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kiltubrid

kiltubrid

Joined
Jun 22, 2011
Messages
100
Location
Madison, WI, USA
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 diagnosed.)

I am on the Janssen Care program for Remicade and since I now qualify for Medicare, the social worker at the hospital where I get my infusions told me I'd be kicked off of it. When I called Janssen Care to double-check, that turned out not to be the case since I am still working so I still have private insurance through my employer. When I called the social worker to correct the info she had, she told me it had never come up for her before because she had never before had a Remicade patient who had reached age 65. That made me feel old!

Other than that, there's been no real difference, except that now all my doctors are younger than I am -- much younger!

Have any of you older Crohnies had issues come up as you age with Crohn's?
 
Im sorry you had to go through that stress and age related discomfort the social worker put you in. Things like that should not happen.
Always remember people like you who have a 40+ year experience can teach about IBD to young doctors and especially to social workers;)
Your story shows how we always have to remain vigilant, alert and to be our own advocate, just like you did, bravo,10 times!
 
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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 audio recording what the doctor tells me post-colonoscopy, pre-op and post-op; taking in my own mix tape for them to play in the operating room; and, most importantly for me, making an appointment with two doctors at the same time, so they can talk to each other and I can be involved in the conversation.

I have been lucky to have mostly great doctors on my Crohn's journey, and actually I have found the youngest ones to be the very best because they are in general more up on the latest research. And nurses! They are amazing! Nurses make all the difference when it comes to health maintenance and recovery. I would not be alive without them.
 
Hello, I'm 57 years young and have no diagnosis although I have had operations related to bowel disease. I think that if I asked for a social worker, I would be 70 before one showed up. In this pandemic, social workers are swamped and prioritising urgent cases. People with chronic illness feel all alone, that's for sure. Yesterday, I had a headache with visual disturbance but I didn't panic, I just took ibuprofen and it helped. No-one wants to go to hospital in case they catch the virus as entire floors are full of Covid patients. The Kent variant is to spread worldwide according to the news and I'm next door to the epicentre. Every day I want to leave but it's not allowed.
 
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 walk my dog twice a day. Other than that, I have not been out for almost a year. There's not a lockdown where I live so my near-quarantine is self-imposed.

It is lonely having a chronic illness, even in the best of times.
 
Very interesting, I googled the Book and it is still available!
On the description: ''The ultimate consumer's guide to surviving a hospital stay, Take This Book to the Hospital with You, gives the inside information most hospital administrators would prefer that you not know.'' That last part is funny, but it is true!
Some staff are positively impressed when we take some leadership or autonomy about our own health, services and rights. Key is really to find that kind of team. Im glad you did, I am very happy too with my GI team, secretary, nurse and GI, always all very nice, helpful and open about my sense of autonomy.
Hospitals are big machines, navigating inside is not always easy, it does take skills to benefit the most of it.
 
I was diagnosed with Crohn's at age 60, although I had symptoms for at least 10-15 years prior to that. My disease was at first controlled by occasional short courses of budesonide, but for the past 3+ years I've been on Stelara. My GI moved me up to a biologic after a nasty bout of pericarditis brought on as an extra-intestinal manifestation of the Crohn's. My Crohn's intestinal symptoms have usually been fairly mild, with lower right quadrant pain being the worst and most common one. And now with Stelara I hardly get even that. I'm in pretty solid remission (knock wood).

I'm on the Janssen Care Path program, which keeps the Stelara costs quite low. But that will end once I retire, since Medicare does not particpate in such pharma company cost programs. My understanding is that the reason Medicare does not participate is because the government considers such programs between drug and insurance companies, with the drug company reimbursing the insurance company part of the purchase price, to be a barely-legal form of a kick-back. Retirement is still some months away, so I haven't made a final decision about which Medicare part D coverage to sign-up for, but it looks like there are several reasonable options. My co-pay will no doubt go up a lot from the current incredibly modest $5/dose, but it won't be the shockingly high full retail price either.

As far as COVID goes, I'm staying home and avoiding people as much as possible because I also have multiple risk factors. I have:
Crohn's disease
No spleen (long story)
Immunsupressive drug (Stelara)
Hypertension (but controlled with medication)
Type A blood
> Age 65
And I'm male...

...each of which is a risk factor for a worse outcome in case of COVID-19 infection. In fact about the only risk factors I DON'T have is that I'm not overweight and I don't have diabetes.

The good news is that I've had the first dose of vaccine (Moderna), and I'm scheduled to get the second dose this weekend. Which brings up another thing to worry about. I'm scheduled to get the second dose two days before I'm due for my next Stelara injection. So I'm mulling over whether and/or how long to delay the Stelara injection in order to allow the vaccine time to kick in. I don't want to weaken my immune response to the long-sought vaccine, but I don't want to risk falling out of Crohn's remission either by delaying the dose beyond the standard 8 weeks. Right now I'm leaning toward delaying the Stelara by one week - hoping that is enough time to get the benefits of a robust response to the vaccine but not enough to fall out out of Crohn's remission.

But that's the way it goes with Crohn's: there is always the next thing to worry about, and there are always competing factors to juggle.
 
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.
 
kiltubrid said:
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.
Click to expand...
I went so long without diagnosis because I never went to any doctor to see why my lower right abdomen hurt from time to time. As I said my other symptoms weren't too bad. Not much diarrhea to speak of. I did have occasional strange, random 24-hour fevers from time to time but nothing too alarming. To me the pain felt more like it was in my abdominal muscles rather than the underlying gut. I sort of thought I had a weak spot there that easily resulted in a pulled abdominal muscle or some such thing.

It wasn't until some routine blood work showed that I was severely anemic (hemoglobin= 6.7) that alarm bells went off and my GP insisted I talk to a GI to find out what was causing the loss of blood. In fact he actually personally called me on the phone and insisted that I immediately go to the ER to see why I was so anemic. He said I shouldn't have been able to stand up without fainting, but I was still carrying on - going to work every day. I felt tired a lot, but I thought that was just because I was 60 years old.
 
@Scipio No possibility to delay the 2nd vaccination by a week? They say the interval should be in between 21 to 28 days. They are extending the 2nd dose here in Canada because we are lacking vaccines. Did you get the opinion of your GI for best time to get the vaccine while on Stelara? I am curious as this will be a question I will have too when my turn comes.
 
No, I did not ask my GI about the timing of the vaccine. I felt lucky to get the appointment for the vaccine and the 2nd dose when I did. I didn't have much of any flexibility. The opportunity for the vaccine came up and I took it. But I do have some flexibility about when to take the Stelara, and that's what I'm mulling over.

Actually, I doubt that GI's know much of anything about how the IBD biologics do or don't affect the response to the vaccines, because the drug companies themselves don't know. Everythng about COVID is too new. Those studies simply haven't been done yet, so they fall back on standard language about it "may affect" the response to vaccines - the same thing they say about every vaccine they haven't studied.

My GI would pretty much be guessing, which is what I'm doing too.
 
Scipio said:
No, I did not ask my GI about the timing of the vaccine. I felt lucky to get the appointment for the vaccine and the 2nd dose when I did. I didn't have much of any flexibility. The opportunity for the vaccine came up and I took it. But I do have some flexibility about when to take the Stelara, and that's what I'm mulling over.
Click to expand...

Well, all my careful timing in trying to thread the needle of getting both vaccine doses done in the latter half of the 8-week Stelara interval got blown out of the water this weekend when my appointment for my second vaccine dose got cancelled. Cancelled because they ran out of vaccine. The expected vaccine shipment did not arrive on Friday, so the vaccine site is now shut down for at least three days.

My second dose has been tentatively rescheduled for next week - more than a week after its original time. I didn't want to delay the Stelara over three weeks past its due date while waiting for the second dose to finally be given and become fully effective. Plus, who knows whether there will be another vaccine delay? So I went ahead and injected the new Stelara dose rather than risk falling out of Crohn's remission. I'll just have to take my chances and hope that the high Stelara concentration now in my blood will not dampen the immune response to the vaccine by very much.
 
@Scipio
Vacccine and Stelara dose timing
We were told by Gi if Ds can get the vaccine
Just get it
As far as timing they want him to try to schedule it half way in between doses of Stelara similar to the flu shot
But don’t expect it will be possible
Flu vaccine has been fine for years
Even with mtx every week
Stelara every 4 weeks and another biologic every other week
 
kiltubrid said:
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 diagnosed.)

I am on the Janssen Care program for Remicade and since I now qualify for Medicare, the social worker at the hospital where I get my infusions told me I'd be kicked off of it. When I called Janssen Care to double-check, that turned out not to be the case since I am still working so I still have private insurance through my employer. When I called the social worker to correct the info she had, she told me it had never come up for her before because she had never before had a Remicade patient who had reached age 65. That made me feel old!

Other than that, there's been no real difference, except that now all my doctors are younger than I am -- much younger!

Have any of you older Crohnies had issues come up as you age with Crohn's?
Click to expand...
kiltubrid said:
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 walk my dog twice a day. Other than that, I have not been out for almost a year. There's not a lockdown where I live so my near-quarantine is self-imposed.



It is lonely having a chronic illness, even in the best of times.
Click to expand...
Kiltubrid.....I have had CD for over 50 years (age 67 now and diagnosed at 16). So, you and I have seen many changes over the years! I ran across this guide today when I was researching Stelara. If you have infusions or injections at a doctor's office, it looks like it is covered by Medicare Part B. If you inject your med at home, it is covered by Part D (higher copay). There's a lot of research to be done when you go on Medicare but I think Remicade would be ccovered. This is the guide that I found published by Janssen Care Path :
https://www.janssencarepath.com/sit...h.com/files/medicare-resource-guide.pdf?v=316
My doctor's clinic at the University of Miami told me that if you are on a med before Medicare, they should cover it after you are signed up. At the present I am still insured by group insurance at work.

Related to CoVid--Before Covid, I was on three immunosuppressants. My doctor removed methotrexate from my meds because of a higher risk factor. She referred me to a website that charts Crohns/ Covid patients and risk related to meds. This site is: https://covidibd.org/current-data/. Go to current data, scroll down....everything is broken down by age and meds. Hope this helps. Stay safe.......No Covid for you!
 
Things to remember
Remicade goes through the health medical insurance side not the pharmacy side of benefits
The medical insurance covers the infusion which just happens to be remicade or Stelara (induction infusion)
The Stelara is given by injection after the first infusion
The injection at home would be under the pharmacy drug benefits sides
Assume if it’s in a doctors office where they inject then they file it under medical insurance side for an injection that happens to be Stelara ??
We have found getting approval to get injections done at a doctors office or clinic is far more difficult
Especially if it’s a standard injection by syringe not vial
 
my little penguin said:
Things to remember
Remicade goes through the health medical insurance side not the pharmacy side of benefits
The medical insurance covers the infusion which just happens to be remicade or Stelara (induction infusion)
The Stelara is given by injection after the first infusion
The injection at home would be under the pharmacy drug benefits sides
Assume if it’s in a doctors office where they inject then they file it under medical insurance side for an injection that happens to be Stelara ??
We have found getting approval to get injections done at a doctors office or clinic is far more difficult
Especially if it’s a standard injection by syringe not vial
Click to expand...
Agreed...So when I go on Medicare, I will be paying a Part D copay (Stelara injection) if I can't have it done at the doctors office. I wonder what happens when you get infusions under Part B....lf you would eventually end up in the donut hole. Food for thought.
 
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. But as long as you don't have Part D and you are covered by private insurance for drugs, you can still get the Janssen Care. I hope she was right because if she's not, I may get a surprise bill for my February infusion! If that happens, I'll let you know.

Without Janssen Care, for my Remicade infusions, Medicare would pay 80% and then my private Medigap insurance would pay the rest.

It's all very confusing! This conversation must seem strange to anyone reading it from outside the U.S. who has a sane and humane healthcare system!
 
Yes, this is when I am very glad that I live in Canada. I hope it works out for you. It is frustrating to read about how insurance will deny much needed treatment for you guys in the USA, or how you have to fight for it or wait longer than you should for proper care.
 
kiltubrid said:
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. But as long as you don't have Part D and you are covered by private insurance for drugs, you can still get the Janssen Care. I hope she was right because if she's not, I may get a surprise bill for my February infusion! If that happens, I'll let you know.

Without Janssen Care, for my Remicade infusions, Medicare would pay 80% and then my private Medigap insurance would pay the rest.

It's all very confusing! This conversation must seem strange to anyone reading it from outside the U.S. who has a sane and humane healthcare system!
Click to expand...

I believe My Little Penguin was referring to when you go on Medicare. Your Jenssen Care Co Pay assistance is no longer available once you sign up for medicare. I believe that patients with any form of government insurance do not qualify for the CoPay Assistance Programs.
 
Jo-mom said:
Yes, this is when I am very glad that I live in Canada. I hope it works out for you. It is frustrating to read about how insurance will deny much needed treatment for you guys in the USA, or how you have to fight for it or wait longer than you should for proper care.
Click to expand...
It's very scary when you decide to make that jump into Medicare. It's like falling into the "great beyond" and you hope it all works out. That's one reason why I continue to work.
 
Correct all types of govt insurance (Medicare ,Medicaid ,Tricare (military ) etc..) disqualifies you from pharmaceutical co pay programs on all drugs

by design if you qualify for medical assistance or Medicaid then you have no copay for any drugs or doctors visits

it’s only Medicare that gets the short end of the stick especially with the doughnut hole
 
Also note the prescription plan of insurance covered injectables and pills /liquids etc...
Remicade is given by infusion
That means infusion is a medical procedure covered by Medicare (not Medicare part D)
You just happen to be infused with remicade
So Jansen care path can not be used for infusion drugs with Medicare even without part D
Injectable drugs /pills etc are through the pharmacy side of insurance plans so if you don’t have govt pharmacy benefits injectables might be covered by Jansen care path (not sure on this one though since we were told absolutely no govt insurance)
 
ADDITIONAL AFFORDABILITY SUPPORT FOR YOUR PATIENTS
Support for patients using government-funded healthcare programs or patients without insurance coverage
Janssen CarePath can provide information about other resources that may be able to help your patients with their out-of-pocket medication costs:
  • State Pharmaceutical Assistance Programs (SPAPs)
  • State Health Insurance Programs (SHIPs)
  • Medicare Savings Program
  • Medicare Part D Extra Help—Low-Income Subsidy
  • Independent Foundations*
Call a Janssen CarePath Care Coordinator at 877-CarePath (877-227-3728) or visit JanssenPrescriptionAssistance.com for more information on affordability programs that may be available.
*Independent co-pay assistance foundations have their own rules for eligibility. We have no control over these independent foundations and can only refer your patients to a foundation that supports their disease state. We do not endorse any particular foundation.
Click to expand...

From
https://www.remicadehcp.com/access-support.html
 
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 Medicare Type A only, and am still on private insurance from my work, so it's a moot point for me right now, but I specifically asked her what would happen if I got more than Part A down the road. That's when she said they only cared if you have Part D. Of course, she may have been wrong. However, the first time I got kicked off of Remicade because insurance wanted me to try a biosimilar, it was Navitus (the pharmacy benefits part of my insurance) that did that.

So now I'm entirely confused!
 
Older Crohner said:
...

My doctor's clinic at the University of Miami told me that if you are on a med before Medicare, they should cover it after you are signed up. At the present I am still insured by group insurance at work.

Related to CoVid--Before Covid, I was on three immunosuppressants. My doctor removed methotrexate from my meds because of a higher risk factor. She referred me to a website that charts Crohns/ Covid patients and risk related to meds. This site is: https://covidibd.org/current-data/. Go to current data, scroll down....everything is broken down by age and meds. Hope this helps. Stay safe.......No Covid for you!
Click to expand...

Thanks for these links. Older Crohner. They are very helpful!
 
I know you get different answers when you speak to the government folks who handle the insurance side it’s a hard No versus the drug company reps typically say it’s ok as long as “fill in the blank “

they should have a standard answer on both sides
Very confusing
My kiddo is only 17 so he has a while yet till he retires ....
 
kiltubrid said:
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.
Click to expand...

Well actually I am 58 and not 60 but I was diagnosed with Crohn's 3 months ago after a colonoscopy when they found a stricture and the typical Crohn's lesions in my terminal ileum. I had then my first calprotectin test and it was around 500 and last week I just had my second Remicade infusion. This diagnosis was a shock to me since I always had funny things happening with my tummy since I was a kid....I was diagnosed with ...piloric stenosis??.....chronic duodenitis?? IBS, bacterial overgrowth, etc etc etc....but well that was in the sixties....its incredible that I was not diagnosed after peritonitis caused by an abscess (due to diverticulitis???) colostomy, ileostomy, a lot of CT's and even that special MRI .....when I had blockages they told me it was because those adhesions.....and that there was nothing to do since if I had surgery for the adhesions that will only create more adhesions!!!.......

I don't know why they never did a calprotectin test!!!,.... its incredible that after so many colonoscopies they never went a little further and decided to explore the terminal ileum. The only thing that worked for me during all these years was prednisone that I had to get somehow because the Drs told me that I had IBS and that prednisone was not good for that.....no wonder that prednisone worked for me....because I had Crohns.!!!

Once in the nineties after several bouts of indigestion when I was 30 a Dr told me that he suspected I may have UC proctitis or Crohns because some inflammation that I had in the colon looked a little like UC but at the same time a little like Crohns, that he really could not tell, since the biopsy came back negative.....he never diagnosed it but he even went ahead and put me anyway on Asacol, later Sulfasalasine, and later Pentasa for a couple of years.....and they all did nothing for me, if I had a lot of stress the only thing that worked for me was the Prednisone......I dont think they had that calprotectin test or even those biologics in the nineties ....looking back now I suspect I had this thing since I was a kid since a GI Dr was always treating me and doing tests....but that was a long time ago in the sixties!!!

So I assume I had bad luck with my diagnosis since I was officially diagnosed ......25 years later!!!.... by a brand new young GI that went ahead and looked into the terminal ileum even after a MRI test said that everything was OK....well its never too late and this Dr put me on Remicade and Budesonide... at least I am 58 and not 60 when I was diagnosed......LOL!!!...hopefully if the inflammation values go down he will try to dilate the stricture with a balloon the sooner the better!!!

They say that Crohn's disease its a difficult disease to diagnose sometimes, but I think in my case it just took too long. Based on my experience I assume that the actual numbers of Crohn's disease in the US are much, much higher than the current estimates of less than a million. There are probably a lot of Crohn's cases that go un-diagnosed for a long time....hopefully that will change if that calprotectin test becomes more widely known and prescribed by the Dr.

And of course about the Covid.....I already had Covid 4 months ago just a month before my diagnosis, luckily no fever, no breathing problems, etc etc just VERY tired and later no smell. They told me not to have the vaccine right away since I had a lot of antibodies but I was thinking it was time now to get the shot .

Since I am now in Remicade I am a little bit worried to get it since I heard that if you had Covid before sometimes you get a much stronger reaction to the shot, dunno with Remicade being an immune modulator probably it will be ok.....I have my Remicade follow up appointment with the Dr next week so I am gonna ask him if its safe to get the shot.
 
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