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Old 01-02-2019, 05:39 PM
 
Location: Middle of the ocean
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Quote:
Originally Posted by SimplySagacious View Post
My point was this: Adaptogens won't reverse your RA or psoriasis but they *might* help you manage these conditions. They do for many people. They also might enable you to reduce your medication, or even eliminate some. I have read about the many things you have tried but don't remember seeing anything about adaptogens and thought it was worth mentioning.

Stress is normal and everyone has it. Every day. It may be mild stress that goes unnoticed but when the body's ability to adapt is diminished, it's a problem. There is a link between stress or trauma with autoimmune and other chronic illnesses. We also become less adaptable as we age. I think I read recently that you also have IBS, another stress-related condition. If that was you, then your body's ability to adapt is almost certainly compromised and *may* be improved with adaptogens.





The same is true with herbal medicine. Ideally, you would see a professional to prescribe adaptogens or whatever might help if your current doctor isn't knowledgeable (most aren't) or can't guide you. Most of us don't have a clue of the chemistry and are not qualified to treat ourselves with cocktails of herbs/medicinal plants. It would be the same as going into a pharmacy with no medical background and picking out a cocktail of drugs we think we should take after googling them.
I do appreciate your input, and I have gone to two naturopaths and followed their recommendations (before it was this bad).
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Old 01-03-2019, 06:45 AM
 
Location: The Driftless Area, WI
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Quote:
Originally Posted by Mikala43 View Post

... running is not apart of my exercise routine (elliptical, stairs, treadmill at full grade/walking, bike, and swimming in summer, and we walk the dogs a mile every morning). I run with the dogs a little bit, and either try to wear shoes like Hoka or run with them in the sand.

.

Exercise is kinda like money: both too little .. or too much... can be a bad thing. That sounds like a lot of hard-on-the-bones activity for someone with RA. (Commendable, but maybe misguided, attitude.)


And, every day we get one day older.
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Old 01-03-2019, 10:22 AM
 
Location: Middle of the ocean
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Quote:
Originally Posted by guidoLaMoto View Post
Exercise is kinda like money: both too little .. or too much... can be a bad thing. That sounds like a lot of hard-on-the-bones activity for someone with RA. (Commendable, but maybe misguided, attitude.)


And, every day we get one day older.
Absolutely true that it can be too much, and I started at that, and yeah, my body hurt a lot.

Everything I do now is low impact. For example, I only do the treadmill at 2 or 2.5 miles an hour, which is slow (little impact), but I put it at a 15% incline to increase the cardio. The stairs... turns out to be like 30 something flights of stairs in 10 mins. so not too speedy.

My goal is to keep my BPM around 145 to 160, and if I can't with the low impact, I add sled pushes in between. Also situps and pushups.

But that's just cardio day, I do weights every other exercise day.
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Old 01-15-2019, 08:50 PM
 
Location: Middle of the ocean
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Met with the doc today and went with his recommendation of Taltz. It suppresses a different part of the immune system.

Wish me luck.
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Old 02-08-2019, 12:49 PM
 
Location: Middle of the ocean
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Well, my insurance denied the Taltz. My doctor certainly went to battle for me, but insurance requires you try something else before moving on to Taltz. I DO understand this, but everything is pretty much a step backwards.

On the positive side, Taltz has a program where they give it to you free. They can cancel that at any time, but will deal with that when it occurs.

Switching sucks though. I was already getting symptomatic, but one day pass my regular dose of Enbrel and my symptoms are getting much worse (you have to go a week to clear out your system). I couldn't sleep last night because I couldn't get comfortable.

My hands and feet are swelling, they burn (I forgot about this ), random pains shooting up my extremities.... my back is killing me. And fun! It will get worse, before it gets better.

Don't get me wrong, I am eternally grateful there IS medicine that makes this go away, but right now I am almost crying, which is not like me, and is probably just from lack of sleep.
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Old 02-11-2019, 07:43 PM
 
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Like you, I've got RA, and am on Enbrel. Our stories are similar in that I've been hoping for a change, as well. When I first took it, the Enbrel was like magic. About two years later, it's still helpful, but not as effective. I especially notice that my fatigue level is up. My doctor's been reluctant to prescribe something different, because of the difficult wait to see if the new med would work. He doesn't think it's worth the risk at this point.

I came out of lurking (first post) to wish you success and to say I'm sorry you're in pain. Maybe the doctor can prescribe something short term to help with it. Having this disease definitely stinks sometimes!
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Old 02-11-2019, 08:29 PM
 
Location: Middle of the ocean
29,518 posts, read 18,708,680 times
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Quote:
Originally Posted by Summrdayz View Post
Like you, I've got RA, and am on Enbrel. Our stories are similar in that I've been hoping for a change, as well. When I first took it, the Enbrel was like magic. About two years later, it's still helpful, but not as effective. I especially notice that my fatigue level is up. My doctor's been reluctant to prescribe something different, because of the difficult wait to see if the new med would work. He doesn't think it's worth the risk at this point.

I came out of lurking (first post) to wish you success and to say I'm sorry you're in pain. Maybe the doctor can prescribe something short term to help with it. Having this disease definitely stinks sometimes!
Welcome, and I'm sorry we are in the same boat.

I lasted about 5 years on Enbrel, with the last year / year and half of increasing placques. While that was frustrating (I use Enstilar as a topical, and had to start adding Clobetasol which helped quite a bit), I put off switching meds because the arthritis was under control, and I really didn't want to let vanity lead a choice that was minimizing joint damage. I was able to only the single weekly dose of Enbrel for the first couple years (after the twice weekly got everything under control), and then had to continue again with the twice weekly shots.

Then in the last six months the arthritis worsened, and I had to start adding a meloxicam.

Today was my first (double dose) of the Taltz, after that it is to the normal dosage of monthly.

(I'm adding this in case any of it may help you or others)

I'm optimistic (because not to be serves no purpose), and I am very grateful that they have treatments like biologics. Can you image 20 years ago how we would be?

Best wishes to you. (((hugs)))
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Old 02-12-2019, 03:38 AM
 
Location: The Driftless Area, WI
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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.'"
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Old 02-12-2019, 10:55 AM
 
Location: Middle of the ocean
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That article may not apply, though it was interesting and thank you for posting it.

Enbrel inhibits TNF and Taltz inhibits IL (17?)..... no remission (opposite right now), and I'm not sure how inhibiting on over the other affects the situation the article brings up. It's insanely complicated.

If the free program ends, I'll have to go back to Enbrel, so I may be able to report back on that, though, especially with RA, one example really will not apply generally. Plus, mine is pretty damn severe.
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Old 02-12-2019, 11:04 AM
 
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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.
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