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Amandakmk

Amandakmk

Joined
Jan 30, 2020
Messages
39
I have always had issues with my bowels since I had pancreatitis 11 years ago, but I just dealt with it . In 2018 I started having joint pain all over , running random fevers in the evening (feeling like I had the flu) but to wake up the next morning perfectly fine . It takes me a while to get my body moving . In July 2019 I started having stomach pain and went to my Doc , they sent me to the er where I had severe sepsis and obstruction. My blood pressure plummeted and I was hospitalized for 3 days until they put me on prednisone. My Doc said I have a 15 cm spot that stays inflamed no matter how much prednisone I take . I have to take 50.000 units vitamin D along with b-12 and iron due to me being anemic . I had gained wait previously and now can’t lose any and they diagnosed me with Crohns. Now they want me to start Humira . I am so nervous about it but I do hope it can help me lose weight and feel better where I can exercise more . No one seems to understand that I feel awful but I can’t explain it . I am 39 years and never thought I would ever feel like I’m 70
 
Hello Amanda and welcome.I'm sorry you have to be here of course, but you've come to the right place.We all understand how you're feeling and you'll get more posts very soon from others. There will be other folk who can share with you their experience with Humira and all you're going through.I just wanted to say Hi and hope you begin to feel better soon.
 
Hugs
Ds was dx at 7
Now is 16
He was humira for over 5 years
Worked like a charm for his arthritis and crohns
Once they wean you off steroids the weight should drop
It’s takes a while for humira to be effective though
3-4 months
So I would expect steriods until humira kicks in fully
Then slow wean from steriods after that

good luck
Ds is now on Stelara and methotrexate
 
Thank you so much , this is all new to me and I’m just struggling with more joint pain than the actual issues of crohns . I thank you for the feed back and glad to hear that so many have used Humira
 
Yea mine is just whenever it feels like , doesn’t always come along with my crohns flares . It’s horrible to say the least .
 
Question, the 15 cm of your intestine remained inflamed even while on prednisone or once you stopped taking it? I am wondering how good are steroids on relieving information? I know that doctors don’t want to keep patients on steroids for long but wondering if they actually work.

I have not been diagnosed but I also have really bad joint pain in my hands. My doctors and GI specialist don’t know if it’s a symptom of an STI or actual crohns. I am just waiting.
 
Hello and welcome to the forum.Why not tell us how you come to be here.? You'll get lots of support and advice should you need it and your story might be of help to others .I hope today is a good day for you.
 
Landon Hill said:
Question, the 15 cm of your intestine remained inflamed even while on prednisone or once you stopped taking it? I am wondering how good are steroids on relieving information? I know that doctors don’t want to keep patients on steroids for long but wondering if they actually work.

I have not been diagnosed but I also have really bad joint pain in my hands. My doctors and GI specialist don’t know if it’s a symptom of an STI or actual crohns. I am just waiting.
Click to expand...
My symptoms improved on steroids however that 15cm spot remained inflamed even while on it for 8 weeks . Now I’m on Humira and have to have another colonoscopy to see how it’s working
 
It's all trial and error but hopefully you'll find something that does the job soon...Lots of people on the forum are on humira so maybe someone will
share their experience....hope this is a good day for you.
 
scottsma said:
It's all trial and error but hopefully you'll find something that does the job soon...Lots of people on the forum are on humira so maybe someone will
share their experience....hope this is a good day for you.
Click to expand...
I sure hope so , it’s just frustrating is all but they have added folic acid to my daily meds along with my vitamin d and b12 . I do have a little more energy so that’s a plus
 
Glad you're feeling a bit more lively.It can be very draining and stressful waiting and wondering.....I'm assuming .I'm assuming that you're young and that makes things so much harder.You need to go to Uni. or work ,go out with your friends or maybe you have a young family. But many,many people do all of those things and more while coping with IBD and it will get easier for you.One day at a time sweetheart....
 
Thank you , I have a three year old and it’s getting harder to keep up lol my two other kids are grown and help a lot . I just feel for anyone going through this . But thank you for all your kind words and encouragement
 
Anyone who has kids to look after while coping with this has my utmost respect.....I don't count myself as being seriously sick compared with a lot of people, so I'm glad I only have myself and my husband to worry about .Be kind to yourself.
 
Amandakmk said:
I have always had issues with my bowels since I had pancreatitis 11 years ago, but I just dealt with it . In 2018 I started having joint pain all over , running random fevers in the evening (feeling like I had the flu) but to wake up the next morning perfectly fine . It takes me a while to get my body moving . In July 2019 I started having stomach pain and went to my Doc , they sent me to the er where I had severe sepsis and obstruction. My blood pressure plummeted and I was hospitalized for 3 days until they put me on prednisone. My Doc said I have a 15 cm spot that stays inflamed no matter how much prednisone I take . I have to take 50.000 units vitamin D along with b-12 and iron due to me being anemic . I had gained wait previously and now can’t lose any and they diagnosed me with Crohns. Now they want me to start Humira . I am so nervous about it but I do hope it can help me lose weight and feel better where I can exercise more . No one seems to understand that I feel awful but I can’t explain it . I am 39 years and never thought I would ever feel like I’m 70
Click to expand...
Mybe ask for ENTVIO this is the only one that did anything for ,,Helped me for years now, this one is the BEST
 
Amandakmk said:
I have always had issues with my bowels since I had pancreatitis 11 years ago, but I just dealt with it . In 2018 I started having joint pain all over , running random fevers in the evening (feeling like I had the flu) but to wake up the next morning perfectly fine . It takes me a while to get my body moving . In July 2019 I started having stomach pain and went to my Doc , they sent me to the er where I had severe sepsis and obstruction. My blood pressure plummeted and I was hospitalized for 3 days until they put me on prednisone. My Doc said I have a 15 cm spot that stays inflamed no matter how much prednisone I take . I have to take 50.000 units vitamin D along with b-12 and iron due to me being anemic . I had gained wait previously and now can’t lose any and they diagnosed me with Crohns. Now they want me to start Humira . I am so nervous about it but I do hope it can help me lose weight and feel better where I can exercise more . No one seems to understand that I feel awful but I can’t explain it . I am 39 years and never thought I would ever feel like I’m 70
Click to expand...

About humira,
Hey im on humira and i promise, it couldnt be any easier than it is... i can always answer any questions anyone has about it.
 
Landon Hill said:
Question, the 15 cm of your intestine remained inflamed even while on prednisone or once you stopped taking it? I am wondering how good are steroids on relieving information? I know that doctors don’t want to keep patients on steroids for long but wondering if they actually work.

I have not been diagnosed but I also have really bad joint pain in my hands. My doctors and GI specialist don’t know if it’s a symptom of an STI or actual crohns. I am just waiting.
Click to expand...
My mom & i always keep a bottle of prednisone nearby in case of emergency flare-ups, and for that specific thing, it can be a god send....
On the other hand, extreme chronic inflammation seems to trigger like an assembly loop, and prednisone seems less and less helpful in that situation.
 
An update, the blisters on my hands and feet and now my head are psoriasis. I had an mri done and not much improvement with Humira . My pcp did some testing for lupus but sent everything to my rheumatologist, my gastro dr wants more testing done as well and is thinking that since it’s solely in one spot we may do a resection but wants to make sure lupus is not the cause of all this . I am still taking Humira at this time , but it seems I am in a flare that will not go away my eyes have inflammation now and I had to rush to my eye dr for that and still having a lot of joint pain 😕 this inflammation will not go away!!!
 
So sorry your still having trouble
Humira /remicade can cause drug induced psoriasis. In 30% of the patients it’s goes away when humira or remicade is stopped . 30% psoriasis gets worse and 30% stays the same .
Joint inflammation and psoriasis typically is psoriatic arthritis. PsA is very common unfortunately in crohns patients regardless of what meds are used .
The genes found in crohns patients overlap With those found in arthritis abd psoriasis patients

hopefully the arthritis associated with inflammatory bowel disease is dependent on crohns flaring
Then if the defective area is removed your crohns goes into remission and the arthritis stops

Ds has arthritis associated with inflammatory bowel disease but his is independent of his crohns flares
So even when his crohns is in remission his arthritis still flares on its own
 
I had just replied in your other thread in the support forum, by evocating the link between the new onset of your skin rashes and Humira.
Im so sorry for all you are going through, all those new inflammatory conditions (eye, skin, joint), and CD still not under control... after a year on Humira...
I'd really encourage you to discuss this possible hypothesis of Humira causing all these new issues with your docs ASAP.
Really hoping you find relief soon.
 
Are there any statistics on drug (Remicade or Humira) induced skin or joint inflammation? Is one better than the other?
 
https://onlinelibrary.wiley.com/doi/full/10.1111/apt.15097Managing the adverse events caused by anti-TNF therapy in inflammatory bowel disease

from the article: ''Psoriasis is a relatively common side effect of anti‐TNF therapy, with 1.5%‐5% of patients developing this manifestation.24 It is seen most commonly in females, typically 2‐6 months following initiation of therapy.25''
 
Amandakmk said:
An update, the blisters on my hands and feet and now my head are psoriasis. I had an mri done and not much improvement with Humira . My pcp did some testing for lupus but sent everything to my rheumatologist, my gastro dr wants more testing done as well and is thinking that since it’s solely in one spot we may do a resection but wants to make sure lupus is not the cause of all this . I am still taking Humira at this time , but it seems I am in a flare that will not go away my eyes have inflammation now and I had to rush to my eye dr for that and still having a lot of joint pain 😕 this inflammation will not go away!!!
Click to expand...
I am so sorry you are going through this. I hope you find relief soon. I have been on Humira for over a year. I am feeling great. However, I decided to ramp up my exercise and now my hip and knee are bothering me(degenerative arthritis and osteoporosis before Crohn's diagnosis). i am doing physical therapy exercises in a therapy pool and walking, just not as much. I didn't have "typical" Crohn's symptoms. For years sinus infections, sores in my mouth, constipation, arthritis flares, and Iritis in my eyes. I was treated for the symptoms over the years, pain relievers, prednisone, etc. Finally, diagnosed with Crohn's after a colonoscopy with ulcer in colon. I had no pain or diarrhea, so, I was shocked with a Crohns diagnosis. At the same time, I was diagnosed with H. Pylori and acid reflux. Once those were treated, I could eat anything. I was 70 when I was diagnosed, dealt with symptoms for over 20 years. I am very active and exercise daily.
 
Just wondering if it is worth asking about stelara instead of humira as it is also prescribed for psoriasis so could help in both fronts. So sorry you are going through all this.
 
Amandakmk said:
I have always had issues with my bowels since I had pancreatitis 11 years ago, but I just dealt with it . In 2018 I started having joint pain all over , running random fevers in the evening (feeling like I had the flu) but to wake up the next morning perfectly fine . It takes me a while to get my body moving . In July 2019 I started having stomach pain and went to my Doc , they sent me to the er where I had severe sepsis and obstruction. My blood pressure plummeted and I was hospitalized for 3 days until they put me on prednisone. My Doc said I have a 15 cm spot that stays inflamed no matter how much prednisone I take . I have to take 50.000 units vitamin D along with b-12 and iron due to me being anemic . I had gained wait previously and now can’t lose any and they diagnosed me with Crohns. Now they want me to start Humira . I am so nervous about it but I do hope it can help me lose weight and feel better where I can exercise more . No one seems to understand that I feel awful but I can’t explain it . I am 39 years and never thought I would ever feel like I’m 70
Click to expand...
Hello and welcome. I'm new too but I know what it feels to be treated like a little old lady, twenty years too soon. I have bowel problems, chronic lower back pain, stiff joints, night sweats, dry eyes,acid reflux and
no energy most days. I've piled on weight, have mouth ulcers and mild alopecia. I have asthma and allergies. I'm petrified of operations and hospitals due to having contracted infections and complications after anaesthetic. I am incontinent of urine as well.
Life in my fifties is not what I expected at all and the activities most people enjoy I can't do. Never mind, I keep going.
 

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