New here (Crohn) and searching for people that can give me Some advice

[Lvdrsp]

Dear everyone,

My name is Laura and i live in Belgium, so please excuse my english I have had Crohns disease (diagnosed) about five years ago, when I was 21. I had to have surgery right away to remove part of my bowel. After that, I was ok for five months and then a New inflammation occured. They started entocort and Imuran. Because of the Side effects I was dealing with, i changed to remicade (infliximab) 2 years ago. Everything was going very Well, until three months ago.

It started with me getting sick, four times the flue in two months, sacro iilitis (inflammation of my joints), psoriasis covering my entire body and head, An infection of my face, my hair stared to fall out and big bald spots occured ( one week ago diagnosed as alopecia aerata). All these things appeared one after the other. I stayed in the hospital for a week, they checked everything, no infection was found. I take a lot of medicines now (remicade, An antihistaminicum, something for the inflammation of my joints, dapsone for my skin and four different creams for my head and body).

My doctors don t really have An idea of what is going on. My question to all of you: has anyone had (Some of) the same symptoms? My doctors say all these symptoms could be a paradoxal reaction to remicade But it could also all be New auto immune diseases. They don t know and they seem to have no way to finding out for sure.

I really hope someone here has had symptoms like this and can tell me more about how they found the cause and a good treatment. Since the alopecia aerata started two weeks ago, i decided that it was time to reach out to other people that may have had the same experience. Thank you so much in advance!

 

[DJW]

Hi Laura and welcome.

I'm sorry I don't have any answers.
I hope this gets sorted out quickly.

Sending you my support.

 

[Lady Organic]

Bonjour Laura!

I am sorry about your current struggles. I know psoriasis can be a possible side effect of remicade. But I know nothing more than that on the subject and never used Remicade. Consider posting in the forum in treatment part of the forum as well to ask the Remicade community.

As for Alopecia Areata, I can share you the fallowing link, it is a study using Essential Oils (aromatherapy) on the scalp, with interesting results:

''Randomized Trial of Aromatherapy : Successful Treatment for Alopecia Areata'' :

http://archderm.jamanetwork.com/article.aspx?articleid=189618

I have also watched a nutrition/medical show about it and the diet team indicated a well-balanced diet may help. They showed an interesting case who had improvement after eating better.

wishing you well

 

[ronroush7]

I have Crohn's Disease and psorasis. I used to be on Remicade but had to stop because of a rare side effect. I am on Stelara right now and besides the Crohn's it is supposed to help with psorasis. I can still see the ugly spots but a lot of the itching has stopped. I have the psorasis in my hair and my dermatologist has given me a tar shampoo for this. I hope the best for you.

 

[aurumjd]

Hi, I just recently went through a getting psoriasis on my elbows and then diagnosed with iritits in both eyes (inflamtion of the irises). Both are what they call extra intestinal crohn's disease symptoms. Meaning the inflammation has spread since both psoriasis and iritits are auto immune issues. I've had crohn's for 5 years. Saw my GI. Put me on entocort since interestingly I was also C-difficile positive. I have to go on a biologic to keep all the symptoms under control.

I'm sorry for your suffering. Let me know if I can be of any help.

 

[my little penguin]

Big hugs
Unfortunately you can get more than one air immune disorder especially with crohns
DS has JSpA ( kiddie version of joint inflammation in his hands knees hips heels and ankles )
Skin - sweets syndrome plus allergic dermatitis and dyshirotic ezcema
Would love to blame remicade - he was on that as well for eight months hit a lot of dermitis reactions which went away when he stopped it but other skin and joint issues showed up later with humira so.,, wasn't remicade
Also has skin issues since birth so can't even blame crohns

Good luck
Mtx is often added for joints and Ali helps with skin stuff as well when added to biologics

Tagging crohnsinct

 

[crohnsinct]

Hi there,

My daughter has had Crohns for 4 years now and she was put right away on Remicade and she had a paradoxical response and got psoriasis all over her body with her scalp, neck, ears etc being the worst. We added Methotrexate to help control the psoriasis and it helped with a lot of the psoriasis all over her body as well as some joint pain she was having. However, from the shoulders up it didn't help much.

She also has bald spots but we are attributing most of that to the psoriasis and scar tissue preventing new hair growth.

She switched her diet over to an anti inflammatory diet and that helped all her conditions a little.

She uses steroid creams for her psoriasis (two weeks on two weeks off) and in her scalp a prescription oil brand name Dermasmooth drug name fluocinolone. It helps a lot but it takes a long while to apply and makes her hair pretty oily for the next day or so. It is a very expensive drug (thousands of dollars for one bottle that doesn't even last for a month) but our insurance covers it.

We have had little luck using coconut oil on her most dry and itchy spots. The key is to keep them moisturized and not pick because new injury to the spots will activate the inflammation process and aggravate the psoriasis even more.

We considered stopping Remicade but the dermatologist said stopping only clears up about 50% of paradoxical cases and we feel he Crohn's is the bigger issue.

Good luck.

 

[Lady Organic]

Coconut oil/butter would not be not as hydrating as avocado or Karité butters, according to a reputable botanist who owns a marvelous organic raw product store here.
few years ago, in my search of natural skin moisturizers, I was using olive oil then used coconut oil on my very dry skin and lips, but when I discovered avocado and karité butters, it was a revolution for me. Ive been using these 2 (I mix them together) for 2 years now and its really a miracle solution for me. in my experience, nothing beats it.

 

[Lvdrsp]

Thank you all very much! My doctors have decided to switch from remicade to entivio or stellara. They haven't decided yet. Thank you all so much for the information and support! I really hope that the change of medication Will make a difference... Xxx

 

[ronroush7]

Thank you all very much! My doctors have decided to switch from remicade to entivio or stellara. They haven't decided yet. Thank you all so much for the information and support! I really hope that the change of medication Will make a difference... Xxx

Me too.

 

[DanaBanana]

Good luck with the new medication...the process of finding what will work for your body can feel so frustrating, especially if you're dealing with other auto-immune diseases on top of crohns. Big hugs to you! I'm relatively new to this as I was just finally diagnosed in September. On top of crohns disease I was also diagnosed with rheumatoid arthritis, learning when you have one auto-immune disease it's not uncommon to another. I tried Entocort and it didn't work and made my joint pain severe, so now I'm 5 weeks into MTX injections and predinsone. No relief yet, but remaining hopeful.
Anyhow, just really wanted to offer you hugs and vibes that your new treatment plan is successful.
Cheers

 

[ronroush7]

The dermatologist I see had a patient who was on Humira and all her hair fell out. Remicade caused s lesion in my scalp. Wish you the best.

 

[barbleeharris]

Hi I am newly diagnosed to crohn's and colitis, but have been sick for a very long time including rashes on my face, neck, shoulders, arms, legs, back, all look like sunburn. I finally flipped out at my doctors office telling them something had to be done because something was wrong as they continued to dismiss my symptoms. I'm not even on any medication yet except prednisone and seem to have similar things going on with me. My hair has been falling out for awhile now so I at least got it cut to a length my hair has never seen. I am miserable. I don't know if it is normal for me to be in pain like i am in all of the time. Another thing you said something about was your joints, well my joints and hips and all just give out on me. I hope someone has an answer to your question so maybe it could help me.
My name is Barbara and I am starting to bring up almost everything I put in my mouth. Any suggestions from anyone?

Dear everyone,

My name is Laura and i live in Belgium, so please excuse my english I have had Crohns disease (diagnosed) about five years ago, when I was 21. I had to have surgery right away to remove part of my bowel. After that, I was ok for five months and then a New inflammation occured. They started entocort and Imuran. Because of the Side effects I was dealing with, i changed to remicade (infliximab) 2 years ago. Everything was going very Well, until three months ago.

It started with me getting sick, four times the flue in two months, sacro iilitis (inflammation of my joints), psoriasis covering my entire body and head, An infection of my face, my hair stared to fall out and big bald spots occured ( one week ago diagnosed as alopecia aerata). All these things appeared one after the other. I stayed in the hospital for a week, they checked everything, no infection was found. I take a lot of medicines now (remicade, An antihistaminicum, something for the inflammation of my joints, dapsone for my skin and four different creams for my head and body).

My doctors don t really have An idea of what is going on. My question to all of you: has anyone had (Some of) the same symptoms? My doctors say all these symptoms could be a paradoxal reaction to remicade But it could also all be New auto immune diseases. They don t know and they seem to have no way to finding out for sure.

I really hope someone here has had symptoms like this and can tell me more about how they found the cause and a good treatment. Since the alopecia aerata started two weeks ago, i decided that it was time to reach out to other people that may have had the same experience. Thank you so much in advance!

 

[DanaBanana]

Hair loss is so hard to deal with. :-(

 

[Lvdrsp]

Good luck with the new medication...the process of finding what will work for your body can feel so frustrating, especially if you're dealing with other auto-immune diseases on top of crohns. Big hugs to you! I'm relatively new to this as I was just finally diagnosed in September. On top of crohns disease I was also diagnosed with rheumatoid arthritis, learning when you have one auto-immune disease it's not uncommon to another. I tried Entocort and it didn't work and made my joint pain severe, so now I'm 5 weeks into MTX injections and predinsone. No relief yet, but remaining hopeful.
Anyhow, just really wanted to offer you hugs and vibes that your new treatment plan is successful.
Cheers

I wish you all the best! I have started entocort as Well five years ago but the Side effect are . I hope you'ld find a treatment that works! Xxx

 

[Lvdrsp]

Hey Barbara. I know what you mean. The doctors acted the same way so i made it clear as Well that it can't go on like this.
I can give you Some information on what steps they took with me.
About my joints; they did a CT scan and an MRI. This way they found that I had inflammation in different joints. This was causing a lot of pain for me, especially at night. I could't sleep because it hurt that much. For this they started arcoxia, it s something that keeps the inflammation under control and it s a painkiller at the same time, so this really helps. I have been taking this for two months now and my pain is gone, i don t know yet of the inflammation as Well. They Will take New scans at the end of december.
The rash, i have had as Well, looks really exactly like sunburn. I first experienced severe psoriasis before the rash started. I still use three different crèmes everyday for this and also an antiallergicum called loratidine. The rash is better, But still not gone.
I would advice you to keep telling them they need to do something. I am still doing the same as Well.
As for the hairloss, i have lost 2/3 of my hair and i am now dealing with bald spots that i can t cover up. Only by wearing a hat. I can honestly say that i am not one to complain easily But i was ( and still am) devistated by the hair loss. Every morning and evening it is a harsh confrontation to look in the mirror. It makes feel unhappy and insecure. My advice is, don t feel like your overreacting! The doctors have to at least try to find a solution! It s easy for them to be like " that s not a big problem, just live with it" because they are not the ones that have to live it and they are not allowed to decide what you Should or Should not be able to live with. That has to be your decision. Even if they can t solve it, if we feel bad about it, they at least have to try to solve it for is!

 

[DanaBanana]

I wish you all the best! I have started entocort as Well five years ago but the Side effect are . I hope you'ld find a treatment that works! Xxx

Because my crohns is considered mild-moderate, isolated for now in my Ileum, my gi doc was confident that the Entocort would do the job to control the flare. But it didn't work...it was a 9week course and by week 8 I was feeling worse. The MTX is slow so the predinsone was prescribed to help in the interim, but frankly, I feel worse. Yesterday my gi Doc decided to switch me to MTX pills and lower the dose to 20mg. Hoping that helps ease the side effects. Blood work ordered today to see if the fever that won't quit is MTX related or something else is going on. Honestly, I feel so horrible right now..sicker than when this all began. :-( such a terrible disease. Hugs to you!

 

[ronroush7]

I hope you start feeling better soon.

 

[DanaBanana]

I hope you start feeling better soon.

Thank You Ron. Me too. ;-)

 

[barbleeharris]

I really appreciate reading others feedback into this world I've been introduced in. I have a EGD and a Colonoscopy, Monday morning, I guess to see whatever it is they have to check for additionally plus to check for cancer I am told, since it took so long for my family doctor to get me to a GI doctor. I feel sick all of the time with chills, fever, fatigue, and then I get my bouts of energy where I can do it all in a matter of hours, that is when i am happiest. I want to thank everyone who has responded to my post and others that post things that help me without even knowing it.
Now on to this prednisone I have been started on what is the dreaded stuff I want to know please be honest.
Barbara

 

[ronroush7]

Barbara, I am sorry for all you are going through. As far as the prednisone goes, it made me put on weight when I was on it. I remember once missing a dose and it made me terribly sick. Please come here to ask whatever questions you have or to vent. This is a very supportive and knowledgeable group. I hope your tests go well. Let us know if you have the opportunity.

 

[DanaBanana]

I really appreciate reading others feedback into this world I've been introduced in. I have a EGD and a Colonoscopy, Monday morning, I guess to see whatever it is they have to check for additionally plus to check for cancer I am told, since it took so long for my family doctor to get me to a GI doctor. I feel sick all of the time with chills, fever, fatigue, and then I get my bouts of energy where I can do it all in a matter of hours, that is when i am happiest. I want to thank everyone who has responded to my post and others that post things that help me without even knowing it.
Now on to this prednisone I have been started on what is the dreaded stuff I want to know please be honest.
Barbara

Hi Barbara, big hugs to you. I'm happy to hear you're getting a colonoscopy...this will reveal if there's anything going on on your guts, immediately. As in mine, if there's areas of additional concern, they will biopsy them. The results of those could take a bit. Predinsone is a steroid. It helps to reduce the inflammation inside you that your immune system response is causing. Everyone is different in how they feel and respond to these things. It's very quick acting, which is why it's prescribed often in the beginning stages of illness such as your case. Honestly, I've been taking a gradually reduces dose now for 5 weeks and it's not helped me. But like Ron said, it can make you very sick if you just stop, which is why one must stay the course of it until weaned off. Don't be afraid to ask questions when you see your drs. I now write things down as I think of them, to bring with me to my appointments otherwise I'll forget.
I'll be thinking of you and please keep us updated. We all have been in this stage to various degrees-feeling sick, scared, alone, unsure, and overwhelmed. We are all here for you. Xo