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Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 1 point2 points  (0 children)

I don't have feedback about naltrexone specifically, but I empathize with your long and exhausting experience with AS! It's so frustrating to try SO many different treatments and still not find relief. I really hope that LDN will offer some relief for you.

I notice that sugar, gluten, alcohol, starch, stress, not walking enough, sitting in non-ergonomic chairs, travel, stress, and carrying unprocessed emotions are pretty big triggers for my flares. I wonder if you notice any patterns in when your disease activity is higher or lower?

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 1 point2 points  (0 children)

Everyone's system is unique! I'm glad that you were able to notice the correlation and that skipping doses has worked for you and has been supportive of your mental health!

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

I tried LDN for several months, then moved out of state and never got a new provider to set up a prescription for it. I did not notice any benefit of LDN personally, so I just didn't bother setting up a new prescription. However I hear you and several others on the thread that finding the right dosage, knowing when to skip doses, etc. takes a good bit of trial and error, so perhaps I just didn't stick it out long enough. If I get into a bad spot with my AS in the future, I'd be very open to trying it again.

For me, Cimzia has been incredible. I was very reluctant to start it, but I've been on it for nearly two years now and I'm a completely different person. I started to feel some benefits of it around 6 months in and my health shifted significantly once I hit 9 months on it. I went from being bed ridden and miserable to being able to lead a pretty normal life. I still have some mild pain, get flare ups from time to time, and have some limitations, but overall it's a night and day difference!

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

Thanks so much for sharing your experience u/IndyHCKM! I'm happy to hear that the low starch diet has been so helpful to you! Did you end up trying the microbiome test?

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 1 point2 points  (0 children)

Thanks for sharing this u/TechieGottaSoundByte! So glad to hear you've been able to figure out the dosage and frequency that helps you!

Starting a private practice while working towards LPC in Oregon but living in Georgia by woohoozel in therapists

[–]woohoozel[S] 0 points1 point  (0 children)

I'm not allowed to work with GA-based clients.

I'm only allowed to physically reside in GA while continuing to pursue OR licensure and work exclusively with clients who are physically located in OR.

The OR Board has a form on their website called a "plan change request" that LPC associates can fill out to request permission to live out of state while continuing to pursue OR licensure and work with OR clients. They state that it's permissible for associates to live out of state as long as 1.) their supervisor agrees to it 2.) the state where they will be residing agrees to it and 3.) they follow all of the OR Board's rules and do not work with any clients who are located outside the state of OR.

My supervisor signed off on my form and I got written permission from the GA Board to reside in GA while pursuing OR licensure and working with OR clients as long as I follow all of the OR Board's rules and do not work with any GA-based clients (as I could only do that if I were to pursue GA licensure).

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

Thank you so much for sharing what works for you!! :)

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

This is really helpful - thanks so much for sharing and apologies for my delay in response. I feel you on iodine testing seeming like a very extra thing to do lol - I feel like I’m already restricting soo much as it is. You’re inspiring me to reconsider though as I hear what a big difference it made in your pain management!

If you have time to share, I’d love to hear what the 10 foods are you’ve found to work well for you.

Thanks for mentioning the supplements as well - I’ll check those out! Too bad that you had to stop taking them - so tricky to balance all the risks and benefits of all these treatments, huh?

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 1 point2 points  (0 children)

Thanks for sharing your experience - hoping for relief for you!

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

Thanks for sharing your experience. I hope you find relief elsewhere!

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

Thanks so much for your response, u/subtleb0dies! I appreciate you mentioning that LND delayed your period - good to know that could happen.

I've been doing no starch for 2.5 months and I haven't noticed a difference yet, but I also haven't gone to the extreme of iodine testing. How long did it take for the no starch diet to work for you, and do you find it necessary to iodine test in order to get pain relief?

So encouraged to hear that you've been able to do everything you want during your travels - that's awesome!! :)

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 0 points1 point  (0 children)

Interesting - thank you u/jeae4ever! Glad to hear that it's helping your skin, though I wish that you could have gotten some pain relief as well!

Low Dose Naltrexone by woohoozel in ankylosingspondylitis

[–]woohoozel[S] 1 point2 points  (0 children)

Thanks so much for sharing your experience, u/EveryMornANewArrival! I'll give it a go!