# Extreme itching but NO rash - what the ?



## rkoll327

Hey everyone,

So I am new to the forum, my name is Rachel and I am 22 I was diagnosed 4 years ago when I first got to college. So you will have to bear with me during this long story but I want to give as much information as possible. When I was first diagnosed they started me on Prednisone and Pentasa right away. The Pentasa was making my hair fall out pretty badly, so after about 6 months I told my GI I needed off ASAP. Next up was Remicade. This was actually doing pretty well for me, but I decided to switch to Humira because it was more convenient for me to do the shots myself. I am originally from Pittsburgh but I was at school in Philadelphia and coordinating hospital time for infusions was just too hard. So from the beginning of my diagnosis I was going to the bathroom TOO much. By the time I was on Remicade transitioning into Humira I wasn't going enough. I also tried Miralax simultaneously which seemed to help keep me regular but that didn't last too long. So now I am doing the Humira, and I really can't complain because I only have the occasional flare up. After moving back to Pittsburgh and getting a new job I have been having more flare ups, but I am going to attribute that to stress/changes and hope it goes away soon.

But, there is this mysterious itching that I have that none of my doctors can figure out. I have seen two GI doctors, my GP, and two dermatologists. I have an appointment with an allergist at the end of July. It is usually always in the morning, especially after I shower, especially especially after I shave my legs: I have this EXTREME itching on my legs and sometimes arms. The strangest part is there is no rash, no bumps or anything. I try not to touch it which usually helps it go away in about 20 minutes. There was a period where it would even wake me up in the middle of the night. I have noticed that heat seems to make it worse, but it isn't the only cause. I have tried everything from cutting out dairy and gluten, to changing laundry detergents, soaps, and lotions. It's happened every place I have traveled to, so I am thinking it isn't environmental. It comes and goes in waves, and there is absolutely no consistency to it. The dermatologist prescribed me some steroidal lotions but they didn't really do anything so I stopped using them. I was also taking Hydroxizine at night and Allegra twice a day to lower my histamines but that didn't seem to have much effect.

I really hope I am not the only person who is going through this and someone else has some insight. I have no idea if it is related to my Crohn's or not, but I feel like I am out of options!:sign0085:


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## EthanPSU

Hey Rachel...You're stories kinda funny because i'm from the philly area but went to college in the pittsburgh area. Kinda opposite. It does suck at our age and the random itching ontop of it must not help..

But the only insight I have on that issue is prob, I've never experienced it but do you think it could be totally unrelated to crohns? I'm really not sure, but I remember this one time I had bad poison ivy and it iched like no tommorrow, I would go into the shower and turn the water like really really hot and put it on the spot and it would like burn but feel so good and stop the itching.

Anyways, prob didn't help but I tried. And welcome to the forums!


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## Trysha

You are not alone with this.
I have been plagued with similar itching and take benadryl at night when it is really bad and a non drowsy loratidine in the daytime , supposed to be a 24hr prep but it does not last.
The worst place is the soles of my feet especially at night in bed, I have to leave them outside the covers. The dermatologist said that I may have to keep doing that.
I have been using an excellent over the counter moisturiser cream she recommended
and that has seemed to help.
I bought an ice sheet, (12ins x12ins, probably for cooling picnic food)_ and it is already filled with fluid that freezes. The large sqare is sub divided into inch square cubes -----I have found this to help a lot at night.
I think lots of moisturiser is helping.
Feel better soon
Hugs and best wishes
Trysha


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## rkoll327

Trysha said:


> You are not alone with this.
> I have been plagued with similar itching and take benadryl at night when it is really bad and a non drowsy loratidine in the daytime , supposed to be a 24hr prep but it does not last.
> The worst place is the soles of my feet especially at night in bed, I have to leave them outside the covers. The dermatologist said that I may have to keep doing that.
> I have been using an excellent over the counter moisturiser cream she recommended
> and that has seemed to help.
> I bought an ice sheet, (12ins x12ins, probably for cooling picnic food)_ and it is already filled with fluid that freezes. The large sqare is sub divided into inch square cubes -----I have found this to help a lot at night.
> I think lots of moisturiser is helping.
> Feel better soon
> Hugs and best wishes
> Trysha


Trysha, thank god I am not alone! I will need to try the ice pack thing next time this happens. Its so annoying because it's usually when I get up in the morning and am getting ready for work. I'll have to find a way to strap them to my legs haha. I have tried so many lotions and creams but nothing seems to really help, some make it worse. What are you using? Maybe I can give it a try. This is so frustrating, it's more painful than itchy. I am glad I'm not alone.


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## rkoll327

EthanPSU said:


> Hey Rachel...You're stories kinda funny because i'm from the philly area but went to college in the pittsburgh area. Kinda opposite. It does suck at our age and the random itching ontop of it must not help..
> 
> But the only insight I have on that issue is prob, I've never experienced it but do you think it could be totally unrelated to crohns? I'm really not sure, but I remember this one time I had bad poison ivy and it iched like no tommorrow, I would go into the shower and turn the water like really really hot and put it on the spot and it would like burn but feel so good and stop the itching.
> 
> Anyways, prob didn't help but I tried. And welcome to the forums!


Ethan that is so funny! And yeah it is definitely tough at our age dealing with all this nonsense. I have had this itching problem for about 2-3 years now ( :yfaint: ) so I am thinking its not something I contracted like poison ivy or what not. And strange because the hot water makes it so much worse for me.


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## EthanPSU

I figured it was something that u've had and not something short term. But damn, when I did that hot water thing it was like the best feeling in the world hah


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## Trysha

Hi RK,
The moisturising cream is called Lipikar and made by La Roche-posay.
I get it from my drug store. ,in Ontario Canada.,and it costs about $25..Can.for 200ml.
A tube lasts a long time.
The ice sheets came from Canadian Tire shop and were a gift from a friend when I was going crazy in hospital with THE itch from hell!!
The nurses kindly put them in the freezer for me.
Sometimes lately I find an over the counter cortisone cream helps, but I don't want to have too much cortisone---already have enough with the crohn's ---
Sometimes I find a really cold face cloth (run cold tapwater)put on feet and legs helps in the middle of the night.
I have had the itch for almost three years now, not quite so bad at times.
Hope this is helpful to you.
Hugs
Trysha


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## pinklights

this is very strange. I have Crohns as well and have been dealing with a mysterious (mostly night) itching on my calves. No rash, bumps, etc. Nothing. Just this intense itching that has at times woken me up. I never really made the connection between Crohns and this in my head. Maybe it is related. I have been using Aveeno lotion after my showers. This helps to a point. Cortizone cream has helped as well. Just mentioning it is now making me itch!


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## STLGirl

I too have had an itching problem..........feet, palms, legs.  I noticed it gets worse also after a shower (moist heat), which is typical with skin problems.  I also noticed that it gets worse the closer I get to my next Remicade infusion.  My Dr told me it is all related to Crohn's. He also said the itching usually goes hand in hand with joint/muscle pain. Remicade is made to help with these kind of issues. So we have upped my Remicade from every 8 weeks to every 7 weeks.  So I'll see if that helps.  

But I guess this is just another thing we have to deal with having Crohn's......eeekkk!!


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## David

For those of you with the itching on your extremities, sometimes peripheral neuropathy can lead to a feeling of itchiness.  This would also correlate with a lack of rash.  Peripheral neuropathy is unfortunately somewhat common in people with Crohn's Disease.  The most common cause is vitamin B12 deficiency.  Thereafter, the following deficiencies can lead to it as well:

Vitamin B1 / Thiamine Deficiency 
Vitamin B3 / Niacin Deficiency
Vitamin B6 / Pyridoxine Deficiency (or too much)
Vitamin E Deficiency 

As Crohn's Disease is characterized by malabsorption which leads to malnutrition and deficiencies, deficiency is the above is much more common in people with CD than the general population.

In addition, if you click the peripheral neuropathy link in this post, additional potential causes are listed.  If any of you haven't been tested for these deficiencies, I would definitely discuss the idea with your doctor.  Go prepared by printing out the quality references in the peripheral neuropathy link and highlighting pertinent information and presenting it in a supportive manner.


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## rkoll327

David said:


> For those of you with the itching on your extremities, sometimes peripheral neuropathy can lead to a feeling of itchiness.  This would also correlate with a lack of rash.  Peripheral neuropathy is unfortunately somewhat common in people with Crohn's Disease.  The most common cause is vitamin B12 deficiency.  Thereafter, the following deficiencies can lead to it as well:
> 
> Vitamin B1 / Thiamine Deficiency
> Vitamin B3 / Niacin Deficiency
> Vitamin B6 / Pyridoxine Deficiency (or too much)
> Vitamin E Deficiency
> 
> As Crohn's Disease is characterized by malabsorption which leads to malnutrition and deficiencies, deficiency is the above is much more common in people with CD than the general population.
> 
> In addition, if you click the peripheral neuropathy link in this post, additional potential causes are listed.  If any of you haven't been tested for these deficiencies, I would definitely discuss the idea with your doctor.  Go prepared by printing out the quality references in the peripheral neuropathy link and highlighting pertinent information and presenting it in a supportive manner.



David, finally some new insight! I haven't heard of PN before. Thank you SO much for this information. I have an allergist appointment on Friday morning, then an appointment with my GI after that. I will make it a point to bring this up with him and see if he has any ideas.:thumleft:


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## swing9cats

Rachel,  Your story is almost IDENTICAL to mine.  I am from Pittsburgh originally and was diagnosed when I was 20.  Although I was diagnosed at 20...I had mysterious itching since I was a kid.  It struck most after I would take a shower.  No rash.  If I shaved my legs it would be SO intense...so I stopped shaving until the itching subsided.  It would usually last from a few days to a few weeks and would disappear.  It came and went throughout my life.  It came when I was in puberty.  It came when I was on a birth control drug and lastly came when I was taking Imuran and throughout my flares.  I enjoy getting pedicures, but when I am having an "itching flare", I can't as they scrub my legs and the itching is HORRIBLE.  I've been to my GI dr's, 3 dermatologists, endocrinologist, OBGYN and NO ONE can figure it out-I think at one point someone said it was in my head which made me want to punch them.  Lastly, I see an amazing group of GI specialists and they thought it was from AutoImmune hepatitis.  It usually accompanies people with Crohns disease (and especially women).  It is hard to detect bc it comes and goes.  So this is my conclusion.  I have an autoimmune problem.  When my body is over loaded on fats, chemicals, hormones, stress etc...my liver gets inflamed and then triggers itching bc it doesnt work properly during a flare.  When this happens I now eliminate ALL drugs from my system to detox(even the ones I am told to take for 1-2 weeks-EXCEPT PREDNISONE), I eliminate any and ALL fatty foods from my diet and don't drink soda or alcohol.  I also recently stopped by my vitamin shoppe to get a liver detox herb.  I keep corticosteroid cream close by and I do not fully shower (just wash my hair in the sink and kindof take a mexican bath with a wash rag) during the flares.  If I really need to shave, I bite the bullet and take a big dose of oxycontin and take as fast as a shower I can. I also find that if I'm on prednisone, as I am getting off of it, the itching comes as if my body's immune system is bouncing back before it calms down to normalcy.  Additionally, if it isn't the liver, it could be the layer of fat under the skin getting inflamed.  Overall my conclusion is it is part of the autoimmune condition.  Its an itching flare.  There isn't much you can do until it goes away, and you soothe your immune system.  I have had many bouts of itching flares with 0 rash and I've given up on asking my docs now, as all of my bloodwork shows normal except for my inflammatory markers from Crohns.  Taking benadryl usually doesn't help much...it helps slightly...but I find that oxycontin helps the best and I really detox my body during this time.  I don't even consider touching my legs with lotions or any hint of water as this is what makes it crawl.  Scratching makes it more intense and spread.  Spending time in the sun can also bring on the itching. I don't know why.  Sun burn makes it itch, so I load up on sun block if I need to be out in the sun (I love to swim).  If I need a tan I spray tan.  I have laser hair removal-and if you can afford it I'd recommend it.  So I know the triggers, so I do my best to avoid them.  I also know that Azathioprine somehow triggers the itching even though my doctors refute this.  I know it because when I am on it I itch.  When I am off of it I dont.  So I don't care what they say-its true (to me).  The itching (while not in the books as part of crohns), I believe is an autoimmune response related to Crohns or other autoimmune disease or is an autoimmune disease unto itself.  The only cures that help are Prednisone (an anti-inflammatory) for short term.  There are no known long term drugs to help but the problem (for me) is not long term and comes and goes.  Also moving around and walking helps to make the itching subside.


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## Charuz

About 7 years ago I started to feel itching around my face, down my neck and on my back. At first there was no rash, but than I developed a very light one. First derm. told me I'm a middle aged woman and I'm having hives; next one told me I have poison Ivy; third one told me shingles and the fourth said let's see what we have here. He took a biopsy which came back negative for every single thing, including signs of remicade. Not sure what happened next, but rash went into a cycle of breakouts which covered my arms, my back, my breasts, and my neck. They would start just as an itch, than a small bump would appear and than it wold become a blister. But what is strange that it is obvious to be something under the skin and not above it. At times the rash was so intense that layers of skin were gone, especially on my neck. The doctor decided I was allergic to the sun. I spent over a year staying out of my beloved sun as much as possible, but that didn't work either. I went to a third specialist who said it was the Chron's. She said that as an autoimmune disease it can manifest itself in various ways--how many of us have reactive arthritis or similar immune issues? She put me on immune suppressant drugs which were really intense, but the knocked out the rash. They also sent me into remission that lasted quite a few years. When my Chron's started to flair up again so did the rash. Now I used it as an indicator that my there is something happening that I may not be aware of yet. Not sure if anyone else had gone through this, if so, I would love to read about it


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## swing9cats

Charuz, have they ever mentioned Erythema Nodosum?  Its characterized by an itchy and painful bump and comes from autoimmune diseases.  Maybe  pyoderma gangrenosum?


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## Charuz

I switched doctors last year and the new one does think it's Erythema. The thing that worked best on it was 100mm of depo-medrol. But the doctor doesn't like the idea of steroids, so I need to push for it a bit more. It also gives the remicade I'm on a bit of a boost.


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## rkoll327

swing9cats said:


> Rachel,  Your story is almost IDENTICAL to mine.  I am from Pittsburgh originally and was diagnosed when I was 20.  Although I was diagnosed at 20...I had mysterious itching since I was a kid.  It struck most after I would take a shower.  No rash.  If I shaved my legs it would be SO intense...so I stopped shaving until the itching subsided.  It would usually last from a few days to a few weeks and would disappear.  It came and went throughout my life.  It came when I was in puberty.  It came when I was on a birth control drug and lastly came when I was taking Imuran and throughout my flares.  I enjoy getting pedicures, but when I am having an "itching flare", I can't as they scrub my legs and the itching is HORRIBLE.  I've been to my GI dr's, 3 dermatologists, endocrinologist, OBGYN and NO ONE can figure it out-I think at one point someone said it was in my head which made me want to punch them.  Lastly, I see an amazing group of GI specialists and they thought it was from AutoImmune hepatitis.  It usually accompanies people with Crohns disease (and especially women).  It is hard to detect bc it comes and goes.  So this is my conclusion.  I have an autoimmune problem.  When my body is over loaded on fats, chemicals, hormones, stress etc...my liver gets inflamed and then triggers itching bc it doesnt work properly during a flare.  When this happens I now eliminate ALL drugs from my system to detox(even the ones I am told to take for 1-2 weeks-EXCEPT PREDNISONE), I eliminate any and ALL fatty foods from my diet and don't drink soda or alcohol.  I also recently stopped by my vitamin shoppe to get a liver detox herb.  I keep corticosteroid cream close by and I do not fully shower (just wash my hair in the sink and kindof take a mexican bath with a wash rag) during the flares.  If I really need to shave, I bite the bullet and take a big dose of oxycontin and take as fast as a shower I can. I also find that if I'm on prednisone, as I am getting off of it, the itching comes as if my body's immune system is bouncing back before it calms down to normalcy.  Additionally, if it isn't the liver, it could be the layer of fat under the skin getting inflamed.  Overall my conclusion is it is part of the autoimmune condition.  Its an itching flare.  There isn't much you can do until it goes away, and you soothe your immune system.  I have had many bouts of itching flares with 0 rash and I've given up on asking my docs now, as all of my bloodwork shows normal except for my inflammatory markers from Crohns.  Taking benadryl usually doesn't help much...it helps slightly...but I find that oxycontin helps the best and I really detox my body during this time.  I don't even consider touching my legs with lotions or any hint of water as this is what makes it crawl.  Scratching makes it more intense and spread.  Spending time in the sun can also bring on the itching. I don't know why.  Sun burn makes it itch, so I load up on sun block if I need to be out in the sun (I love to swim).  If I need a tan I spray tan.  I have laser hair removal-and if you can afford it I'd recommend it.  So I know the triggers, so I do my best to avoid them.  I also know that Azathioprine somehow triggers the itching even though my doctors refute this.  I know it because when I am on it I itch.  When I am off of it I dont.  So I don't care what they say-its true (to me).  The itching (while not in the books as part of crohns), I believe is an autoimmune response related to Crohns or other autoimmune disease or is an autoimmune disease unto itself.  The only cures that help are Prednisone (an anti-inflammatory) for short term.  There are no known long term drugs to help but the problem (for me) is not long term and comes and goes.  Also moving around and walking helps to make the itching subside.



WHAT a relief to see that someone else is going through exactly what I am. You're right, our stories are almost identical. I just got my results back from the allergist yesterday, and I paid $600 for them to tell me I am allergic to three types of grass :ymad:. As for the actual problem I went there for (this mysterious itching), the doctor just left me with "I have no idea what this could be, it must be your Crohn's". If I had a dime for every time a doctor blamed something on my Crohns :ybatty:... But I do have to agree with your conclusion. It must just be an autoimmune thing. My bloodwork has all come back perfect as well, and because doc's think that is the end all be all when it comes to a diagnosis, I have also had a few suggest that it was 'in my head'. The nerve! I am definitely going to try the 'detox' things when I start going through a flare up of this. I have also been considering trying the laser hair removal just because shaving can be unbearable at times. Keep me posted on the liver detox that you purchased, that would be something I would also be wiling to try. Have you visited a neurologist? That seems to be the only doctor between the two of us we haven't seen.


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## swing9cats

rkoll327 said:


> WHAT a relief to see that someone else is going through exactly what I am. You're right, our stories are almost identical. I just got my results back from the allergist yesterday, and I paid $600 for them to tell me I am allergic to three types of grass :ymad:. As for the actual problem I went there for (this mysterious itching), the doctor just left me with "I have no idea what this could be, it must be your Crohn's". If I had a dime for every time a doctor blamed something on my Crohns :ybatty:... But I do have to agree with your conclusion. It must just be an autoimmune thing. My bloodwork has all come back perfect as well, and because doc's think that is the end all be all when it comes to a diagnosis, I have also had a few suggest that it was 'in my head'. The nerve! I am definitely going to try the 'detox' things when I start going through a flare up of this. I have also been considering trying the laser hair removal just because shaving can be unbearable at times. Keep me posted on the liver detox that you purchased, that would be something I would also be wiling to try. Have you visited a neurologist? That seems to be the only doctor between the two of us we haven't seen.



Rachel,  I've also heard clearing your body of gluten, lactose and sugar helps too.  I just really try to eat healthy and keep toxins out.  I'm just getting over an itching flare...and this method is VERY helpful for me.  Its not immediate but it clears up in about a few days as oppose to a few weeks.  Let me know if you have results if not than my theory is debunked.  I just bought a book describing the SCD diet and planning to eat according to it as I've been in a really serious flare this year.  I find that when I start eating in ways I shouldn't, and have lots of stress the itching creeps up and before I know it becomes intense..like a little mountain.  It builds up and it peaks and then comes back down.  Weird.  One day we might have an answer, until then....


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## swing9cats

Final post about this.  I think I've got it down to what is is, how to stop it and how to avoid it.  Rachel, are you on Imuran, Azathioprine or 6mp?  Other immune suppresants?  In any case, I noticed if I am on these drugs and out in the sun, go tanning or swimming etc...a day or two later I will get the itching on my legs.  Its something with the mix of immune suppressants and sun exposure.  It doesn't necessarily have to be on your legs.  Detoxing after this will help it go away and avoid hot showers and shaving.  I've told my GI as all of my blood work just came back negative (again).  I'll keep monitoring and will check my theory as I'll be at the pool this weekend.


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## David

swingcats, sun exposure is known to cause problems with those medications.  Did your doctor not warn you?


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## swing9cats

Thanks David.  No, and every time I bring it up to the GI's they say its not the Imuran causing the itching.  I've had 4 GI's tell me this.  Never a warning about the sun or what happens post exposure. Even though its a clear side effect.  I've also had this itching since I was a kid-same thing.  Its inflammatory and the drug and sun mixture bring it out.


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## Blazing saddle

Hi I am new to this forum and haven't been diagnosed (yet) I do have symptoms constant diarrhea fissures joint pain so just waiting to find out whats going on. Your post really interested me because the latest symptom was crazy itching legs feet and arms especially at night. The soles of my feet were driving me insane with the itching and being ticklish didn't help ! At the same time as the itching all my finger joints became stiff and swollen which has never happened before either and my diarrhea was worse than ever even waking me at night. I know I haven't been diagnosed with crohns but these weird symptoms seem similar to some of these posts. Strangely things seem to have settled a bit now but it is good to know others having similar experiences and I am not completely losing my mind ! Xxx


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## EthanPSU

So since starting Humira I have been getting random itches everywhere as well, with no rash like you explained. It's weird


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## rkoll327

swing9cats said:


> Final post about this.  I think I've got it down to what is is, how to stop it and how to avoid it.  Rachel, are you on Imuran, Azathioprine or 6mp?  Other immune suppresants?  In any case, I noticed if I am on these drugs and out in the sun, go tanning or swimming etc...a day or two later I will get the itching on my legs.  Its something with the mix of immune suppressants and sun exposure.  It doesn't necessarily have to be on your legs.  Detoxing after this will help it go away and avoid hot showers and shaving.  I've told my GI as all of my blood work just came back negative (again).  I'll keep monitoring and will check my theory as I'll be at the pool this weekend.


I am currently on Humira (Adalimumab - 40mg subcutaneous injection every other week). But other than that I don't take anything regularly besides my birth control. The funny thing is I have no problems when it comes to sun exposure. My GI did warn me these types of medications will make me sensitive to the sun, but I was just at the beach for a week and didn't itch once! So frustrating that it comes and goes in waves. Thankfully right now I am not experiencing any itching. I will keep you posted though. We have to figure it out eventually!


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## rkoll327

EthanPSU said:


> So since starting Humira I have been getting random itches everywhere as well, with no rash like you explained. It's weird


Oh no! Not you too :shifty-t:Has it just been on your legs/arms as well? I have just tried to come to the conclusion it is a side effect of having an auto immune disorder or something from the medication that is taken for it.


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## njd619

Hi everyone!  I have been on Remicade for a few months now, and after the most recent treatment I've had the same itchy feeling you are all describing!! It's awlful!  Remicade has been working wonders for me and I really don't want to stop it, but I'm nervous that after the next treatment it will get even worse.  Hot showers seem to make it worse.  Eucerin calming cream helps a little.  My dermatologist prescribed a cortisone cream and some anti-itch pills to take before bed.  They seem to be a temporary quick fix, but the itching keeps coming back.  Does anyone have any new ideas on this??  Does the itching seem to subside as treatments continue or does it come back even worse!  I can deal with it if it stays at the status quo (I think) but I'm so nervous the next treatment will make it worse.  HELP ME!


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## Cbail

I have experienced the exact same thing. Funny that it didn't start until I got on Remicade. My doctor also tried to say that it was related to my Crohn's and not the medication...ok.  So long story short, I did some research and believe it was a common yeast overgrowth which occurs in those who take immunosuppressants or -modulators. As soon as I got off Remicade it mostly went away. I sometimes still experience it at night if I sweat a lot. Topical zinc pyrithione does the trick. Hope you get better.


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## EthanPSU

rkoll327 said:


> Oh no! Not you too :shifty-t:Has it just been on your legs/arms as well? I have just tried to come to the conclusion it is a side effect of having an auto immune disorder or something from the medication that is taken for it.


Mainly legs, not so much on the arms. But it's wierd, just started out of the blue


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## Thermo

Most times its due to crohns but if you are taking Humira watch for allergic reactions. I have gotten increased and intense allergies while on Humira it was easily cured by taking flonase but just a word of advice if its linked to starting Humira make sure you get it looked at, you will get this with Humira sometimes.


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## cmichael

Hi there. I too have itching issues. I've had Chrons for 37 years, mostly a mild case and over the past couple of years have noticed more itching until about 2 years ago and since it's gotten worse. My top of the line dermotogist says its an allergy but they don't know to what, so he said use different steroid creams and go with what works. I also take hydroxixine at night (25mg) which helps me sleep. I've been woke as well from itching so you are not alone. I have external tags on my anus (they are like hemmies but not exactly I am told) and they itch too, which makes my but cheeks raw and now seeping mucus. They are getting me closer to going on Humara which I hope eliminates the leak.
Although my symptoms suck I feel truly fortunate that it is not worse. Hand in there. 
Cmichael




rkoll327 said:


> Hey everyone,
> 
> So I am new to the forum, my name is Rachel and I am 22 I was diagnosed 4 years ago when I first got to college. So you will have to bear with me during this long story but I want to give as much information as possible. When I was first diagnosed they started me on Prednisone and Pentasa right away. The Pentasa was making my hair fall out pretty badly, so after about 6 months I told my GI I needed off ASAP. Next up was Remicade. This was actually doing pretty well for me, but I decided to switch to Humira because it was more convenient for me to do the shots myself. I am originally from Pittsburgh but I was at school in Philadelphia and coordinating hospital time for infusions was just too hard. So from the beginning of my diagnosis I was going to the bathroom TOO much. By the time I was on Remicade transitioning into Humira I wasn't going enough. I also tried Miralax simultaneously which seemed to help keep me regular but that didn't last too long. So now I am doing the Humira, and I really can't complain because I only have the occasional flare up. After moving back to Pittsburgh and getting a new job I have been having more flare ups, but I am going to attribute that to stress/changes and hope it goes away soon.
> 
> But, there is this mysterious itching that I have that none of my doctors can figure out. I have seen two GI doctors, my GP, and two dermatologists. I have an appointment with an allergist at the end of July. It is usually always in the morning, especially after I shower, especially especially after I shave my legs: I have this EXTREME itching on my legs and sometimes arms. The strangest part is there is no rash, no bumps or anything. I try not to touch it which usually helps it go away in about 20 minutes. There was a period where it would even wake me up in the middle of the night. I have noticed that heat seems to make it worse, but it isn't the only cause. I have tried everything from cutting out dairy and gluten, to changing laundry detergents, soaps, and lotions. It's happened every place I have traveled to, so I am thinking it isn't environmental. It comes and goes in waves, and there is absolutely no consistency to it. The dermatologist prescribed me some steroidal lotions but they didn't really do anything so I stopped using them. I was also taking Hydroxizine at night and Allegra twice a day to lower my histamines but that didn't seem to have much effect.
> 
> I really hope I am not the only person who is going through this and someone else has some insight. I have no idea if it is related to my Crohn's or not, but I feel like I am out of options!:sign0085:


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## John1

Ive had itching problems as described by many here well before I was diagnosed with Crohns ( though displaying symptoms) and taking medication. It is obviously a Crohns related problem in my opinion and flares up simultaneously. For me it comes and goes and at its peak can very difficult to deal with. Silly answer... but I sniff ground black pepper!! Makes me sneeze creating goose pimples and cooler skin. Works every time. 

Thanks David to for letting us know about Vitamin deficiencies and itching. I will definitely follow up on this..


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## starsandbucks

I get this on my legs so badly, especially at night. It used to be just my thighs but now for some reason it seems to have moved down and is my shins, calves and ankles  I feel like I'm going to rip my skin off sometimes. I've been using Benadryl cream without a lot of success. I mostly just have to will myself not to scratch, which I just can't always do.


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## kllyeve

I also had really bad itching this spring on my back and hips, so much so that I bruised myself scratching it - I had an 8 month course of Entocort and am very prone to bruising right now.  GI had no clue why I was itching. I had to take Benedryl to sleep at night.  I also turned down the temp when I was showering and that also seemed to help.  I am on Remicade and was about for 4 months when the itching started.  It seems to have mostly passed now.

I had originally had a lot of faith in her but after not knowing why I was itching or even mentioning that it was possibly Crohn's related and also not realy knowing why my legs and feet had begun swelling or what could cause that(hello possibleRemicade side effect listed like second on the warning list) I am beginning to think she doesn't know as much as I thought.  I have gone to my GP who was more than willing to have the testing done to rule out Congestive Heart failure(a possible side effect of the remicade) as the cause of the swelling given the history of heart disease in my family.  I did reduce the swelling by cutting back the amount of carbs I was eating.  

I am tired of being treated by doctors as just one system at a time - GI for intestines only, OBGYN for thyroid & hormone issues, dermatologist for skin issues, GP for everything else.  Like none of these things ever affect the other!!!!!


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## IAmTheWalrus

Sometimes I myself get intensely itchy, but it's all over, also, I suffer bad with hayfever, dust particles etc, ever since my allergies have kicked up a gear so has the itching. 

It's so ironic that I'm on Humira and Imuran, both drugs that suppress the immune system, yet it does sweet FA for my allergies, which are cause by an over active immune system .... go figure, huh? lol

Although I take Cetirizine when it gets to the point of major annoyance, which helps alleviate the runny nose, sneezing and itchy/watery eyes.


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## cmichael

Yesterday, I tried Neosporin Pain Relief cream on my butt area, it has helped alleviate the itch symptoms and reduced the bleeding from the raw skin in that area. It might be worth a try for those with similar issues.


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## a1000lies

I only usually itch when I'm prescribed Percocet  lol


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## Livelife7347

I have Crohns disease, am on the sugar free, milk free, starch free diet for over a year, which the diet helped significantly w the pain and was on 6mp, currently off All prescription drugs besides Flonase  bc my lymph node on neck is swollen and I too have the itching sensation all over strongest on my arms, and then legs etc. i get it randomly too. Today its miserable and winter means long clothes on which makes it itch more...we will see


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## swing9cats

Interesting.  I recently had 2 bouts of pneumonia and was taken off of Imuran and had 2 high doses of Levaquin (Antibiotics).  I've changed my diet to SCD and haven't had the problem since.  I also think its some sort of strange inflammatory issue-as I had problems even years before Imuran.  I have no answer but these changes have (with the addition of Stelara) made this problem a non-issue now (THANK GOD).  Have you removed GMO's from your diet also?  Watch the below on GMO's...you might change your diet also.
http://www.youtube.com/watch?v=Njd0RugGjAg&sns=fb


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## Livelife7347

I just looked at antibiotic I'm taking and itching is a side effect, that's most likely my problem ATM. Yes the SCD is amazing! Not sure what a gmo but I'll look into it.


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## katiesue1506

Itching can also be a symptom of poor liver functions... due to medications like Imuran and AZA... Or really anything that gets processed through the liver. 

Also could be due to inflamed liver bile ducts- a condition that often accompanies Crohn's called Primary Sclerosing Cholangitis. (PCS). 

If your liver enzymes are raised both of those things could be the culprit and causing the itching. I did have raised liver enzymes on Imuran and they thought it was PCS but it was just the way my body was metabolizing the Imuran. Doc added Allopurinol to the Imuran to make it metabolize differently and that helped my levels and the itching.


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## swing9cats

I think its the inflammation of the layer of fat under the skin...as I had this issue periodically growing up and it only got worse when I got diagnosed, and calmed down with anti-inflammatory drugs-EXCEPT imuran.


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## rkoll327

Hi everyone! Well I was waiting a while to post this to see if I was correct, but as it shows now the B12 injections have helped ENORMOUSLY. Anyone who has the itching I suggest talking to your doctor and getting tested for B12 deficiency. I had done the 4 loading doses (1 each week for 4 weeks) and am 2 months into the monthly injections. I haven't had any itching for weeks, knock on wood. The injections have also improved other things, but most importantly to me the itching! This is the first time I have had such relief from the problem since it started. Hope that this could be a solution for others too


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## David

That's fantastic!  I'm so happy for you   Thank you for updating us.


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## LondonSnow

I'm glad it wasn't PCS. As I was reading through, I really hoped I wouldn't have to be the first one to bring it up so B12 deficiency is great news.


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## Twbuto

Arm itching regularly.   I always assumed it something to do with Crohns but had no idea why. My Dr put me on Atarax, 50 mg.  Strangely enough, this has helped moderately, but not totally.  For me , when it gets crazy, Ice is the only thing that makes it go away, on the short term..good luck, fellow Crohnies.


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## David

Twbuto, have you ever had your vitamin B12 level tested?  If so, what was it?


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## spryte

I have similar issues also.
Diagnosed w/Crohn's about 20 years ago at 48. Mild Crohn's and only one bad flare up about 15 years ago.
About 3 or 4 years ago I started this insane itch. Usually in the evenings I start to itch around the neck and/or hands but also in the scalp. I have scratched until I have bled and taken skin off but the itch seems to be much deeper (?).
I tried numerous creams and such until I found a Polysporin (over the counter) anti-itching compound that actually relieves the itching but no one will attribute a cause.
Also, about 10 tears ago I developed Shingles in the scalp (I recognize the phantom itch in that spot to this day) and two years ago I developed C.I.D.P. (Chronic Inflammatory Demyelenating Polyneuropathy, I hope I said that right) treated every eight weeks with IGIV. There are a couple of papers out there claiming a link between the conditions (here is one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4379591/). Both my GE and my neurologist partially agree but say there is not enough data.
At my last check-up all my bloodwork was good including vitamin levels.

I am not the doctor, but I do know my body and I do believe there are relationships between the above conditions and that Crohn's sufferers should be aware of the possibility of being hit by something totally unexpected.

You are not alone. I can empathize with your plight.:drink:


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## SmaryLiyana

My 5 year old had a bad rash that would flare up almost every day. We tried many different creams, lotions, cortisone and ointments; all of them made her cry because they hurt so bad and she complained that they were itching her. With foderma serum her rash basically disappeared after 1 night, there are still some marks on her legs, but they are getting smaller and lighter in color every day. Foderma didn't make her legs itch at all.


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## Charuz

After years of dealing with my rash and diagnoses that were all over the place, it was determined that I have none-intestinal CD. Once that was determined my doctor went after my immune system very aggressively and the rashes went away and my CD went into remission for a long time. CD will show up in the strangest ways, nothing is out of its reach.


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