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Old 12-27-2018, 02:52 PM
 
Location: Middle of the ocean
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I have been on Enbrel for about 5 years for psoriatic arthritis and psoriasis, never been able to reduce from the maximum dosage - tried it and all my symptoms were breaking through.

The Enbrel has worked well at stopping the RA, but about 2 years ago the psoriasis started breaking through, as it was really working for the RA, I stayed on it, as reducing damage to my joints was the most important thing.

Now my RA is breaking through more and more, so it is probably time to switch meds.

I know a lot of people have problems doing this, one of my docs was telling me about one patient who ended up bed ridden and gave up and went back to Enbrel. My RA is extremely aggressive, and I could hardly walk before taking it.

This is a good time for me, I'm retired, DH is retired, I'm in good physical shape, no trips coming up.... if down time occurs it won't interfere with much. DH can be quite the nurturer, so I know he will take good care of me.

I am curious to hear of any first (or second) hand accounts of people who have gone through switching from one biologic to another.

TIA
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Old 01-01-2019, 12:08 PM
 
Location: Middle of the ocean
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No one?

I tried researching the options, and honestly, understanding Interluken 17 or 23, or 6 inhibitors are above my pay grade.

My doc emailed me back and said the choice will depend in part on which of my symptoms are flaring, and it's both, psoriasis and the RA.

I will feel better choosing an option that has been on the market awhile as opposed to those that are new.
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Old 01-02-2019, 10:42 AM
 
Location: Early America
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A change in medication may be prudent but I would consider changing protocol also to potentially improve or better manage the condition. The combination of things you are doing aren't working as well for you as it might. If your doctor knows about adaptogens, he or she may be willing to try (if you haven't); or you might try yourself with your doctor's approval. Adaptogens increase the body's ability to adapt to stress, resist the damaging effects of stress, and promote normal physiological functioning (homeostasis).

A few of the adaptogens used for RA are amla, ashwagandha, guduchi, holy basil, cordyceps, licorice and reishi. Amla helps prevent damage associated with connective tissue disorders such as RA. Ashwagandha is used for treating autoimmune diseases such as RA, and guduchi modulates excessive immune system response. This is just one component of what should be a comprehensive strategy for improving or managing RA or any other chronic illness. I know you have worked with diet a lot but it may need additional revisions too.

If you are still running a lot, you might try walking or swimming instead. They are easier on the joints which is important with RA. And, running triggers a stress response which may be good for a healthy person but usually not so good for someone with an autoimmune disease, at least not until everything greatly improves.

Effects of Adaptogens on the Central Nervous System and the Molecular Mechanisms Associated with Their Stress-Protective Activity https://www.ncbi.nlm.nih.gov/pmc/art.../#!po=0.657895

How Stress Affects RA https://www.webmd.com/rheumatoid-art...tress-response
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Old 01-02-2019, 10:56 AM
 
Location: Middle of the ocean
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Before biologics and methtrexate, I tried a kazillion different natural remedies... for years. I have done keto, gluten free, fasting, vegetarian diets. I did gluten free 2 years.

I have very little stress, and 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.

My diet from Thanksgiving until now has been horrible. Almost all home made food, but eating things I normally wouldn't, potatoes, stuffing, I made 14 batches of cookies and you know..... quality control.

But the worsening of my symptoms started before then, though I don't think the diet helped at all.

The psoriasis had been worsening for about a year, but the RA was pretty solid, so vanity didn't seem like a good reason to change. Now the RA is joining the party.

Keep in mind the level of the symptoms before treatment.... I literally, could barely walk.
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Old 01-02-2019, 11:30 AM
 
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Quote:
Originally Posted by Mikala43 View Post
Before biologics and methtrexate, I tried a kazillion different natural remedies... for years. I have done keto, gluten free, fasting, vegetarian diets. I did gluten free 2 years.

I have very little stress, and 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.

My diet from Thanksgiving until now has been horrible. Almost all home made food, but eating things I normally wouldn't, potatoes, stuffing, I made 14 batches of cookies and you know..... quality control.

But the worsening of my symptoms started before then, though I don't think the diet helped at all.

The psoriasis had been worsening for about a year, but the RA was pretty solid, so vanity didn't seem like a good reason to change. Now the RA is joining the party.

Keep in mind the level of the symptoms before treatment.... I literally, could barely walk.


There are no head-to-head comparisons of biologics on PA as far as I know. While reducing stress is all well and good, you will not retrain your immune system that way. Your immune system has at some point fundamentally recognized part of you (self) as actually "non-self" and using herbs and such will do not much. Immune system memory is very good - better than our mental memory for sure! Autoreactive T-cells don't give a hoot. As you know yourself I guess, biologics (which actually block one or more of the inappropriately-activated downstream pathways) have been a godsend, especially for plaque psoriasis sufferers. Its a matter of experimentation for you. Why not try humira? It has a relatively good safety profile and seems to work for many. Sounds like you are at a good point to try a change. Good luck.
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Old 01-02-2019, 11:37 AM
 
Location: Middle of the ocean
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Humira is definitely a consideration.

My doctor usually considers my input when it comes to meds.... but in this case I will the choice up to him. The details of how these meds work is way too confusing to me.
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Old 01-02-2019, 11:53 AM
 
Location: Southern California
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Mikala I deal with OA and have not had a cookie in probably a year, will NOT do that to my body anymore....and if I were dealing with RA I'd be just as vigilant. 14 batches of cookies is a picture of disaster as I see it. You have always come across as such a great clean foodie.

I have stopped all the junk carbs I put in my body in the last year as a so called reward for being home from the hospital.rehabs....some reward...26 lbs back on.

Last edited by jaminhealth; 01-02-2019 at 12:13 PM..
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Old 01-02-2019, 11:59 AM
 
Location: Middle of the ocean
29,477 posts, read 18,673,617 times
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Quote:
Originally Posted by jaminhealth View Post
Mikala I deal with OA and have not had a cookie in probably a year, will NOT do that to my body anymore....and if I were dealing with RA I'd be just a vigilant. 14 batches of cookies is a picture of disaster as I see it. You have always come across as such a great clean foodie.

I have stopped all the junk carbs I put in my body in the last year as a so called reward for being home from the hospital.rehabs....some reward...26 lbs back on.
Ah.... the 14 batches of cookies were given as gifts. I only had a few, which is way above my normal of none.

I've put on 5 lbs since Thanksgiving, but it will be gone in a couple months.
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Old 01-02-2019, 02:22 PM
 
Location: Early America
1,563 posts, read 750,049 times
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Quote:
Originally Posted by Mikala43 View Post
Before biologics and methtrexate, I tried a kazillion different natural remedies... for years. I have done keto, gluten free, fasting, vegetarian diets. I did gluten free 2 years.

I have very little stress, and 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.

My diet from Thanksgiving until now has been horrible. Almost all home made food, but eating things I normally wouldn't, potatoes, stuffing, I made 14 batches of cookies and you know..... quality control.

But the worsening of my symptoms started before then, though I don't think the diet helped at all.

The psoriasis had been worsening for about a year, but the RA was pretty solid, so vanity didn't seem like a good reason to change. Now the RA is joining the party.

Keep in mind the level of the symptoms before treatment.... I literally, could barely walk.
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.



Quote:
Originally Posted by Mikala43 View Post

The details of how these meds work is way too confusing to me.
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.
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Old 01-02-2019, 03:46 PM
 
1,058 posts, read 262,749 times
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Quote:
Originally Posted by Mikala43 View Post
Humira is definitely a consideration.

My doctor usually considers my input when it comes to meds.... but in this case I will the choice up to him. The details of how these meds work is way too confusing to me.


You don't really need to know how they work, unless it interests you, but in general biologics are antibodies (or antibody portions attached to some other useful molecule) which bind to a natural "problem molecule" in your body which the immune system is using to send messages that lead to inflammation. The binding of the antibody to the "problem molecule" stops the natural cascade that leads to inflammation.

If you want to use a different type of biologic from Enbrel because you feel it is not working well, then ask your doc to tell you about biologics for PA which are not anti-TNF biologics. One example would be Taltz (which doesn't work on TNF).
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