That's pretty horrifying, I'm glad to hear you're finally doing better. This is one FB group I'm part of https://www.facebook.com/groups/SCDers it's for those following The Specific Carbohydrate...
Not sure what the hostility is about but what I mentioned is directly what you were talking about. I said the increased risk would likely apply to both RA and UC patients taking Xeljanz, as there is...
https://clinicaltrials.gov/ct2/show/results/NCT02092467?view=results It's pretty clearly seen here. Again, not saying you shouldn't take it but cancer risk is greater with Xeljanz compared to...
The risk would likely still be there, especially the risk for malignancies., and that's just compared to TNF inhibitors, which themselves already have a higher risk of malignancies compared to...
Camronrolls, what is your LVEDD and LVESD on your last echo? Can you scan a copy of it?...
OK thanks, my insurance specifically told me it wasn't covered and to call Entyvio to ask for assistance. I have Blue Cross Blue Shield "Personal Choice" from the Marketplace because my employer's...
OK thanks, I will a "major med plan", I've not heard of this. I did ask the insurance company though if, once I reach my out of pocket max, Entyvio would then be covered. They said no, because it is...
The Entyvio center told me they cover up to $20,000 for the year. Does anyone know how much a typical infusion costs? I was thinking this was my golden ticket but if each infusion is something crazy...
Oh that's awesome, so even though co-pay assistance is paying for it, as far as your insurance is aware you paid your max out of pocket so now everything else is covered? Nice Thank you all for the...
I've been back and forth about starting biologics for about 6 years now. I've been able to keep things at bay through mesalamine, occasional corticosteroids, and diet manipulation. Never perfect but...
I'd love to hear you explain why you think 4-5 months is not long enough to see if SCD works for someone....
Wow, 57 years of IBD. How many colonoscopies have you had in that time? Any hospitalizations? Any cancerous polyps in your scopes?...
Makes sense. Weirdly the last 2-3 weeks I haven't bled. Very rare that happens anymore. I added digestive enzymes but who really knows, such a weird disease....
Interesting, thank you. I'll have to look up how Xeljanz stops working then if antibodies aren't created. I suppose like other drugs like mesalamine stop working as well....
So why is a TNF blocker considered a biologic but a JAK inhibitor is not?...
Interesting, from what I've read Xeljanz isn't typically given for IBD. Why did they go with that over Humira, Remicade, etc?...
Yes, I tried 4.5mg LDN for 24 weeks. I didn't notice any benefit....
You might want to try morning and night. I recently finished 4-5 weeks of budesonide foam enemas as well. Once per day improved things, twice per day seemed to have me in remission. Unfortunately,...
This is good to know. Also for those reading along, after 1 month of budesonide / Uceris foam enema I got blood work and my cortisol was normal. This tells me that it did not go very systemic. By...
If fish oil is making you bleed I imagine it's due to the blood thinning (generally healthy) properties of it. Not that it's making the disease worse. Yea I would agree that while the diet hasn't...
I've heard that about ashwagandha but never saw any studies confirming it. I get mechanistically it could be an issue though. Can't say I've noticed a difference when starting or stopping. Can you...
It's interesting that you say it's weaker, and I've heard others say that....studies indicate it is not as effective as prednisone. But if you look up conversion sheets online for different...
You're the first person with UC I've heard talk about the genital pain and I have something like this too! I haven't gotten an answer other than recently being told by my urologist that it's...
I know many here have no issues with biologics. I've done everything I can to avoid them but now it's starting to feel like I have no choice. I don't have much pain, just mild discomfort (used to...
Man osteoporosis after prednisone, that sucks :\ Why not try budesonide / uceris for those in here worried about prednisone? I've not taken oral pred for what it's worth....
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...
Hey John. Glad you aren't experiencing side effects. Does that keep you in full remission or do you alter your diet as well?...
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...
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%...
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...
I hope I wasn't coming across as judgmental, if anything I was trying to avoid judgment being passed on those who do well with the diet. SCD and other similar diets (I don't think SCD is anything...
So are you guys just using meds to get you out of flares, then eating whatever you want? I don't agree SCD is a starvation diet at all. "Healthy, nutritious, even high fiber foods" are available on...
I am skeptical of the theory that it is JUST due to a gut dysbiosis (I believe that is part of it). I don't agree with what a lot of "naturopathic doctors" suggest, but out of curiosity what sort of...
I am familiar with AIP yes, as if SCD wasn't strict enough! Tough disease for sure. Yea it's hard to imagine it's almost standard protocol for some treating pediatric Crohn's Disease. The...
There are not only thousands of anecdotes out there about dramatic improvements from SCD/IBD-AID/Keto/etc but also studies showing decreased inflammatory markers, endoscopic improvements, and...
Bulk Supplements Boswelia Serrata...
Just wanted to update this thread. I did 3 days of Ensure soon after posting and it was absolutely miserable. I am seriously amazed that it could help anyone. I had been doing ketogenic SCD...
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...
I’d say more power to them!!! And I wish to heck it would have worked for me! I’ll be glad when more research is done that gives us all a better clue how to treat this stupid disease![/quote] Did...
This is true, but part of that lack of evidence is because there is no funding for large dietary studies. Look at the studies for pharmacological interventions, most of the results suck (e.g. 30%...
This is the first time I've ever heard of someone benefiting from stopping turmeric/curcumin. One time I tried stopping all supplements for a month (curcumin, vitamin D, fish oil, ashwaganda,...
SCD / diet manipulation and a calorie deficit definitely makes a big difference for me, but it certainly isn't a cure. Boswelia and Curcumin seem to help me. I haven't noticed a benefit from...
How do you measure it so frequently? Has the Entyvio helped her?...
Interesting, do you have a link to that? So there are regular salofalk enemas people are fine with and then the foam version is causing problems?...
Yea the tissue already being friable and then the steroid somehow damaging the tissue was my concern. So there is evidence corticosteroids can make tissue thinner and weaker?...
That's not the case here. There is a lot of blood every time I go, not just my first BM in the morning after the enema. I'll sit down and barely go but the toilet still has a lot of blood. Also, the...
Just curious if anyone has heard of more bleeding with a corticosteroid enema (Uceris in this case). I’m a proponent of the SCD diet, I don’t think it works for everyone but I think it can help a lot...
How old are you? Hopefully it's a permanent fix with no complications down the road. Yea I don't really hear many people talk about azathioprine/imuran doing much on their own like I do with...
You've been immunosuppressed for the last 2 years but according to your signature were in a recent 3 year flare? So none of the medications seemed to do much?...
Thanks for writing all of that. I've heard a few times recently about people developed drug induced lupus. That's scary as well. Did it go away when you came off the biologic? Regarding your last...