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  1. kiltubrid

    Restless leg or something else!?! Need some help!

    I know this post is 2+ years old but I’m replying in case anyone else has this problem. A few years ago a pharmacist recommended an OTC natural remedy called Restful Legs which is made by Hylands. There’s a nighttime version and a daytime version. The nighttime version includes melatonin which...
  2. kiltubrid

    Diabetes and Crohn's

    Just got diagnosed with Type 2 after 8 weeks of steroids. Errrrgh
  3. kiltubrid

    Starting Stelara

    It's SO FRUSTRATING when insurance dictates your care instead of a doctor.
  4. kiltubrid

    Achilles tendon enthesitis caused from crohn's disease

    Hopefully PT and a rheumatologist will be able to help him. If it makes a difference, the physical therapist I have specializes in sports medicine. I got her by chance but she has been great at listening and treating the issues I had. Previously I had less helpful therapists who either didn't...
  5. kiltubrid

    Achilles tendon enthesitis caused from crohn's disease

    Glota, I have enteropathic arthritis, as well, with Crohns, and had the same problem with my Achilles tendons in both feet. I put up with them for years, but then my left ankle got so bad I could hardly walk. My rheumatologist sent me for scans of both ankles, and I learned I had small tears...
  6. kiltubrid

    Aging with Crohn's

    Thanks for these links. Older Crohner. They are very helpful!
  7. kiltubrid

    Aging with Crohn's

    I'm just reporting what the Janssen Care rep (Monica) told me on the phone, specific to Remicade. (When you call 877-227-3728, you push a Remicade-specific number to get the right representative.) She told me as long as I don't have Part D, I could get Remicade through Janssen Care. I have...
  8. kiltubrid

    Aging with Crohn's

    My Little Penguin, that's not what the Janssen Care rep told me when I called last Fall. She said they only care about whether you have Medicare Part D, which covers the drugs portion of Medicare. If you have D (or any kind of government insurance), you can't be part of the Janssen Care program...
  9. kiltubrid

    Moving Abroad while on Remicade - South America

    I lived in South America (Ecuador) pre-diagnosis, and never felt better health-wise than when I was living there. Lifelong allergies & asthma just disappeared. I was high in the Andes with virtually no pollution or humidity and all the food was natural foods so I'm not sure how much that played...
  10. kiltubrid

    Aging with Crohn's

    That is the thing when you age you're often wondering "Is this Crohn's or being old?" Especially with joint pain and fatigue. I often wait before contacting a doctor, too, because I think it might just be the normal effects of aging.
  11. kiltubrid

    Aging with Crohn's

    Scipio, if you don't mind saying, how did you go so long without being diagnosed? Did they misdiagnose it as something else? The author of A Wrinkle in Time, Madeline L'Engle was diagnosed with Crohn's at age 60. She's the only other person I know of who was diagnosed so late in life.
  12. kiltubrid

    Aging with Crohn's

    Good points, CatLover. I'm surprised there isn't more conversation here about Crohn's and COVID. Many of us are on immunosuppressants (I'm on two), and that, plus my age, puts me in two high risk groups. I have not gone out at all except to go to the doctor, pharmacy, Remicade infusions and to...
  13. kiltubrid

    Aging with Crohn's

    Thanks, Lady O! When I was first diagnosed with Crohn's back in the early 1980s, I bought a book called Take This Book to the Hospital with You, and it was all about self-advocacy. It's probably dated now but it was very helpful at the time. From it I learned techniques I still use today, like...
  14. kiltubrid

    Aging with Crohn's

    I'm curious to know if there are any other people on here whoa re 60+ years who have Crohn's. I was first diagnosed when I was 26 and am about to turn 65 so I've lived with Crohn's now for almost 40 years. (Actually a bit longer than that because I had it for about 3 years before it was...
  15. kiltubrid

    Notice from Insurance about Switching from Remicade to Biosimilar

    Oh, so sorry to hear that, Paddywack! My decline on the biosimilar, Renflexis, was over a six-month period, so it you've been on it a year, maybe this is just a fluke. I hope you get back in remission feel better soon but, if you don't, maybe your doctor will want to change you back to...
  16. kiltubrid

    Notice from Insurance about Switching from Remicade to Biosimilar

    I got the same notice from my insurance last month, and I already had a documented history of the biosimilar not working for me. Three years ago, after being on Remicade for about four years, I tried the biosimilar for six months right when it was made widely available, and it wasn't...
  17. kiltubrid

    Restless leg or something else!?! Need some help!

    Lauren, I have this same issue. I find it's worse when I've been on my feet a lot during the day. It starts once I sit down and is especially bad at might when I am trying to fall asleep. I've had really good luck with a homeopathic treatment called Hylands Restful Legs. They also make one for...
  18. kiltubrid

    Success with LDN?

    I just started LDN for a non-Crohn's inflammatory condition, and was surprised to read that this might also be an effective treatment for Crohn's. I started on 1.5 mg and will gradually work up to 4.5 mg within 3 weeks. I have some questions for those of you who have tried LDN. 1) How long...
  19. kiltubrid

    Can anyone describe a flare?

    Hi, Fish, I have lived with Crohn's for 38 years, going through long periods of remission, and then having flares now and then. I think everyone might experience flares a bit differently but for me, it's been increased joint pain (this can also be caused by a sudden change in barometric...
  20. kiltubrid

    Moving Abroad while on Remicade - South America

    What did you do about your infusions in the 6 month waiting period?
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