Hi Keith, she didn’t do well on 6mp it was the first drug along with a mesalamine that she used for a while and didn’t gain remission, along with added topicals at that time. It went like that for a...
Keith, she’s had been with a well regarded IBD DR in a NYC hospital from the beginning. She switched to a new hospital and dr recently because she wasn’t getting anywhere, maybe because of Covid...
Hi, My daughter came off remicade maybe three years ago. It was thought she had drug induced lupus. There were no antibodies to remicade though she had a positive Ana and that still comes and goes....
Thank you for that information TP. It’s a maze, you can find Xeljanz but run around for the Shingrix ....
Poopydoop, thanks for letting me know how you’re doing with Xeljanz. I hope you continue to have these great results. It would be nice if the world could share the medications that are best for the...
Thank you Old Hat, that makes sense, her rheumatologist at another well known city hospital also said he recommends the vaccine but couldn’t give it. You’re so right about finding a GP the name she...
Hi Stray dog, she is 32 and the dr is recommending it but doesn’t want to write the prescription, she says she doesn’t do that, and it should be the GP. There are other serious problems like a lot of...
Thanks for your responses. Old Hat, the dr. Doesn’t carry the shot and though it is recommended, won’t write the prescription. I have a feeling it’s my daughter’s age but I wasn’t there and the dr...
Is 32 too young to get the shingles vaccine? Has your GI provided the vaccine? Thanks for any information....
Flowersgal, that would be nice. I have read some Crohns patients respond to antibiotics. I know it’s different, but gut biome is what I’m the thinking....
Van Jordan, I agree. It also seems that patients are getting younger. I remember when literature said it was common to see IBD begin in the upper teenage years and above. Looking on different...
Since hearing about Crispr and their genetic successes I have been back to researching the question you posed. It is a long time since my daughter became a patient, and from the beginning about 13...
Hi, looking for a breast surgeon in the New York City and Long Island area. I don’t know if we can discuss names here. Can someone let me know the protocol. Thank you...
Thank you....
Olds hat thanks for letting me know. She was told that she may be able to schedule with her for the next visit. Right now she’s using enemas. It’s not worse but not better. I don’t think she ever...
Thank you for your answers. I wrote a long reply the other day and my finger hit an ad on the iPad screen before I submitted it, and it was gone. I was curious the person that told was adamant that...
I usually post on the UC board, but I’m posting this here, too. I was told that Remicade is not being used for IBD anymore and hasn’t been used for a while because it is too expensive and insurance...
I was recently told that Remicade has been discontinued for IBD because insurance companies haven’t been covering for sometime. I was told that similar medications were being used but patients were...
Mike Odat please post if you go with remicade and it helps the other symptoms Thank you...
Thank you Sherrine and LJ I had never heard of this medication. I know that on occasion the Motrin medicines did help. I'll tell her about it, and she can ask her dr. Sometimes her inflammatory...
Thank you for answering Sherrine. I started going through fibro101 and will read more in the morning. She can't use ibuprofen because of the ulcerative colitis, it's only Tylenol. But it seems like...
We don’t have any definite diagnosis, Along with others symptoms a major complaint Is the constant pain around the rib cage , my daughter says it feels muscular. It’s all day every day for months....
Thank you Pit Mom. That's what I'm going to do. I was researching to have some kind of an idea of what I wanted to ask of a neurologist , or Neurosurgeon. I have seen a couple of neurologists over...
H.T. Thank you, I will seek him out, the thing is I don't have "trigeminal neuralgia" in the typical sense, though I'm wouldn't doubt that the trigeminal nerve was damaged....
Susie, yes, I've had the pain for years, if you don't have TMJ or trigeminal neuralgia then drs/ dds don't want to be involved. Medication is helpful but most of them are as life changing as the...
ci Rep. 2015 Jul 30;5:12549. doi: 10.1038/srep12549. Toll-like receptor 4 signaling in neurons of trigeminal ganglion contributes to nociception induced by acute pulpitis in rats. Lin JJ1, Du Y2, Cai...
The facial Pain Association may be able to help you. They are on line....
New Me, I asked after reading your post. My daughter had a problem and had to go off remicade after 5 years. She's still having problems, a year later. Your post made me think, anything is possible....
I'm wondering if this is happening ? Thank you...
Mark, Maybe you can reach out to the CCFA, They should be a good resource for help....
Thank you, she will ask about the transplant now in case this isn't eradicated.. Garyi, the Dr is a very experienced IBD dr, and is well sought after so I'm in the right place. I will question the...
I have read that people beginning entyvio when they're not flaring badly, or their flare is under control from steroids,, or other meds, seem to respond sooner. Also, maybe your dr can try moving the...
She’s just talked to the nurse. They put her on 2 weeks of oral vanco, the last time she had this was 2 about 2 years ago,after a trip a tropical country. The odd thing to me now is they tested her...
Hi, My daughter had a scheduled colonoscopy after her loading doses of entyvio last week. The biopsy reports have all been coming back fine, until c-diff showed up from a biopsy. This happened last...
Hi, What form are you taking it in, I have heard the oil tincture can cause a loose stomach. There are pills and vaping, also is it medical grade? Thank you...
Happy for you that you're done. Hope you're legs are better today. Jayce...
Thank you Gettng By and Buena. I see how many forums over lap. It makes sense....
Hi read that some antidepressants impede healing of bone from implants, But I couldn't find information on this. The Cymbalta manufacturer said nothing in their literature so it's fine. I read ssri's...
Hi, I'm sorry his remission is ending for now. I hope you don't mind I'm curious about the procedure that gave him remission,and have questions . Was his transplant originally given for c-diff or to...
Hi, My daughter is still dealing with lupus like syndrome , probably from the remicade. It may be chronic since she has been off remicade for almost a year and the symptoms are still here. The blood...
Approaching almost 12 months, some improvement, but definitely still hurting....
Hi, I wanted to jump in on the new building. I said to my daughter that it felt like a space ship. Once you're out, it's hard to get back in if you had a second thought question. No one knows where...
You don't mention what meds you take. That is something to look into. Some can cause nerve problems, you may want to ask the dr about....
I just came back and saw the newer answers, Thank you. I will take the advise to the dr, but the pain began before she was on the steroids. The steroids were only used for a week, though heavily. A...
Straydog thank you again, I appreciate your help. Yes we know quest very well. For some reason my daughter thought she had to send her blood to Europe for the Melissa test. I will call quest and ask...
Hi, I'm trying everything we can think of for my daughters sudden onset of muscle pain. She does have ulcerative colitis, positive lupus, probably drug induced, but the, severe pain that we thought...
Thank you GreenBeans. I will do that....
I think they manage an email when we've shown up back at the rheumatologist, but it may not say much. I know what you're saying, we are concerned about another treatment getting started. She needs to...
Thank you both. The rheumatologist said the plaquenil would hurt her stomach,. So he used the steroids. That was stopped after a couple of weeks when they didn't help. The gastro said to take a...
Hi, I'm usually on the ulcerative colitis board. My daughter has had UC for about 10 years. She was on Remicade doing very well for the las 5 years, and then suddenly developed pain. The pain began...