I am seeking honest answers regarding treatment for severe pain. My PBC is “evolving “. My liver biopsy was inconclusive but I was started on urso due to symptoms and progression of labs. I recently had an MRI that shows mild liver inflammation but nothing particularly concerning based on my interpretation of radiologist report.
A recent MRI of my shoulder revealed tears in three of the four rotator cuff tendons (with fraying and retraction of the tears) from an acute injury. I’m in SIGNIFICANT pain but up to this point have been been told to take over the counter NSAIDS and ice. I contacted my hepatologist and was told to avoid NSAIDS if possible. The pain has intensified considerably. I have taken 1600 mg ibuprofen daily for a few days, it takes the edge off but is minimal at best. I would like to know if low doses of a stronger pain medication is easier on the liver. Doctors in the US are very hesitant to prescribe pain medication or treat pain in general and I just want to know the truth. At this point PBC is not my top concern.
My days are not a blessing, rather something to be survived.
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Donti
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Try seeing a pain management doctor as well as orthopedic. I had my bicep reattached then 5yrs later rotator cuff repair. Not able to take Tylenol or nsaids due to pbc. Pain management put me on pain medication and Voltaren gel(now otc). Good luck
Y-now. I've replied twice to your message and neither has appeared. Thankyou for your response. I'm currently taking 200 mg of ibuprofen 3x daily. I include Voltaren gel on my shoulder when I take the ibuprofen. Neither works alone, but I'm doing well when using them together. I'm just trying to make it until I have my day in surgery. Thanks!
Living in the UK our meds may be different..I had op long time ago on shoulder all ok now but could only take paracetamol for pain relief...was told not to take Ibuprofen as could upset liver.
Thanks. Watched a PBC foundation video with Prof David Jones within recent months stating ibuprofen (buprofen in UK) is frequently said to be harmful but is perfectly okay.
I was told to avoid paracetamol and ibuprofen but I can take prescription pain medication Naproxen for joint/muscle pain. I can take 500mg twice a day if needed and with a 20 mg Omeprazole once a day with it to help with stomach issues. I take it in the morning with my Urso Acid (full dose) with a yoghurt. My PBC specialist was fine with this but said to avoid long term . I really hope you get the right medication quickly, there’s nothing quite like shoulder pain. Good luck x
Thanks for the wishes and detailed pain treatment. I'm waiting to schedule surgery and have to survive without Rx meds until then. I'm getting by 200 mg ibuprofen tablet and voltaren gel applied to shoulder 3x daily. Total of 600 mg ibuprofen. Saw a video on YouTube where Prof David Jones said ibuprofen was actually okay. Hepatologist (in US) differs, but said okay if absolutely necessary. Just waiting for surgery.
Isn’t a torn rotator cuff a surgical issue? Is there a reason your doctor isn’t going that direction?
For years I’ve been boiling organic pineapple peels and core for an hour in a saucepan full of water to make a super-inflammatory tea. The active ingredient is bromelain, and it works as well as a high dose ibuprofen.
In doing research on bromelain, I found this amazing supplement.
Before you get trapped in the pharma pain relief path and all the terrible risks that come with it, get online and order Heal-N-Soothe. It is a supplement that’s highly anti-inflammatory and also claims to break down the deposits that form in your joints causing arthritis. They recommend starting at a high dosage and stepping it down, which I did. I’ve had problems with my knee and back for years and it got really bad last winter. I started this stuff in January and have not had joint pain of any kind since. I plan to have a knee xray after a year to see if its promise of breaking down arthritis is true but can tell you my knees haven’t felt so good in years.
The one negative with Heal-N-Soothe is it affects clotting so you have to stop taking it if you are going to have dental work, surgery, etc.
In January when I expressed concern about wrecking my gut with Ibuprofen, my doctor suggested trying topical ibuprofen directly on my knee. It’s called Voltarin. Since it’s a cream, it is absorbed where you apply it. Obviously, it will end up in your bloodstream but it doesn’t get the opportunity to mess up your digestive system. That was pretty helpful too.
Yes, there is surgery in my future. I'm just trying to survive as I wait to get surgery. Thanks for your input on pain treatment with PBC in mind. I've had a spinal fusion and am VERY familiar with chronic pain and the side effects of meds. My post was meant to discuss how to treat pain with PBC rather to focus on my shoulder.
Bromelain! My doctor saw me for a follow up on the knee thing after 2 weeks and said he’d never seen anything like the improvement I had. That was with the pineapple tea. I hadn’t found the supplement yet.
See my full comment above these. I started by taking 3 pills 3 times a day for a couple of weeks, then reduced to 2 pills three times a day, then 1, and then I started just taking the 3 together in the morning when I get up.
Thanks, Michi1. I will give it a try. I do have a lot of GI issues. Hope it won't tear up my gut. By the way, I recently started Hako Med therapy with my pain management doctor and found it quite effective in reducing my back pain. Best wishes!
Donti. If you have been advised to take Urso do so. There are indications that you have PBC. As for pain killers you should avoid ibuprofen. Maybe ask your doctor if you could take co-dydranol. I was prescribed this at the hospital after the doctor checked if they would work with Urso. This works for me. Good luck
I'm on Urso. 68 years-old so I'm a little past the time when PBC usually shows up! I finally replied to JanetFolley and Cascade35 about a (relatively recent) YouTube video I watched where Prof. David Jones said ibuprofen is okay. I have searched to find the video, but there are a lot of videos to go through and I have not located it again (yet).
Hi Donti - why don’t you get rotator cuff surgery? Why live with all this pain? I had a while in my tendon, they took a piece of my bicep out, and 5 anchors after cleaning up the rest of my shoulder. It’s not as horrible as everyone says! I was so happy to finally get rid of the pain. Almost a year later and I don’t have FULL range ( close to it) - and thank goodness I’m not in horrible pain anymore.
Good luck!!!! Reach out if you have any further questions!
This is nice news as I've been hearing horror stories! I have a spinal fusion and that was horrible - both before and after. Yours is the first I've heard of someone mentioning anchors involved in rotator cuff repair outside of an article I read regarding such surgery and the choice of anchors as they relate to people with osteoporosis (that's me)! Thanks for your reply.
for those in the US states where it is legal (don’t know about the UK) I use pot cream—50% THC and 50% CBD. It does NOT get you high if you just use a small amount on shoulder or knees. My hepatologist actually suggested it to me. It’s highly regulated here in California so you know what you’re getting. I know even older people who use it topically like this for knees and other joints. My hepatologist (and again am in California where they have a lot of experience with these alternatives) felt it would be far better than Voltaren cream especially stacking that on with other meds. YMMV but that’s something that has helped me.
Thanks! I'll definitely look into it! Does pot have to be legal in your state to purchase this cream? I've seen a lot of places selling CBD oil, but wonder if the TCH in it makes it unavailable in Kansas. I need to check!
like I said, I live in California and it is not only legal here but is highly regulated and many medical uses for it. My hepatologist prefers this cream over pharmaceuticals because of liver issues and the fact you don’t need to use very much. Yes, mine has 50/50 THC/CBD. There are some dispensaries here who specialize in medical and medicinal uses. Those are the ones I use (as well as many of us old folks!). Though the cream contains THC it doesn’t get you high as long as you’re not slathering it all over your body. Small amounts on painful joints. Anyway has worked for me. YMMV. And ALWAYS check with YOUR doctor beforehand.
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