Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy LDN Started last night!

Why did posts stop coming in here?others stopped their experience?

UPdate for me. I started full 4.5 mg dose 3 days ago and I am feeling much better. I got ultrasound on my rear for my hip... grasping at straws... and my hip pain is nearly gone!

I'm getting more normal sleep patterns. I can no longer stay up beyond midnight anymore and I'm sleeping better and more soundly. My morning SI stiffness is getting less too.

My hubby is becoming more perky & less of a regular grump. His fatigue & malaise and joint pain is decreasing quite a bit too. He's really able to get a lot done these past few days!

I hope this is a sign of the LDN working.... summers are usually better for me anyway. My neck is still pretty flared and causes headaches, but I am pushing things with activity levels anyway.

sooo... that is my update!

I've been having issues with logging in so that's why I haven't been updating!!

Thanks Trudi, I hope these sure are signs of a long term remission and not just a summer break....

Keep us updated on your progress... I really wish to check with my doctor if can give LDN a try again along with Remicade.

I'm asking my third doctor tomorrow...

Good luck CC with doc #3. Await outcome with bated breath!

I had to stop enbrel after only 5 shots becauase I had hives, swollen eyes and heart problems. Started LDN 3 days ago. Rx'd by family doc, (My Rheumy refused.)

My LDN experience:
Day One: slighly less pain and dull headache
Day two: what?? My right arm works again. Whoa. That cannot be called placebo. Left arm still can't raise up. Still have headache.
Day three: feet almost 100% pain free. Wow. still have headache. Right arm still works!! (miracle)

-Donette

Donette! I'm so psyched for you! What dose are you starting at? I have the script for 2 mg that apparently I can double after two weeks. I can't mail the script off until Tuesday, so I imagine I'm looking at a 7 day wait... I'm a little freaked out....
Keep us up to date!
cc

Hey CC,

I am starting at 4.5 mg. Scary, I know!! Keep in mind my doc knew NOTHING about low dose naltrexone but he had many years of scripting it at 50 for addicts and so he said he was not afraid at all of prescribing it to me at less than 1/10th of that dose. On the second day I got the use of my right arm back. My worst symptoms of AS have always been that I couldn't raise up my arms. So I was blown away when my rt. arm could reach to the sky with no problem!! So far my only side effect is a dull headache, but I heard that someone else had that and it went away on day 18. I also have less pain over the rest of my body as well (est. 50% less) my feet feel almost 100% normal too and they were my 2nd worst symptom of AS. I am way excited. I do have more dreams but they aren't keeping me awake. In fact my sleep is better and I have only one episode of a muscle trying to cramp up per night verses 5 episodes per night prior to LDN. Also, I am not taking anything else, as far as drug-wise!! I wanted to test LDN hard-core. One thing I am wondering about though is that I may have some Enbrel left in my system, so maybe the headache will go away when that is completely gone.

Take Care and good luck!! (rainbows of hope!!)
Donette

hi friends,
i was busy with my exams and project stuff so couldn't update about my situation.
LDN update:
i am having no sideffects from ldn now. no headache, no fever, no extra pain anywhere. but there is no major improvement either. i am still taking 3 mg.
probably i feel there is no improvemnet because i have stopped all exercises and i am suddenly working very much (from 7 am to 9 pm). also i have started taking etoricoxib(cox 2 inhibitor) every alternate day.
so the real situation will be known after i get back to normal life after 1 june. from 1st i will also upgrade to 4.5 mg. real improvement will start after sometime on 4.5 mg.

bye