Been through all drugs except Cimzia and LDN anyone suggest anything else? Also liver sick.

I have been flaring horribly since February when I had to stop Humira due to it causing Lupus and Psoriasis and a sick liver. Have been on Remicade, Imuran, Asacal all the others. Only thing I haven't tried is Cimzia, which my insurance won't cover and the assistance isn't much help or LDN. I am having a horrible quality of life and am wondering if anyone has any other ideas? I am at my whits end. Waiting to see what my liver results will be next week. Just taking pain pills when I can't stand it and trying to survive. Also, need a hysterectomy but my insurance is saying it's elective and won't cover. When I suggested possibly LDN my doctor wouldn't even discuss. My joints hurt, pain in my lower right constantly and can't eat without running to restroom, lost 20 pounds, luckily I have it to lose as I think Humira puts weight on you. Oh and Prednisone and myself don't mix.

I'd seek a new doctor, to begin with.

Have you had any tests done recently? For lower and upper bowel Crohn's? Lower right pain typically signifies trouble in the terminal ileum. Maybe if all meds have failed up to this point, surgery is in order...

Personally, I don't wish to be off-putting, but I kinda doubt Cimzia would work miracles where all the other immune-suppressing drugs have failed to make a dent. Not to say you shouldn't try it if you could, but I doubt it would be "the answer". LDN works to entirely different principles than the anti-TNFs (Remicade, Humira, Cimzia), so I do think that would be a better next step. Seems like only one doctor in 10,000 will prescribe it though: I don't know why, as it appears to be safe enough.

Good luck...

I know you have taken Asacol in the past, but have you tried Sulfazine? I think its kazbern here who takes and it has helped her Crohns and joint pain alot. Just a thought!! Hugs and sorry you are suffering so.

PS: If you can find someone to prescribe LDN that might be another good option too.

I agree, i would try ldn before cimzia. If youve failed on remi and humira, the chances arent great for cimzia. Theres another one too, in trials, but i ont ualify as i have an odtomy.. Natalizumab? Or tysabri? Cant remember.. And another one just oming up that oesnt even have a name yet.

But with LDN you cant take presciption pain pills.

I mentioned ldn to my gastro and juat shook his head, saying not an option. Dont know why? As youd think if it was the painkillers he'd have said so. I got more the vibe he wasnt convin ed of its efficacy----and i idnt want to push it since he'd already humored mevby letting me do anti MAP therapy.

Hello!

I hope you will get some relif soon!

Just some slight going to better. And of course if you are unable to eat, really, really consider liquids. I that case (but please speak to some doc or some professional!) consider buying 2.0 cal Nutren or something very high in callories. But do not drink junk like Ensure or Prosure! This is total garbage from my point of view. Hihg in sugar and all crap you can imagine. Well in all liquids there is chem crap, but others are better than others.

So. 2cal means in 1ml of liquid there are 2cal. Otherwise normal special liquids are 1mc/1cal. So you will have to eat less and get enough callories for daily intake with 2/1.

And mybe you should consider get another opinion or another GI. Your health is first, no some relationship doc-patient you have with your GI. 4 months? My God! Let us know how things will go. Try to get some sleep anytime you can, if you can. Heard about Stellara. Promising, but you can get because of your liver.

I wish you soon turn to better!

Best!

YP9

Post Edited By Moderator (Nanners) : 10/2/2011 8:50:45 AM (GMT-6)

mom1760 said...
I didn't respond to remicade or humira and i decided to go ahead and try cimzia when you dont feel good you will try anything.My gi doc prescribed cimzia with 6-mp until i got the loading dose in. He was worried since I didn't respond to the other two chances were i wouldn't to cimzia either. He said doing 6-mp also will boost the response and what do you know......Cimzia has been the only drug to get and keep me at the closet point to remission I have ever been. I have been taken cimzia for a year and a half and just had my colonoscopy the 23rd and he said i still had a few erosions in those areas but nothing like i used to.It has been my wonder drug. Cimzia offers the cimplicity program will they send you a prescription card for discounts so between that and my insurance I pay nothing for my monthly dose of cimzia and it has been my best time dealing with this disease.

That's great news! We never know whether something will work unless you give it a shot.

Funny how Asacol can cause worsening of symptoms in some while Pentasa does a fantastic job even though both are in the same category of mesalamines.

So the same thing applies for Remicade, Humira and Cimzia.

My husband's GI mentioned a trial for Vedolizumab, and said that so far they have seen really good results for it. I do not know what the entrance criteria is for that trial, but if nothing else is working, I'd be willing to give it a shot.

I hope you find something that works for you and doesn't mess with your liver.

PV

Hello Crohn'snme, I have had 18 yrs. and counting, with severe intestinal issues,also have tried everything (to many meds. to list) "Yes" , I also have Crohns, Familiar Poloptosis,Ilieostomy, and hepB, with cirrhosis of the liver.
Worrying about your liver is exactly what you and your GI.,should be worrying about? The Liver and intestines are all one big happy family, married to each other in us,"FOR BETTER, OR WORSE",(sort of speak) when one is not happy, the other will eventually start feeling the strain and start to fight back,and we all no when one of our support systems breaks down the other will want to do the same.

For the time being the crohns will have to be put on the back burner, until your lab work is evaluated as to the extent of your Liver damage. With that in mind, consider yourself lucky that you have been having flare ups so the Dr.s have been ordering labs on a regular basis, and that your enzymes have been seen at a higher level and that they caught it now, where it could be treatable before it gets any worse.
Some people go on for years without any liver issues until the day comes along and it is to late to do anything about it. I know this does not sound very encouraging to you at this time, but trust me when I say, this is a good thing! Catch 22, but our livers filter everything in and out 24/7 and if you think about a water filter and how many times a year we have to change the Filters in those, I think you might get my drift on why your Liver is in question right now?
The Medications they have us on for our diseases, are very toxic to the rest of our organs,especially the;"LIVER".......!!! Keep a stiff upper lip, roll with the punches, and Rock on Garth..!!

Please let us know how you made out on your next Dr.s visit? Hope this helped you, oxoxox

Hi chron´snme

Just wanted to say that there is a treatment that can work for some of us but unfortunally they do not give/recomend/do it in the US if I´m right. It´s called apheresis ( Adacolumn leukocytapheresis) . It is like dialysis but you take away the "triggered" white bloodcells called monocytes and granulocytes and why yu do so the body can slow down the inflamation and get you in a remission.
I have had it tvice the first time 2011 and now in june 2012. It has worked so fine I get in remission and it lasts around 10 months. 10 months with no D with hardly no pain 10 months with more energy and being able to almost eat everything!
I have triedmany other treatments with either bad sideeffects or no respons at all and I also have other autoimmun diseases.
Even here in scandinavia it´s hard to get this treatment but some docs belive in it and in my case I was at the end of the rope hadn´t so many other opptions. Not everyone responds to it ( but tell me a teraphy that has got 100% respons !!) and the best part is that it´s almost no sideeffects.
Hope you find the treatment that works for you. There are studies about this severel studies if you need backup.

Good luck!