What to do now!!

[Jessasha]

Hi all,
I've been on Humira now for around 3 months, in the last month things have snowballed somewhat with site reactions, full body itchy rash including my vag, Joint pain in my knees, hair thinning, Sinus(chronic), feeling very poor in general and I have no appetite. I saw my GI Wednesday and he thought it may be a Medicine induced Lupas, so I have been advised to stop Humira for now and not take my next dose on Tuesday.
But I got some results for my bloods today and my WBC, CRP, ESR are all ok..
I am yet to hear from my GI and don't understand how all this could be going on without my bloods showing anything?
I have currently been given 25mg of pred for 3 days to calm things down but what do I do now.... When things calm down should I give the Humira another go?
I have been through all the meds so far and had no luck.. The only one left would be Remicade and my GI thinks that I would be highly likely to react to that as well. He suggested that maybe my best option would be drug trials..
What does this involve and how could it benefit me?
Im so confused as to what to do now? Any advice would be great..

 

[Jennifer]

If it were me I'd opt for Remicade before doing any drug trials. Its not 100% that you'll react to it so its worth a shot. Have you tried things like EN and LDN http://www.crohnsforum.com/wiki/Low-Dose-Naltrexone?

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/forumdisplay.php?f=32

Just so I know and understand, what other meds did you try and how did they not work (allergic reaction, didn't notice any change etc)?

 

[Jessasha]

Hi Crabby, I asked about LDN early on and it's not on the approved list here in Australia, so my GI was basically not interested in prescribing it. EN im not sure of at this point.
Drugs I've tried
Imuran - started getting cirrhosis of the liver
Methotrexate - allergic rash all over face, hot and itchy.. Lasted for weeks.
Mesalazine - Itchy rash ( but could have been from hypersensitivity from metho)
Humira - as above

EN could be a possibility. Is it prescribed?

 

[Jennifer]

I hear Tesscorm knows more about EN than most so hopefully she might be willing to share some info. In the meantime I can point you to this thread: http://www.crohnsforum.com/showthread.php?t=41791 and then here: http://www.crohnsforum.com/showthread.php?t=23607

 

[Andrea30]

So sorry for all that you are going through. Remicade failed for me. I just started HUMIRA a couple of weeks ago and so far nothing bad except a bruise which is normal. Good luck to you.

 

[Tesscorm]

Hi Jessasha,

Tough spot you're in... :ymad: I can only imagine how frustrating it is!! :ghug:

Please do look the links Crabby posted, in one of the links, I wrote about my son's experience with EN. It's worked very well for him and, with no negative side effects and tons of good ones (nutrition, anti-inflammatory, etc.), there's no downside to trying it.

I've never heard that there is any conflict with any medication as EN is simply a nutritional formula (although it's formulation is broken down so that it is very easily digested) so you could try it with meds.

There are different types and brands of formula - I 'think' for elemental formulas you would need a prescription (I believe these are the most easily digested) and polymeric which are also used for EN but are less broken down (but, apparently, taste better and you don't need prescriptions for some brands).

My son uses an elemental formula, Tolerex (Nestle), but he ingests his through an NG tube, overnight, so taste isn't an issue. But, there are many kids (I'm usually at the Parents forum...) who have used polymeric formulas (I think these would be like Boost, Ensure, etc.).

But, even without a prescription, if you are going to do it 'exclusive' (no other food), you should probably still do it under the guidance of a GI or dietitien (to monitor your nutritional intake).

One more link , Dusty recently posted a report on EN in the following thread. It will also provide you with some info.
http://www.crohnsforum.com/showthread.php?t=41655

Let me know if you have any other questions!

Good luck! :ghug:

 

[Ckt]

Hey crabby!wl that one does suck!i have also been through all the oral agents with no side effects but no he'll either so was placed on remicade. I built up antibodies which caused angioedema which is swelling of the face and throat,a potentially early side effect. From what I understood the gi to say is reaction to remicade is more often to happen because it is partially derived from murine,mouse urine. He other biologics are all human based. I have been off/on humor for 4-5 head and it did well for me until it fizzled about a year ago. All my inflammatory markers have always been nil even on no treatment and in full flares.so we usually diagnose by symptoms which for me include bloody and copious diarrhea,thickening of the bowel wall and strictures. I have had (gulp) 6 resections and 10 total abdominal surgeries all probably as a direct result of crohns..you may have read my history in another thread so sorry if its redundant!
So in short if I were you, I would probably give remicade a try. It may help and you may have no ill effects from it. Prepared to be very fatigued for a few days after the shot.
I'm doing combo therapy a go with humira and methotrexate before moving o to stem cell transplant. If it doesn't work, I've registered with the nearest hospital that performs it and am fortunate in that the transplant doctor pioneered it for autoimmune disorders. I don't want to silly dally too long because there is a cut off age of 50 and I'm 51..they have said age isn't a huge issue but the older I get the more unlikely the re to want to do it and I may start having comorbidities like heart disease or diabetes. I believe as severe and drastic as the process is,this is going to be where we head in curing crohns finally..
I hope you find a solution!EN is a terrific idea and I have done it with really god results. I just find I can't practically do it from ow until the end of time..I be liking my food too much to stay on it!
Good luck and keep us informed on what happens!cindy

 

[Jessasha]

Thanks everyone for your replies and support

I have spoken with my GI and decided to give the Humira another try as my bloods were good.. I am hoping these symptoms will go with time and not increase... I guess the next couple of weeks will tell. I'm due for my next shot Tuesday, Fingers crossed.

 

[Jessasha]

Hi Guys,
Just thought I'd update incase any of you suffer the same side effects as me..
I have taken my next dose of Humira nearly 2 weeks ago, (as suggested by my GI)
I still have this rash which has spread over my whole body bar my face.. It is sooooo itchy..
After seeing my GP, and having a skin biopsy I was referred to a Dermatologist, who confirmed that my rash is a reaction to the Humira. Hmmm.

 

[Jennifer]

Jessasha have you tried taking Benadryll to see if it helps at all? Dunno why your GI or GP didn't see the connection of the rash to the Humira.

 

[Jessasha]

Hiya Crabby,
Been gobbling antihistamines like their lollies.. They don't seem to help much..
Dermatologist has prescribed a stronger Antihistamine to help me sleep and a stronger steroid cream than the one I've been using, it just takes the edge off, so better than nothing. My mouth is so dry each morning from the antihistamines it feels like the dessert.

This year has been a terrible one with all my meds, I just wish I could settle on something for a while.. I burst into tears in my GI office at my last visit as I was not coping with all the side effects from all these meds this year.. It just got to much and I don't think he knows what to do with me at this point. I took the latest Humira shot 2 weeks ago which he suggested and the itching only intensified but has since calmed down a bit.
I see him in a couple of weeks but I'm not holding my breath for any new suggestions.

 

[Jessasha]

Hiya All,

Thought I'd update you all with whats going on with my frantic itching and scratching due to my Humira reaction.. :frown:
Well I'm on 45mg Prdenisolone!! The only thing keeping me sane at this point. It seems
they can't tell me how long this is going to go on and its a case of tapering up and down until this awful reaction decides to go away.
I have never in my life experienced such insane itching, it lasts 24/7 which means I am not getting much sound sleep at all..
I've attached this study I found which is a very interesting read if your thinking about taking Humira/Remicade and have a history or family history of Skin conditions like Psoriosis, Eczema, Dermatitis
http://www.ihaveuc.com/ulcerative-colitis/humira-remicade-psoriasis-eczema-study.pdf