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01-11-2012, 03:24 PM   #1
Terriernut
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Rut row!

The IBD nurse was chasing me!! (sadly it wasnt a nice looking man...no) Apparently when they put me on 100 mg of 6MP and I did my first blood work at the higher dose, it didnt go well with the results.

She wouldnt give me the results...just told me to stop for a couple of days and then try the 50mg again. She DID say my WBC was shot, my red blood cells had gone "completley wonkers" and then said "umm..how do you feel".

Well, I have awful body aches, my heart feels like exploding when I hit the stairs, I'm pale as death, even my fingernails have no colour. My head beats to my heartbeart.

Hmmm...think I'm in trouble? What the hell is going on? How can I get my counts normal again, and what does this mean for future 6MP use. And why wouldnt she give me the blood count numbers? (are they sooo bad???)
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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01-11-2012, 03:48 PM   #2
Mountaingem
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Hi Terri, isn't that the most annoying thing-the nurse calls with results and yet won't actually TELL you the numbers??? HUGE peeve of mine, too.

As bad as your feeling, see of the doc will admit you to the hospital, you definitely need some intervention with that white cell count, and the effect it's having with your heart. Maybe you picked up an infection and all of it is bad timing? I think go to the ER, ASAP.

Keep us posted, and hang in there!
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01-11-2012, 04:04 PM   #3
Terriernut
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Oh Jeanette...I worked all day today...and for the past two weeks with feeling this way. (I'm a glutton for punishment) Nurse Tracy would've told me to come down if it was that bad. She seemed very worried, but not worried enough for admission. She said it would correct itself...effentually??? Erm? I guess once the 6MP gets out of my system. But I dont know how long that takes. I think the same as AZA? But I dont know how long that is? And I'm worried because if 6MP or Aza isnt for me, then I guess its Remicade or Humira?

Oh dear.
01-11-2012, 04:34 PM   #4
Mountaingem
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Terri, there are ways they can slowly increase your dose over time to try and trick your body into accepting it-don't give up too fast on it. IMHO it won't resolve itself, and even if it does, the side effects need to be addressed to see if anything else might be wrong.

I know how much it sucks to have to go to the ER, having just made a trip there myself... Your call but try not to tough it out too long, K? You deserve to feel better and get some answers.
01-11-2012, 04:37 PM   #5
Artificial
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Hi Misty,

Bit weird they wouldn't give you the actual results!

Hope you feel a lot better soon, I know how awful it can be to work when feeling so rough!

xx
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01-11-2012, 04:39 PM   #6
Terriernut
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Its Misty actually!

I have two days off now, it's my weekend. I'm ringing nurse Tracy to ask exactly what my numbers are. I dont feel that bad actually. (I mean the last time I went to hospital I had a perforated bowel and refused morphine..duh) But I know folks have to go off Aza and 6MP for surgery and usually its a week before. So I would think a week would do it??? Obviously if I feel worse I will go. But A&E at the Luton and Dunstable hospital is cringeworthy.

Misty
01-11-2012, 07:02 PM   #7
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I was on Imuran, then mercapturine and went straight to my liver. Just recently my Gi asked if I have been on AZA, no but I didnt tolerate other immunosuppressives and I declined. It made my right upper area feel really bad. Hope you get off it, asap. Hugs my friend!
01-12-2012, 04:25 AM   #8
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Hey Misty,

It shouldn't take Imuran long to exit your system and the numbers to improve, can't tell you exactly how long how for the blood numbers to improve though.

I have read studies that indicate that having issue with either 6MP or Aza doesn't mean you will have the same issues when you go to the other one. If the dosage seems to be what is putting you out, there is always the option of lowering the dose by introducing Allopurinol.
Biologics would be the next step.

Good luck hun, I hope you are on top of things again soon!

Dusty.
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01-12-2012, 04:38 AM   #9
Terriernut
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Got my numbers from Tracy the IBD nurse:
WBC 2.3 Normal=4 to 11
Red blood cells 9.4 Normal =11.5
CRP 3.9 Normal 0
She says my bone marrow is being quite affected. She's hoping I can tolerate this drug.

Last edited by Terriernut; 01-12-2012 at 05:39 AM.
01-12-2012, 05:27 AM   #10
Artificial
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What are the normal levels meant to be for white and red blood cell counts?
Are they going to be doing weekly blood tests when you go back on it to monitor it closely? xx
01-12-2012, 05:41 AM   #11
Terriernut
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I edited to put the normal scores next to my abnormal results. Sorry!
01-12-2012, 10:32 AM   #12
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Hi Terriernut

Hope that you are feeling a bit better, I have had the same problems with both drugs aza at first and then they put me on 6MP which did the same thing to me as aza and I have not worked in 10 weeks due to all the probs its caused as well as the dam pred im taking. Make sure they understand that your not feeling well the ibd nurses know quite a lot but my gp thinks its all in my head. I understand about not wantingto go to A&E i have the same problem at my local hospital, as I am not treated by them they not know wha I have had done etc at the other hospital. Have they said they are going to try MTX? I have just started them things crossed. Take care
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01-12-2012, 12:55 PM   #13
Terriernut
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They are going to me back on the 6MP but back to the lower dose of 50mg that I was on before. They will test in one month, after I restart the drug.

I was hoping this would be the drug that would do it for me long term so I can have Stan reversed this year. If I have to go on the stronger meds, I wonder how I could ever afford to go back home to the states. Oh well. If they ever kick me out of the UK I'm up shit creek. Oh wait, I do shit creeks!

I was just hoping that THIS drug would be the one that makes my poos go plop! Silly me.
01-12-2012, 01:21 PM   #14
DustyKat
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So you will go on the 6MP and wait one month before they do bloods? No way! I know it is a lower dose and what was tolerated before but I still wouldn't be waiting a month for bloods to be drawn. Just out of curiosity, when they bumped you to 100mg how long was it before you had bloods done?

Keep in mind the Allopurinol combination if it looks like you will tolerate 6MP at lower doses.

Dusty. xxx
01-12-2012, 01:27 PM   #15
Terriernut
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That is what they want me to do. But I have the blood slip here now. So I will wait two weeks once I start back on the lower dose.

They wanted me to wait two weeks for the blood tests, but it ended up being 3 weeks because of the xmas holidays. So if they think I'm waiting that long again....wrong!!!!

Will you be my nurse instead?? I am not certain about the allopurinol/6MP combo, it's never been mentioned to me before. Will it make my poos go plop??
01-12-2012, 01:36 PM   #16
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Phew, I would be going sooner too.

Yep, I will but we will have to have a long distance relationship. Do you think it will survive??

Hmmm, maybe they will go plop! I'm not sure of the reduction with 6MP/Allopurinol combination but I imagine it would be the same as Aza. The Aza has to be reduced by half to three quarters when Allopurinol is added.

Dusty. xxx
01-12-2012, 01:47 PM   #17
Mountaingem
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So sorry on the low numbers! A friend of mine takes 6MP ans she takes 2000mg of vitamin c when her white cell count is low, she hardly ever gets sick. Take extra care with washing your hands, avoiding sick people, etc. Another friend of mine who has AIDS gets medication when his WBC count is low...I still think the doc could do something! Good grief, you can't just keep on like this!
01-12-2012, 01:54 PM   #18
Terriernut
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They said that my blood counts would normalize???? I am dealing with not the very best folks to be honest.

If there is a drug I can take to speed up the process, I'd happily take it.
I wonder what I can do to improve my blood counts? I am happy to take lots of vit C. I went out and got some liver pate to help with the red blood cells, or I HOPE that helps. (me nooo like liver!)
01-12-2012, 02:28 PM   #19
Mountaingem
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Hmph! Red wine will raise red cell count, as will organic grape juice (Paul Newman). Whey protein always helps as do beans, lots of red meat (I mean everyday, Puma-type red meat consumption lol).

As for white cells, well I'm always trying to lower mine. But if you were able to speed up getting the extra medicine out it might help. Like green or hibiscus tea, something that makes you tinkle, tends to help flush excess medicine out.

Feel better Misty! Sorry I thought you were Terri for so long
01-12-2012, 02:31 PM   #20
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Dont worry! Misty-Eyed gets called Misty all the time, and her name is Michelle!

I will try all your suggestions. The red wine sounds particularly promising!
01-13-2012, 07:19 PM   #21
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Hi, I am in the UK (Leeds) and have just come out of hospital for the 4th time in 8 months.
I didn't get diagnosed with crohn's until my 3rd admission last November.

I was on Prednisolone, decreasing the dose at the same time increasing AZA over 3 weeks to 150mg.

At the 3 week mark I became ill again with chills, high temp, headaches, rash, itching and a rapid heartbeat.

I went into hospital again on 1st Jan and they took me of the aza and back on full dose of Pred, beta blocker and colestyramine, I was in 8 nights.

My symptoms have settled down at the moment but I have to make a choice before I go back as an outpatient whether to go on methotrexate or infliximab or op.

I think it's a post code lottery whether you can get infliximab because of the high cost but I think that's what I will go for.
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01-22-2012, 03:49 PM   #22
Terriernut
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Last Tuesday, I started the 6MP again at 50mg. I've not gotten any better. Rapid heart beat (I cant get up the stairs for heavens sake), chills, horrible fatigue (I am splitting the dose) and itchy. I havent had my bloods done since they chased me down for my bad ones. I was told to go back to 50mg and wait a month to have them done again!? I also feel like I'm fighting from catching the flu. Muscle aches, headaches, feverish. Meanwhile, the big D continues. No help there! Thankfully I have Stan!!! I still look like a starving vampire.

I'm insisting on getting my bloods done over the next two days. This isnt working for me. Maybe I need a different drug or allopurinol to add to it or something! This weekend, (working both days) I have not been doing well! As I work with the general public, having no immune system isnt doing me any good!
01-22-2012, 03:53 PM   #23
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oh thats rubbish for you! I would definitely not wait a month to have bloods done again after what the count was last time.
Obviously doesn't help that you worked all weekend either. Hope you have a good rest tonight!! xx
01-22-2012, 04:01 PM   #24
Terriernut
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Hi, I am in the UK (Leeds) and have just come out of hospital for the 4th time in 8 months.
I didn't get diagnosed with crohn's until my 3rd admission last November.

I was on Prednisolone, decreasing the dose at the same time increasing AZA over 3 weeks to 150mg.

At the 3 week mark I became ill again with chills, high temp, headaches, rash, itching and a rapid heartbeat.

I went into hospital again on 1st Jan and they took me of the aza and back on full dose of Pred, beta blocker and colestyramine, I was in 8 nights.

My symptoms have settled down at the moment but I have to make a choice before I go back as an outpatient whether to go on methotrexate or infliximab or op.

I think it's a post code lottery whether you can get infliximab because of the high cost but I think that's what I will go for.
Sorry I didnt see your reply before?! I hope that you can get infliximab! I doubt Luton and Dunstable will give me much of anything! Probably hope I die and get off their costs! How are you feeling now?
01-22-2012, 04:03 PM   #25
Terriernut
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oh thats rubbish for you! I would definitely not wait a month to have bloods done again after what the count was last time.
Obviously doesn't help that you worked all weekend either. Hope you have a good rest tonight!! xx
I work every weekened and bank holiday...WTF am I doing? Anyway..I'm not waiting a bloody month! Obviously me and 6mp dont have a happy 'working' relationship. Something else will work!!! I mean, I already have a stoma dont I? They can at least give me something to keep me from flaring???? I would like to kill Stan the Stoma and Ollie the hernia off someday after all!!!
01-22-2012, 05:18 PM   #26
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Did you get your bloods checked before you restarted. You should have. If not , speak to your gp. You should really get them checked weekly once you restart. Monthly is unsafe if you have had low counts on it. Tell them to check the BNF!
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01-23-2012, 12:34 AM   #27
Mountaingem
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Please go to the hospital Misty-you can all your labs done and get your answers fast. Plus that rapid heartbeat and chills is nothing to mess with, I know you hate the hospital just like the rest of us but it's time.
01-23-2012, 04:04 AM   #28
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I agree with getting seen ASAP Misty, as in today. You need to have have your bloods drawn as your symptoms are not abating, perhaps you should be off the drug altogether as opposed to having been dropped back to a reduced dose.

Good luck hun!

Dusty. xxx
01-23-2012, 04:14 AM   #29
Terriernut
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I am listening. I've rung in sick. I've left a message for the IBD nurse. I am going to hospital to have bloods drawn. I am trying to be a good Pigmy.
Shocking

Thank ya'll.
01-23-2012, 04:16 AM   #30
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We know you are hun!

We love ya Misty and hate seeing you hurting.

Dusty.
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