For me MTX symptoms start on day 3 and last through day 5 of a seven day week. Symptoms are flu like, mostly lack of energy and diarrhea. I have only been on it TWO weeks and this is already obvious....
@question everything- Did they give you any "pre" drugs before the entyvio? It is possible one of those was the source of your sinus epiphany! @ncot- Entyvio was absolutely great for me. My only...
I am not on any biologics. Never had any problem with side effects with the biologics, fortunately. Yeah, I was recently tested for c diff. so that is probably not the issue here. I guess it is...
Wow it's nice that you guys have had such side effect free results. Today is day 6 of being on this drug and I am not sure if I can bring myself to take a second dose it has made me that sick. At a...
Yes, taking a folic acid supplement, 1 mg a day. Glad to know you guys did not have the side effects I think I am having. I have only had one dose so maybe it is just coincidence and my crohn's...
My only problem with Entyvio is that the benefits did not last very long for me. It took probably 6 months before I really noticed a marked improvement, so give it plenty of time. Honestly for me it...
Just started Methotrexate 25 mg subq injection once per week. I noticed flu like side effects by the 3rd day after the injection. Has anyone else had this experience, and if so- how long before you...
Update- Well, I did ok for awhile there on Entyvio, but it has since failed. I did get a few pretty good months out of it. I would have rather had a few good years for sure but what can you do? Onto...
I would not worry. It is likely that Entyvio, like other biologics, will eventually become less effective. When will that happen? Could be months or years. Drug companies will be all over this...
Yes you can build up antibodies to Entyvio. Following is an excerpt from http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2015_entyvio_169414-eng.php Immunogenicity Entyvio showed...
It seems like a lot of us are having good results with this drug. It has been mentioned before, but I will say again that Entyvio may take a long time to work. Maybe six months or more. If you can,...
@Kerrilynn- I would give the Entyvio at least 6 months to work. It really does seem to take that long. Hopefully NCOT will be along to discuss this with you, but you may want to private message her....
mikef- please let us know how you fare getting Entyvio infusions on the road. Getting infusions at Walgreen's (or elsewhere) could be really convenient for travelers, or if the infusion came up over...
^^ THIS. Crohn's disease is not an eating/nervous disorder!...
Just had my 5th infusion of Entyvio. I've been on it for a little over five months and I'm still improving- very slowly. It would be great to achieve remission on this drug, but I'm not sure how long...
In today's age, you would hear about a Crohn's cure everywhere. Here. Twitter. Television, internet. How much it would cost, now that is another question. The pharmaceutical companies now have...
You should be drinking LOTS of fluids to flush out the contrast!...
YOU DON"T SIMPLY QUIT PREDNISONE!!! Usually they give a pretty high dose for IBD, 40+ mg/day and if you just quit that- BAD things can happen. If you were on it for your sinuses, the dose was...
My advice- 1- don't wad, fold. Wipe with as many folded pieces as is necessary to come out clean. The better the toilet paper, the less folding needed. If you have diarrhea, usually the first few...
After four months on Entyvio, I am seeing pretty good improvement (maybe about 50% better). If I reach remission on this drug by month six I will be amazed and overjoyed, it has been quite some time....
I have not noticed any anxiety to date....
Hopefully the Entyvio works for your daughter! If the doctor suggests the knife and you and your daughter are not comfortable/disagree with it, do not hesitate to get a second opinion. Surgery is a...
Ha! I have used the "don't eat/eat as much" strategy to feel better too! I also find it helpful to drink some of my calories, maybe try to have a meal shake for breakfast and/or lunch....
Great that it is working for you Old Cronie. One thing I have noticed for me is that a couple days after the infusion I do a bit better, but so far that ends within a week or so and I go back...
I am on Entyvio (three doses in) and have experienced no side effects to date....
I have to agree with the slow onset of entyvio. I am on week 9. Not a lot of improvement yet....
2Bbetter I hope your daughter responds to entyvio! I must add that I have a lot of respect for the parents I see on these forums. It is great....
If it works, even for only some Crohn's patients it will spread like wildfire. They thought the H. Pylori theory was hogwash back in the day too. Bacteria for stomach ulcers? Ridiculous! :)...
It would be crazy if something like this did work... but I think the main reason why a colon barrier system has not been pursued is that the immune system attacks the colon from the inside, so an...
I wholeheartedly agree with you scum1- don't rush the pred taper! Coming off too fast could lead to a flare for sure, and giving the entyvio the benefit of a "soft landing" really cannot hurt....
The protein that entyvio is directed at is not in the gut. It is directed at a protein on white blood cells, or lymphocytes. http://www.ncbi.nlm.nih.gov/pubmed/14563643 I would also like to note that...
Not creative- I find this to be exactly true and I hope others that have a doctor that dismisses them learn from your important experience. If you have a doctor that doesn't "believe" you, find a...
Days 7-14 could be best be described as chaotic. Improvement one day, a little step back the next. Overall though, a slight improvement week two....
Day 9 was definitely better than day 10. I would say I am still on an upward trend. Others have reported that the journey upward with this drug is not a straight line, and so far my experience has...
Good luck, Shibby22! Does anyone know if "small molecule" inhibitors of the same alpha 4 subunit (or anything else for that matter) would lose efficacy like the antibody medications? I am thinking...
As far as exercise goes- the higher the impact of the exercise, the better it is for your bones. Jumping, sprinting, heavy weight lifting are best. Of course, you have to do these things before your...
WOW elexis, I'm glad you got a two year remission, wish it would have lasted, though. I think (hope) they are coming out with more drugs with a similar mechanism to entyvio so maybe one of these will...
Just make sure she knows you are there for her, but don't push her....
Hopefully I will have some encouraging news, Octobergirl. I did try 6-mp, it was not completely ineffective, but did very little. I have had extraintestinal symptoms- joint pain, apthous ulcers,...
No change days 4-6. I will post a summary on the OP so people do not have to read through the thread. NCOT- I agree. We have yet to see an IBD treatment revolution....
Another perspective on the second opinion- I had doctors tell me I had UC for years, then they switched to Crohn's after the first GI who apparently knew what he was doing had a look. While I do...
I cannot say that I have noticed a correlation with Lialda (or other mesalamnines) and these kinds of nightmares. For me the nightmares come and go, but spike with my symptoms at times. Pred and LDN...
For all my complaining about big pharma, we as IBD patients are lucky to have so many choices now. Think of having Crohn's even 20 years ago? What treatments were around then? Pred and sulfasalazine?...
I guess the good news is big pharma now sees IBD as a huge cash cow. For us new drugs, and therefore options, are a good thing. But the treatment paradigm is flawed. The drugs are not very effective,...
Thirteen years without remission sounds like hell. Indeed, a week of Crohn's is hell, isn't it? People do not understand the profound suffering of Crohn's disease. For some reason, because diarrhea...
I too, have been flaring for awhile, over a year now. Nothing has affected it yet. Tried uceris (multiple times), pred (also multiple times), and humira on this flare to no avail. I was also on...
So sorry for your daughter's diagnosis. Some people do very well on 6mp and hopefully she is one of them! I am glad she has put some weight back on- we are all pulling for her, and your family....
Disease is severe. I will not go to the knife until all other options are attempted, though... I have had some GIs that push surgery, my current does not. I'm pretty sure they would take my entire...
The anti-tnfs never worked. No disease in the terminal ileum- only in the large intestine. @scum1- I am aware of the time line most people experience with these drugs. Some of what is happening could...
Wow! I am also interested if you thought it was the LDN!...