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Not getting info from my doctor

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Ulcerative Colitis
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Posted 11/26/2010 7:30 PM (GMT 0)
Well, just to get to the point, quickly, I was DX'd with UC October of 2009, and it has been a never ending battle for the last year to find some medication that works. I was hospitalized Oct 09 for 4 days with SEVERE bleeding, and I had lost almost 40lbs in 2 months. Long story short, over the last year, I have been consistently on 40mg of pred, which helped with the pain, but not with the symptoms. In conjunction with the pred, I have tried Apriso HD 1125mg a day. Did nothing after about two months. Next I tried Asacol HD 2400mg a day, with the same outcome as the apriso. Then my doc upped the dosage to 3 800mg pills in the AM, and 2 800mg pills in the evening, with moderate results, but when I tapered the prednisone down to 10mg, all my symptoms started coming back. Finally about three weeks ago I reluctantly started 6mp (50mg a day). My doctor gave me NO information on what to expect, what to do when "such and such" happens. about two weeks ago I thought I was getting a cold, went to urgent care and found out it was bronchitis. The urgent care gave me a zpack, and that cleared up in about 5 days. All was well with that. about 4 days ago I started having flu-like symptoms and have been laying in bed since with the chills, varying degrees of fever, and absolutely no appetite whatsoever.

My question is this, should I be going to the ER? I read that with 6-mp, the chills are a sign of infection, but also that the 6-mp does nothing for the first two months. I have decent health insurance, but don't want to incur any undue costs by over-exaggerating my symptoms, and having the hospital tell me to kick rocks. Please help, I'm getting so frustrated.
Posted 11/26/2010 10:07 PM (GMT 0)
Have you been having regular blood tests?
When you start 6mp you need to have your liver function tests and white cell count checked weekly and then fortnightly/monthly to confirm that you are not getting serious side effects. If you have decent insurance it would be best to get your symptoms checked out, because you can't not eat without it having a knock-on effect to your UC.
Sue
Posted 11/26/2010 11:08 PM (GMT 0)
I think you should go to the hospital. Fever, chills and no appetite for 4 days for anyone needs medical attention - especially someone taking 6MP.
Posted 11/26/2010 11:45 PM (GMT 0)
I never take anitibiotics for bronchitis, just use albuterol, two puffs twice a day. The other thing, maybe go. You should be getting bloodwork.
Posted 11/27/2010 12:20 AM (GMT 0)
I think you should make an appointment to see a different GI. It sounds like yours isn't very responsive and doesn't explain things properly. It is true that 6mp can take a while to get into your system and during that period of time, you should be getting regular bloodwork to make sure you're not having adverse effects from the medication. Your WBC can drop too low and make you suseptible to infections and there is a chance you would have an adverse reaction and end up with pancreatitis, your doctor shouldn't have let you leave his office without explaining what to look out for. My doctor told me to call her office right away if I have a cold or any signs of a flu. I think you should see someone.
Posted 11/27/2010 7:26 AM (GMT 0)
I was very sick on 6mp too. Constant fever, nausea and vomiting. It was horrible! Have you looked into Remicade? It has helped me alot--when no other medications were helping at all.
Posted 11/27/2010 1:35 PM (GMT 0)
When you take 6mp, fever and chills always should warrant a doctors visit. It even says so on the literature. Please see a doctor to be on the safe side.
Posted 12/4/2010 10:34 PM (GMT 0)
Alright, I didn't get an email notification that there were any replies, but I see that there have been. Here's the deal with my Dr. I have been through about 3 different GI's, and the one I'm with now is about two hours away from me. I like him, and I get the feeling he knows what he's talking about. I'm one of those people that would rather just let them do their job, and not have to worry about all the little things. We started the 6-mp after discussing it for a while over the phone, and decided that was my last resort. So he called in the script, and I met with the pharmacist and discussed the 6-mp. After I left, I read through the entire literature before I took it, and noticed that it was cut off, ie, all the info wasn't there. There was no mention of chills or fever, in the information I was given.

Regardless, all those symptoms have subsided, and I'm feeling better. I think it was just the flu or something. I'm taking 50mg a day of 6-mp, and 20mg a day of pred. I had blood drawn on Thursday, and should have the results back on Monday or Tuesday.

As far as Remicade is concerned, there isn't a whole lot of information available out there, that hasn't been tainted by the manufacturer. It seems as though everything I've read paints it as this miracle drug (which it very well could be), but some of the side effects I've read have seriously deterred me from considering it, as of yet. If you can give me some info on it, that would be awesome, at this point I'm willing to try anything.

Does anyone else have constant headaches while taking 6-mp? I've noticed that about every other day, I get almost a migraine like headache for most of the day. I read that it's a side effect of the 6-mp, and also a side effect of the Prednisone... rolleyes
Posted 5/12/2015 1:46 AM (GMT 0)
Hello Mattscesc, I know this is an old post but hope you can reply.
Could you please tell me how did your doctor answer to these questions
on your medical form.

1-Prognosis of the main medical condition?
2-Relevant physical findings and functional limitations?

I hope you don't mind and thank you.
Posted 5/12/2015 2:02 AM (GMT 0)
You should just ask you question. You will not get a response from someone who has not logged in since Sep-2011
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