Can I say that Imuran kicked in?

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minnietoty
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Date Joined Dec 2010
Total Posts : 1569
   Posted 7/20/2013 3:57 PM (GMT -6)   
I got my blood work results and astonishingly my WBC was 6.9. I have never known it to be lower than 9. Higher was the norm. However, the HB level and Hemotacrit are low; while the RDW is high. I think that this means iron deficiency anemia.
Back to WBC, does this mean that Imuran kicked in? I started it on March 6, 2013. I was intending to ask my GI to increase it but do I still need this?
GERD, gastroduodenitis, ileocolitis, chronic proctitis and persistent mouth ulcers and fissures.
Current meds: Pentasa sachets 4g, Entocort 9mg, Nexium 40 x2, Pentasa, Ensure, Calcium and magnesium supplements, Imuran 150mg, pentasa enema, colifoam, budesonide enema, Zantac 600mg, Gaviscon 1x4
Pred 40 mg from Oct. 2010 till Jan.2012
Failed:Azathioprine, Methotrexate

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 5185
   Posted 7/20/2013 4:57 PM (GMT -6)   
Not on that slender evidence, no.

I would require both endoscopic and clinical evidence of remission before saying a med kicked in, eg it's clear on scopes and my symptoms have gone or are dramatically improved. But blood tests are almost meaningless. As an example, Remicade supposed lowered my platelet count according to my GI (high platelets can be a sign of a flare-up). But what did that mean when I wasn't symptomatically better and ended up in hospital with the worst flare-up of my life a month after starting Remicade?

Also, you've been on the Imuran for 4 months, so it should have reached full efficacy about a month ago. So it's not like you're still waiting for it to kick in, 'cos you're not anymore.

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 1569
   Posted 7/20/2013 8:21 PM (GMT -6)   
NCOT, thank you very much. I thought that the lower WBC would mean that I can now start to taper Entocort off. If I have a good memory, I'm similar to you in that I only respond to steriods. This slight descrease in WBC would mean for me that I can get rid of budesonide eventually even if this is going to take longer time. My reaction to meds is a delayed one. When I was put on pred, it took me 11 days for it to kick in. Same here. I read that Imuran should start its effect within 4-6 months and may be more. I failed before generic Azathioprine and I gave it the utmost chance of 7 months but no change happened to my high WBC then and symptoms did not subside. I was hoping that Imuran might have an effect as I'm starting to freak out coz of my prolonged use of Entocort. The ophthalmologist warned me against its long-term use and told me to have a check up every 3 months as I have severe eye dryness and he is afraid I might get either glaucoma or high eye pressure. Also, there was a post in which a fellow Crohnie mentioned that long-term use of Entocort caused her to get avascular necrosis and diabetes. I got reversible high blood pressure when I was on pred and expect it to recur w Entocort.
However, still I can't relate to remission. I haven't gone through it yet. All I know now is if I stay for a week w/o having the dull pain I used to have on a daily basis, this is an achievement for me. As I told you before, I'm not as courageous as you are. I will think of surgery only after I have exhausted all available medications.
BTW, did you manage to get a puppy. I have a kitten and I would recommend you get a pet. I can't live w/o her.
Take care :)
GERD, gastroduodenitis, ileocolitis, chronic proctitis and persistent mouth ulcers and fissures.
Current meds: Pentasa sachets 4g, Entocort 9mg, Nexium 40 x2, Pentasa, Ensure, Calcium and magnesium supplements, Imuran 150mg, pentasa enema, colifoam, budesonide enema, Zantac 600mg, Gaviscon 1x4
Pred 40 mg from Oct. 2010 till Jan.2012
Failed:Azathioprine, Methotrexate

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 5185
   Posted 7/21/2013 6:56 AM (GMT -6)   
I would just taper off Entocort anyway, but you know what I think about steroids. They're absolutely dangerous as a maintenance medication at high doses. Some people think Entocort/Budesonide is 'safer', but in the medium to long term it really isn't.

Honestly, you have already exhausted all available medications apart from the biologics. If Imuran didn't work the first time, it's not gonna work the 2nd, 3rd or 4th time. I must have gone on Imuran at least twice and 6MP at least twice, and neither did any more the second time round than they did the first.

Not being able to go on the biologics is an insurance thing, right? Can you not get your GI to describe your disease in such a way you are eligible for biologics? I think in the past you said something about not having ulcers visible to the naked eye - is that seriously non-negotiable? Not even NICE (the organisation which sets down the clinical guidelines for treatment in the UK) is that strict with its requirements. There's quite a grey area over what constitutes 'moderate to severe' disease and I wouldn't have thought it would be impossible to claim you had it.

Here's an extract from the NICE guidelines for the use of Infliximab in Crohn's disease:

For the purposes of this guidance, severe active Crohn’s disease is
defined as very poor general health and one or more symptoms
such as weight loss, fever, severe abdominal pain and usually
frequent (3–4 or more) diarrhoeal stools daily. People with severe
active Crohn’s disease may or may not develop new fistulae or
have extra-intestinal manifestations of the disease. This clinical NICE technology appraisal guidance 187 6
definition normally, but not exclusively, corresponds to a Crohn’s
Disease Activity Index (CDAI) score of 300 or more, or a
Harvey-Bradshaw score of 8 to 9 or above.


Nothing about ulcers in there. I remember my GI getting me up to a score of 9 on the Harvey-Bradshaw index. He wasn't lying, exactly, but I was new to his clinic and he didn't have a lot to go on, other than an incomplete set of notes from the previous hospital and my own garbled account of symptoms. I didn't even have to have a colonoscopy; he got me onto Remicade without any imaging tests.

Soz, know I've gone a tad off-topic here (a tad? >_>). But I don't think you're ready to consider surgery yet, but, more to the point, you don't seem ready to come off the steroids either. If I was in your shoes, I would kick up an absolutely massive fuss with the GI about going onto the biologics. You need to get off the steroids and either a) go onto a stronger drug or b) have surgery.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 5185
   Posted 7/21/2013 6:58 AM (GMT -6)   
Oh sorry, the puppy! I was so busy getting wound up I almost forgot about that <_<. I've been, by my standards, busy lately and so I haven't had much time. Even today I won't have much time as I've got to go out a bit later. But as from tomorrow, I'm going to start looking :p
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