Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group Anyone trying/tried LDN for RA?

Has anyone with RA tried LDN and at what dosage ? When did you feel improvements? What kind of improvements were they? What did you take for serious pain if you had any? It sounds like an interesting med since it helps boost the immune system and reduces the amount of flares. Thank you !

LDN Newsletter for November:-

http://www.ldnresearchtrustfiles.co.uk/docs/November2010.pdf

See also: www.LDNaware.org

"LDNaware.org has everything you
need to know about LDN all in one place – informative
websites, patient forums, latest research, video
presentations, case histories, conferences to attend,
where to get LDN and more."

Also:-
http://forum.ldnresearchtrust.org/index.php?/topic/1835-november-2010-newsletter/

In addition - LDN Forums:- http://forum.ldnresearchtrust.org/index.php?/index

Valsmum - here's a LDN RA story (from the LDN forum groups):-
http://forum.ldnresearchtrust.org/index....ch__1#entry4936

Very interesting. Lass is doing very well on the LDN, even managed to come off pred etc and eschewed Enbril! Her new rheumy is astonished at her excellent response to LDN.

Thank you Molly. I like to hear when someone comes off prednisone, that's exciting in itself. I read a little about it before, but lately I read it gives the immune system a boost.

You mean LDN gives the immune system a boost. Yes, am sure it does. Know that I very very rarely ever come down with any kind of a cold etc. Have had flue once, summat or the other once (and both these very very many years ago 50yrs/20yrs respectively!) And colds last no more than two/three days at most, that is 'when' I catch one. Had one 'whatever it was' last C'mas time. Horrible, but had run out of my LDN, so, was rather open to picking up an infection!

LDN is great.

when i was describing to my compounding pharmaicst (who makes my LDN) how LDN helps me (heals up inflammation much faster than without it, heals up tendon / ligament tears / pulls much faster than without it), he said that's the way many of his RA customers describe it as well. i could tell you a number of stories at this point that would illustrate how much faster; i have 11 years prior to LDN to compare to, and have been on LDN a bit over a year now.

hmmm? getting sick? i typically get a head cold once or twice a year, haven't had one yet on the LDN, but we'll see if i get one this winter before we judge. i never really got sick (infection wise) much before LDN, so it will take some time to decide if the LDN is affecting that area or not.

Well... I'm RF+ and my hand, knee, and foot pain are gone... But I haven't been officially diagnosed with RA. My mobility has improved so much, that's been just awesome.

Erika, when you had JRA where did it affect you? I had hip pain as a kid and awful leg pain/cramps at night that would wake me upi and only a hot bath or tylenol would help. Believe me I was not trying to get out of sleep, I could babrely walk to my mom's room at night I was in such pain. Now, In my 30's I was diagnosed with RA. My knees hurt the most.

Thanks for the LDN info, it's something I'm very interested in. I never had any prescription my whole life unless I had an ear infection, so I find it hard to take anything. I also know every medication has a side effect of some sort. So I try not to take too many. I really want to get off of prednisone ASAP.

I heard if your on a dose of 15mg your body stops making cortisol. What if your on a dose of 5-10mg for 8 months , does your body turn off the cortisol at low doses or not? I am never sure when I look up prednisone facts.

Hi ValsMum

I am also RF- but had sky-rocketing CRP and sed rate when I was diagnosed with RA.

I really don't remember anything but crying and sleeping for a year or two. My older sisters say my knees and ankles swelled huge, and the MD gave me massive doses of steroids and indomethicin. When all this pain started two years ago next week, I actually didn't connect it with the arthritis when I was a kid, but finally my sisters made me tell my doc and then the testing began! Evidently I'd just been in remission for 38+ years, which is a huge quality problem.


I feel you. I'm 50, and until my late thirties I didn't take anything except ibuprophen, which is an NSAID, all of which I've become fatally allergic to... bummer. Now I take cymbalta for back pain, LDN for feet & hand pain and mobility, and muscle relaxers for spasms. Oh well, I really don't care anymore about taking pills, as long as the excruciating pain monster is kept at bay!


I don't know about the LDN. It took me 2 months to work up to 4.5mg, and that's where I stopped. I don't plan to go any higher, because as far as I know the research says that's just about perfect. I think Molly takes 6mg, but I'm not certain.

My ESR and CRP is almost always flat, but I'm ANA+, RF+, and HLAB27+, and hardly any joint damage. But my sisters are ANA- and RF-, and only one is HLAB27+, but she doesn't have spondylitis.

Go figure!

Isn't this whole thing weird? My sister with the worst joint damage is RF-.... Harumph

My doc says that "seronegative RA is a strange beast"!!!!

You're doc is right Wendy,a strange beast it is.
Being RF- always makes me think I have something else besides RA. I get lots of lower back pain and hardly any in my little joints anymore. I haven't been tested for HLAB27 but I would like to be tested just in case, but it sounds like those with AS don't really have all the symptoms I do, I'm just rambling.

I had a lyme test done 2 weeks ago, probably a big waste of money. I just felt like my brain isn't working like normal. I find it hard to concentrate. ???? I don't have any tests results just yet, I'm still waiting.

She's had fully blown lupus since her late twenties, too. But she's also ANA-, and she's by far the wost off of any of us. That said she's also stubborn as a mule and refuses to be stopped by anything. She drives me nuts but she's also my hero.

Funny - I'm ANA positive but don't have lupus! However, for a short period early on lupus seemed a possible diagnosis. That was before all the arthritic joint pain took off.

Here's what my "beast" does at it's worst:

vertigo
eye pain
butterfly rash
heat & sun sensitivity
all extremities joint pain
sacrum pain
sit bone pain
thoracic and rib pain
hip and neck stiffness
throbbing nerve pain in my lower back and down my legs
nausea
anxiety/depression

I used to hate taking drugs, and now I say a big THANK YOU GOD for my daily dose of cymbalta, LDN, muscle relaxer, D3, B-complex, and Omega-3.

And of course swimming, combined with the SAA stretches, is the absolute BOMB for joint pain.

fatigue

I'm starting to think the rheumys should state that all tests are "for reference purposes only"...

EricaK,
Have you ever been checked out for fibromyalgia or parasites or infections?

I'm just curious if anyone ever has been checked out for infectious causes for their RA or AS. The way I feel besides joint pain is feverish , sweaty/chills and pain all over. I had mastitis after my son was born and it feels very similar- RA.

Erika - you have a butterfly rash but no diagnosis of lupus? Even though your sister has it?

ValsMum - when my inflammation was very high (CRP = 110, ESR >100) I felt like I had a fever all the time. I was told it was the systemic inflammation.

Yesiree! I've been checked from head to toe.

Two CT scans. Several MRI's. Colonoscopy. Hysteroscopy. Many many vials of blood over a 2 year period. XRays. Ultrasounds. Accupuncture. PT. Massage. Neurologist. Ophthalmologist. Rheumatologist. Gynecologist....

What they all say is ~ and I'm paraphrasing ~ "Wow! You're in really good shape for how crappy your blood work looks and how many diseases you seem to have!"

I just think rheum. issues are by nature somewhat bizarre. I feel blessed that I'm not as sick as my sisters and that so far I don't have MS, which three other people in my family have been dealt.

But, back to the LDN for RA question: why not? It's on the list of diseases it's used for, it's cheap, and it's not dangerous. I just recommend NOT taking it during the day.

and maybe by taking the LDN, you'll avoid developing MS since that's the one disease that LDN seems most impressive for......i've watched the youtubes, read some of the clinical studies.

Ahem... I haven't exactly admitted it in exactly that way to the doctor yet. Um... sort of sidstepped the questions about lupus.... I just don't want to get poked and prodded anymore this year, and it's periodic....

I tell you people way more than I tell my family or my doctors.

I get random fevers that seem to come in periods of stress, but again... almost flat inflammation. I wonder if there's something underlying that CAUSES inflammation in ADDITION to pain? And then the chronic inflammation causes joint damage? That might be why my joints are in such good shape. Just an idea. I really am not trusting doctors as much as I used to. And I'm in a crappy mood tonight.

Maybe I should go to bed even though it's 7:40... that makes me feel so ridiculous when I do that.

The pain doesn't cause the inflammation - the inflammation causes the pain! And causes the joint damage. My joints are still in good shape but I haven't had RA for all that long - approx three years. Also I've got the inflammation under control now with methotrexate, prednisone and celebrex. So I'm hoping to avoid joint damage.

My grandmother's hands and feet were horrifically deformed - that's what I'm trying to avoid.

I still puzzle about why inflammation doesn't show up in blood tests for some people. It's very odd I think.

very recently i found a nice simple explanation for why it doesn't show up for those of us with enthesitis as our primary inflammatory site: a reference said that the entheses are primarily avascular structures.

I know people with RA who don't have high levels of systemic inflammation and RA is not a disease of the entheses.

well that certainly is more puzzling!

New rules for EricaK. No more reading KickAS in the early AM. Now I have "avascular" stuck in my head. No blood to the area. AVASCULAR AVASCULAR AVASCULAR...

what you need is a good tune stuck in your head instead......may i lend you "midnight train to georgia"! that's what's been stuck in my head all day today!

Wendy have you ever had C-reactive protein blood test? That also tests for inflammation...

Hi Linlan,

Yes, my c-reactive protein is tested monthly. At its worst last year, it reached 110 which seemed to match the severity of my symptoms and disability.

Now it's hovering around 11. My doc wants to see it get under 5, or preferably, under 3.