Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Best NSAID?

Hi Sue,

I asked about MTX, since I have been given MTX with Humira. Ever since on biologics, I am on MTX. Doctor stated that it is required to reduce formation of antibodies. After changing to Humira dosage is further increased to 20 mg (inj). Even then it is not effective at all to reduce the pain.

Jay

A little reading about the different groups of NSAIDs will show that they have different mechanisms to reduce inflammation. So I am wondering if that means not all of them need a "stomach protector." And as I understand, a stomach protector really is just an acid reducer which is not good for digestion and a healthy gut microflora -- the change in pH will change the gut function. Just food for thought.

I could see that MTX could help prevent formation of antibodies, but I was never put on MTX...I think a lot of people aren't put on MTX...don't know which set of doctors is right...those who use it / those who don't with their biologics patients.

I will say these three things:

I was started on 40 mg Humira every 14 days, but I need it more often....I can usually go 10-12 days in between, sometimes I take it after 7 days...always it seems to be most effective within that 7 day window..but we push it to 10 or more when we can to prevent lowering the immune system too much...LDN and vitamin C (ester C, 500 mg or 1000 mg daily) and other supplements like vitamin D probably also help. Also, I've read that the more often you take the biologics, the chances of forming antibodies against it decreases. I've been on it now for 4 years and it seems to work just as well if not better than it ever did.

The other thing I'll say is that I got lucky picking the right biologic the first time, but that's not true for everyone. My aunt started on Remicade (that's all her insurance would allow), but after 3 years, nothing. So she switched to another (don't remember which one, but it was one specifically indicated for psoriatic arthritis) and like me, it was immediately miraculous in the way that it worked for her. So sometimes people need to try a few different biologics before they find the right one.

When I started the Humira, my rheumy warned me that it would probably help a lot with body parts that were "just inflamed" but not "damaged" like my feet, but would help less with those joints that had damage in them (like the bone spurs in my neck pressing on nerves), like the SI joint with the "arthritic changes"). And I will say, he was right. Things like my feet and such are so so so much better. And my neck and SI are better. But: for my neck, I still can't sit in chairs, cars, etc that would set off my neck, and I still can't lay in a bed to sleep (thank goodness for my recliner). for my SI joint, I don't have the horrific inflammatory flares anymore (the ones that cause the back muscles to all go into horrible spasm, make my SI joint so sore I can't walk, etc), but I can tell its damaged because I can't stand in one place for too long without it getting really achy. And I can't bend over for more than a few seconds without again feeling it, so when I garden, for example, I have to sit on a stool or kneel and make sure I don't bend over.

But yes, the LDN helped with the enthesitis before I ever started Humira.

Hi, Could you kindly give me the doctor name who give you LDN in NY? My 12 year old has AS, hope she can try LDN before methotrexate? Thanks..
Barbara

PM me where you live and if its the same city area, I can share my doctor's name.