What is happening to me?

Hi!

I was diagnosed with Crohn's a year ago and I'm dealing with it thanks to various treatments (Pentasa, stereoids, Immurel and now Remicade). But since around October, massive scabs have erupted all over my head. I'm studying in England so I went to see 3 different GP's and a gastroentorologist and absolutely none of them took it seriously. It was only when I woke up looking like the Elephant Man (I couldn't open my right eye as it had blown up and I had red blotches all over my face and arms) that I decided to go home and see some real doctors. My doctor saw me immediately and gave my stereoids. The swelling went down in two days but the itchy blotches stayed. My dermatologist saw me the next day and told me I needed to rip out the scabs. The scabs were caught in the hair so out came the hair! I think it's growing back... As if that wasn't enough, my eyes went red in the space of two days and my vision became blurry. My doctor was at a loss and told he didn't know what to do (which filled me with hope ) and sent me to A&E. They sent me all through the hospital to different departments. At the end of the day, I came out of there with a huge bag of eye drops.
I was then hospitalised for a week where they did a few biopsies and nothing else!! They now have to wait for the results. How disappointing. They said it would take a while because I appear to have several things wrong with me. I have never had anythiong like this in my life! I am the first in my family that we know of to have all of this. I would greatly appreciate any help or advice as I am getting very scared which is not helping Crohn's. :sign0085:

Thank you X

Hi and welcome...sorry to hear you are having issues.

It sounds like you may be having a reaction to the remicade in that it has caused a type of psoriasis.....I have scabby bumps (over a couple years now!) since an outbreak of strep - at first pretty much my entire body was covered but it has calmed down to some patches here and there. I had biopsies done by a derm, and they came back inconclusive.....

As for your eyes - those aren't anything to mess with - uveitis is what comes to mind there.

Please check the Remicade forum here as you may find some more help there - you can search body rash (or similar) and hopefully find some posts and even pictures.

Hi!

Thank you for your prompt reply I forgot to mention that it was indeed uveitis and conjunctivitis at the same time (which is apparently rare?).
You think it's because of Remicade? Because that's what my "team" of doctors are debating: is Crohn's the instigator or is Remicade? How do you find Remicade? I hated the side effects and I fought for ages to stop it. I have to stop it now because of my skin condition and my head (remicade would make everything worse).
Does your skin condition reappear often or just once in a while?

Thank you!!

Hi Geri I would also say it is more likely the Remicade. I had to stop this due to a reaction that included red blotches all around my eyes and my arms, I also had severe arthritis in all of my joints. My bloods also started doing odd things where they were giving positive markers for lupus. I have been off the Remicade for over a year and I only get the occasion joint pain now which can be down to the crohns.

Geri18 said:

Hi!

Thank you for your prompt reply I forgot to mention that it was indeed uveitis and conjunctivitis at the same time (which is apparently rare?).
You think it's because of Remicade? Because that's what my "team" of doctors are debating: is Crohn's the instigator or is Remicade? How do you find Remicade? I hated the side effects and I fought for ages to stop it. I have to stop it now because of my skin condition and my head (remicade would make everything worse).
Does your skin condition reappear often or just once in a while?

Thank you!!

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It could be - my doctor thinks my skin issues are related to the Remicade, but so far the benefits of the infusions outweigh the inconvenience of the rash.....I have steroid creams that I use if a spot gets to ougly looking, other than that I just let them be (aside from scratching now and then!). After the rash however, my Dr did start me on pre-meds (benadryl and solumedrol/steroids) which I get just before the infusion.

I have very good results on Remicade - I went on it due to fistulas - which promptly healed!

Thank you, I feel a lot better and less panicky now
They have told me they had thought it could be Lupus but my hair is growing back so they're not sure. So as I have stopped Remicade, everything should go back to normal, right? My gastroentorologist has suggested I have Humera or something when this is over. I made the mistake of looking up the side effects on the internet...

Hopefully things should go back to how they were once the Remicade is fully out of your system. Humira is my next step which I will be discussing with my doc on Tues 03.01. I have been told the difference between the two is Remicade is 'mouse' and Humira is 'human'.......

Hi Geri and welcome! I don't have experience with Remicade, but I agree, it sounds like the culprit. I sure hope things start to clear up, since you have stopped.

Many who haven't had success with Remicade, do well with Humira. I hope this will be the case with you. You may want to bop into the Humira subforum to talk to others on this treatment. Hopefully, they can put your fear of the side effects to rest.

I must say I feel relieved after reading different threads Humira sounds much better than Remicade even though it looks like you're self-harming

Angrybird said:

Hopefully things should go back to how they were once the Remicade is fully out of your system. Humira is my next step which I will be discussing with my doc on Tues 03.01. I have been told the difference between the two is Remicade is 'mouse' and Humira is 'human'.......

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Will you let me know how it goes with your doctor? I didn't know what you meant by mouse and human so I looked it up and I almost fell out of my chair!!! When they say mouse protein, do they mean bits of mouse? I can't wait until Remicade is out! It's the devil! It's so not worth the side effects!
Thank you

Hi there and welcome! I'm so sorry you're having so much trouble. Does what you're experiencing look anything like this?

Like this

Oh Geri you poor sausage I will definitely keep you informed on how the appt goes on Tues :hug:

Hiya Geri
and welcome

You poor thing, that is truly shocking!
I had some of this due to an allergic reaction to Azathioprine (Imuran) which calmed down as soon as I stopped it.
I wish you a speedy recovery
lotsa luv
Joan xxx

Hi Joan,
It says in your signature that you take iron. Do you take tablets? Do you tolerate it? Because I have tried so many different iron tablets and they all make me ill!
Thank you

Oh Geri, bless you! The fact they couldnt figure out that was an alergic reaction to Remicade is shocking!

As for iron tablets alot of us take them. However, it's not always easy for us to process iron as tablets. You can try having injections or certain high in iron foods perhaps to help.

I only hope you get well and on meds that dont cause this horrible reaction!
:heart:

Yeah Geri, they're just bog standard multi vits and Iron from Morrisons!
I've taken them for years.
Dunno if they're doing anything tho!
xxx

That certainly wasn't what I was thinking it might be Kudos to you for willing to share those pics!
:medal1:

Geri18 said:

Hi Joan,
It says in your signature that you take iron. Do you take tablets? Do you tolerate it? Because I have tried so many different iron tablets and they all make me ill!
Thank you

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How do you feel about eating liver or liverwurst? Seriously

Even small amounts of liver will help, even a spoonful. (and this is me saying that HATING liver!) Spinach is high in iron as well..in small amounts.

Hi Geri,

what a nightmare you've had with the reaction!

Hope it clears up soon

oh and welcome xx

I HATE liver! My mum insisted we had it once a week but the concept of meat almost melting in my mouth was enough to put me off. And it made my mouth dry... What's liverwurst? I heard oysters are the highest in iron but I hate them aswell... Red meat?

Red meat, spinach, and liverwurst: http://en.wikipedia.org/wiki/Liverwurst

If you can take a spoonful of ground liver and hide it in your food??

That could work
But is it really an allergy? I mean why would it react now? I've had six remicade drips since february 2011 and I decided to skip the one scheduled in October because I was in England (my drips are done in France). Could the fact that I've stopped it done this or would it have happened anyway?
Thank you all for your messages

The reaction could still have happened anyway. I had quite a few infusions before I had the big reaction that put me in hospital, no one ever explained what made it happen.... Broccoli and bok choy are also high in iron if you like these?

There are two types of dietary iron, heme and non heme. Non heme is harder to absorb (and all vegetarian sources fall into this category) and isn't where an iron deficient Crohnie should focus. Below is a list of some heme iron dietary sources from the NIH. As you can see by the DV (daily value), for a Crohnie who is anemic that can't handle iron supplementation, liver is where it's at.

That is very helpful David! (we still dont like liver!) But, I've been grounding it up and hiding it in my bolognese sauce, and it works. I cant taste much of it that way.

Can you try that Geri?

Definitaley give that a go! I looooooove bolognese Thank you david!!!

Maybe we should have a "liver recipe megathread" and see if we can find some ways people like it. We're focusing on iron, but liver is a source of SO MANY absolutely vital minerals and vitamins that Crohnies need and are often deficient in. There's a reason is was considered such a magical part of the animal in many cultures in the past.

Oh, if iron supplements are making you sick, you MAY want to take note of the many iron fortified foods to see if they're triggering symptoms for you. Some of these include but are far from limited to: cereals, oatmeals, pastas and breads. These aren't always fortified but often are. Read packages carefully

Thank you very much, I agree about the liver thread, maybe someone has got a recipe which might be tasty!! (you never know...)
So what about my head? I have a new scab every day now... Is that part of the reaction? My doctors and everyone around me keep putting everything down to stress but I am not stressed out! This is annoying me rather than stressing me out! grrrrrrrrr

Yeah, that's not stress. My first thought was actually Pellagra but I'm nowhere near knowledgeable enough to make such an assertion and since you don't have it on your hands, probably not. Allergic reaction makes sense as folks above said. My brain usually goes to "vitamin or mineral deficiency" since you're a Crohnie.

No one has ever mentionned that it could be something as simple as a mineral deficiency... In all my blood tests results it clearly shows that I am below the averages but no doctors have ever said "if you eat so and so your so and so will go up"... How come there isn't as much research for Crohn's and such as other diseases?! this is not a rare thing! Many people have it yet there is no cure and they know nothing.

Vitamin and mineral deficiencies are a HUGE source of a variety of extraintestinal manifestations for people with Crohn's Disease. It's where my research is focused. Unfortunately for Crohnies, it's often not as simple as, "Eat this food and you'll be fine" due to triggers, malabsorption issues, and drug interactions. Sometimes high dose supplementation is needed.

Heck, plugging "vitamin B deficiency" (which is very encompassing) into Google image search wields this which showcases what vitamin and mineral deficiencies can do to the human body.

Hi Geri...:hug:

The swelling around your eye looks like cellulitis, so perhaps rather than an allergy it could be an infection. That may well account for the issue with your chest and scalp as well, although your scalp does look a bit like eczema. Hmmm your chest does look a bit like eczema as well, does it weep?

It's not to say that you can't have something like a staph infection and eczema as well.

If I were you I would be demanding they at least do skin scrapings and get referred to a dermatologist ASAP.

Good luck!

Dusty. :heart:

Hi Dusty!

My eyes are better at the moment, I had conjunctivitis and uveitis (sp?). My head weeps alot! And it smells like wet dog. But my skin doesn't, it's just incredibly dry. At the hospital, they did a biopsy of my head and my skin but the results take about 5 weeks (2 more to go!). It was my dermatologist that got me into hospital because she didn't know what to do in the end (she said this to my face which filled me with confidence)!

Thank you

By the way, HAPPY NEW YEAR!

Hey Geri,

A happy and healthy 2012 to you!

Sorry I overlooked about the biopsies in your initial post.

Not all eczema weeps and if it is eczema then the type on your scalp is more likely to do so because of the oils the scalp produces, it is also the type that affects the eyes and face. This type of eczema is also known as Seborrheic Eczema or Seborrheic Dermatitis.

Your chest rash does look like dry (Atopic) Eczema to me but I'm am far, very far actually, from an expert! :lol:

Rashes, including eczema, are a not too uncommon side effect of Remicade.

Good luck hun and I hope you get solid answers and relief very, very soon! :hug:

Dusty. xxx

Thank you I will be having a word with my various doctors soon to tell them what for (and wish them a happy new year of course )

Hugs!

Wow! You've really had a rough time. I just began taking Humira. Of course, you can't help but read and/or listen to all the potential bad side effects. I expected the worse and experienced none of the bad side effects. I made sure I took my first injections on a Saturday afternoon so I could have Sunday to recover if the Humira made me tired like it has for others; but it didn't. The injections weren't as bad as getting a Tetanus injection. This isn't to say you won't have any side effects but hopefully reading about them won't keep you from trying Humira if that's an option for you. I wish you the best. Happy New Year.

Hi Geri and happy new year!! How are things? As promised I am giving an update on my appt today. We are going to give the Azathioprine another go - I am thrilled!! Out of all the meds I have been on this worked the best for the longest. Just need to keep my fingers crossed that it leaves my white cell count alone this time. Humira will only come into play if I flare up again of the Aza causes an issue.

Hello! Happy New Year to you too!!

Well I ended the year as I started it: being ill... But two nights ago was the worst night of my life. But my gastroentorologist wants to do Remicade again. Is he nuts?! He's waiting for the dermatologist to say if it's okay. What about me? Don't I have a say in this?! I don't want Remicade! I don't want any of it not after what it's done to me! I'd rather have the Crohn's thank you very much! It's the only thing that's not acting up right now!
Anyway, enough about me! I'm really happy for you!! How is Azathioprine taken? Is it tablets or an infusion? Did you stop it at one point and now you're taking it again? Do you take anything with it like stereoids? Did you get any severe side effects? What happened with your white cell count? Sorry, that's a lot of questions...

You DO have a say in this! However, if they stuff you full of antihisamines first, you just might be ok. I think however they might want to consider Humira???

I really hope they get you sorted! What you've been through is awful!
:hug:

Hi! What are antihisamines? My gastro did say that the next step would be Humira which I'm just getting my head around (side effects include dying!). But he did also say that if that doesn't work I'm basically screwed... But surely there's other treatment available? Is Humira the last resort apart from surgery? I keep reading about 6MP. What's that?
Either way I'm waiting for everything to go back to normal i.e. my hair to grow back and the scabs to go away! Then we'll see about leaving the house without a hat and sunglasses on!

Hi Geri,
Sorry to hear/read of the problems you are having. Hopefully you are getting some good information from this forum. I have found it to be a real blessing for me.

Couple of items that address several questions you have had --

1) Azathioprine comes in pill form. I take 2 of them with my dinner each evening, and that's it. Easy to do, but the really important thing is whether or not they will help you. They are a step down on the medication ladder -- i.e., they are less potent than Remicade, with fewer side effects. That's good and bad -- good because you have a better chance to take them without some of the side effects you have experienced, but not so good if the Azathioprine isn't strong enough to help you. It sounds like you will be moving off of the Remicade, and fortunately there are a number of other medicines that are available for you.

2) Iron -- being a Crohnie, I'm anemic, and I take vitamin B12 and an iron supplement. If your red blood cell counts are low, both of these areas should be tested. For my iron, I take 90mg of Slow FE, which is designed to release in my system over time, and therefore is theoretically more gentle. I guess it works, I've never had any problems with it.

Hang in there -- better days are coming!

Hello,

This forum is a life saver! To think I stumbled on it by accident when i mispelled a word in Google!

Maybe I'll ask my doctors if I can try Azathioprine. It can't be any worse than Remicade (it's the Devil!!!) and it might be a good idea to have a mild dose at the moment because the pain isn't as huge as it was... Hmmmmm

I don't tolerate iron supplements. I say that, I have tried three. But they have all made me extremely ill. Do you tolerate yours? I know that you have to be really patient with iron as you only get results in 3 months time!

Thank you

Yes, I'm fine with the Slow FE, apparently because it slowly releases into my system. But I also think that part of my problem was a vitamin B12 deficiency (very typical for Crohn's) because a deficiency in B12 causes anemia all by itself. One suggestion would be to try a B12 supplement by itself without the iron, and see if that works for you. Most people who are B12 deficient get shots. but you can also take large doses of B12 orally -- I take 1500mg and it's been working fine.

Hi Geri, as Tom says the Aza is taken in tablet form and usually come in 25mg tablets. I was on this a few years ago and for over 12 months I did really well, it then starting lowering my white cell count to dangerous levels, this then left me nearly without any way to fight infections hence why it had to be stopped. The hope is that as it was so long ago that I was on it that it should work again, also I may not need to be on as high a dose - last time I was on 200mg which is the highest they could take me. It sucks to hear that you have had a bad time You defintely have a say in your treatment, they cannot force you to continue on a med that yon have had a reaction to! perhaps it is worth mentioning the Aza to your doc?

Geri, do you by chance enjoy liver or even liverwurst? It is THE best source of dietary iron (and a whole host of other vitamins and minerals Crohnies need) and what I recommend those who can't handle supplemental iron try.

To those of you taking high dose vitamin B12, we recently found that the University of Maryland Medical Center is recommending to take a complex B vitamin as well as taking any one of the B vitamins by itself can create an imbalance.

Azathioprine here only comes in 50mg tablets. Dosage is normally calculated at 2-2.5mg per kilo of body weight. I recently read an older study comparing Azathioprine, Imuran and 6MP and it would seem that the brand Imuran has better bioavailabillity than the generic Azathioprine does so that may be something to consider too.

Angrybird, I would ask for a TPMT blood test to be done if you decide to go on Azathioprine again. It wouldn't have been available when you were last on it and it may give some indication as to whether you are likely to run into complications with it. Also, Allopurinol can be used with Imuran to enhance the effects of the drug without having to up the dose. Might be a thought too if you run into effcetiveness issues again.

Dusty. xxx

Hi Geri,

Try liquid Iron. It's available at all health food stores and is more easily tolerated in the bowel department. I was diagnosed with Crohns just over 1 year ago and have been on the liquid iron for quite some time.

Good luck!
B.

Thanks Dusty!! Have made a note of this, I am due to see the nurse in a couple of weeks to get this started.

Wow that's a lot of options! Thank you very much I have a lot to tell/ask my doctors!!
Would it be suicidal to go on Remicade again? Or should I forget about it and move onto Humira or Aza?

Hi David, I hate liver but I've never tried liverwurst. It looks alright from the pictures on Google I'll give it a go. Can you see results quicker if you eat food containing iron? Because (as everyone keeps telling me) iron supplements take months to work...

Hi Brenda, I might try liquid iron aswell. What does it taste like?

Geri18 said:

Hi David, I hate liver but I've never tried liverwurst. It looks alright from the pictures on Google I'll give it a go. Can you see results quicker if you eat food containing iron? Because (as everyone keeps telling me) iron supplements take months to work...

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I personally think liverwurst is delicious As for seeing results quicker, there are so many variables involved that it's impossible to say. Be careful with it and start in low "doses" to make sure it's not a trigger food for you.