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06-25-2012, 12:18 PM   #1
highlandsrock
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Low Platelet Count

Hello All

I've had Crohn's for 35 years and was on Prednisolone for the first 15 or so years. I wasn't happy about the possible long term side effects and so was put on Azathioprine (and Pentasa) as an alternative. For 7 or 8 years it worked well keeping me with few flare ups with little or no side effects. I thought I'd found the wonder drug combination but one day a routine blood test showed that my platelet count was dropping (thrombocytopenia). I had another test done a couple of weeks later and the platelets were even lower.

I went and saw my consultant and he concluded that it was most likely to be the Azathioprine causing the problem so I came off of it. He also said that, in his opinion, Pentasa didn't actually do anything so I might as well stop taking that as well. I then tried various other drugs with varying degrees of success.

I ended up have an ileostomy in October 2010 and was put back on Azathioprine to prepare for the surgery. My platelet count did improve for a while but , even though I haven't taken any Azathioprine for a while, my platelet count has dropped right down again and was sufficiently low in April 2011 for my reversal operation to be postponed because the surgeon would not take the risk.

Is anyone else suffering from this condition? Are there any treatments that can improve platelet count? Should I worry that it's low?

(Four weeks ago I was rushed into hospital have brought up a lot of blood and my consultant now thinks I may have PSC. But that's a subject for a new thread)

Regards

Nigel
06-25-2012, 12:29 PM   #2
Grumbletum
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Hi Nigel Just wanted to say a big warm welcome, and I'm really glad you found your way here. I recognise you from another place, a little bit closer to home I know how friendly and supportive you are 'over there' so I think you'll fit in just fine here.
I'm on Aza, but only since last July, and haven't had platelet problems til now. But I know others here have and they'll be along soon.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
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06-25-2012, 12:42 PM   #3
muppet
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My daughter was put on Azathioprine and developed a permanent platelet disorder "coincidentally" around the same time. The hematologist swears that the drug doesn't cause the disorder but it happened concurrently and she's had it ever since. Her official diagnosis is ITP. You may consider seeing a Hematologist.

You might also consider getting a new gastroenterologist if yours told you that ASA drugs "don't do anything." Sheez!!

It sounds like you came off of all meds entirely and ended up with a surgery..? I'd find a new guy in a hurry.
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06-25-2012, 02:52 PM   #4
highlandsrock
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Thanks for the welcome, I know when I'm amongst friends!

I did rather simplify my treatment story and wouldn't want to criticise the consultant I had at the time. I found taking or not taking the Pentasa made absolutely no difference to me. Reading other Chronies' stories you realise just how differently each person can react to the same drugs.

To be fair to my consultant we had known that surgery was inevitable (stricture in terminal ileum) and I asked him to try and delay it as long as possible as I had just started my own business and needed to get sufficient funds in the bank before stopping work for a few months. He managed to get me from 2003 to 2010 before surgery, which was pretty good going. In that time I tried Budesonide, Ciprofloxacin, Azathioprine (again) and finally Infliximab.

I have seen a haematologist about the low platelet count but he thought that there is a combination of factors causing the problem and no one treatment that can be used to combat it.

This has been further complicated by my emergency admission to our local hospital four weeks ago and the subsequent diagnosis of possible PSC...but that is another story (see Blog for details) and may or may not be Crohns related.

Regards

Nigel
06-28-2012, 01:11 PM   #5
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Your consultant was actually correct. Almost all (bar 1 clinical trial) of the clinical data shows that ASA drugs have no clinical benefit over a placebo.
06-28-2012, 01:12 PM   #6
muppet
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That's one hell of a placebo then, because I'd be dead without my Lialda.

I think you'd better cite some sources for that statement or take it back.
06-28-2012, 01:28 PM   #7
highlandsrock
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As muppet pointed out, that's some placebo. Something kept me stable for seven or so years. I thought it was the Azathioprine, maybe it was sheer willpower!

My old consultant is a "world expert" in Azathioprine (as he likes to point out) but seems in two minds as to whether it caused the low platelet count or not. Unfortunately (or maybe fortunately) I can't discuss it with him as I upset him a year ago when I told him I was transferring my care to another hospital. Hadn't realised how bad he had taken it until I met up with him again a couple of weeks ago when I was rushed into my local hospital. An interesting encounter to say the least!

Regards
Nigel

Living with Crohn's Disease
06-28-2012, 02:51 PM   #8
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Hey highlandsrock,

heisenberg isn't referring to Aza, it is mean't to be 5ASA.

Dusty.
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06-28-2012, 03:02 PM   #9
highlandsrock
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So it wasn't all in my mind!
06-28-2012, 03:31 PM   #10
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Hey highlandsrock,

heisenberg isn't referring to Aza, it is mean't to be 5ASA.

Dusty.
I still want citations. I've been managing my Crohn's with 5-ASA and prednisone for 29 years and will assure you that 5-ASA is no placebo. Maybe it's ineffective for refractive Crohn's but generally? I don't buy that at all.
07-01-2012, 07:48 PM   #11
David
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Mesalamine (5ASA, Lialda, Pentasa, etc) isn't approved for use in Crohn's Disease for a reason: it doesn't work that well in most people. Now, it does work for some and if you're one of the lucky ones, that's fantastic. But I always cringe when that's the only treatment people are on. Here's a writeup I did regarding an article that encompassed a lot of the studies.

Nigel, have they been monitoring your 6-TGN and 6-MMP levels? These are the metabolites of Azathioprine and could help determine why you're experiencing thrombocytopenia.
07-02-2012, 01:51 AM   #12
highlandsrock
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Hello David

Thanks for the response. I'm seeing me consultant 2 weeks today so I will mention the 6-TGN and 6-MMP levels to him. I was on a combination of Azathioprine and Pentasa for around 7 years until 2008. I then stopped the Pentasa and I haven't been on Azathioprine since November 2010 but my platelet count is still low - 72 last Friday. Would it be expected that the 6-TGN and 6-MMP levels would normalise or once the damage is done it is long term?

I was rushed into hospital on 28th May vomiting blood and my local hospital thinks I now have oesophageal varices linked to primary sclerosing cholangitis (quite a mouthful). Have got liver/spleen MRI scan this Thursday to investigate further. I'm wondering if these conditions are also linked back to Azathioprine or whether it is simply that I have a poor immune system and that's why I have Crohn's anyway. Unfortunately there is no simple answer!

Regards

Nigel
07-02-2012, 09:07 AM   #13
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I would expect those levels to normalize, yes. I thought you had restarted the Azathioprine thus my question about those levels. I apologize for misinterpreting what you said. If you're not on it, I wouldn't worry about asking your consultant about those levels.

Are you on any medications or supplements right now or are you in remission from the surgery and med free?
07-02-2012, 01:08 PM   #14
highlandsrock
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Hello again David,

Well that's a good question! I'm certainly not on any meds for the Crohn's at present and I may or may not be in remission. The colonoscopy I had last Christmas showed no inflammation and I was given Rutgeert's score of i0. The MRI scan at the end of April suggests inflammation in both the large and small bowels. The colonoscopy two weeks ago showed nothing as far as the first bend but the doctor couldn't get the camera to go any further. I'm awaiting the result of a calprotection test.

So, all in all, I'm a little confused and now for the last few days I've been getting a very localised pain that feels like when I had a restriction in my terminal ileum. I'm usually a very optimistic soul but I must admit that it is starting to get to me and I made the mistake, this afternoon, of reading up on oesophageal varices. Not a good idea!

Regards

Nigel
07-02-2012, 09:30 PM   #15
tonya
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did it ever make u feel like a fuzzy head
07-03-2012, 08:31 PM   #16
David
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Hey Nigel,

I was thinking about your thrombocytopenia tonight. Do you know if you have low neutrophil count and anemia as well?
07-04-2012, 05:40 AM   #17
highlandsrock
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Hi David

All my blood readings are "abnormal" or close to the limit. I have iron deficiency anaemia so have to take ferrous fumarate tablets. I've also just finished the 6 loading doses of B12 injections. The printout of my blood test results from the Friday before last shows :

Total white cell count - 2.2 (abnormal)
Red blood cell count - 3.8 (abnormal)
Haemoglobin estimation - 10.6 (abnormal)
Neutrophil count - 1.5
Lymphocyte count - 0.4 (abnormal)
Liver function test - all within correct range
ALT/SGPT - 38

When I saw a haematologist 15 months ago he basically said that blood is very complicated and it's difficult to pin down what is causing my problems! Not a great deal of help really.

Regards

Nigel
07-04-2012, 09:48 AM   #18
David
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I was heading in the B12 direction with my line of questioning That you had loading doses answers that It'll be interesting to see if that helps.
07-16-2012, 02:42 PM   #19
highlandsrock
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Just to close out these posts. I saw my specialist up in London today and got the results of the MRI scan on my liver. It showed no sign of primary sclerosing cholangitis but there is a blood clot which could be causing the esophegeal varices. I'm being referred to a liver specialist and a haematologist to sort this out and will probably need an upper GI endoscopy.

The calprotectin test also came back clear so no need to have another colonoscopy and no meds for the Crohn's at present.
07-16-2012, 08:24 PM   #20
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Wow. I know nothing about that kind of stuff. Best of luck with it! Please keep us updated and let us know if there's anything we can help you with.
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