Doctor won't prescribe steroids for Crohn's Disease

[Chester]

Hello group,

I have posted before, I guess about a week ago, and I'm back. I have Crohn's, and I'm looking for some advice.

I have been enduring this flare-up for about 3 weeks now, and I think I'm going downhill. My doctor has me on Colazal, which I believe is the same as Asacol, which I've been taking since I can't remember and didn't prevent this current problem.

Here is my situation: My doc is vehemently anti-steroid. He won't prescribe them unless the Crohn's is "extreme," as he says. Maybe I'm not extreme yet, but it's not getting any better, either. Has anyone had a similar experience, with a doc who hates steroids? I understand they can be harmful, and maybe he's just being cautious, but it sure feels like I need some.

If anyone can give me some direction, I'd surely appreciate it. Please answer

Chet

 

[Sojourn]

Have you ever been put on steroids in the past? I'm guessing that he would want to do a CT scan or colonoscopy before going to steroids if you haven't had that done recently to determine the severity. Make sure you describe your symptoms in detail to the Dr. when you see him.

When I was first diagnosed, after colonoscopy, the Dr. put me on steroids immediately then phased them out and I went on Pentasa which didn't work that well. But he was not going to go back to giving me steroids. He wanted me to stay on Pentasa until that was exhausted and then go to Remicade if other meds didn't work. I went my own my way at that point and am suffering the consequences now.

I think they are reluctant to use steroids except in extreme cases to get a flare under control. I'm in such bad shape now that they can't even give me steroids. But as soon as I can, they plan to get me on steroids and then back to the Pentasa regiment. My case is extreme though, two surgeries to drain abscess.

Do you feel any hard areas in your stomach when you press down on the affected area?

 

[Chester]

Yes, I have had steroids in the past for this. Also, the doc did a colonoscopy just before putting me on Colazal. So he knows my condition well. He gave my abdomen a good external poking, so I'm apparently not a surgical candidate.

I have also tried the probiotic thing, yogurt and Primadophilus reuteri, but there's no help there. Last night I had a temperature of 100.5 and felt awful. Temp is down a bit this morning, but still feel bad.

He prescribed Humira, but that costs $625 per shot; the first month's treatment would be $5,000, so that's a non-starter. Is Remicade more reasonable?

Gosh, I'm sorry to hear that you're having such a hard time. Feel better soon, OK?

Best,
Chet

 

[Jeff D.]

Remicade is also a very expensive treatment. Steriods are okay but personally I am scared to take them since the last time I took them I was very moody and gained a bit of water weight. Have you thought about other medications such as 6-mp or Pentasa or something else.

Good luck

 

[Chester]

I have had 6-mp in the past, but, believe it or not, it gave me gout. I'm not sure what the connection is. Don't know about Pentasa. What is that? Different from Colazal or Asacol?

This is all so disappointing because when I have had flare-ups in the past, other docs just gave me prednisone for a couple of weeks and I was fine. Now, suddenly that doesn't seem allowed anymore, and I'm just twisting in the breeze.

Chet

 

[Sojourn]

From my understanding, Colazal produces mesalamine in the colon and Pentasa is actual mesalamine. I don't don't know the differences in their effectiveness.

If you have a consistent temperature everyday and other symptoms, I would think your doctor would want to run more tests. If you can, you might want to try to go to a different doctor. Long term steroid use can do a lot of damage to your body, so always using it as a maintenance drug might not be a good idea. But you obviously need some relief. I'd force the issue with your current doc or go to a different one if possible.

You could always go to the emergency room and they might give you some pain meds and even a small supply of pred. They would also take an x-ray and/or CT scan if you told them the pain was extreme. Considering finances, though, that should probably be a last resort. Yet, with hospitals you can make payment plans and pay the bills over a long period of time. Still, no fun.

Hope you fare out okay. Let us know what happens. I'm trying to focus on the positive things and being thankful for what I still have.

 

[Chester]

Right, I'm not looking to be on steroids long-term. That hasn't been necessary in the past. I think you're right about forcing this issue with my doc. I'm not in the "extreme" category yet. I'm just trying not to get there.

Thanks for your help and support. I'll root for OU this fall, just for you.

Chet

 

[Jeff D.]

Pentasa turns into 6-mp in the body and a lot of the time if you have problems with one you can usually take the other and be fine. It may have caused gout by affecting your kidneys in some way or something.

Best of luck

 

[Crohniac]

Just a thought...have you inquired about Entocort? I only ask because it isn't as hard on your system as prednisone and it helped me out when I first started it. I am not sure how effective it is long-term....like I said, just a thought.

 

[old hat]

Pentasa turns into 6-mp in the body and a lot of the time if you have problems with one you can usually take the other and be fine. It may have caused gout by affecting your kidneys in some way or something.

Best of luck

You are thinking of Azathioprine (Imuran).

Pentasa is a mesalamine formulation like Asacol.

 

[old hat]

Just a thought...have you inquired about Entocort? I only ask because it isn't as hard on your system as prednisone and it helped me out when I first started it. I am not sure how effective it is long-term....like I said, just a thought.

Entocort is specifically formulated to treat CD of the terminal ileum and/or ascending colon. Since he was prescribed Colazal, I am assuming he has Crohn's Colitis. If he has areas of inflammation in parts of the colon other than the ascending colon, Entocort won't do anything there. The medication won' reach the inflammed areas past the ascending colon.

edit
It typically isn't used long term. A course is normally 12 weeks which is what I had. It's not a systemic corticosteroid like Prednisone but it is still a corticosteroid and long term use is generally avoided afaik.

 

[Mazen]

If you have fever, maybe antibiotics like Cipro and Flagyl can help. Check this with your doctor.

As for natural support, I advise you to try bee propolis (a natural antibiotic) and fish oil. Good luck

 

[Jeff D.]

You are thinking of Azathioprine (Imuran).

Pentasa is a mesalamine formulation like Asacol.

You are right, I have researched was too many medications and sometimes forget.

 

[Kev]

Hi Chester... I'm all tooo familiar with that 'slipping downhill' sensation when nothing you try seems to be putting the breaks on. It can be very nerve wracking, and VERY hard to be patient and give the meds a chance. However, have you REALLY conveyed your fears to your doctor? He/she might be under the impression that you are comfortable with their approach, or that your condition isn't as serious as your perception of it is. If you feel that you are still going downhill, call the doctor. even if you just get to leave messages with the receptionist. Continue that until to get to talk this over with your doctor in person.
(i.e face to face or via phone).. And let them know you are keeping a diary of all of your conversations. If he/she is still opposed to steroids, and offers no recourse to your continuing deteriorating condition... then perhaps you need to shop for a new doctor and possibly consult an attorney about possible malpractice against your doctor. I know this sounds extreme... and only you can decide if your current situation merits it... but your first duty is to yourself, and if you feel your doctors current treatment regimen is actually not achieving results, or making yours worse, then action is called for. I mean, it would be a totally different situation if what you were proposing was an untried drug or treatment plan.. but all you really want is a treatment that practically any GI would at least consider, even if just on a trial basis. Sometimes you have to fight for what you need, and even fight dirty.

Just my two cents worth... And speaking of money, my best 'guestimate' is that the cost of Remicade would be in the $1000's of dollars. My GI ballparked it for me at between $4,000 - $6,000 per treatment... and the plan would be every 2 weeks to start, then every 4, possibly moving to every 6 over a possible 2 yr span.
I didn't bother to crunch the numbers, as I can't even afford the first treatment..

But it may be different in your neck of the woods... I'm on the east coast of canada

 

[Creepy Lurker]

Just my two cents worth... And speaking of money, my best 'guestimate' is that the cost of Remicade would be in the $1000's of dollars. My GI ballparked it for me at between $4,000 - $6,000 per treatment... and the plan would be every 2 weeks to start, then every 4, possibly moving to every 6 over a possible 2 yr span.
I didn't bother to crunch the numbers, as I can't even afford the first treatment..

But it may be different in your neck of the woods... I'm on the east coast of canada

Well, the British National Formulary prices it as this:

Intravenous infusion, powder for reconstitution, infliximab, net price 100-mg vial = £419.62. Label: 10, alert card, counseling, tuberculosis and hypersensitivity reactions

Which is CAN$896.66 or US$852.58

 

[soupdragon69]

Things might be a little different in Canada and the States Creepy Lurker with medical insurance charges and for those without the benefit of that insurance cover so are likely to be much more expensive. They really live a medicines lottery in many ways and its dictated by the above I think more than whether they need it or not which is demoralising and frustrating and very unfair.

We are very lucky here in the UK despite all the grumbles about the NHS - I for one just wouldnt be here if I had to pay full tilt for all my meds.

Wish the BNF covered everyone here.... Please dont take my post the wrong way..

Hope you are doing ok.

Jan

 

[old hat]

You are right, I have researched was too many medications and sometimes forget.

There are a lot of them with various odd names. It's easy to get them mixed up.

 

[old hat]

My health insurance covers the Remicade completely. I don't pay anything out of pocket for it. I pay more out of pocket for generic Omeprazole. Sometimes it seems like the more specialized and expensive the medication is, the less I pay out of pocket for it. $30 per refill for generic Bupropion (Wellbutrin). $10 per refill for 6-mp or Dicyclomine. $0 for Remicade.

 

[Creepy Lurker]

Things might be a little different in Canada and the States Creepy Lurker with medical insurance charges and for those without the benefit of that insurance cover so are likely to be much more expensive. They really live a medicines lottery in many ways and its dictated by the above I think more than whether they need it or not which is demoralising and frustrating and very unfair.

We are very lucky here in the UK despite all the grumbles about the NHS - I for one just wouldnt be here if I had to pay full tilt for all my meds.

Wish the BNF covered everyone here.... Please dont take my post the wrong way..

Hope you are doing ok.

Jan

Still helpful as a guideline I think

As for the NHS, I agree completely