymat @kayraymat

@kjoed53
What is a "compounding pharmacy" ??

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@kayraymat
A compounding pharmacy prepares customized medications from scratch, tailored to an individual patient's needs, rather than dispensing mass-produced, off-the-shelf drugs.
A pharmacist mixes, combines, or alters ingredients based on a prescriber's order. Naltrexone is prescribed at much higher doses (50mg or more) for alcohol and opioid abuse, so for low doses it needs to be created. LDN is at a small fraction of the normal naltrexone dose. I'm only taking 3mg.

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Profile picture for kjoed53 @kjoed53

I take 3mg LDN as a bridge from prednisone to kevzara for PMR pain. I'm down to 2.5mg prednisone and at 6 weeks I'm only halfway to full effect with kevzara. I take it at night and I know it helps me sleep relatively pain free.

LDN (low-dose naltrexone, typically 1–4.5mg/day) has a growing but still niche role in chronic pain management — used off-label, not FDA-approved for this.
Where it's used:
-Fibromyalgia (the most-studied use)
-Neuropathic pain, complex regional pain syndrome (CRPS)
-Chronic pain associated with multiple sclerosis, Crohn's disease
-Generally tried after standard treatments haven't worked well enough

If you're in pain, it may be worth discussing with your doctor to see if it's an option. It's one of those cumulative effect options so pain reduction may be gradual at first. Anyone trying it should give it 90 days before judging it's effectiveness. Insurance doesn't cover it and it requires a compounding pharmacy, but I pay $110 for 90 days at a local compounding pharmacy. Online compounding pharmacies are in the $80 range for 90 days supply.

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@kjoed53 how has it worked for you and what are you treating? My pain specialist has suggested we try and I'm seeking feedback from those who have given it a try.

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Profile picture for dixb @dixb

@kjoed53 how has it worked for you and what are you treating? My pain specialist has suggested we try and I'm seeking feedback from those who have given it a try.

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@dixb
I have PMR but since I was subsequently diagnosed with SMM, I can't stay on the prednisone that comtrolled my pain. I have been on kevzara for 8 weeks and it takes 12 weeks or more to reach full effect. I'm only taking 1.5mg prednisone now, getting ready to go down to 1mg so I'm not getting any relief from that. I take the LDN at night which allows me to sleep pain free and I only have moderate daytime pain. I may ask for an increase from the 3mg LDN to 4.5mg since I will be off prednisone when it comes time for a refill. It's been very effective for me and zero side effects.

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Profile picture for kjoed53 @kjoed53

@dixb
I have PMR but since I was subsequently diagnosed with SMM, I can't stay on the prednisone that comtrolled my pain. I have been on kevzara for 8 weeks and it takes 12 weeks or more to reach full effect. I'm only taking 1.5mg prednisone now, getting ready to go down to 1mg so I'm not getting any relief from that. I take the LDN at night which allows me to sleep pain free and I only have moderate daytime pain. I may ask for an increase from the 3mg LDN to 4.5mg since I will be off prednisone when it comes time for a refill. It's been very effective for me and zero side effects.

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@kjoed53 Thank you

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Profile picture for jescott54 @jescott54

Ridiculous, isn’t it? Laws made by people who have no idea what the pain is like.

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@jescott54 Exactly. It is inconceivable that this is happening to people like me and thousands others that suffer from horrible and chronic pain. I understand that it these meds got out of hands in the wrong hands….by wrong hands I include doctors that carelessly prescribed certain meds to people that abused them. I need Tramadol and I was refused every single time. Any advise or suggestions are welcome. Thank you

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Profile picture for dixb @dixb

@kjoed53 how has it worked for you and what are you treating? My pain specialist has suggested we try and I'm seeking feedback from those who have given it a try.

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@dixb Many people I know have CRPS and using LDL for their pain and as you said insurance doesn't pay for it but if it relieves the pain it's worth the money. I CANNOT use it because I am on a Fentanyl patch. My doctor did prescribe a clean w/ Lidocane and Voltaren in a paste at a compound pharmacy and works great for my osteoarthritis! Not so much for CRPS!! I use THC RSO Gummies made by Encore and extremely happy. The RSO is the part usually stripped away but now found pain relief !! I use 1 for daytime and another flavor for night. I sleep much better now. I have had CRPS for 21 years and will NEVER give up!! Blessings you! Gentle hugs

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