Hello,
Danny was prescribed LDN by an alternative dr for AS and MS. The doctor started him on 3.5 mgs. I asked this dr if Danny might do better starting slowly at 1.5 and working his way up to 3.5 but he said it would not be a problem.
Within a month, his neck became extremely painful and STIFF. Danny was convinced that it was Meningitis, and we rushed to the regular MD. The dr said it wasn't Meningitis and if the STIFFNESS got worse, because it was Friday at 5 o'clock, go to the ER.
I remembered in all my reading about LDN that it was possible to experience STIFFNESS.
I told him to stop the LDN and see how he felt. Within two days, all STIFFNESS was gone.
Danny waited one month and tried it again. Within 2 days, STIFFNEFF in his neck was back. So he stopped the LDN again.
He waited one more month and then he asked the alternative doctor to lower the dose to 1.5 mgs. The dr only lowered it to 2.5 mgs. After 2 days, STIFFNESS in his neck again. The alternative dr said there was no connection between LDN and his STIFFNESS!!!!?????
I called the compounding pharmacy and found out the AVICIL was the filler. It is derived from wood. The pharmacist said it was safe and shouldn't be a problem with starch. I don't know!!!!!
Any thoughts or suggestions?
Laurie

It's possible there is something in the filler that is causing a bad reaction, but since "muscle stiffness" was listed as a potential side effect it's probably the LDN.

There is one other treatment I've heard helps some MS patients a lot, which is a special multi-phase antibiotic treatment. It probably doesn't help everyone, because there are likely different root causes, but it seems that some people get "autoimmune" diseases like MS when tricky bacteria are hidden out in their cells (so-called cryptic infections). Here is a web site that focuses on a common type of bacteria that has this capability to hide out inside the body and cause autoimmune symptoms:

http://cpnhelp.org/

Thanks so much. This website is full of alot of good information. Now he has to find a doctor that's willing to work with this antibiotic protocol.
So do you think it's the LDN and not the filler? It seems like no one else that I have spoken to has had this stiffness side effect. What a bummer!

Laurie

I have never known of anyone else getting a significant side effect from LDN, but I've seen someone in my family react strongly to other unlikely meds (such as post-surgery eye drops) despite assurances from the prescribing doctor. LDN with a different starch-free filler might be worth a try, but he should stop right away if the stiffness starts to come back, even a little.

Maybe lactose filler?

Yes if u read the ms sites many say they experienced stiffness and a setback before they got better. Have not heard that with AS. But yes with ms.


There is a Ldn yahoo group I used to follow on Ldn as ms. Might be good to find it. I will check my old links

the only reason i've ever heard to ease into LDN is due to the "vivid dreaming" that some get. so not sure that ramping up slowly would make the difference. before giving up on LDN, maybe see if a different compounding pharmacy can make it with a different filler. and then if same side effects, then maybe it really is the LDN itself.

i've been known to get side effects to drugs (not reported as being side effects of that drug) and so very glad the doctors believe me. case in point: statins give me edema. lyrica gives me migraines. like you, did the experiment. unlike you, doctors believed me.

hoping for you that its the filler, as LDN can be quite effective for some at least. but if the LDN, then sorry to hear that.

but there are other solutions out there as well. just that LDN is such a good choice for many. but even for me, as wonderful as it is for my enthesitis, it still doesn't prevent my flares.

Laurie,
I heard the same exact thing when I read posts at roadback.org. Some of the folks there take it and they always talk about slowly going up to the desired dose and when they increase it too fast they feel awful. They have a search function and you could read old posts or ask questions. I'll ask the group for you and see if anyone had the same symptom. One of the volunteers takes it. Hope he feels better, take care.

Thanks drizzit,
I appreciate your help.
Laurie

Hi Sue,
Thanks so much for your response. I guess Danny could try LDN one more time with a different filler. He is going to see the alternative dr this Friday. Don't have much confidence in this dr but he's the only one we know who will prescribe LDN.
Do you know what filler is in your LDN?
Laurie