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GP says...naw don't head to the biologics yet--sorry whining again

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Crohn's Disease
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Posted 6/2/2016 12:16 PM (GMT 0)
Those of you that have been on this site a while probably know that I have fought to use the least meds for the longest time. With the RA making stairs harder and harder, I finally started thinking about Humira. With all of the new dx and stuff happening, I had a follow up with my GP (whom I usually love) to get a big picture of what to do now. I walked away with a brushed off feeling...he walked in and I smiled so he thinks everything is good if I was smiling. I told him about the joint pain and the cane for stairs at home---no you don't want to get into those big biologics unless it is really bad. Wait that was what I was saying before and everyone argued with me. I am so confused. I am left with just live with everything again....if I ask for help, I am a hypochondriac---if I decline something I am a difficult patient.
Frankly, my doc's office is part of the giant teaching hospital in town. I can almost watch him run the corporate speech through his head before he talks to me. This is not what he is...but I think he is being pushed down that road. The thing is...almost every doc and specialist is part of that big corporate machine. The really sad thing is...I am trying to get a job with that giant hospital. sigh...the odd circles of life.
Going to get a banana in the cafeteria now.....bad potassium lack cramps last night...
Posted 6/2/2016 2:29 PM (GMT 0)
Hey Habs, do you have a really good internist or family doctor? The reason I ask is this persona can become your advocate for these situations. and if need be also provide better explanations of why the specialist is pushing back. or, suggest another specialist. I have found that my internist is by far my best go to doctor and in fact she talks to my wife frequently about what is going on with me. just something to think about on how and who to use to create that inner circle to protect you.
Posted 6/2/2016 2:34 PM (GMT 0)
GPs are clueless about Crohn's in my experience. There are probably exceptions to the rule, but so far I've not met one. In short: I would not go to a GP about anything Crohn's-related unless I had absolutely had to. When I wanted to go on 6MP I contacted my IBD nurse, who got me an appointment with my GI 'cos she couldn't prescribe it herself. Nor can a GP though. They can't prescribe biologics either. (At least this applies to the UK...)

I could be wrong, but I think because GPs can't prescribe these powerful meds for Crohn's, they are more likely to downplay them. Basically you ought to chalk this one down to experience and make an appointment with your GI to discuss going on a biologic.

Edit: Am I wrong? Thought even in the US a GP was a general practitioner and not a specialist? If I am, my entire reply has been rendered entirely useless.

Post Edited (NiceCupOfTea) : 6/2/2016 8:37:15 AM (GMT-6)

Posted 6/2/2016 3:46 PM (GMT 0)
NCOT, not sure if you are wrong or not. But, I am not saying the GP would write the prescription, but they they can be your advocate to find the right specialist for you. They are suppose to manage your overall being and if you are not liking your GI, the GP should be able to help find a new one. Just because you are a specialist doesn't make you are the patient automatically work well with the specialist. we all have different personalities and ways to connect. Find the one who can connect with you. yes a specialist in IBD is what you want and you Family Doctor or Internist should help you find the right one In the USA family doctors or internists are very good and the ones who are board certified. are usually the best I also know that i have a very special internist who has basically kept me alive by getting me to the right dr and making sure i got the right care. I went through 4 different cardiologist with her until i found one i liked. BTW, my internist for the past 9 years is ranked in the top 100 doctors in the state of North Caroline. I know live 6 hours away from her, but she is still my main doctor. I have a local family doctor who takes lab orders and such from her. He has been great to work with as well. you just need to find the right one.
Posted 6/2/2016 5:00 PM (GMT 0)
It's a big decision. But I as a patient think the decision should ultimately be yours, JMHO. Would your RA doctor be willing to pair with your Crohns doctor and coordinate it? Here's my last advice based on my own experiences, some times the quality of life you gain is what makes it acceptable. Does that make sense to you? I was terrified of remicade, humira and entyvio. But all three gave me back some semblence of normality that made it worth it to me. I'd rather be able to live the life I have and not suffer through my medical issues just in case a med causes side effects.

That said. I wish you luck and hoping you get some relief soon.
Posted 6/2/2016 5:50 PM (GMT 0)
well said!
Posted 6/2/2016 6:08 PM (GMT 0)
NCOT and mirowpl...yes GP is a general practitioner. I went to him because he is usually very consultative at taking care of the whole body, as opposed to just the disease a specialist focuses upon. With so many new parts of me falling apart, I wanted to talk getting me well all over. He is also very much an internist too so that helps on the gastro side and often is one of the training docs for new docs because of his bedside manner (he was one of the guys that did training for my GI doc).

The problem is he seems to be more automaton than listener due to corporate requirements...so I am not sure "I got my moneys worth" so to speak.

lamb...totally agree with you. Mostly wanted to see what he thought and see if I should see a rheumy again (the last one was a jerk so thought I might have a discussion on a new one...nope). I have another appt with him in 6 months---he does like me to check in more often in case something is up so he still cares I guess. I am going to see what restarting the B12 does, and make a list and put it in front of him next time. Maybe I'll fake cry so he takes me more seriously (half joking there)
Posted 6/3/2016 12:47 AM (GMT 0)
NCOT, to answer your question, a PCP can prescribe anything that a specialist can. They just typically choose not to because they feel like they don't know enough about the specifics of it since they weren't trained in-depth about it. But I've had my PCP prescribe things I've run out on that my specialists usually take care of. So a PCP could totally prescribe a biologic, but I can't imagine they would feel comfortable doing so unless my GI was incommunicado and I had run out of refills of Humira or something (if I was on Humira).

I think seeing a rheumy is a good idea. And seriously, fake cry. I intentionally don't wear makeup or do my hair when I go to the doctor when I feel crummy. Otherwise I get told how great I'm looking and I automatically begin to feel stupid!
Posted 6/3/2016 3:00 AM (GMT 0)
I so wish there could be a flag in my file for all the doctors that told them if I said I was in pain or something was bothering me then it's big deal! I always feel like a do a horrible job of making them understand what's going on.

On the other hand, I've cried the last two times I've seen my GP so now she things I'm having big anxiety issues when really it was just a little anxiety and a lot of entocort playing havoc with my emotions.

I'd follow up with the rheumy. I hope you can find some relief.
Posted 6/3/2016 4:43 AM (GMT 0)
One, I agree with NCOT that primary care doctors in general have very little knowledge when it comes to Crohn's disease and its treatment. Heck, even many gastroenterologists don't know all that much about treating it.

I would also ask you why wait to take biologics if your disease is bad enough to justify them? Research has shown that they are less effective if you wait *too* long. In other words, while you're waiting for your disease to get "bad enough" to convince you to start a biologic, your disease is doing irreparable damage that can't be fixed by the addition of a biologic. Of course, you don't want to start one if your disease is mild or in remission, but if you have active disease, why wait?

If you have arthritis along with your Crohn's, all the more reason to consider a biologic, or at least an immunosuppressant like imuran, 6mp, or methotrexate. And see a rheumatologist, yes.
Posted 6/3/2016 5:59 AM (GMT 0)
I don't think you should wait 6 months to see your PCP again. Call and specifically ask for a referral to to a new rheumatologist. As far as biologics, that is a discussion you should have between the rheumy and GI. Primary care docs or GP's often are good for referrals to specialists or to care for preventative care. My internist is a nice guy, but knows very little about Crohn's, and his advice about biologics would most likely be completely useless if you ask me. Sorry this has all been so difficult for you!
Posted 6/3/2016 4:14 PM (GMT 0)
scifigal - Thanks for the explanation. To elaborate a bit on my previous answer, a UK GP can prescribe immunesuppressants, but they are not allowed to make the decision to start them - only a specialist can do that, then the GP takes over the job of prescribing them. (Sounds simple, but 2 months after starting 6MP I still don't know if my GP will be able to prescribe me next month's prescription.)

I'm not sure if there are any exceptions to the rule, i.e. some diseases GPs can prescribe immunesuppressants for. For chemotherapy agents, I suspect not.

Re beave's post: that is exactly what happened to me and which is why if 6MP doesn't work, I'm going to press for a biologic ASAP. I suspect funding-wise I'll have a fight on my hands but I'm up for it: if they deny me funding 'cos of my postcode I will be spitting blood. (I absolutely refuse to transfer to my nearest hospital because I used to belong there and they were appalling. Messed me around for 2-3 years and had a policy of only giving 3 doses of Remicade, which in the end I didn't even get - the doctor told me quite bluntly for a doctor that there would be no point, as 3 doses wouldn't do anything for me. Also said something about not wanting to make the narrowing any worse, I think...)

No one wants to be on these meds, but if you've got active disease which nothing else is controlling, there's no point in waiting. Unfortunately waiting is all the NHS ever wants to do.

Sorry, I have a feeling I digressed a bit there... :-/
Posted 7/16/2016 5:21 PM (GMT 0)

mirowpl said...
NCOT, not sure if you are wrong or not. But, I am not saying the GP would write the prescription, but they they can be your advocate to find the right specialist for you. They are suppose to manage your overall being and if you are not liking your GI, the GP should be able to help find a new one. Just because you are a specialist doesn't make you are the patient automatically work well with the specialist. we all have different personalities and ways to connect. Find the one who can connect with you. yes a specialist in IBD is what you want and you Family Doctor or Internist should help you find the right one In the USA family doctors or internists are very good and the ones who are board certified. are usually the best I also know that i have a very special internist who has basically kept me alive by getting me to the right dr and making sure i got the right care. I went through 4 different cardiologist with her until i found one i liked. BTW, my internist for the past 9 years is ranked in the top 100 doctors in the state of North Caroline. I know live 6 hours away from her, but she is still my main doctor. I have a local family doctor who takes lab orders and such from her. He has been great to work with as well. you just need to find the right one.


Who is your doctor if you don't mind me asking? I was trying to find a way to direct message you or communicate with you but I'm new as of today to this forum. I saw you mentioned Dr. PEvy I believe? I wanted to know how you liked him and if you've seen other GI doctors at unc ? I have heard of dr Kim isaacs who treats my friends mom, I've been googling reivews of doctors .. I just don't want to waste my time or money. I just spent over 3,400 out of pocket for them to rx me levsin and only rxd that because I had to ask for something and now since that does nothing for me they want to send me to Duke but I was trying to find either Duke or unc top doctor who listens and isn't arrogant. Thanks so much!
Posted 7/16/2016 10:18 PM (GMT 0)
In regard to GP's, I've found my best course is to always start educating my primary doctor (GP or internist) about IBD from the first visit. I always know more about it than they do, so I try to share with them. When they try to prescribe an antibiotic, I remind them that because of my IBD, I will have severe diarrhea with any antibiotic and request lomotil be prescribed with the abx. Most of them don't really like to prescribe Lomotil, so the will often back off on the abx and try another way.

Remember, they probably get less than 1/2 day of training specifically on IBD, whereas we've had years. I've even had to train a couple of GI's during my course through this thing.
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