Wellness

[LTT1]

@GingerPeach 

I know I should remember, but cannot.

Have you taken LDN also?

[GingerPeach]

@LTT1 

Yes.  I started shortly after first being diagnosed just about ten or so years ago.  I didn't like the side effects of methotrexate and how cavalierly it was being prescribed.  

The LDN worked nicely for about 8 years and then, probably due to switching health providers, I had a gap in time with no LDN and symptoms appeared again. Soon after getting a new provider, I decided to go with methotrexate (and that was even a super low dose). 

I still didn't like the thought of being on that long-term, so stopped it and went back on LDN, which I've been on since last December.

Interestingly enough, my new rheumatologist told me that since I first told her about LDN, a lot of her patients started taking it.

(I stopped talking about it here after some comments along the lines of, oh, no, it's an opioid - clearly a lack of good research behind that comment!)

An interesting side note:  I was often taking an Advil before bed in the early days of taking LDN (but without any attention to any specific way of eating), then no Advil with the methotrexate (but, of course, you have to have periodic blood tests to make sure it hasn't ravaged your liver), but now during the new LDN period of time along WITH appropriate nutritional changes, NO Advil.

[LTT1]

@GingerPeach 

Oh! I have lots of questions and lots to share with you because I feel so much bette with this (LDN)

But first, I am hoping to avoid methotrexate which my derm said he was going to rx one year ago (because I have LPP on my scalp and many people lose their hair.)

He is rxing the LDN.

Facebook groups (including LDN Research Trust) have really helped me. When I titrate doses, I get some side effects that have gone away quickly until my body adjusts.

I already have liver damage (I guess... "Fatty Liver") and it is not due to drinking alcoholic beverages either!

Anyway, I certainly hope you are comfortable and out of pain, etc., because that is not a way to live life to it's fullest!

[GingerPeach]

@LTT1 

I forgot to mention that I noticed my hair thinning after a year or so on the methotrexate.  At first, I didn't even realize it and my rheum dr had not even bothered to mention that might happen. Totally annoying!  I think I've had a certain amount of regrowth since then but it's not complete.  My hair is fine to medium but I used to have a lot more.  It's reasonably OK but not quite what it used to be.  

I did take milk thistle while taking methotrexate which seemed to hold some of the liver damage at bay.  I wonder if it would help the current condition of your liver?

I'm glad your doctor is seeing the light and prescribing LDN.  

I'm mostly pain-free most days (unless I bump something oddly and then it may hurt worse than a "normal" bump-you probably know what I mean) and reported no pain at my last rheum visit.  You know, that silly chart they have for which they ask you to say what is your pain level from 1-10.

[LTT1]

@GingerPeach 

My hair!

About three years ago it looked horrible! (It looked moth-eaten!)

So I asked my hairdresser if she was using a different product for coloring it. She said she wasn't and I was just sure she was. 👀

So, my hair still has odd days. Occasionally, it seems thin and lifeless. Then, all of a sudden it cooperates and looks fine.

The last time I saw my derm he was looking at my hair and some of it came off into his hand! I was very embarrassed! He said much of my hair was TE hair...it hasn't fully developed. It falls out before it's time. That appt was before LDN.

Also about 3 years ago, I'd lie in bed and be itching so uncomfortably each night at 3 am. That is mostly over...thank goodness.

When you bump something are you saying it hurts more than it should? Yes, I have had that.

Doctors are really stumped about symptoms such as these. It's interesting that I get the answer "hmmm" very often!

[GingerPeach]

The more you go to doctors, the more you realize they often don't know as much as you do!  

@LTT1 

Did you say you'd already started LDN?  I think I must have missed that in reading here.  Anyway, I hope it all continues to improve and improve for you (and all the rest of us who have any of these conditions)!

BTW, thanks for mentioning the LDN Research Trust.  Interesting reading there. (I'm not on Facebook but am looking at their regular wwebsite.)

[LTT1]

@GingerPeach
Yes, I started taking LDN in June!