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Old 02-12-2019, 11:08 AM
 
Location: Middle of the ocean
29,825 posts, read 18,872,270 times
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Quote:
Originally Posted by Summrdayz View Post
Thanks for the welcome! I hope the Taltz starts working for you soon. I agree we're lucky to have the biologics, but it sure would be nice to see something better come down the pike. One thing that gives me hope is the studies being done on stimulating the vagus nerve. They've surgically implanted a little device, and it's really helped some people a lot. If I remember correctly, it should be available as an option in the next ten years. If you're interested in learning more about it, I can find the link to the article and post it here.
Yes! Yes PLEASE.

I actually have a damaged vagus nerve... ideopathic.
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Old 02-12-2019, 11:20 AM
 
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Quote:
Originally Posted by guidoLaMoto View Post
I don't know much about the details of TNF blockers, but your problem of decreasing efficacy reminded me a little of that kind of problem in Parkinson's Dis where the standard treatment gets less effective over time and a "drug holiday" will often kick start it to work again on a second go 'round.


I found this site: https://www.arthritis.org/living-wit...ug-holiday.php that suggests that might not be the right thing to do. It seems the drug, being a biologic itself, could set up an immune response where you make anti-bodies against it, thus destroying some of it before it gets to work, explaining why it doesn't work as well over time.


A holiday followed by re-introduction of the drug might set up a strong immune response kinda like the way a vaccine works, making the drug useless to you in the future.


Each of the drugs in the class, however, are different from the others, so a switch should work as if you're starting out fresh.


From the article: "... says Dr. Bykerk. ďAlso, if the same biologic is reintroduced, there is a chance that the patient may have developed anti-drug antibodies to the biologic, resulting in a worse response when using it the second time around.'"


I think this may have been what happened to me. I had to stop the Enbrel for about 2 1/2 months last year, due to a chronic sinus infection. When I started back up, it didn't work as well. It's still much better than going without, though. I had to stop again this winter for the same reason, and boy was I happy to get back on! Like Mikala said, you can't always go by another person's experience, unfortunately. Everyone responds differently. You just have to give things a try, then wait and see.
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Old 02-12-2019, 11:22 AM
 
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Quote:
Originally Posted by Mikala43 View Post
Yes! Yes PLEASE.

I actually have a damaged vagus nerve... ideopathic.
Oh boy! Will try to find it now.
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Old 02-12-2019, 11:24 AM
 
Location: Middle of the ocean
29,825 posts, read 18,872,270 times
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Quote:
Originally Posted by Summrdayz View Post
[/b]

I think this may have been what happened to me. I had to stop the Enbrel for about 2 1/2 months last year, due to a chronic sinus infection. When I started back up, it didn't work as well. It's still much better than going without, though. I had to stop again this winter for the same reason, and boy was I happy to get back on! Like Mikala said, you can't always go by another person's experience, unfortunately. Everyone responds differently. You just have to give things a try, then wait and see.
Just to add to our similarities... I rarely get sick (which is great), but WHEN I do.... it is sinus infections, which I never got before Enbrel.
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Old 02-12-2019, 11:33 AM
 
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Quote:
Originally Posted by Mikala43 View Post
Just to add to our similarities... I rarely get sick (which is great), but WHEN I do.... it is sinus infections, which I never got before Enbrel.
Fun stuff, isn't it?!? I've always been predisposed to them, but the Enbrel really "sealed the deal".

Here's a link to a NY Times article about it. Very long read, but very interesting. The shorter link I had about the study disappeared. I'll try to find another link to it.

https://www.nytimes.com/2014/05/25/m...cked.html?_r=1
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Old 02-12-2019, 11:38 AM
 
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Here's an article about the study. When I googled it, I saw there was another study done that just ended in December. It will be interesting to see the results of it.

https://www.sciencedaily.com/release...0704223410.htm

Edited to add this scientific article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4961187/

Last edited by Summrdayz; 02-12-2019 at 11:57 AM..
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Old 02-14-2019, 11:10 AM
 
Location: Middle of the ocean
29,825 posts, read 18,872,270 times
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So far.... Taltz is a miracle drug (so was the Enbrel).

Almost no pain, and I guess it's been awhile because my energy level is also way up. I think with constant low grade pain, that slowly gets worse, it wears you down. I don't know, I know fatigue is a side effect of RA.

In the mornings I had been "crabbing" down the stairs holding the railing, now, I just walk down (morning are always the worst).

Almost no ankle or wrist pain at the gym, and the lower back pain almost all gone, I went through my cardio routine no problem, and wanted to do more (courts were taken). Starting next week I will go back to my more intensive cardio routine.

I'm hoping next month's single dose has the same results. Crossing fingers.
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Old 02-14-2019, 12:26 PM
 
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Great news! Glad for you. Fatigue has always been my worst symptom.
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Old 02-14-2019, 12:36 PM
 
Location: Southern California
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That's great about the Taltz, hope it works long.

Last edited by jaminhealth; 02-14-2019 at 12:50 PM..
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Old 02-14-2019, 12:46 PM
 
Location: Middle of the ocean
29,825 posts, read 18,872,270 times
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Quote:
Originally Posted by jaminhealth View Post
That's great about the Taltz and out of curosity I looked it up and now if one doesn't get the possible side effects. Often the s/e are worse than the condition.
I'm am very aware of the side effects. Without the meds I would be crippled, permanently, in constant pain, and no energy.

If I die from the meds, it is still worth it. Quality of life. I have no day to day side effects at this time.
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