I have had crohns for 27 years and although I know where every the bathroom is everywhere I go I have learned to deal with crohns. It's a daily struggle but what i deal with more now is my body aching and I can barely walk. My feet and legs hurt me tremendously. So bad that I can barely walk at times. I feel like my body is slowly breaking down. Any thoughts on older crohnies with the same thing? Also I'm soon to be 52 and work a full time job. Which is becoming harder to do!
Getting older and living with crohns
- Thread starter Msmith
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cmack
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Just what I was thinking. I hope things get better. Keep in touch.
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Strange about Humira: though it's prescribed for 11 different conditions, I don't think it can handle more than one at a time. I take it for CD, but it has exaggerated my psoriasis and significantly effected my joints. Ironically it is also prescribed for those two problems. My dermatologist, who puts people on Humira for skin problems, can't figure it out. I'm sure a rheumatologist would say the same.
By the way, MSmith, I've had CD for 35 years, and I'm almost 15 years older than you. I'm still working because of Humira's cost on Medicare, and in the last year or so I've started to get gimpy as you describe.
By the way, MSmith, I've had CD for 35 years, and I'm almost 15 years older than you. I'm still working because of Humira's cost on Medicare, and in the last year or so I've started to get gimpy as you describe.
Yes! I've been on humira for almost a year and methotrexate. I've gone off of the humira once and I was miserable but it doesn't seem to be doing as well as it was. I get so tired of going from med to med. I have left over lyrica from a time before but made my hair fall out so bad, but I am taking folic acid now. Do you think I could take it with my humira and methotrexate? I just feel so lost when it comes to all these meds and which one is doing what! And on top of that I have restless leg syndrome! I sometimes feel like I need to go off all my meds and start over. Except for the restless leg medicine! I would go nuts without it! Thanks for talking with me! I feel talking to someone with crohns will better understand me!
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Ask your doctor about taking folic scid with the other medications .
Yes! I've been on humira for almost a year and methotrexate. I've gone off of the humira once and I was miserable but it doesn't seem to be doing as well as it was. I get so tired of going from med to med. I have left over lyrica from a time before but made my hair fall out so bad, but I am taking folic acid now. Do you think I could take it with my humira and methotrexate? I just feel so lost when it comes to all these meds and which one is doing what! And on top of that I have restless leg syndrome! I sometimes feel like I need to go off all my meds and start over. Except for the restless leg medicine! I would go nuts without it! Thanks for talking with me! I feel talking to someone with crohns will better understand me!
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MSmith, make sure you see your GI every six months, and talk to him about your concerns. He should be able to explain all your questions.
For one, he should have told you folic acid and vitamin B12 may not absorb in your Crohn's system like they should. I keep sub-lingual (under the tongue) B12 in my meds cabinet, though I've never been low. And folic acid is the same; sometimes we need a supplement. I make sure I take a good multivitamin every day with that in it, and I take a heavy duty probiotic for general gut health and an immunity system boost.
There's great people on this board who are very knowledgable and they will talk to you about ANYTHING. You will feel a lot better making friends here who will explain things and support you through our common problems.
For one, he should have told you folic acid and vitamin B12 may not absorb in your Crohn's system like they should. I keep sub-lingual (under the tongue) B12 in my meds cabinet, though I've never been low. And folic acid is the same; sometimes we need a supplement. I make sure I take a good multivitamin every day with that in it, and I take a heavy duty probiotic for general gut health and an immunity system boost.
There's great people on this board who are very knowledgable and they will talk to you about ANYTHING. You will feel a lot better making friends here who will explain things and support you through our common problems.
cmack
Well-known member
I agree!
cmack
Well-known member
I have felt like that! I was pretty ditzy at times. Not usually, when I was first taking certain medicines, for instance, I had to judge what ones impaired me. Ask about all my empty pill bottles.....
cmack
Well-known member
Pardon me.
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Cross-stitch gal
Moderator
I'm not sure, but here are a few threads of those in their 50's talking about their Crohn's. I hope this might help some, however I'm afraid they might be a little old. There is a Diagnosed at age 50 support group on here though, which is one of the links I've included. I'm thinking there might be some on there you could talk to...
http://www.crohnsforum.com/showthread.php?t=69375
http://www.crohnsforum.com/showthread.php?t=54581
http://www.crohnsforum.com/showthread.php?t=60132
http://www.crohnsforum.com/showthread.php?t=69375
http://www.crohnsforum.com/showthread.php?t=54581
http://www.crohnsforum.com/showthread.php?t=60132
Cross-stitch gal
Moderator
No, it shouldn't have and when you unsubscribe from the emails it just doesn't show updates in your email is all.
And, no problem! That's what we're here for. I guess for me, it doesn't matter what age anyone is on here. I'm just thankful to have people I can talk to. But, at the same time I can understand one wanting to talk to those your same age...
And, no problem! That's what we're here for. I guess for me, it doesn't matter what age anyone is on here. I'm just thankful to have people I can talk to. But, at the same time I can understand one wanting to talk to those your same age...
You are correct about talking to someone with crohns that is the same age.It doesn't matter the age it's just that we are in different stages of it in our life! But would still love to talk to you! Maybe their are things I could help you with! Going to bed talk to you later!
Cross-stitch gal
Moderator
I totally understand!!! Especially turning 40 next year and I was diagnosed when I was 18. In some things I feel I'm still a baby as far as what some have delt with, but in others I too have had my experiences. But, that's with all of us.
You have a good night and will catch you again eventually!
You have a good night and will catch you again eventually!
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Msmith, I missed a question you asked about whether Humira "made it worse for me"?
Humira has stopped the strictures I was having about 5 years ago. And I suppose it has stopped larger CD flare ups that can happen. It is keeping the tiger down. Nowadays my GI says, are preventing these things important enough to bear the side effects?
In my case the side effects were increased psoriasis and joint problems. I went from a golfing nut to an old man hobbling around just about the time I started taking Humira. We can debate the causes, but CD patients usually know themselves best.
That's why I laughed out loud when my dermatologist wanted to prescribe Humira for my psoriasis. Now I see Humira ads for rheumatoid arthritis. Ho Ho. It's all a cynical ploy to avoid having the product go generic.
$4400 a month and counting, you thieving Abbvie bastards. Try asking Medicare about this.
Humira has stopped the strictures I was having about 5 years ago. And I suppose it has stopped larger CD flare ups that can happen. It is keeping the tiger down. Nowadays my GI says, are preventing these things important enough to bear the side effects?
In my case the side effects were increased psoriasis and joint problems. I went from a golfing nut to an old man hobbling around just about the time I started taking Humira. We can debate the causes, but CD patients usually know themselves best.
That's why I laughed out loud when my dermatologist wanted to prescribe Humira for my psoriasis. Now I see Humira ads for rheumatoid arthritis. Ho Ho. It's all a cynical ploy to avoid having the product go generic.
$4400 a month and counting, you thieving Abbvie bastards. Try asking Medicare about this.
I've had Crohn's since 1975 (diagnosed 1979) and have been on Humira for over a year (biweekly at first). I am on weekly pens for the last nine months and on methotrexate ever since I went to weekly. As soon as I went on weekly Humira and methotrexate, my GI added daily prescription folic acid to my regimen. I am 63 and have a reasonably good quality of life on this regimen. Not in total remission, but able to deal. This disease is so variable, each of us has a different experience.
JackG, my historical meds match yours (except no Entocort)! I also had an allergic reaction to Azathioprine. And I had a resection in 2008.
On the cost of Humira...big pharma plays an awful pricing game. I still have early retiree health benefits from my employer as I am 63. My scripts benefit group shows a cost of $1,800+ per pen (I use 4 each month). My co-pay is $46 per month, so Abb-Vie gives me a rebate that drops the cost to $5/pen or $20/month (they do this if you have private insurance and your total co-pay is less than--I think it is--$1,000/year). The scripts benefit company also gets an undisclosed rebate from AbbVie. The reason they get so much for Humira for those on Medicare is because Medicare does not allow the rebate game. And there is no "buyer's bargaining chip" with AbbVie outside the rebate game. I think a true reasonable cost for a pen of Humira is less than $300...because that is the negotiated cost to a major national pharmaceuticals buyer. Hopefully, with AbbVie's patent having expired and biosimilars on the way, competition will help the buyer in the coming years.
On the cost of Humira...big pharma plays an awful pricing game. I still have early retiree health benefits from my employer as I am 63. My scripts benefit group shows a cost of $1,800+ per pen (I use 4 each month). My co-pay is $46 per month, so Abb-Vie gives me a rebate that drops the cost to $5/pen or $20/month (they do this if you have private insurance and your total co-pay is less than--I think it is--$1,000/year). The scripts benefit company also gets an undisclosed rebate from AbbVie. The reason they get so much for Humira for those on Medicare is because Medicare does not allow the rebate game. And there is no "buyer's bargaining chip" with AbbVie outside the rebate game. I think a true reasonable cost for a pen of Humira is less than $300...because that is the negotiated cost to a major national pharmaceuticals buyer. Hopefully, with AbbVie's patent having expired and biosimilars on the way, competition will help the buyer in the coming years.
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Thanks, Karen. The bottom line with Abbvie is, like all Big Pharma, let's milk insurance companies for the most we can for as long as we can. I'm covered as long as I'm working and have group coverage. What's that extortion doing to my employer? Then once I retire everything changes.
According to Senior Advantage, Medicare covers about half of the $4400 a month and your supplement another quarter. Imagine being stuck with more than $1000 a month on a fixed income so the fat cats can have their $50 million bonuses.
Abbvie itself has a program where they can help once you're retired, but they won't say it's certain, they won't say how much and they won't hardly talk to you until you retire. So for fear of jumping off a financial cliff I'm still working at almost 67.
According to Senior Advantage, Medicare covers about half of the $4400 a month and your supplement another quarter. Imagine being stuck with more than $1000 a month on a fixed income so the fat cats can have their $50 million bonuses.
Abbvie itself has a program where they can help once you're retired, but they won't say it's certain, they won't say how much and they won't hardly talk to you until you retire. So for fear of jumping off a financial cliff I'm still working at almost 67.
Karen, it sounds like you and I are similar in meds except I take pramipexole for my restless legs. I go back to my doctor June 22. I have a lot of pain in my feet and legs. Almost unbearable to walk at times. I believe my humira helps but I'm not sure if the humira is meant to help the pain in my feet and legs. Lyrica really helped but I was loosing so much hair it was crazy! I just wonder if I should try it again? And maybe the folic acid will help with that. I am kinda lost about what to do next! I'm just tired of my body always hurting.
And for Jack, It really sucks that you have to continue working because of the big wigs that worry more about the bottom dollar than the little people they should be thinking about! I hope and pray that it will get better for you and you are able to live a retirees life without worrying about paying for medicine!
And for Jack, It really sucks that you have to continue working because of the big wigs that worry more about the bottom dollar than the little people they should be thinking about! I hope and pray that it will get better for you and you are able to live a retirees life without worrying about paying for medicine!
cmack
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Biologics in general can unmasked other conditions that share the same genes
Such as psoarsis and spondyloarthritis and Crohns
The genes and pathways overlap a lot
So the med doesn't cause the disease per say
That said strongly recommend you see a rheumatologist
While you may have joint pain /inflammation while on humira
There are things that can be done to fix it
A rheumatologist can help you figure that out
Spondyloarthritis (SpA)can be directly related to your gut inflammation so if your Crohns is mildly flaring your joints flare
OR
SpA can run independent of your gut
So your Crohns could have no inflammation and your joints still be a mess
Ds has JSpA which was dx while on humira
He was recently off his humira for another reason
While his Crohns was mostly calm his arthritis was significantly flared
Once he started humira again his arthritis has started to calm down
He did have to increase his humira dose and mtx when dx with JSPA
That has helped to control the arthritis
Tagging clash and Maya142
http://www.spondylitis.org/Enteropathic-Arthritis
Such as psoarsis and spondyloarthritis and Crohns
The genes and pathways overlap a lot
So the med doesn't cause the disease per say
That said strongly recommend you see a rheumatologist
While you may have joint pain /inflammation while on humira
There are things that can be done to fix it
A rheumatologist can help you figure that out
Spondyloarthritis (SpA)can be directly related to your gut inflammation so if your Crohns is mildly flaring your joints flare
OR
SpA can run independent of your gut
So your Crohns could have no inflammation and your joints still be a mess
Ds has JSpA which was dx while on humira
He was recently off his humira for another reason
While his Crohns was mostly calm his arthritis was significantly flared
Once he started humira again his arthritis has started to calm down
He did have to increase his humira dose and mtx when dx with JSPA
That has helped to control the arthritis
Tagging clash and Maya142
http://www.spondylitis.org/Enteropathic-Arthritis
