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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
And I admit that my hopes are probably unrealistic. I want LDN to make me energetic like I was in my 40's, render me pain-free, rid me of allergies, and also to reverse the last 12 years of anxiety/depression and as such there will be no need for any other meds ever again! Does anyone else think these are unrealistic hopes? You can be honest. I can take it!
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jul 2010
Posts: 75
Apprentice_AS_Kicker
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Apprentice_AS_Kicker
Joined: Jul 2010
Posts: 75 |
Just read my signature all the best!
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
well, we're all different, so hard to say what you will see, but i've been on it for almost a year now, and while it definitely helps and i wouldn't want to give it up, unless i was put on a biologic (or something else equally miraculous), it has not been the miracle drug i was hoping for.
it definitely helps things (tendons and ligaments) heal up so so much faster, which is such a blessing, and now with this flare, think it is helping me get through it faster.
but i still get inflammation, still get flares, and still have allergies, gastritis, etc.
so, i think it is an important tool in my toolbox, but not the final answer.
then again, a bit of this, a bit of that, it all adds up........
i'd say, just keep an open mind, see how it goes,
and most importantly, report back to us!
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
The morning after:
didn't sleep much
didn't wake up stiff.
Hmmmm???
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: May 2010
Posts: 1,279
Copper_AS_Kicker
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Copper_AS_Kicker
Joined: May 2010
Posts: 1,279 |
you at 1.5mg to start right? thats what i took for 1 week before going to 3mg. i didnt notice much til about day 5 and 6. and they have been subtle/gentle changes. i also have not experienced insomnia but rather nausea and dull headed [almost a headache] for the whole first day and a little the second day. its not like taking an asprin where you notice its working w/in a half hour. the main thing i have noticed is less pain and less inflammation. keep us posted girl.
AS & Fibro. NSD + no sugar
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
It's the afternoon, and I don't feel any nausea so far. My doctor said to take 1.5mg for two weeks, then work up to 3mg or 4.5, depending upon what I could tolerate. I'm wondering if I woke up less stiff because I wasn't sleeping, and therefore moving around all night which kept me limber? Anyway I worked 4.5 hours today at the food bank and even packed boxes for 1/2 that time. Little by little I'm inching back toward my old life. I totally have all of you to thank for that, because I've been so inspired by all your stories and encouragement! 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
Day 6. My right leg has quit hesitating and my feet don't hurt. Hmmmm... LDN? 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jul 2010
Posts: 1,191
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Jul 2010
Posts: 1,191 |
I hope the LDN is working well for you too. My ESR is 29 and CRP is over 200. Are my numbers close to yours? I want to get off my current treatment becasue it really isn't doing much, but if your numbers aren't close to mine, then I might be a little hestitant to try LDN.
I have swelling in knees, back, neck and wrist. Sometimes my heels.
Thanks:)
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year. www.fatsickandnearlydead.com excess fat/oils = pain for me recipes for raw food on Youtube "raw food romance" and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
No, my numbers are super low. But LDN seems like a very safe med to me. You? What do you think?
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
Spasms are getting less severe. Morning stiffness decreased by 75%. The biggest news is that I don't kneed my sticks to walk up to two miles and I can walk down stIrs without my husband's help. Quite a difference from 2 weeks ago! Still nowhere near my 11 mile pre-onset hiking capability... But hey, I was shopping for wheel chairs two months ago. I'll enjoy this for as long as it lasts.
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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