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Please Read: Ginger Was My Answer

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Posted 6/28/2020 4:36 PM (GMT 0)

TroubledTurds said...
"Glad Xeljanz is working for you. How long have you been on it? One concern I have with biologics is that for many they only work for a short amount of time and then you're back to square 1. I imagine at some point I will have to go on them though. Entyvio would probably be my first choice."

but there are also lots of folks who do well on them for many years - why not start now - and if going back to square one is in your future, wouldn't it be better sooner than later ?

just my loony thoughts speaking -

Personally, if I am able to feel OK without the biologics I would prefer not to take them. I may get bad enough that I require them, but for now it seems I am at my worst when diet is uncontrolled and I am in a calorie surplus. When I am dieting (i.e. a calorie deficit) and diet is more controlled my symptoms are much much better.

poopydoop said...
Hi David
Xeljanz is not a biologic so there is no risk of developing antibodies. The main risk (as far as I can see it) is if your UC progresses beyond what the drug can handle....at a safe dose....especially because there might be some risks of thrombosis on higher doses, although that has not been confirmed for UC yet but has for RA patients.
I was very opposed to immunomodulatory therapy in the beginning but after having too many accidents crapping my pants, including on the beach far from a toilet...I decided I don't want to live my life like this any more....
Sometimes I have been to cafes/restaurants where there was literally nothing on the menu i could eat...especially at lunchtime, here (Netherlands) it is based mostly around sandwiches. Or maybe there's a soup but they put gluten in it. Or a salad but I couldn't handle raw vegetables. Etc etc.. My comment was however more about when a friend cooks dinner or at catered events, when there isn't any choice.
Yes I could make myself do it and I did for years....now that I don't have to any more, it is very liberating and I enjoy it.
Oh and I tried ginger at some point...I found it aggravated my system (more cramps).

Sure, I can understand that. Like I said, I don't mean to pass judgment. I'm sure certain areas of the world aren't as easy, and you're right that sandwich shops and the like can be difficult. If I was crapping my pants in public and diet wasn't controlling that I would likely take whatever I needed to as well lol.

From what I've read Xeljanz is a biologic, just a different type than remicade and other TNF-alpha inhibitors (as it's a JAK inhibitor). Just reading the potential side effects on Wikipedia scares the crap out of me. Like I said, after my issues with medications in the past I am very side effect averse. So I may very well reach a point where I need biologics/immunosuppresants, but I hope I can continue with diet for the time being. I'm drained from constant worry about side effects.
Posted 6/28/2020 9:39 PM (GMT 0)
I forget all the technical terms, broadly speaking biologics are derived from organic material, hence the name biologic. They are large, complex molecules that are difficult to synthesize which is a contributing factor to their high cost (they are still of course exorbitantly priced and could be much cheaper if the system wasn't so messed up...)
Biologics all have "mab" at the end of their generic name (infliximab, adulimumab, vedolizimab, ustekinomab etc) which stands for "monoclonal antibody". Being organic,the body can have an immune reaction to them and make antibodies against them, the former causing side effects such as joint pain, allergic reaction, and drug induced lupus. The latter means your body clears the drug away and then it can't do its anti inflammatory job.
Xeljanz is a small molecule, entirely synthetic and has no reason to be expensive other than for Pfizer to recoup the millions they spent on developing it over the course of 10 years. What it has in common with biologics (apart from being exorbitantly priced) is that it inhibits one part of the immune system with the aim of reducing the body's inflammatory response. But because it's not an antibody then the body cannot mount an immune response or make antibodies.
Both biologics and jak inhibitors have the potential to inhibit immune response to infections and that is, i guess, what makes them get lumped in the same category.
Biologics are administered via infusion or injection while xeljanz is just tablets.

Apart from that, I hope diet continues to work for you for many years. If you do one day need something stronger, it's not the end of the world!
Posted 6/30/2020 1:29 PM (GMT 0)

poopydoop said...
I forget all the technical terms, broadly speaking biologics are derived from organic material, hence the name biologic. They are large, complex molecules that are difficult to synthesize which is a contributing factor to their high cost (they are still of course exorbitantly priced and could be much cheaper if the system wasn't so messed up...)
Biologics all have "mab" at the end of their generic name (infliximab, adulimumab, vedolizimab, ustekinomab etc) which stands for "monoclonal antibody". Being organic,the body can have an immune reaction to them and make antibodies against them, the former causing side effects such as joint pain, allergic reaction, and drug induced lupus. The latter means your body clears the drug away and then it can't do its anti inflammatory job.
Xeljanz is a small molecule, entirely synthetic and has no reason to be expensive other than for Pfizer to recoup the millions they spent on developing it over the course of 10 years. What it has in common with biologics (apart from being exorbitantly priced) is that it inhibits one part of the immune system with the aim of reducing the body's inflammatory response. But because it's not an antibody then the body cannot mount an immune response or make antibodies.
Both biologics and jak inhibitors have the potential to inhibit immune response to infections and that is, i guess, what makes them get lumped in the same category.
Biologics are administered via infusion or injection while xeljanz is just tablets.

Apart from that, I hope diet continues to work for you for many years. If you do one day need something stronger, it's not the end of the world!

So in theory, Xeljanz should not lose its potency like biologics do, since there won't be antibodies produced in response to taking it? It seems like the studies I saw on it only show a 15-30% response rate for IBD....which unfortunately seems common for IBD medications.
Posted 7/4/2020 9:28 AM (GMT 0)
Right, exactly, it should not lose its potency. Yes the trials showed 50% had a response initially, of which 50% maintained that response for a year, so that would be 25%. My doctor told me that it's often the case that a drug performs better in real life than in the trials, which may be related to how the trial defines a "response". Moreover one has to bear in mind that the people on clinical trials are usually the most refractory and likely to have already failed 1-2 biologics. A 25% success rate in that population is actually pretty impressive. And the overall success rate in ibd patients is probably significantly higher...
Posted 7/4/2020 10:22 PM (GMT 0)

poopydoop said...
Right, exactly, it should not lose its potency. Yes the trials showed 50% had a response initially, of which 50% maintained that response for a year, so that would be 25%. My doctor told me that it's often the case that a drug performs better in real life than in the trials, which may be related to how the trial defines a "response". Moreover one has to bear in mind that the people on clinical trials are usually the most refractory and likely to have already failed 1-2 biologics. A 25% success rate in that population is actually pretty impressive. And the overall success rate in ibd patients is probably significantly higher...

That's what my GI doc at Hopkins told me. My GI doc at Penn (my current doc) on the other hand said in his experience that 15-30% number is pretty accurate. Hopefully your doc and the Hopkins doc are correct.
Posted 7/6/2020 10:34 PM (GMT 0)
I'm 8byears on remicade with no side effects, most fall in the rare category, less than 1 percent experience it.
Posted 7/8/2020 9:48 PM (GMT 0)

iPoop said...
I'm 8byears on remicade with no side effects, most fall in the rare category, less than 1 percent experience it.

Hey John. Glad you aren't experiencing side effects. Does that keep you in full remission or do you alter your diet as well?
Posted 7/10/2020 1:44 AM (GMT 0)
I'm on only remicade and follow the See Food diet, I see food and then I eat that food lol. No diet restrictions. I try to eat healthy but do enjoy the occasional greasy hamburger, fries, and soda.
Posted 7/10/2020 12:41 PM (GMT 0)

iPoop said...
I'm on only remicade and follow the See Food diet, I see food and then I eat that food lol. No diet restrictions. I try to eat healthy but do enjoy the occasional greasy hamburger, fries, and soda.

OK, your signature says you're on nightly Rowasa, I guess that's stopped?

That's great you're in full remission for 8 years. Very cool. If you recall my username on here you might recall how afraid of biologics I am. Largely due to getting screwed over by medications in the past. And it often seems I can control it with diet....only to then eventually go off the diet or start bleeding again, as I did this morning sad

Strangely, I generally have no other symptoms. Minimal pain, cramping, etc...usually formed BMs. Just bright red blood. Occasionally some discomfort.
Posted 1/13/2022 5:37 PM (GMT 0)

David1991 said...

Do you modify your diet in any other way or eat whatever you want? Shame I didn't seem to benefit much from it, seems like it helps a lot of people on here


First of all, I'm terrible sorry for the extremely late reply. I haven't visited this site since my last post.

No, I didn't change my diet at all, although I've been avoiding some things for years because of UC. I've been cutting down my wheat intake a lot. These days I only eat bread in the morning, usually one with only 20 % carbohydrates. I do eat high carb food like potatoes though, it's just the wheat that I avoid.
Still, the ginger works for me even if I'd start eating pizza 24/7. I don't have to compromise.

The number one cause for blood in stool for me is very large portions. Years ago it could also happen with very spicy food, but I haven't experienced that in a while.
To clarify, I'm not talking about a flare here, just blood, like a wound in the bowel. It usually heals within a day or two by itself.

To those who haven't read my earlier posts, my UC is pretty mild and manageable, and I think it's important to point this out in this context.
Posted 1/13/2022 6:35 PM (GMT 0)
In the beginning, three years ago, I drank at least 70 ml (2.4 US fl oz) every second day, just because I didn't know how much was enough. After a few weeks I dropped it to two times a week, seemingly without it making any difference to how I felt.

Still, that's a lot of juice to make, especially since I made the ginger juice together with fresh apples at the same time with my centrifugal juicer and stored it in bottles in the freezer.

During the last winter I got so bored of making ginger juice that I stopped and used up all the medicine I had at home.

That got me thinking about how I could improve the juice making process. I never wanted to stop drinking ginger juice, but the juice making just took too much time.

This summer I started doing it differently. I make ginger juice only, pour it in ice cube trays and freeze it.

Twice a week, I take four ginger ice cubes, 56 g (2 oz), or 56 ml (1.9 US fl oz), and put them in a full big glass of soft drink (ginger goes best with apple) and wait until they're melted.

Never drink ginger juice on an empty stomach, never heat the ginger juice. You need a knife to get the cubes out of the tray as the ginger juice is quite sticky unlike regular ice cubes. Hold the back of the tray under running cold water first for a few seconds, obviously. Haven't tried a soft ice cube tray but I bet it would be better for this.

Today is ginger day, cheers!
Posted 2/12/2022 7:02 PM (GMT 0)
Rookie question here: I tried blending ginger to get the 50-100ml as you've laid out here, but the blender doesn't seem to produce any juice. Do I actually need to use a juicer instead of a blender?
Posted 2/13/2022 12:04 AM (GMT 0)
I used a juicer for ginger for weeks. Unfortunately this didn't work for me, eventually it only made things worse.
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