Opinions on my latest GI visit

[lsgs]

Just looking for some opinions really, last time I saw my GI he asked me to go away and decide if I wanted to go on aza.

This visit he said that aza wasn't the way forward because
1) he believes my improvement on steroids has been due to the feeling of wellbeing they give you (this is despite my ESR going from 51 to 2 overnight and going from 12 BMs a day to normal for the majority of my course of steroids)

2) He said because my latest taper which was 30mg, tapering 5mg every 4 days, didn't work this means that aza won't work and also indicates that it was the 'feeling of wellbeing' that has made me feel better. I've been on pred 9 months now and personally I feel like it's losing effectiveness, but he says that doesn't happen.

3) I have had 3/4 faecal calprotectins raised, one was done when I was on a DMARD and that came back negative. He says these are probably false positives? How can you get 3 false positives?

His solution is to have a doctor come out and give me morphine if I need it (?!)

Any opinions on this?

 

[Jennifer]

The feeling of well being they give you? Steroids aren't sugar pills. For me personally Prednisone did start to either lose its effectiveness OR my disease was far too active/out of control where the highest dose my body could handle wasn't working anymore (along with other medications I was taking at the time which lead to my bowel resection).

Steroids are meant for short term treatment to help get inflammation under control and to help control inflammation while a new medication is added that needs time to start working. When used long term at higher doses (small doses can be used long term for other health problems like asthma etc) you increase your risk of even more health problems such as osteoporosis, vitamin D deficiency, cataracts, glaucoma etc.

Also tapering 5mg every 4 days when you've been taking it for 9 months is too fast of a taper and could be dangerous.

Aza and Prednisone aren't even in the same class of drugs so I'm failing to see how you improving with steroids means that Aza would not work.

In all honesty it sounds like this GI is in denial and simply doesn't want to put in the effort to getting you a concrete diagnosis. I'd want to see another GI even if this is already your second or the 25th one you've seen. If possible try to find one in your area who specializes in IBD if not Crohn's.

 

[Ihurt]

I am sorry you are dealing with this. I think what your gastro means as far as the prednisone making you feel better, is that prednisone can give people a false sense of well being, it is known to do that. That is why you always have to be on guard when taking it as an infection can sneak up on you and you wont even be aware of it due to the steroids masking things.

Now obviously the prednisone was working for you as you said it took you from going to the toilet 12 times a day to normal. Steroids do help with inflammation which is why they give it to people. I am also confused why your doctor said that Aza wont work for you?? I mean how does he know this, is he Psychic? It sounds like you may be in need of a second opinion here.

Having someone come out and give you morphine?? Are you in severe pain? I mean morphine would help with the pain, but would not really do much for the intestines in terms of healing. I think the Aza would be better to try. I think if you are not satisfied with this guy, look for another GI who will work with you on this.

Just looking for some opinions really, last time I saw my GI he asked me to go away and decide if I wanted to go on aza.

This visit he said that aza wasn't the way forward because
1) he believes my improvement on steroids has been due to the feeling of wellbeing they give you (this is despite my ESR going from 51 to 2 overnight and going from 12 BMs a day to normal for the majority of my course of steroids)

2) He said because my latest taper which was 30mg, tapering 5mg every 4 days, didn't work this means that aza won't work and also indicates that it was the 'feeling of wellbeing' that has made me feel better. I've been on pred 9 months now and personally I feel like it's losing effectiveness, but he says that doesn't happen.

3) I have had 3/4 faecal calprotectins raised, one was done when I was on a DMARD and that came back negative. He says these are probably false positives? How can you get 3 false positives?

His solution is to have a doctor come out and give me morphine if I need it (?!)

Any opinions on this?

 

[shamrock15]

Morphine would also likely reduce the number of bowel movements. The meds in the Aza class - I have used 6MP and am currently using aza - have done pretty well for me. If he is recommending not looking at these options, the only things left for him to recommend are really something in the remicade/humira line and surgery. I think Jennifer is right - if he doesn't treat this seriously, you might want to consider checking in with another GI.

 

[lsgs]

Thanks for the replies guys!

He is not saying I have improved with steroids (despite my blood results and faecal calprotectins supporting this), he is basically saying it's all in your head, and it's a feeling of wellbeing they're creating. He says the fact the steroids are getting less effective is a sign that it's all just the feeling of wellbeing steroids create, therefore aza wouldn't work.

I had put in a referral to another GI and I have an appointment tonight (yay!) I am so scared he is going to try to fob me off like this GI has. Hopefully he'll be a little more open minded to what is apparently a complex case.

Ihurt at times the pain is insanely severe. I can take 60mg dihydrocodeine and 1g paracetamol and it doesn't touch it. I was admitted at the weekend for severe pain, my BP was 150/100 and my pulse was 140 from the pain. It was pretty awful and took 3 days to settle at all

Apart from subjective things like the feelings of wellbeing, the objective marker for me is the bowel movements reducing and becoming normal, and non bloody, and the blood results and FCP correlating with steroid dose.

*sigh*