Need New Pain Medication

[JLH]

Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treati ... Naltrexone

[JLH]

http://www.perskyfarms.com/phpBB2/viewt ... ht=francie

[tex]

Mayo Clinic says no Ibuprofen, no Acetaminophen with LC.

I have not been in remission for years so I haven't noticed an effect of taking the ibuprofen - I just always have watery D.

Is it problematic if you take it all the time?

Sydney and Jane,

Acetaminophen (Tylenol) does not trigger MC symptoms, to the best of available knowledge, but the reason why I agreed with you Sydney, that it is not safe, is because of what Marliss pointed out. It's hard on the liver, and high doses (especially in combination with alcohol) can cause serious kidney damage.

That said, back when I was recovering, I didn't know any better (most of this information has come to light since then) and I took 2 max strength Tylenol (540 mg each, as I recall) every 4 hours (until I reached the labeled 24-hour limit) on most days when my body was wracked with pain. My symptoms were marked not only by gut-wrenching GI issues, but my joints, and my neck especially were often so stiff and sore that I couldn't work, couldn't sleep, couldn't think straight, etc. Headaches and severe migraines were a regular problem, and the Tylenol allowed me to function on at least a mediocre level.

Apparently today my liver and kidneys are none the worse for wear, but knowing what I know now about it, the decision to take it wouldn't be a no-brainer the way it was back then. I might still use it, but I would be more cautions about how much and how often I took it. I haven't taken any Tylenol in probably at least 7 or 8 years, because after I removed all (and I do mean all) of the problem foods from my diet, all the stiffness, headaches, migraines, aches, and pains went away, and never returned.

Tex

[SweetSydney]

Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treati ... Naltrexone

I have a friend, whose husband also has MS-he takes LDN-has had some improvement in pain. But, we are both in the advanced stages of MS.

Thanks, Joan.

Sydney

[SweetSydney]

Mayo Clinic says no Ibuprofen, no Acetaminophen with LC.

I have not been in remission for years so I haven't noticed an effect of taking the ibuprofen - I just always have watery D.

Is it problematic if you take it all the time?

Sydney and Jane,

Acetaminophen (Tylenol) does not trigger MC symptoms, to the best of available knowledge, but the reason why I agreed with you Sydney, that it is not safe, is because of what Marliss pointed out. It's hard on the liver, and high doses (especially in combination with alcohol) can cause serious kidney damage.

That said, back when I was recovering, I didn't know any better (most of this information has come to light since then) and I took 2 max strength Tylenol every 4 hours (until I reached the labeled 24-hour limit) on most days when my body was wracked with pain. My symptoms were marked not only by gut-wrenching GI issues, but my joints, and my neck especially were often so stiff and sore that I couldn't work, couldn't sleep, couldn't think straight, etc. Headaches and severe migraines were a regular problem, and the Tylenol allowed me to function on at least a mediocre level.

Apparently today my liver and kidneys are none the worse for wear, but knowing what I know now about it, the decision to take it wouldn't be a no-brainer the way it was back then. I might still use it, but I would be more cautions about how much and how often I took it. I haven't taken any Tylenol in probably at least 7 or 8 years, because after I removed all (and I do mean all) of the problem foods from my diet, all the stiffness, headaches, migraines, aches, and pains went away, and never returned.

Tex

Hi, Tex.
I already have liver problems, and kidney problems run in my family, so I avoid Tylenol. It never relieved so much as a mild headache for me anyway.

I eat such a bland diet, there isn't anything I can take away.

Sydney

[SweetSydney]

Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treati ... Naltrexone

Joan,
Started thinking about the LDN.

Any idea of the dose I should request?

I thought, just because it didn't help Craig, doesn't necessarily mean that it won't help me.
Baclofen is just not cutting it anymore, with spasticity. I was told at my last appt. to expect to be in a wheelchair before too much longer. I'm fighting that idea, hard.

Sydney

[tex]

Sydney,

I agree that it definitely might be worth giving LDN a good try, because many people have had amazing results with it, and remember that even the best medications known to modern medicine don't work well for everyone. The only way to be sure, is to give it a fair trial.

I'm not familiar enough with it to recommend a starting dose, but I hope that anyone who does recommend a dose takes your relatively low weight into consideration. I'm guessing that you may need about half the dose recommended for most people, because I believe that dosing should be based on body weight.

I'm hoping that this will work well for you, so that they can save that wheelchair for someone else.

Tex

[SweetSydney]

Hi, Tex.
I agree-I think giving LDN is definitely worth a try.

Thankfully, my DO is very open-minded when I ask to try a medication, and he will know the dose to prescribe.

I've checked, and it only comes in a 50 mg. tablet, so I am going to ask him to prescribe a lower dose, and send it to a compounding pharmacy.

Thank you, Tex. I really don't like the idea of losing my independence to a wheelchair. Yes, they can safe it for someone that really needs it.

Sydney

[JLH]

Are you on Facebook? Lots of good groups there. I am sure there are plenty of Yahoo groups, too. I just don't like that format.

Francie (MS patient) was in hospice and got her life back with LDN.

BRB with some MS links for you.

[JLH]

http://crystalangel6267.webs.com/multiplesclerosis.htm

LDN Trust http://www.ldnresearchtrust.org/search/ ... 0sclerosis

http://www.ldners.org/

http://www.honestmedicine.com/about-the-book.html

There really is waaaaaay too much, just Google. There is a You Tube video I want to find for you.

[JLH]

https://www.youtube.com/watch?v=bOekLFIvR7I

I do have mine compounded (so far) but quite a few PP make their own from the tablets.

You are welcome to join our PP LDN Facebook group even though it is for MC, mainly.

If there are thyroid issues, the advice is to start low. I started 1.5 and will go to 3.0 and then to 4.5 which the recommended dose for most. Everyone is different and we have to adjust.

Your best bet is to connect with others on Facebook with MS who will answer your specific questions. They have files of info for you.

[JLH]

http://www.tv2.no/v/717059/

https://www.youtube.com/watch?v=36b1bIkz1x4

[SweetSydney]

Are you on Facebook? Lots of good groups there. I am sure there are plenty of Yahoo groups, too. I just don't like that format.

Francie (MS patient) was in hospice and got her life back with LDN.

BRB with some MS links for you.

Hi, Joan.

Yes, I am on Facebook. I don't like the format on Yahoo, either.

That is so wonderful to learn that Francie got her life back with LDN.

I found a pharmacy in Aurora, IL that compounds LDN. I am going to call them tomorrow, and ask if they can compound 4.5 mg, before I see my DO.

Thank you for helping me, Joan.

Sydney

[SweetSydney]

http://crystalangel6267.webs.com/multiplesclerosis.htm

LDN Trust http://www.ldnresearchtrust.org/search/ ... 0sclerosis

http://www.ldners.org/

http://www.honestmedicine.com/about-the-book.html

There really is waaaaaay too much, just Google. There is a You Tube video I want to find for you.

Thank you for all the links, Joan.
I had to add them to my "Favorites", so that I can read them, thoroughly.

Sydney

[SweetSydney]

https://www.youtube.com/watch?v=bOekLFIvR7I

I do have mine compounded (so far) but quite a few PP make their own from the tablets.

You are welcome to join our PP LDN Facebook group even though it is for MC, mainly.

If there are thyroid issues, the advice is to start low. I started 1.5 and will go to 3.0 and then to 4.5 which the recommended dose for most. Everyone is different and we have to adjust.

Your best bet is to connect with others on Facebook with MS who will answer your specific questions. They have files of info for you.

I checked with Express Scripts and they only have 50 mg. tablets. I would prefer to have mine compounded. But if the pharmacy in Aurora, IL doesn't compound LDN, I will use the directions in the YouTube video.

Yes, I am Hypothyroid, with Hashimoto's.

Thanks for telling me to go slow.

Thank you, I will check with others on Facebook with MS.

Sydney