Intractable Crohn's - future medication?

[lizziecee]

I have had Crohn's for some 35 yrs, most of the time on steroids, but last 6 yrs methotrexate,orally for 5 yrs, injections past yr, 15 mg.weekly. 6 months off for FEC chemo. Still got diarrohea. Also history of bc invasive ductal carcinoma- stage and grade 2 - had WLE, total node removal, FEC, 25 rads with 2 boosters. On Arimidex since Feb 2004. May 2006 my gastro put me on Cipro for 5 days,10 days off, then Co-Amoxiclav for 10 days. 2 month appt.Couldn't get an appt on our socialised medicine health care, so wrote to him in August. Wrote back and told me to take Cipro for 5 days on,10 days off.Diarrohea comes back within 2 days of stopping cipro. I also take codeine phosphate daily, folic acid, and 10mg perphenazine/amitriptyline2; the latter to calm down the spasms in my intestines, and slow the motility. A recent endoscopy showed strictures in the small bowel. Colonoscopies always show multiple ulcers and crypt abscesses thoughout the gastrointestinat tract.  I have occasional total faecal incontinence which is very disturbing and humiliating. My gastro said in his response to my letter viz: "The problem with antibiotics is they are always short-lived. We need to find a combination of treatments to keep your Crohn's disease under control. The problem as you know, is that all the disease modifying drugs have potential side effects and any form of immunosuppresants in the context of previous cancer is of concern. There is no simple solution".  I don't
understand why, now after 3 years.  he has brought up my previous breast cancer in the context of my taking methotrexate, or other immunosuppressant drugs as he has not voiced these concerns in previous consultations.

I am to see him, at last, on 7th Sept for a consultation. What on earth do I do? He won't prescribe steroids any more as I got steroid induced psychosis when dx with breast cancer, and  previously when my twin brother died of a brain tumour,  and have arthritis in hands, feet and hips due to them.  I feel I am immune to methotrexate as it is not controlling the diarrohea nor my psoriasis. He also won't prescribe Infliximab,because I have psoriasis but is talking about Thalidomide. He worked in a leper colony previously and is one of only 3 doctors in England authorised by the German mfrs to prescribe this drug, but it is not without serious side effects.Do you use thalidomide in the USA for Crohn's?
What is the current treatment in the US for intractable Crohn's, considering I also have breast cancer, although NED at the present time.
I am really positive about my health, but just feel at a loss when no positive treatment is being offered that I have any faith in.  Do You have any ideas as to what can control my Crohn's problems?  
Sorry this is so long - I just don't feel I have any where else to turn to for help.
Liz.

[lizziecee]

Many thanks for your caring in posting. Unfortunately, I am violently allergic to all sulpha drugs, as well as Azathioprine.Don't even want to go there as we had to get a doctor to our home when I took azathioprine - bright red rash all over my body, vomiting and diarrohea. was taken into hospital by ambulance and put on IV steroids. I won't take steroids ever again, after having two psychotic reactions. I read some 13% of US patients who get steroid induced psychosis commit suicide, and I was very near to that after my diagnosis for breast cancer.  

Just been to see my gastro today - long consult at three quarters of an hour - he blinds me with science but he at least answers all my questions with honesty and caring.

We have agreed to double my mtx dose of 12.5 mg by injection to 25 mg once a week, along with a daily dose of one tablet of Cipro. I think this regime may work.

We did talk about thalidomide but he said this is a last resort solution and is very onerous on his and my part in licensing and monitoring. He is not happy with that at the moment.

I am happy with his solution and will go along with it for the time being.
Thank you for caring.

[MLWTR]

Have you considered trying sulfasalazine? It's an old drug, but can be very useful in a fair percentage of people with IBD. In fact, it's the only one of the 5-ASA compounds (Pentasa, Asacol, etc.) that has actually been proved to be more effective than placebo in a randomized, controlled trial. I also mention it because one of its active components is sulfapyradine (an antibacterial compound), and you seem to have benefited from antibiotics in the past. Might be worth asking your G.I. about it. Unlike many of the other standard Crohn's drugs, it is not an immunosuppressive, and is therefore less problematic with your cancer history.

Good luck.

[lizziecee]

Thank you all for your replies. Has made me do some research on the internet today.

I had never heard of neoplasia before - could my use of methotrexate for 4 yrs before bc (and I had a mammo 3 yrs before dx) have contributed to bc?

I feel like I am between a rock and a hard place. Don't see the Onc anymore (socialised medicine, as I am NED now for bc)so only have my very bright and concerned Gastro to rely on and an annual prod and proke with my cancer surgeon. Have bi-annual mammos.  However, although my gastro was a Senior Registrar at the major cancer Hospital, the Royal Marsden in London, England, he is not up to date with cancer treatments.

I tried azathioprine - got a 103F fever, rash all over my body and had to get a locum doctor out to our home on a Saturday afternoon as I was so ill.Vomiting and diarrohea - didn't know which end to put down the loo.  No gastros (and I have had about 6 in the last 35 yrs with moving around England and Spain) have suggested 6MP.

I looked up cyclosporine on the internet, and it is definitely not suggested for Crohn's, according to a Mayo Clinic trial. However, thalidomide is - so perhaps that is the way to go. I will talk to my gastro on Thursday about this and see what he says.

Thanks again, for all your input.
Liz.

[PAJ]

Hello , sorry to hear of your plight , looks like you have had the standard treatment , trouble is, medicine is in the dark ages . Doctors are brilliant people who are  totally  hamstrung by today

[kimbacat]

since infliximab is being tested for moderate to severe psoriasis, I don't understand why your doc uses that as an excuse for not prescribing it.  if IV access is a prob, you can have a port placed.  


Infliximab induction therapy for patients with severe plaque-type psoriasis: a randomized, double-blind, placebo-controlled trial.

Gottlieb AB, Evans R, Li S, Dooley LT, Guzzo CA, Baker D, Bala M, Marano CW, Menter A.

University of Medicine and Dentistry of New Jersey Robert Wood Johnson Medical School, New Brunswick, NJ 08901, USA. ***@****

BACKGROUND: Tumor necrosis factor-alpha is a key mediator in the pathogenesis of psoriasis. Infliximab is a monoclonal antibody that specifically binds to tumor necrosis factor-alpha, blocking its biologic activity. OBJECTIVE: The purpose of this study was to access the efficacy and safety of infliximab induction therapy for patients with severe plaque psoriasis. METHODS: In this multicenter, double-blind, placebo-controlled trial, 249 patients with severe plaque psoriasis were randomly assigned to receive intravenous infusions of either 3 or 5 mg/kg of infliximab or placebo given at weeks 0, 2, and 6. The primary end point was the proportion of patients who achieved at least 75% improvement in Psoriasis Area and Severity Index score from baseline at week 10. At week 26, patients whose Physician Global Assessment indicated moderate or severe disease were eligible for a single intravenous infusion of their assigned treatment to assess the safety of retreatment after a 20-week, treatment-free interval. RESULTS: At week 10, 72% of patients treated with infliximab (3 mg/kg) and 88% of patients treated with infliximab (5 mg/kg) achieved a 75% or greater improvement from baseline in Psoriasis Area and Severity Index score compared with 6% of patients treated with placebo (P <.001). Improvement was observed in both infliximab groups as early as 2 weeks. Overall, 63%, 78%, and 79% of patients in the placebo, 3-, and 5-mg/kg groups, respectively, reported one or more adverse events. CONCLUSIONS: Infliximab treatment resulted in a rapid and significant improvement in the signs and symptoms of psoriasis. Infliximab was generally well tolerated.

[Kevin Pho, MD]

Refractory Crohn's disease can be difficult to treat.  

Steroids and immunomodulator therapy are the mainstays of treatment.  Options would include Remicade, azathioprine/5-MP and methotrexate.  

Tacrolimus and cyclosporine are other options as well.  

With use of immunomodulator therapy, there may be an increased risk of neoplasia - and this indeed should be weighed against the benefit of treatment.

If medical therapy is not feasible, surgical options (i.e. colectomy) can be discussed.

These options can be considered with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_