I'm running out of meds to try!!

[Essieluv]

Sooo, I'm pretty sure I had an allergic reaction to my last dose of Cimzia so I'm not comfortable taking it anymore, and that was my last drug option according to my doctor. I'm not really sure where to go from here; surgery, trying an off label med, or clinical trials. Here are all of the meds I've tried: Remicade, Pentasa, Humira, Entocort, Flagyl, Cipro, and the last one Cimzia. I'm not willing to try Methotrexate or Tsyrabi because of some health problems that run in the family. Are there any drugs I am missing? Some that are new maybe? Oh, and I'm having a pretty severe flare that has lasted two years, so more mild drugs are not really an option. Thanks for any advice you can offer. I would also appreciate some input on possible surgery, it would be my first so I don't know what to expect.

 

[nogutsnoglory]

Sorry you are having trouble with all the meds but there are still some you can give a chance. The immunosuppressive such as 6mp, Azathioprine and Imuran are ones you can try. As far as ASA's besides Pentasa there is Apriso for Crohn's and several others good for UC.

There are also off-label drugs and those in clinical trial. One very promising one is Stelara. A lot of people have good luck with low dose naltrexone. Check out the sub-forums in our treatment section.

 

[rollinstone]

Maybe ask your doc about LDN, or if your going the clinical trials route, SSI vaccine - looks very promising. I believe it could potentially cure crohns based on how it works.

 

[Essieluv]

I have been looking into LDN, however is it for severe flares? I was under the impression that it was just for moderate/mild flares. I'm curious about it, seeing how this flare has gone on for ever and only gets worse, and I REALLY want it to go away.

 

[Ducey99]

I was going to suggest LDN as well. Not sure on if it's only for mild/moderate flares but I'd say it's worth a shot regardless. There are a couple of threads here with people who have had great success with it.

 

[Ducey99]

Also, what are your thoughts on Medical Marijuana?

 

[Essieluv]

I'm not very keen on medical MJ. I know it can be really helpful, but I don't know if I feel comfortable with it. I feel like it would be my total last resort.

 

[rollinstone]

IMO medical
Marijuana has been a God send for me, it's also a lot safer than most medications, especially if not abused

 

[Riley]

Medical Marijuana has been a god send for me as well. I don't know what I would have done without it.

I sympathize EssieLuv....why don't you see what is being offered in a clinical trial? There are a lot of new drugs that will be coming on the market in 2014/2015....I feel very confident they are going to cure this disease soon!!!!!

 

[alex_chris]

I have been looking into LDN, however is it for severe flares? I was under the impression that it was just for moderate/mild flares. I'm curious about it, seeing how this flare has gone on for ever and only gets worse, and I REALLY want it to go away.

Before taking LDN, just to clarify you have tried azathioprine and 6mp?

The one biologic you haven't tried yet is Golimumab (brand name Simponi). Unfortunately it currently has only been FDA approved for UC (in May of this year) and not Crohn's, so your doc would have to make a bit of a leap of faith to prescribe it to you (and insurance needs to cover it).... Officially your doc could always just "nominally" change your diagnosis to UC to avoid any problems. Of course, Simponi works for UC and Crohn's, it just hasn't received the FDA seal of approval for Crohn's yet.

 

[lgpcarter]

I didn't see Prednisone on your list? Not for maintenance, but to help get the flare under control so something like Imuran or 6MP can kick in.

I feel your pain as I am also running out of options. Simponi has also been mentioned to me. I think they are doing a clinical trial of that here right now. Stelara is the other one not on the list.

 

[Essieluv]

I have not tried 6mp or azathioprine because my doctors were not sure it would help with such a severe flare. I also haven't been on pred; I think my GI tries to avoid it as much as possible. I am interested in Simponi, I think I will mention it to my doctor and see what he says.

 

[alex_chris]

I have not tried 6mp or azathioprine because my doctors were not sure it would help with such a severe flare. I also haven't been on pred; I think my GI tries to avoid it as much as possible. I am interested in Simponi, I think I will mention it to my doctor and see what he says.

Ok, here is a bit of an overview of meds just to sum up things (I must have missed it, but are you a Crohn's or UC patient? Also, are you located in the US or elsewhere?):

Pentasa: usually prescribed long-term, helps principally UC patients and some Crohn's patients. Not a powerful drug, but also not that many side effects. Today, often used in addition to other drugs, some docs have dropped it alltogether for Crohn's patients.

Flagyl, Cipro, other antibiotics: short term use to treat fistullas, abscesses, no long term use recommended. Doesn't really help with Crohn's long term.

Immunosuppressives (azathioprine, 6mp): used long term over years to get patients into remission by suppressing the white blood cell count to the normal lower range. One of the two current standard long term management approaches.

Biologics (remicade, humira, cimzia, simponi): statistically most effective use for long term Crohn's treatment. Sometimes used in combination with immunosuppressives which yields even higher results. Another drug which is a biologic which has not been mentioned before is natalizumab (tysabri) which had some problems in the past and was withdrawn for Crohn's use in Europe butis still used in the US if I am correct.

LDN: one smaller study showed the long term benefits of LDN for Crohn's. It has not beem approved for use in Crohn's or UC cases. Was developed to fight alcoholism.

Corticosteroids (prednisolone, budensonide): these are used mainly short term to fight inflammation (they can have serious side effects - statistically much, much more likely than the serious side effects of the other mentioned drugs avor - if used long term). Pred is more effective for Crohn's because it works on the whole intestine, it is also more dangerous. Budensonide (Entocort) works only well if the Crohn's is concentrated on the lower smaller intestine and upper colon.

Having said that I would not dismiss the use of aza or 6mp at this stage and depending where your inflammation is located would ask for pred for short term use.

P.s. I don't know much about Stelara, but here is a thread on it http://www.crohnsforum.com/showthread.php?t=32002&highlight=Stelara&page=7 .