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08-18-2012, 11:21 AM   #1
emmaaaargh
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Are you *serious*?

I think for the sake of simplicity I'm going to refer to my doctors as Dr. P and Dr. V, here. That way I get to keep my privacy, but without all the annoying "other doctor" and "other other doctor" business.

So - as some of you know, Dr. V is my consultant at a big hospital in the city. Dr. P is a fairly new doctor of mine who I was referred to earlier in the year. Last time we had an appointment, it was at their joint clinic. Dr. V has been pushing and pushing to put me on Infliximab for close to six months now and we don't want to do it. Last appointment, we told him our reasons and said we would prefer not to. He didn't comment. Dr. P, on the other hand, seemed to actually listen and instead put me on Azathioprine. All is well and good.

But now after calling the hospital time and time again I can't get hold of another phlebotomy form or another prescription for the Aza (liquid form expires SUPER quickly - it only takes a month to go off!) and is it odd to say I WANT a blood test? My azathioprine expires tomorrow and we still haven't gotten a call back after countless messages. Nonetheless - I still prefer him to Dr. V. The reason being...

We were about to go out and buy some food (favourite part of the week ) today when we opened the door to the porch and found we had some post. There was a letter there for my parents, and my Dad tutted and said 'it's probably your prescription.'

Nope. Letter of admission for an infliximab infusion. ON THE FIRST DAY OF SCHOOL. Is he ACTUALLY serious? Did he listen at ALL during the last appointment? We've told him countless times that NO, we have our reasons, we don't care that you want to try the top-down approach, I do NOT want to go on infliximab until I've exhausted everything else. I'm 14. I don't want to be on a medicine that will last me ten years at most.

So sick and tired of this. One doctor's MIA and the other is insensitive and will not listen. Kudos to my Dad, though. After reading it he folded the letter up, chucked it on the side and said 'we'll have to phone up later. You're not having it.' I really do have excellent parents.

Argh, I'm so frustrated. I'm really happy with Dr. P, though. I don't care that he's not a consultant at a big hospital like Dr. V, he listens to me and actually shows empathy. Isn't that what being a doctor is about?

(P.S. if you sat through all of this, you're a saint. )
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly
08-18-2012, 06:14 PM   #2
rygon
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that is rubbish. Which hospital do you go to? with aza you should be having a blood test weekly at 1st then 2wks / then monthly (hope someone else will be able to give more details)

Im on remi at the moment and its been great, i didnt get a chance to start it as soon as i was dx'd but if you are having major problems i'd seriously consider it

Why do you think it will only last 10yrs btw?

Sounds like your docs have something in mind and dont care about your thoughts at all. Can you change docs?
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08-18-2012, 10:31 PM   #3
mickey
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Good job! Stick to your guns and keep researching and asking questions. You will find your answers. Because they are in charge of things does not mean they excel at what they do with patients. Keep eyes and ears open.
08-18-2012, 10:47 PM   #4
kiny
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If I can give you one tip, when you go to a doctor, don't just sit there and take their abuse.

I bring a booklet to my doctor, she knows why and I told her why, my last doctor pushed stuff and I said no a million times and I ended up quitting his office slamming the door.

Now I have a piece of paper that I write every single line on, if they ever mistreat me they know they will hear about me. I love my new doctor and she understands me and my reasons.

I pick my own laboratory where they do tests, I communicate with the people directly, not indirectly through a doctor.

My best advice is, bring a booklet, piece of paper, recorder, and write down everything.
08-18-2012, 10:56 PM   #5
Jennifer
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Why do you think it will only last 10yrs btw?
Ya I'm curious about this too.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
08-19-2012, 07:06 AM   #6
emmaaaargh
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I read somewhere on the NHS they put you on it for ten years - and then tend to take you off it because it's too expensive. Also, since it hasn't been out as a treatment that long, who knows how long you can take it for? We tried to put this issue to Dr. V but he skirted around it by saying "we may develop new treatments in the future...". Yeah, because MAY is a definite guarantee! :/
But I'm also reluctant because the NHS guidelines state that you should have FAILED treatment with corticosteroids and immunosuppressants like the Aza. We're not even there yet, so why rush?

Dr. P is at Medway Maritime Hospital (where I go for all the blood tests - it's a lot easier!) and Dr. V is at King's College Hospital in London, which is massively inconvenient.

We were thinking about changing doctors, but then all of the senior gastros close to us seem to be in London. Which still sucks for transport etc... and my mum told me I'd probably need another set of scopes and bloods so they can check everything out - she said they wouldn't transfer any of my notes - so I chickened out. :/

I think our game plan is to just storm in there on Monday and ask to see him for just two minutes, get another form and another prescription. Then I have to wait three days, since our pharmacy has to order it specially made up! Oh well. Never have I been so eager for a blood test, though.
08-19-2012, 11:00 AM   #7
littlemissh
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In the uk it is usual for gp and gastro to 'share care' with aza. Consultant prescribes and gp can arrange for blood tests as more convenient at local surgery.
I suggest your parents ring your gp and explain you are on aza and need blood test and they will arrange it.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
08-19-2012, 11:56 AM   #8
emmaaaargh
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Blimey! That does sound more convenient - we moved in December and our GP is now only a five-minute walk away Will do!
08-19-2012, 02:19 PM   #9
hannah-rose
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I read somewhere on the NHS they put you on it for ten years - and then tend to take you off it because it's too expensive. Also, since it hasn't been out as a treatment that long, who knows how long you can take it for? We tried to put this issue to Dr. V but he skirted around it by saying "we may develop new treatments in the future...". Yeah, because MAY is a definite guarantee! :/
But I'm also reluctant because the NHS guidelines state that you should have FAILED treatment with corticosteroids and immunosuppressants like the Aza. We're not even there yet, so why rush?
Infliximab was the only thing that helped me, don't write it off so soon, I know it's scary but plenty of people have it with no side effects. I'm sure it wouldn't be the case that they only put you on it for 10 years and then stop because of the cost, if it's working you'll continue to have it, what's more likely is that it'll stop being effective before then. It's stopped being effective for me and also I had a minor reaction so they're switching me to Humira to be on the safe side.

The reason NHS guidelines say you should have tried other meds like steroids and immunosuppressants is because it is an expensive drug and they want to make sure it's the right one for you - if something cheaper will work then yes they will prefer you to take that. (To be honest if it works who cares what the drug is?) I had Infliximab without trying oral steroids OR immunosuppressants, because those drugs would not have been effective for my perianal disease which was severe and extensive. As predicted Infliximab healed me up a treat.

I understand your concern that you don't want to start something now that may end up not working in the future, but also why be ill if you have a chance at something that could make you better? There will be more biologics developed in the future, there's already Humira and others available that are less common and possibly not available in the UK yet, but they will be soon.

Find a Doctor who listens to you, respects your wishes and is medically very informed and up to date on the latest research and medications. You should be able to feel confident in your GI's abilities and if he wants to try a top down approach he should respect your decision if you say no, but perhaps you should think about it and weigh up the pros and cons. I know it's scary but it could make you better.

Hannah x
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Current meds: 6MP and plenty of exercise!
Previous meds: Metronidazole, Infliximab, Humira, Azathioprine
08-19-2012, 06:24 PM   #10
Jennifer
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Well said Hannah!

What I've learned over the years is that steroids and 6MP and the like are much older drugs and the newer ones now are Humira and Remicade so doctors tend to lean towards the newer medications now because they have had great results with many people.

13 years ago all there was to treat me before my resection were steroids (Prednisone and Entocort (which was new at the time)), Asacol (took Azufidine before that which is a very old drug) and 6MP (also fairly new at the time). None of those even combined could keep me from the resection.

Since then I've just been on 6MP which was switched to 100mg about a month ago. Blood work was looking bad and I was switched to Humira (stopped the 6MP) just last week. I've only taken 4 shots thus far (not even done with the loading doses, that's 4 shots in two days) but I've already noticed that the mucus I had daily with every bowel movement is gone. The diarrhea is still there but I know its only a matter of time until its gone too along with the pain (plus it'll help with my arthritis pain).

I was diagnosed 21 years ago and the point is that over the years I've seen newer medications come out roughly every 10 years (sometimes less like the switch from Azulfidine to Asacol). Eventually Humira and Remicade will be old school drugs as well and there will be something better in the future. That's just how modern medicine works, it keeps improving until there's a cure. The cure may not be in our lifetime but we can hope and we can have comfort in knowing that we wont be on the same old meds for the rest of our lives because newer and better ones are being made right now.

Raise your hand if you'd like to go back to 60mg of Prednisone! Anyone?

The side effect list may seem extreme but I've never taken any any medication that was worse than Prednisone.
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