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Oct 21 2014 07:40am
Quote (Kinase @ Oct 20 2014 12:32am)
What specific questions do you have?


I'm just trying to learn about them as much as possible. I have of course read the websites and FAQ on them, but I was just looking for peoples experiences and how they felt on them and stuff like that. I mean if any of you know how they work biochemically with the body, that would be pretty sweet to know as well.

Like with the prednisone, I don't lift as it started giving me problems. Not sure if the Humira/Remicade would give the same results with lifting or if it would be okay to do while taking them. I imagine the medicine somehow stays in your body for the amount of time till your next shot/infusion.

Really I am just looking for anything and everything I can get on it. Thoughts/personal experiences or family members personal experiences. For example, what nitro said about feeling the negative change in mood and energy, I had no idea that happened.
Quote (Balla @ Oct 20 2014 12:51am)
Would say solely predicated upon mechanisms of action and long term ramifications of that modulation, humira/remicade would be safer than prednisone

also, cannabis is great for helping ameliorate Crohn's Disease symptoms. Maybe not completely on its own (though I've heard mentions of it), but in conjunction with other treatment.. primarily because it'd be a hindrance to be high every moment.


Mind going in to more detail?

And if there were ways to get edible forms I would possibly consider it, but I will never smoke it.
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Oct 21 2014 04:56pm
Quote (Braxton11 @ Oct 21 2014 09:40am)
I'm just trying to learn about them as much as possible. I have of course read the websites and FAQ on them, but I was just looking for peoples experiences and how they felt on them and stuff like that. I mean if any of you know how they work biochemically with the body, that would be pretty sweet to know as well.

Like with the prednisone, I don't lift as it started giving me problems. Not sure if the Humira/Remicade would give the same results with lifting or if it would be okay to do while taking them. I imagine the medicine somehow stays in your body for the amount of time till your next shot/infusion.

Really I am just looking for anything and everything I can get on it. Thoughts/personal experiences or family members personal experiences. For example, what nitro said about feeling the negative change in mood and energy, I had no idea that happened.

Mind going in to more detail?

And if there were ways to get edible forms I would possibly consider it, but I will never smoke it.


Eh, well, I'm not super familiar with any of these (though I guess I could research them and find out a lot), but it seems to me that either one is obviously going to be extremely immunosuppressive, however the prednisone will be MORE immunosuppressive and will also contribute to long term deleterious problems.. The effect of chronic cortisol is well known, and that's much worse than simply blocking a single cytokine, TNF-alpha. Though lack of TNF will make you more susceptible to some diseases, TNF is also the main culprit above all that contributes to pathologic problems associated with infections.
Again, take this perhaps with a grain of salt as I'm strictly looking at the mechanisms of action.. there may be more to it, but this is my purely molecular based surmise about MOAs.
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Oct 21 2014 05:10pm
Quote (Braxton11 @ Oct 21 2014 05:40am)
I'm just trying to learn about them as much as possible. I have of course read the websites and FAQ on them, but I was just looking for peoples experiences and how they felt on them and stuff like that. I mean if any of you know how they work biochemically with the body, that would be pretty sweet to know as well.

Like with the prednisone, I don't lift as it started giving me problems. Not sure if the Humira/Remicade would give the same results with lifting or if it would be okay to do while taking them. I imagine the medicine somehow stays in your body for the amount of time till your next shot/infusion.

Really I am just looking for anything and everything I can get on it. Thoughts/personal experiences or family members personal experiences. For example, what nitro said about feeling the negative change in mood and energy, I had no idea that happened.

Mind going in to more detail?

And if there were ways to get edible forms I would possibly consider it, but I will never smoke it.


I am currently on remicade for my Pancolitis (severe UC), just started I have had two infusions, first infusion I had strange side effects of very dry and painful scalp and also a swollen throat. Now I am fine though.

I can help you in terms of the medical cannabis. I am going to be starting to use this medically (my state is one of the few who have legal MMJ) on a daily basis. I have read that daily use is best to maintain higher levels of cannabanoids in the stomach and immune system. If you can get it medically, you can either 1) buy edibles from a dispensary pre-made or, buy canna-oil or canna-butter (a cooking oil or butter made with cannabis, containing the same molecules) and bake your own edibles. If you have any other questions about medical cannabis please pm me, I would be more than willing to discuss it.
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Oct 21 2014 05:45pm
Quote (Balla @ Oct 21 2014 06:56pm)
Eh, well, I'm not super familiar with any of these (though I guess I could research them and find out a lot), but it seems to me that either one is obviously going to be extremely immunosuppressive, however the prednisone will be MORE immunosuppressive and will also contribute to long term deleterious problems.. The effect of chronic cortisol is well known, and that's much worse than simply blocking a single cytokine, TNF-alpha. Though lack of TNF will make you more susceptible to some diseases, TNF is also the main culprit above all that contributes to pathologic problems associated with infections.
Again, take this perhaps with a grain of salt as I'm strictly looking at the mechanisms of action.. there may be more to it, but this is my purely molecular based surmise about MOAs.


Yeah, one of the reasons why I am asking about the medicines. The doctor told me that I could potentially get Hepatosplenic T-cell lymphoma, by taking remicade or humira, which makes me super nervous to start them.
Quote (youngemerican009 @ Oct 21 2014 07:10pm)
I am currently on remicade for my Pancolitis (severe UC), just started I have had two infusions, first infusion I had strange side effects of very dry and painful scalp and also a swollen throat. Now I am fine though.

I can help you in terms of the medical cannabis. I am going to be starting to use this medically (my state is one of the few who have legal MMJ) on a daily basis. I have read that daily use is best to maintain higher levels of cannabanoids in the stomach and immune system. If you can get it medically, you can either 1) buy edibles from a dispensary pre-made or, buy canna-oil or canna-butter (a cooking oil or butter made with cannabis, containing the same molecules) and bake your own edibles. If you have any other questions about medical cannabis please pm me, I would be more than willing to discuss it.


Well I live in New York, so... :lol:
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Oct 21 2014 07:12pm
Quote (Braxton11 @ Oct 21 2014 11:45pm)
Yeah, one of the reasons why I am asking about the medicines. The doctor told me that I could potentially get Hepatosplenic T-cell lymphoma, by taking remicade or humira, which makes me super nervous to start them.



Most of the patients had prior infliximab therapy as well as concomitant azathioprine or 6-mercaptopurine use for Crohn's disease.
Black boxes are still gonna black box though, because the causation is not clear - you'll have to take your chances. Not much anybody here can say to change it based on the current information.

There are increased risks of millions of types of other infections and cancers with this drug too. TNF(Alpha) is a major cell signalling component for the immune system. These drugs ultimately decrease immune function.
I'm sure you already have a good follow-up schedule with a doctor or pharmacist for monitoring though (hopefully!).

Plenty of minor discomforts occur through their use as well - though they are likely minor by comparison to your disease.
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Oct 21 2014 07:35pm
Currently taking Humira.
Love it.
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Oct 22 2014 05:44pm
Quote (S3th @ Oct 22 2014 01:35am)
Currently taking Humira.
Love it.


inafter - tripling your risk of lymphoma (and increasing the risk of dozens of other cancers), but man is it a hell of an amazing drug!
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Oct 22 2014 05:53pm
Quote (Lolzor @ Oct 22 2014 07:44pm)
inafter  - tripling your risk of lymphoma (and increasing the risk of dozens of other cancers), but man is it a hell of an amazing drug!


Why do you do this to me.
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Oct 22 2014 07:08pm
Quote (Braxton11 @ Oct 22 2014 11:53pm)
Why do you do this to me.


Well, the risk is still pretty small. Probably less than 1%.
It is still a legit drug man... I would use it. All these drugs are going to affect your immune system - that is why they work for your condition.
Use of prednisone is an immunosuppressant lol (albeit the strength of which depends on dosage).
Use of Purinethol is immunosuppressant too... it can be used to decrease cellular hypersensitivities and for impaired allograft rejection because it is powerful and suppresses bone marrow.

Newer biologics are the way to go; if your doctors suggested it, it was likely for a good reason!

This post was edited by Lolzor on Oct 22 2014 07:08pm
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Oct 22 2014 08:27pm
Quote (Lolzor @ Oct 22 2014 09:08pm)
Well, the risk is still pretty small. Probably less than 1%.
It is still a legit drug man... I would use it. All these drugs are going to affect your immune system - that is why they work for your condition.
Use of prednisone is an immunosuppressant lol (albeit the strength of which depends on dosage).
Use of Purinethol is immunosuppressant too... it can be used to decrease cellular hypersensitivities and for impaired allograft rejection because it is powerful and suppresses bone marrow.

Newer biologics are the way to go; if your doctors suggested it, it was likely for a good reason!


Exactly
and the point is: chronic prednisone / effects of cortisol is very deleterious to all processes + immunosuppression in ALL aspects, even down to telomerase inhibition for instance. TNF alpha inhibition is surely bad for your immune system somewhat but not as bad as total inhibition, plus, as I said, TNF is the cardinal contributor to tissue damage due to infection
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