Humira Side Effects Part Two

Adam colitis dude

Adam
colitis dude

What Up Colitis People,

Happy St. Patrick’s day to everyone who’s getting in on those celebrations (or who already got into that the past few days), nothing like some corned beef and cabbage right?

Someone contacted me with regards to their side effects from using Humira and they added some pretty incredible photos that others might be interested in.  So, I figured it’s time to bring up this rare, but possible subject once again.

As some of you know, I started this site several years ago and one of the main reasons was to find out if anybody else out there in “Internet Land” could help me understand what was going on with my SUPER strange UC symptoms.

Back in the spring and summer of 2009 when I was introduced to Humira, and shortly thereafter all hell broke loose for me with awful side effects.  Luckily for me, the side effects have gone away, but there was a time after stopping which had me real freaked out because my skin was all messed up in many parts of my body.  Again, it was awful.  And to top it all off, the doctors who I saw from places like Stanford University, UCSF Medical Center in San Francisco, the Mayo Clinic in Arizona and another local spot in Palo Alto, California had no clue as to what was going on.  So yeah, I was super pissed and wondering “What the F***?”

So the long story short is that since my original posting back on January 18, 2012 titled “Side Effects of Humira”  has turned into one of those postings where folks from around the world have emailed saying things like, “Holy crap Adam, I’ve got the same rash/skin lesions as you”.  Or sometimes it is parents messaging me with a similar type of message.

Without delaying any longer, there’s a pretty cool guy who emailed and sent along some pictures of what he’s in the middle of with his Humira side effects.  He wanted to share these on the website for others to see.  They are not pictures of me, but if this was four years ago they would look almost identical. I really hope he has a similar fate and over time gets all the current skin issues to resolve which I really feel is possible.

To all of you reading this post who have the very rare, and unfortunate fate (like I had) of skin (and maybe even your fingernails) getting some negative influences or side effects from Humira, the good news is YOU ARE NOT ALONE.  If you’re wondering about what I did to get rid of the skin issues…I took a ton of prescriptions steroid based creams, tar creams, and probably some others…none of which had any immediate effects and all of which I discontinued using.  It’s always hard to say what exactly fixes these sorts of side effects, but for me, I believe getting off the humira, and staying off it was a huge part of my success with overcoming the skin problems.  Also, making the diet changes that were necessary to bring my UC under control along with reducing stress and toxic parts of my life I have to assume played a part in getting better as well.

Some of you who may be considering taking Humira to treat your Ulcerative Colitis or anything else for that matter (who doesn’t see the Humira commercials on TV all the time, mainly targeting arthritis folks it seems to me), I’d encourage you to also take a few moments to read another previous post from the site titled: “Psoriasis or Eczema Following Humira and Remicade use for IBD“.  That post includes a link to the medical study from Dr. JF Rahier who is a super guy and gave me permission to repost the full PDF file of his study on the site.  He is in the middle of more research at the moment, just nothing published yet on this topic.

Thanks again to the brave soul who shared the photos below.  I hope that in the not too distant future you will be able to message back that everything has resolved for you.

Take care,

Adam

(Below are the pictures that I was sent (thanks so much for sharing “M”))

humira side effects hidradenitis suppurativa

One year after stopping Humira, Nothing helps, Doctor’s do not
know what this is. I do. It’s Humira side effects.

Hidradenitis Suppurativa humira related

Taking 70mg a day of prednisone for a month, it helped for a
very short time and then nothing.

RA humira

Started about a month after stopping Humira, and my RA levels were
off the charts. I had no issue with RA prior to this.

humira fingernail rotting

My fingernails and toenails rotted off are still not growing back
after a year.

 

Humira

44 Responses to Humira Side Effects Part Two

  1. shelly in maine March 17, 2013 at 11:58 am #

    Wow Adam…wholly flashback! I hope he is on the mend as well.
    And for anyone thinking about humira there was the FDA warning post you did.
    And fyi…
    I ended up with some weird nervy stuff that has never gone away…you know I call it my top Med.-of the gift that keeps giving…
    Knowledge is power all…be well. :-)

    • Adam March 17, 2013 at 9:38 pm #

      Dang Shelly,

      I’m kinda hoping to get some weird nervy stuff going every once in a while…especially if its anything at all like the funny gas feelings from the dentist. Any chance????

      On a serious note, way sorry its never really gone away for you. Always a chance though!

    • Matthew Adair March 18, 2013 at 8:12 am #

      Hi Shelly in Maine, This is “M”. I was wondering if the side effects that I’ve had are somewhat the same as far as the skin issues?

      • shelly in maine March 18, 2013 at 3:32 pm #

        Hey “M” a la Matthew…welcome to the site…Adam has done amazing things here. I fortunately did not get the skin stuff like you and Adam…only minor and definitely had injection site rash and swelling…mine went straight to nerves and trouble breathing…had a heart stress test to be sure I was OK to stay on it! I obviously was very desperate at the time! :-) I ended up in the ER with all those weird symptms-mostly the nerve and heart concerns as heart disease runs rampant in my family as well. Hopefully yours will clear up soon like Adam’s did. Wishing you quick healing. Hope you have another plan??
        Best, Shelly

    • joanna March 18, 2013 at 12:49 pm #

      ahah shelly! i have been saying that about humira, too.

      it’s the “gift that keeps on giving.”

      i developed c diff a few days after i took it and was in the hospital for a week. i’ve never been sicker in my life.

      • shelly in maine March 18, 2013 at 3:36 pm #

        Hi Joanna, yeah! I guess they all are really…that just tops the list for me.
        http://kalishresearch.com/a_gluten.html…this is awesome info from Dede Cummings Facebook site from her Living with? Crohn’s Colitis book/blog. Check it out for sure! :-) Shelly

  2. bev March 17, 2013 at 2:24 pm #

    That is really scary.

    I feel bad for you, Shelly, and anyone else who has had this side effect from ANY drug. I cannot imagine…I would freak out if it were me…

    Cheers, Adam.

    • shelly in maine March 17, 2013 at 2:51 pm #

      Thanks Bev…could be worse…you know I’m a fighter/survivor…and a guinea pig from way back!! :-) Gotta keep laughing and focusing forward…right? I’m still struggling, but have seen a couple of small improvements. :-)
      Be well…Shelly

      • bev March 17, 2013 at 3:08 pm #

        Shelly, I only wish for you NO more struggling at all. I think you, above all else, deserve to feel top notch at this point. You truly have been through the UC ‘mill’, so to speak.

        I really do consider myself very fortunate in my UC. Compared to a lot of other sufferers, I believe that I’ve had it fairly easy…even after 15 years with pancolitis.

        Bev
        :)

        • shelly in maine March 17, 2013 at 3:44 pm #

          Bev…you are always so sweet…we all battle this to varying degrees…and now together thanks to Adam….bits and pieces we keep finding things that at least help the same as most of the meds. So together,perhaps, we’ll find or wait for a cure!
          :-) Shelly

          • bev March 17, 2013 at 6:16 pm #

            I hear that…and second that, Shelly!!

            :)

    • shelly in maine March 17, 2013 at 4:29 pm #

      http://vimeo.com/m/61275290

      This is very funny. :-)

      • Adam March 17, 2013 at 9:43 pm #

        Nice one Shelly!!!! that’s a good one for sure!!!

    • Adam March 17, 2013 at 9:41 pm #

      Yeah Bev, I think you are hitting the main points there. Any side effect from ANY drug is not an easy thing to deal with.

      Especially for those who are trying to wack the old UC symptoms at the same time.

      Thank goodness we are all fighters! And ain’t not side effects going to stop us right????!!!

    • shelly in maine March 18, 2013 at 3:38 pm #

      Hey Bev, check out that link/article from Dede I posted to Joanna! Tons of info! :-)

      • bev March 18, 2013 at 4:17 pm #

        Wow, I bet I have a gluten intolerance…

        I’ve sort of known that for years, but because I have been tested three times for celiac and it’s been negative, I was in denial.

        Cheers, and thank you Shelly!

        • shelly in maine March 18, 2013 at 5:37 pm #

          I think it also helps explain why SCD works to varying degrees for people. I have stayed about 95% SCD…I miss a lot of things, but almost too scared to eat them anyways! I think a lot of people are gluten intolerant and probably lactose intolerant, too.
          Interesting all the way around. :-)

    • Matthew Adair March 18, 2013 at 5:16 pm #

      This is Matthew’s girlfriend, Jae. In answer to the above question, Bev, yes, I got C Diff from Clindamycin. Spent 5 days in the hospital. It was horrible but thankfully, I am ok. Back to the evil Humira. The mother of a friend from work took the evil stuff for RA. She has developed EXACTLY the same conditions that Matt and Adam have experienced. What looks like Psoriasis all over her legs, severe joint pain, sores popping up and disappearing, etc. The pictures of Matt’s legs posted above were actually taken before it got to its worst stage. He’s found something that has helped more than anything else so far and is much better, but still has a long way to go. As far as the joint pain and what appears to be RA symptoms it seems to be getting worse. Going to see a Neurologist because there are some nerve damage symptoms that he’s never had before either.

      Thank you Adam for creating this site. It assures those unfortunate enough to have experienced these and other horrible side effects, that they are not crazy and most importantly, not alone.

      • shelly in maine March 18, 2013 at 5:44 pm #

        Jae,
        I think Matt may have been asking about my nerve stuff, too. It made me very “nervy” uncomfortable and twtchy. Most has gone away over time, but some remnants still there. I talked to my primary care Dr. About it and he talked about its half-life, etc and I also had found some info that looked at many months for symptoms to dissipate. I wish I could remember the number, bu you get the gist…just time.
        Hang in there. Be patient. Be careful with adding more meds on top other than dealing with the rash.
        Best, Shelly

  3. Maggie March 17, 2013 at 2:38 pm #

    I have psoriasis any way along with psoriatic arthritis and uc. I was on Enbrel before Humira because Enbrel quit helping my PA and it wasn’t for uc. While on Humira I started experiencing wierd feelings across my back shoulder blades just under the skin. Eventually it moved to other parts of my body. I started seeing a naturopath so I went off Humira. I saw a neurologist for these weird symptoms but by that time they had mostly subsided. After a few months the pa pain got bad again so I went back on it, as I had some left in the fridge and lo and behold, the symptoms came back so I finally made the connection. With all my other problems, I just thought it was something to do with pa. I now describe them as MS type symptoms. Thankfully, they have all gone away. Shelly, it sounds like what you’re going through. I am now off all medications for uc and pa, and only use lotions with evoo in them for skin rashes that I naturally get. It’s unbelievable what horrible side-effects we get from these meds, not just the biologics. I feel like we’re all lab rats. My gastro and rheumatologist both got exasberated with me because of what I told them. Neither of them believed me. I’ve never gone back to my gastro because she then put me on Cymzia and I had a bad reaction to that, too, and she treated me like it was my fault!! Unbelievable!! I guess I needed to vent, I’m so grateful for this site and all I’ve learned from Adam and everybody else who posts here. Best of luck to all of you!! :)

    • shelly in maine March 17, 2013 at 2:49 pm #

      Yeah Maggie,
      I’m a UC vet and was on humira for nly 6 months after allergy to remicade and I tried diet, etc, but got very sick and was losing tons of blood and decided on humira out of desperation..I was allergic the whole time, but it did get the bleeding stopped and my last dose was July 20, 2011… been Med free since and still working out of a flare from Oct…no more toxic meds for me!
      Best, Shelly

  4. Travis March 17, 2013 at 6:33 pm #

    2 weeks feeling great and no side effects

    • Adam March 17, 2013 at 9:36 pm #

      Travis,

      That’s great buddy! I was hoping someone would write some positives about their experiences. Awesome man. And come to think of it, I’ve mentioned on this site a few times before, but a really good friend of mine who has arthritis (at the age of 30) also has been using Humira for 3 years now with some pretty good success. he says if he forgets to shoot his dose ontime, he starts to notice it, but for the most part he’s pretty happy.

      Glad to hear things are looking on the up and up Travis!

  5. gerardo March 18, 2013 at 2:43 pm #

    Hello

    My english is bad, i read your article about Humira side effects, i am with Humira since 2009, my desease is Spondilitis, I have never had a side effect, i saw your case and i am scaried now. :(
    Please tell me, do you know if that could happen in all cases?
    Thank you bro
    My twitter is
    @espondilitismx

    Take care

    • Andy June 15, 2013 at 1:37 pm #

      Hi Gerardo,
      You are one of the lucky folks who do not have any side effects from taking Humira. Keeping doing what you have done and talk to your doctor what you have to look out for. Most people who have ankylosing spondylitis do have much side effects when taking drug like Humira or Remicade.

      Good luck,

  6. KAREN March 18, 2013 at 9:15 pm #

    Hello, I’m restating this because I have recently learned through watching the Dr. Oz show that leaky gut syndrome often caused by harsh drugs, poor diet, emotional distress, etc. can cause chronic conditions like arthritis, bloating, food insensitives, really bad skin breakouts, migranes, etc. etc. Hippocrates has been known to say to the effect that all health issues begins in the gut.

    Has anyone read the New York Times article published around 2/2013 by Investigative Reporter Suzanne Meadows, “The boy with a Thorn in his Joints”. This story talks about her son being diagnosed with juvenile arthritis, and while using Conventional Medical methods, anti-inflamatory drugs, along with with methotraxate her son became progressively worse. The rhemuthologist want to increase the medication by 50%. It had progressed so much that her 3 year son had trouble going to the bathroom, engaging in sports, and getting out of bed, etc.

    EVENTUALLY, S. Meadows decided to listen to her sister’s advice by seeking the advice of an alternative health care provider. This provider told Meadows that perhaps her son had what’s know as a “leaky gut syndrome”. This is often caused by bad diet, harsh medications, stress, etc. She was advised to avoid certain foods, i.e. dairy, gluten, etc. and to include PROBIOTICS and Chinese herbs called “FOUR MARVELS”. She was told that she should see improvement within 6 weeks. Meadows stated that six weeks to the day she was greeted by her son who had gotten out of bed on his own and who told her that “his knees no longer hurt”, and then he went running off into the other room to have breakfast.

    This report generated well over 600 comments by the readers. What I found encouraging is that many of these commentors had the same story of progressively worsening arthritis despite medical intervention and remission occurring as a result of a nutritional approach.

    Nutritional approaches are not promoted by the medical communication. Meadows sparked a lot of discussion even on many of the arthritis foundation websites. However, most comments on these websites belittled this approach and made statements indicating that they felt that the boy had been wrongfully diagnosed. The boy had been to approximately 3 doctors.

    PLEASE PLEASE READ THIS ARTICLE. Her story was also aired on the Dr. Oz show recently (approx. either late Feb or early March /2013) It’s entitled something to the effect: The Disease your Doctor can’t Diagnosis. I’m using these approaches, and the arthritis is lessening.

    Thank you and I wish everyone ever improving good health. I’m recovering from taking harsh medications as well.

  7. Bethany April 12, 2013 at 6:29 pm #

    I know I’m late on posting this, sorry! I have had UC for approx 7 months now and went through the laundry list of medications and “natural” methods until being put on Humira. I had every side effect I could of had with everything prior. I have now been on Humira for almost three months and have had no side effects at all. My symptoms are still kind of there but definitely improving. They say that you should, unless for certain reasons, give it roughly four months to know specifically if its working. The reason being is for different people there is a different therapuetic level that has to be reached. I tried the diets, the probiotics, so on and so forth. I’d love to say that the natural way always works for everybody but its just not true. My doctor has always been super supportive of giving the natural way a chance and giving her feedback so we knew how to proceed but my body just never responded. Humira has been my saving grace and giving me the opportunity to avoid surgery for a little longer. I know that with every “method”, whether it be natural and medicinal, it will eventually stop working whether in 6 months or 6 years, but I’m going to enjoy it while I can. Hope this helps somebody out there struggling with their decision on Humira!

    • Andy June 15, 2013 at 1:59 pm #

      Hi Bethany,
      It is good to hear that Humira is working for you. You are the lucky one! Keep us posted.

  8. Dede April 14, 2013 at 3:51 pm #

    Dear Bethany and Travis….and everyone (hey Adam, and peeps, Bev and Shelly!),
    One reason I love this site is the way we all support each other—whether we are on SCD, or on Humira, or whatever. I like hearing all the back and forth… I sometimes agree with Maggie, though—my entire GI clinic thinks I should be on TNT-inhibitor Remicade (like Humira) AND 6MP. Unanimous. One of the top docs in the country came into my little cubicle to tell me how bad my flare-up was (I blogged about this! LOL ;) when I was embarrassed to be wearing the stupid hospital gown in the tiny post colonoscopy recovery room—God! Doctors can be so nudgy!). Well, I just can’t take the drugs… When I read that Bethany and Travis are being helped by the drugs, I am jealous and encouraged (at the same time!;). When I hear about “M” with scary symptoms, I feel so badly…
    Gerardo, dont worry; you sound like you can tolerate the meds!
    Also, Jae, I wanted to tell you and Mathew, that I had nerve damage (not sure how I got it ;( I was tested. Nerve stuff is way complicated. There are root nerves, and stem nerves… Goes n and on. One thing I learned, is compresses (heat) really helps my ankle, also Castor Oil soaked wool, with Saran Wrap over that, a towel wrapped around, and a heating pad on top. Do daily and gentle stretching exercises, and gets massages, and watch for repetitive actions (like the way you cross your legs can aggravate that nerve down your leg!), take Omega 3 Fish Oil, and it takes time to heal…. Hang in there!

    We are all different little bodies of good and bad gut bacteria and DNA…we are all living with different stress levels, and different patient-knowledge levels. We’ve got to stick together and gather our own knowledge and support each other because the docs aren’t exactly making that much headway (studies are funding by the big pharmaceuticals. Thank you, Adam, for giving us all a VOICE ;) Come over to my blog, anytime! I LOVED that article about the Boy With the Thorne…” Thanks, Karen!!!

    • bev April 14, 2013 at 4:04 pm #

      Dede…you are too wonderful. I like this site as well, for just what you said…the way that we all support each other no matter what road we choose to go down. No judgement…no admonishment…only acceptance and tolerance. What could be better??

      I don’t know where I’d be, really, without you Dede, shelly in maine, Graham, ADAM…how could I forget Adam???, Joanna, UC family boy, and so so many others. You all seem like family to me…only better!

      Love to you ALL….’MY PEEPS’ TOO!!
      Bev
      :)

      • shelly in maine April 14, 2013 at 4:24 pm #

        i second/third that…well said, both of you! :-) it takes a UC/Crohn’s village! :-)

        Way better than family much more understanding…sympathy and especially empathy, support and love!

        Together we will try and win this war and in the meantime…we’ll fight the battles together! :-)

        Love, Thanks and Good Health ALL, Shelly :-)

        • bev April 14, 2013 at 4:34 pm #

          :)

          :)

          :)

  9. Dede Cummings April 18, 2013 at 10:50 am #

    This is so nice… I’ll be posting from the Mayo Clinic when I leave April 28th! I just blogged about it in fact…. Looking for a second opinion. Really happy to have this online community. WE are all so lucky.
    :)

  10. Sharon June 16, 2013 at 9:26 am #

    Although I have no desire to see anyone go on Humira, I do want to say that for me, it was the right decision. After 20+ years with UC, I could no longer take any ASA drugs (see my colitis story on “the gift that UC gave me”)and I could not get my flare under control. I was on 60 mg of Prednisone and taking VSL#3DS. The probiotics had helped me get into remission before but not this time. My awesome GI listened to all my reasons that I should not take Humira. I have 4 kids and could not afford to be immunosuppressed, I had already had a near death experience from a drug reaction, side effects, etc etc. He then told me that in current flare and taking Prednisone left me more immunosuppressed than Humira would. I could barely lift my head from weakness which meant I was really unable to care for my family in my current state. I asked him (in desperation) to just take my colon out. Ultimately, I chose the Humira. I have been on it for a year now with very few side effects. I feel I have been more fatigued but my darling husband likes to remind me that I am over 40 and I can’t blame EVERYTHING on my UC (I disagree, I am sure Prednisone pushed me to need glasses more than age-LOL). I recently had a flare when my Humira delivery was delayed but am confident that I will be coming off of the Humira within a few months. I am now taking VSL#3DS daily, L-glut, Astaxanthin,iron , and protein powder.

    Again, I am not a huge fan of the drugs but I am grateful that for 23 years, I have lived a relatively controlled UC life because of them. I took Asacol through 4 pregnancies but otherwise only used during flares. Sometimes the meds can be the right decision at the time. For anyone about to start Humira, reading these posts, please understand that if you cannot control a flare without the meds, take the meds. If the diet, supplements, etc work for you then by all means go natural. You are not a failure or lazy for doing whatever you need to do to get your UC under control. Quality of life is important regardless of how you get there.

    • Hector June 16, 2013 at 2:23 pm #

      Very very true. I refused meds for a year, trying to get my flare under control naturally. Unfortunately nothing I tried worked and I ended up being hospitalized twice this year already. Once for severe anemia (had a hemoglobin of 4), the second time for developing various blood clots in my legs that traveled to my lungs. I had a Vena Cava Filter placed. I decided I needed meds at that point. Still no remission, but at this point I need to do whatever I can to stay out of the hospital. I don’t like taking meds, but sometimes they are necessary.

  11. Mark July 17, 2013 at 9:13 am #

    I have UC and was on Remicade for about 2 years. It worked until recently when my body rejected it. During the last 3 infusions, the reactions got worst and worst. The doctor took me off of Remicade and had me go to Humira. I started my first treatment on 6-17-13. I have just taken my 3 set of shots on Monday. About a week ago I started to have redness between and on top of my toes. I assumed it was possibly athletes foot, so I put some medication on it. It did not help. I Goggled Humira side effects and got this website. When I saw the pictures of your rash, that’s mine to a tee but between and on top of my toes. I also noted that my toenails appear to be infected too. Just got off the phone with the doctors office. Waiting for his reply.

    • Adam July 18, 2013 at 5:28 am #

      Hey Mark,

      I’m super sorry to hear that you’re going through some of the trouble that Humira and some other biologics can bring on. But please keep your head up, that stuff has an excellent chance of resolving on its own if you decide to stop taking the medication and if you find something else to treat your problems. Wishing you the best, and you’re for sure not alone.

      -Adam

  12. Stewart M July 18, 2013 at 4:56 pm #

    Hello Adam,

    I have read your two posts on Humira with great interest. I have Crohns I was diagnosed with the diease 6 years ago and as my specialist has said be thankful that I have not lived witht he since very young!

    True enough but it does make some radical changes in your life. I myself never have lost a huge amount of weight which is odd but again I have benn told each case is different. Just yesterday I was started on the load dose of 140mg of Humira like you needels have become part of the routine. I’ll back up a bit when first diagnosed I was plased on 80 mg of prednisone and then reduced over time and at the same time stared on Imuran. I took the Imuran for almost a year with monthly blood tests. The Imuran was not doing anything and in fact my liver function levels were increasing to serious levels. After a liver biopsy and further consults I was placed on MP6 or azathiaprine I was on this drug for only 4 months as this caused some very quick changes to my liver function in fact gave me a form of non transmittable hepatitus or something like that.

    Well as you can imagine my blood and organs were in a real state and my specialist who is one of the best in South Western British Columbia a Dr. Philip Malpass told me no meds for the crohns the liver is more important. I could not agree more.

    As all things go my levels began to reside and my crohns pain and issues began to escalate and after one of many colonoscopies they found the crohns had actually spread and was active..duh I told them that months prior. Anyway I told the doctors a patient knows when his body is not in the right so this brings me to this week. My choices were limited Remicade by infusion or Humira by pen. The latter seemed more doable as my wife who I should have said is a nurse and I travel and this would be more flexible. I should also mention that for the past year I have been on 25 mg of methtrexate by injection hence the needls. The methatrexate was also not working on its own and again to presaent day sorry we now add Humira.

    It is as read probably to early to gauge the effectivness but I did have nausea and abdominal pain withheadache about two hours later and the abdomial pain continues. My wife thinks the drug is going after the crohns I hope so. I am monitoring and will check back in. Thats my story and tanks for the detailed information I hope I can be the positive voice!

    • Adam July 20, 2013 at 8:42 am #

      THanks Stewart for adding here what is happening with you. I wish you the very best moving forward with your treatments!

  13. Sierra April 25, 2014 at 10:46 pm #

    I just started humira and since i have been on it, i have had a stiff neck for three weeks and starting breaking out everywhere! Its awful. I usually get acne during my menstrual cycle but only on my face. I now have them all over my chest, face, & back now after starting humira. Its embarrassing! :( But main thing it needed to cure was my pouchitis and cuffitis (i have a jpouch due to severe UC..only dime size of “good” colon when needed to be removed) and so far it has helped. Now to only get rid of all the nasty side effects!

  14. Claire May 30, 2014 at 3:38 pm #

    Hi Adam,
    I am a 17 year old girl who was diagnosed with UC this past November.. I have tried more drugs then I can remember and nothing seemed to work. Then finally i was put on prednisone to get me into remission and then in March i was put on prednisone and imuran. The combination seemed to work well but as everyone knows the side effects of pred can be terrible. My whole face has puffed up to the “moon face” and i have gained a ton of weight. Being a teenage girl in my final year of high school this is really effecting my confidence and quality of life. As i started to taper off the pred i got these weird red hives all over my legs and two large spots on either arm. My left leg also swelled up to the point where i couldn’t walk. My arms also hurt so much i couldn’t even lift my arms up to feed myself. The doctors weren’t exactly sure what caused it and just bumped up my prednisone to a higher dose. The second time i tapered off of the drug the same thing came back but worse. This time i had to be hospitalized for 4 days, and had many tests done. I had over 30 different dermatologists analyze me during a “rounds” session at the hospital. The doctors finally concluded that they think it may have been an allergic reaction to the imuran, so for now im off of that and just on prednisone. My GI suggested the next step would be to try remicade or humira, and i chose humira because it just seems more practical to be able to do it in my own home. Anyway, after reading all these stories im becoming very worried about the side effects.. i don’t seem to have good luck and i really just want to get better! any suggestions?

    • Adam May 30, 2014 at 4:11 pm #

      Hi Claire,

      Super sorry to hear what’s happening with your side effects/symptoms. As you can read, I was in the same boat several years ago and since getting off the medications and onto a more natural diet, I’ve noticed much relief. The reality is that dermatologists have a VERY HARD job when it comes to skin issues. I’ve learned over the years from people like you and from other reading that there are literally thousands of different rashes/bumps/blisters/lessions that can take place on/within/below our skin from all sorts of different things. And yes indeed, medications also play a part, and the biologics, prednisone and others that are part of common western meds for UC people like us often pay the price of “unknown side effects”…

      So back to suggestions… if I was you, I’d look pretty darn closely at diet and diet changes since that is what helped me. The trouble is that nearly every GI specialist in the western world (that includes the UC, Canada, and UK, heck all of Europe and Australia, NZ too…) is going to tell you diet plays absolutely no part in UC. That’s the battle we UC’ers face when we treat our UC thru diet. There’s plenty of info on this site about diet, and I’d look that way and just for kicks, be sure to ask your doc about the role diet plays in UC and IBD as well.

      On a side note, coming off prednisone often leaves people with bumps and red acne looking pimples, not uncommon at all.

      -Adam

      • Claire May 30, 2014 at 4:41 pm #

        Originally before i was diagnosed i tried to eliminate certain foods from my diet.. ie dairy & gluten. It didn’t seem to have any effect & it just seemed that anything and everything i ate wouldn’t sit well. It was also very hard to stick with a certain diet.. being a teenager and going out with friends and such made it hard to be strict with the diet. As expected, my doctor has never mentioned anything about managing my UC with diet at all.. but i have heard from people that its completely manageable by diet and from others that it is not. I personally think it all depends on the person as everyone is different and can handle certain foods differently.
        This all happened 9 months ago when before i was even diagnosed and my UC was under terrible control… now that my UC is under control with prednisone i think switching to trying to manage it with a diet may have a different outcome.
        My mom has also suggested that i go see a homeopath. Apparently they have this test that tests your sensitivities to a bunch of different foods.. as well as different drugs. Once again, its hard to go through the process of figuring out what you can and can’t eat.. especially with going to school and being with friends – i dont want to risk having to urgently run to the bathroom. Though if humira doesn’t work out, diet will most definitely be my next choice.
        Also, before going through with the humira, my GI made me get a bunch of different tests done to make sure i would be okay taking it.. im just wondering if your GI had you take any tests prior to trying the drug?

        • Adam May 30, 2014 at 4:53 pm #

          Claire,

          Here’s a story to read about allergy testing from another writer from the site (read through the comments there as well, there’s lots of interesting ones) http://www.ihaveuc.com/urging-others-with-uc-to-test-for-food-allergies/

          As for pre-immune suppressant testing….YES. Did quite a bit of that too. Whether or not that was helpful/needed or just another expensive test that our healthcare system tacks on I just don’t know, but I went through with it either way and since I’d blazed passed my deductible for the year at that point cost wasn’t an issue, but again, yes I did pass all those tests that were given at the time. And like everyone else…I had the best doctors from places like (stanford, UCSF, PAMF etc…:)

          Listen to your mom, go see a homeopath to get another outside opinion:)) no harm in consulting. (Be sure to find out how many different UC’ers that person and the rest of your doctors have treated/treating… Just another question to throw in to help you gauge if that particular person is someone you’re comfortable with.

          best,
          adam

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