Pain meds?

[redhead1226]

Pain med? With PBC my doctor doesn’t want me to take nsaids. What do people here take for pain that doesn’t change their platelets ?

[ninjagirlwebb]

Why do pain meds impact platelets? My hep said I could take ibuprofen every now & then. He didn’t mention how it might or might not impact platelets.

[EileenUSA]

Hi,

This is one topic on PBC that always gets a range of answers- Many will say that their dr told them absolutely NO NSAIDs and only Tylenol in smallest dose etc..

While others will report that their dr told them no Tylenol. And then some of us report taking the occasional Ibuprofen-- I'm in that category --I do try to avoid at all cost BUT if I am having arthritic neck pain and can't sleep- I'll take an Advil so that I sleep- it's a quality of life choice I make.. But I used to use it more frequently and now I try to manage any other way possible - still Tylenol doesn't cut the neck pain the way an ibuprofen does.

However, we are all at different stages of compromised liver etc.. So what's acceptable for one doesn't apply to all,

We have to review with our dr that knows our case and understands PBC.

[Hidden]

Like ninjagirlwebb, I'm interested in hearing if pain meds affect platelets. I've never been told this would be a problem, but anything we consume must change the chemical environment in our bodies to some degree, not necessarily for better or worse, and rarely for all-time?

As EileenUSA says, "..what's acceptable for one doesn't apply to all...we have to review with our doctor.." and "it's a quality of life choice".

You don't mention what pain you'd like relief from. In my experience that's the big issue. Pain-management is a field of medicine on its own and what is ok for acute pain that will get better in short time, and what is ok for long term pain are likely to be very different.

I am allergic to ibuprofen. I can take the prescribed dose of paracetamol for acute pain that will be short-lived i.e just a few days to maintain mobility. (Acute pain for me has been fractured neck of femur after chemotherapy. It happened a few times)

Let's hope for much better pain management rising out of the over-use of opioids, but in the meantime we do the best we can and get a lot of relief, thankfully from each other's kindness, no drugs involved Are you in PBC Foundation? Have you downloaded PBC App? I find it helpful for tracking symptoms and more.

[Kieraferret]

I take co- codomol 30/500 for joint pain on the days I work, couldn’t do it without to be honest

[redhead1226]

Sorry let me clarify. I was told day 1 of my PBC diagnosis that I should not take NSAIDs, Red meat or clams. These were the 3 things that were told to me day one. So I have used Tylenol for pain. I have not had any serious pain until now. I hurt my back and I have a bulging disk. I’ve had a few steroid shots and I can’t take the medrol dose pack as it creates high anxiety and crazy unwanted side effects so I’ve been limited. An anti inflammatory would have been best. Now with that being said, I can take whatever I need to get out of pain per my liver dr. But to

Please transition to Tylenol as soon as possible/ tolerable because they are concerned about platelets. So I have been careful. But I was curious as to what others did regarding pain.

[Hidden]

Thank you for adding this. The advice given to you re meds echoes that given to me. I had a slipped and ruptured lumbar disc more than 30 years ago. I had physio which helped but most of all, relaxation helped. I had so much stress and tension in my body at the time it was as if something had to give, and it did: a disc. I hope you start to be better. Best wishes

[EileenUSA]

For my chronic neck pain I use microwaveable moist hot packs.. I wrap around my neck and it cuts down the pain and aching. I couldn't live well without these packs.. But I do miss the ibuprofen. Big hugs to all of us who deal with disc and joint problems.. it's a challenge.

[Manipura3]

Hi! I have herniated disks on my cervical, and used to have severe pain. I used to take Ibuprofen (800) and even Oxycodone when the pain became unbearable. Now, I am using alternative treatments on myself: light yoga or pilates, walking, several techniques of meditation, and acupuncture. I don’t know what kind of pain you have, but maybe you can treat or release some of it through other techniques than medication that only treats the symptoms and not the causes anyway. Best wishes on your journey! ❤️

[donikeeth]

I take Tramadol if my pain is too bad. Otherwise I just live with the everyday pain I have. The same for me they say no NSAiDs only the lowest dose of Tylenol.

[genj65]

I can take Tylenol also but NO Ibuprofen. I can take Tramadol but it doesn't work any better than Tylenol. If I end up in ER for severe pain they will give me a IV of Duala tin (spelling) which works wonders for me but they don't prescribe it..

[PBCNewbie32 in reply to genj65]

Hi genj65,

I am newly diagnosed with PBC and I suffer from severe migraines, joint pain, and stiffness. Are you certain of the name and spelling of the medication they gave you, or did you mean Dilaudid? I've been suffering and my pcp doesn't want to prescribe anything. I could definitely use some relief. Thanks.

[genj65 in reply to PBCNewbie32]

Hi

[genj65 in reply to genj65]

Sorry I was replying earlier and my cell phone went out then I got busy at work. The name is Dilaudid sa you spelled it

It's terrible that we have to suffer like this. I. Tempted to ask my University of Michigan doctor for a marijuana card as I keep hearing that will be my best relief for pain. I pray for miracles God bless you!

[PBCNewbie32 in reply to genj65]

Ty😊

[gwillistexas]

I was told Tylenol but only if necessary. I have taken 1 in my 2 years since diagnosis. My platelets were down a few points last December so I know it had nothing to do with 1 Tylenol.

[redhead1226]

I’m going to try a acupuncture for my back

Pain. But I’m having hernia surgery next month and I’m freaking because there’s not much to take. ☹️

[Gotpbc]

No NSAIDs was my order. Tylenol and higher doses when needed. I do take advil when it's bad.. I also take CBD capsules which my dr said was fine.. it's more of a nerve settler than a high I dont like high.. anyway its tough to manage pain on tylenol only

[PBCNewbie32 in reply to Gotpbc]

Good morning Gotpbc,

I just recently started to implement the use of CBD as well. I was curious as to whether you have had any relief with the CBD? Is it just for nerves, or does it help with pain as well? Thanks.

[Gotpbc]

CBD is awesome for any body pain. Because the pain starts in the muscles, and nerves CBD is Perfect alternative.. it doesn't have any THC side effects and doesn't hurt the liver.. my dr is strict, so if he says ok, then I tend to think that it is perfectly safe.

[redhead1226 in reply to Gotpbc]

Can you tell me the strength you use? How often?

[Gotpbc in reply to redhead1226]

It's a formula based on weight. 6mg/ 10 lbs of body weight..

[PBCNewbie32 in reply to Gotpbc]

Ty so much!!! 😉

[Gotpbc]

I will have to wait until I am home. Wed.