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Posted 3/13/2015 2:45 PM (GMT -5)
Anyone else get this??

I had some blood drawn at my iron infusion yesterday. My iron and hemoglobin are back to normal but my white blood cell count and neutrophil levels are in the critical zone. The nurse had to call my doctor right away. He said no leaving the house, wear a face mask, and ordered prednisone.

Honestly, I'd rather chop off my foot than take prednisone again.

I asked him if it's from my imuran or simponi but he doesn't "think" so. He said it's probably allergies since it's almost spring. Regardless, the last time this happened I was TAKING prednisone and imuran.

I need help!!!
Posted 3/13/2015 3:39 PM (GMT -5)
I don't mean to alarm you, but have you been tested to make sure it's not caused by something else (like cancer)? With your levels critical you are at VERY high risk for infection. Seems to me that pred would not fix whatever the underlying problem is though I think it can elevate your wbc temporarily so that may get you out of the critical zone.
Posted 3/13/2015 3:44 PM (GMT -5)
I asked him if it's from my imuran or simponi but he doesn't "think" so.

lol

Sorry to hear that bgirl. This article provides some suggestions for increasing count.

Best.
Posted 3/13/2015 4:07 PM (GMT -5)
I cant imagine it being anything EXCEPT the imuran causing your levels to tank. Its reasons like this that most people have to come off imuran (including myself). You have to be concerned about bone marrow suppression as that can be fatal. Im SURE your doctor is screening you for this, but double check.

In either case, prednisone does/can lead to neutrophilic leukocytosis which can help correct your neutriphil levels, but thats hardly a solution.
Posted 3/13/2015 4:21 PM (GMT -5)
I have cyclic neutropenia. My levels rise and fall in a monthly cycle. Haemotology have tested for everything and have found nothing horrible. They say that it could be due to the mesalazine or trazodone. Antidepressents and mesalasine are know to cause neutropenia. I am okay if my count drops to 0.5 as long as I am not taking azathioprine or having lots of infections. If I was to take azathioprine then they would give me GCSF to increase my white blood count.

Hope this helps you.
Posted 3/13/2015 4:58 PM (GMT -5)
I had it from 6mp many times. Actually, the whole time i was on 6mp, I was low or low-normal.
Posted 3/13/2015 5:02 PM (GMT -5)
Seems related:

Severe 6-Thioguanine-induced Marrow Aplasia in a Child With Acute Lymphoblastic Leukemia and Inherited Thiopurine Methyltransferase Deficiency
McBride, Kim L. M.D.; Gilchrist, Gerald S. M.D.; Smithson, W. Anthony M.D.; Weinshilboum, Richard M. M.D.; Szumlanski, Carol L. B.Sc.

Collapse BoxAbstract
6-thioguanine (6TG) is undergoing investigation for use in the maintenance phase of acute lymphoblastic leukemia (ALL). Just as with 6-mercaptopurine (6MP), it is be expected that 6TG would cause pancytopenia in individuals with inherited thiopurine methyltransferase (TPMT) deficiency. We report the first case of severe and prolonged pancytopenia caused by 6-thioguanine in an 8-year-old boy with ALL and inherited TPMT deficiency. Neutropenia lasted 67 days, whereas anemia and thrombocytopenia did not recover for 96 days. To obviate this life-threatening complication, clinicians should consider assaying TPMT activity before initiating therapy with 6MP and, particularly, 6TG in children with ALL.


https://www.healingwell.com/community/default.aspx?f=17&m=1627927

http://www.crohnsforum.com/showthread.php?t=29655

Neutropenic Sepsis - Thankyou 6-MP
6-MP Mercapapurine

A slightly unsuccessful choice of medicine for me. Please feel free to read my story and comment, sorry its long. Any success stories on fistula treatment would be great, its got me a bit down. Thank you - Michael

05th October 2011 following flare up over summer.
Started 6-MP

20th October 2011
Blood Test

02nd November 2011
Dr's appointment. Explain to doctor that I have flu like symptoms, been dosing up on parecetomol and lemsips etc. In addition I have some rather large ulcers. Dr reviews blood test results and everything is looking good. We both agree I should take these pills long term with regular blood tests.

06th November 2011
Nasty pain in my back side, I figured it's piles and carry on as usual, whack on the creams etc.

09th November 2011
My 30th birthday and my beautiful girlfriend wakes me up at 6am with two tickets to Rome! I'm delighted but flu appears to be worse. Hot air should do me good and off we go. (Beautiful city by the way).

10th November 2011
My back side is starting to hurt more. In addition I have a bruise on my ring finger on my left hand. It really hurts but I don't recall banging it or catching it. Very puzzled off we set for a tour of the collesium.

11th November 2011
Starting to limp, pain is getting worse. Never experienced piles like this. Had three showers in the day and night which helped. But my finger, wow, it has swollen and looked like it had pus under the nail. It hurt so much my head was throbbing and I begin to sweat. No evening meal and drinks for our last night in Rome. I feel so guilty and depressed that my partner had taken me here and I'm this ill. Who has flu for three weeks!!!??? She places a wet towel on my head and I ache myself to sleep.

12th November 2011
I'm in agony. It's the finger causing more pain than the backside. I find a badge (from my 30th birthday cards) and I take the pin from it and stab my finger. The relief was incredible. The pain not completely gone but still better than it was. I milk the thong and there's an awful lot of white/yellow stuff. We have breakfast and get ready for our flight home. As soon as we land we go to A&E and I'm given antibiotics for Paranicia (gypsies kiss). My back side still hurts but i don't want to talk about that too since I'm convinced its piles. The ulcers have spread to my tongue.

14th November 2011
Back in A&E on NHS Directs advise since flu symptoms have still not gone and back side has got worse. Junior Doctor and her trainer (senior doctor) inspect my back side. I talk him through everything. He tells me I need to go back to london and see my GP and get a blood test. He also tells me I should be very concerned (caring..). I go back to my partners (lives miles away from London and I'm staying at hers since my birthday). She has a wet towel on my head again. I also have what's called a perianal fistula. Great, so not piles.. why did the hospital not admit me then..

15th November 2011
Partner is getting very concerned. Skin is starting to go a yellow colour. My arse has never felt so much pain, I've broken bones that dont hurt this much. Phones a doctor in the evening and they agree to see me at 10:10 the following day.

16th November 2011
Doctor examines me. Actually listens to everything I'm saying. Wedmore I believe the village was in somerset (Dr Jackson I think he was - should be commended). Shows his concern and gets straight on to A&E. Bags packed and off we went.

16th-24th November 2011.
Underwent a blood transplant, 4 units in total (scared the life out of me). Multiple drips and syringes sticking out my arms. Antibiotics by the bag load. Anti fungal mouth wash to cure the Ulcers, lost appetite, unable to eat with ulcers. Day three operation under general anesthetic to drain abscess on the anus - shows the perianal fistula tract and seton put in place. I cried three times in hospital, twive from pain which not even morphine helped to relieve and once through fear. I've never felt so scared in all my life. I've joked to my mate in the past saying i will be dead before I'm 40, yet im lucky to only just break 30.. two other people died on the same ward as me, makes me realise how precious life actually is.

Diagnosis - Neutropenic Sepsis
Cause - 6MP Mercaptapurine

Are there any successful stories of fistula healing after a seton has been removed without having to have another operation. I hate this rubber band. its knocking my confidence.
Posted 3/13/2015 5:02 PM (GMT -5)
He didnt test anything except my cbc and iron. I got my prednisone to start today and im dreading it!!!

I personally agree with u guys that its imuran but my doc isnt convinced. He scared me into taking pred just because my levels are so bad. He said i could have a reaction to my next shot sunday if i dont start pred now.

I dont know if i should stop imuran on my own or what. I know he would be pissed but i dont wanna need prednisone all the time since i have osteoporosis already.
Posted 3/13/2015 5:22 PM (GMT -5)
I went to a hematologist for a while because i was doing so poorly with 6mp. I would get draws weekly... I was able to start and stop the med without having my remission end. Eventually things stabilized and my wbc was steady at 3.5 or so, which is still on the low side... I did lower my dose to a half pill daily. You're only on 25mg of imuran? That's already really low. :(
Posted 3/13/2015 5:31 PM (GMT -5)
Nssg, yeah its worrying me! The first time it happened was in july 2013. My levels have been ok since this last bloodwork. Are u still on 6mp?

Im also scared because i chopped off two fingertips on monday and i want them to grow back and not get infected! I dont want pred to mess up my healing. Uhhhh. Im stressing!!
Posted 3/13/2015 5:47 PM (GMT -5)
Sorry to hear that! only you really know your own body, and if you think its 6mp or Imuran than it probably is, I cannot imagine what else it could be.

This sounds like a really horrendous situation, and I hope you are able to make the right decision on what to do next. I always trust my own instincts now, as I am invariably right.
Posted 3/13/2015 9:18 PM (GMT -5)
I stopped 6mp a while ago. I kind if regret it because I had finally gotten to a dose where I was stable and in the therapeutic range without needing frequent blood work. Remicade didn't work for me so that's not an option... 6mp helped but I don't want to go through all that again to get back on it plus, who knows if it was helping, I had a bad flare up while I was on a therapeutic dose... Now i am just doing entyvio, uceris and apriso. I am doing uceris every other day and hope to stop it soon
Posted 3/13/2015 9:19 PM (GMT -5)
Totally rotten luck. I *hate* Prednisone and also would cut off limbs not to take it. It sucks that this happened on a Friday. You need a second opinion pronto. I would drop the Imuran completely and only half dose the Pred followed by a quick taper. Present in Urgent Care or ER over the weekend to get your blood monitored, wear a mask for sure. If you feel even remotely weak or feverish call 911. Totally suckie. Heart to you.
Posted 3/13/2015 9:53 PM (GMT -5)
I am betting it is the Imuran. Follow your gut instinct. Dr.s sometimes don't see the big picture. I would stop and get retested in a few days and if it is not the problem, you can always restart.

Take care!
Posted 3/14/2015 8:01 AM (GMT -5)
I dont know what to do. I think simponi is causing it and i take my shot tomorrow. My doctor is acting like it is no big deal so i hope im not being nervous for nothing. I left a voicemail on simponi's hotline asking about it since neutropenia is a side effect on the website.
Posted 3/14/2015 8:14 AM (GMT -5)
Joanna,

It is the 6mp causing it, you are not the first one to have come to this conclusion, nor the last. Others have had the same suspicion and validated it through tests.

Who is your doctor and what is his name?
Posted 3/14/2015 8:17 AM (GMT -5)
Oh bummer! I hate to read that you are gong thru this as I am just starting 6mp. I would stop immediatly it were me.

Be carefull and get well!
Posted 3/14/2015 8:43 AM (GMT -5)
I see dr binion at upmc presby in pittsburgh. He said it was fine to take the shot but the simponi hotline and walgreens specialty said to "exercise extreme caution" so now i dont wanna take it.

I looked at my feb 5 bloodwork and counts were fine. Took my simponi on feb 15 and now my counts are terrible! I might need to cut the dose in half.
Posted 3/14/2015 9:14 AM (GMT -5)
sorry for you latest blast of ass-kickin b girl sad

hang in there -
Posted 3/14/2015 10:50 AM (GMT -5)
UC is an autoimmune disease. I have it. I assume you do also. Auto immune troubles can manifest itself in other diseases also. One of them is autoimmune neutropenia [http://www.neutropenia.ca/about/types-of-neutropenia#autoimmunel] , I have both. My count does get as low as 0.5. It will alarm some dr.'s. If you take care of yourself you will be fine. Get your cbc done on a regular basis. At least every month. Stay clear of hospitals if you can. Keep hand disinfection lotion on you. Be very aware of what your hands touch and or cuts on hands. DO NOT touch face. I have dealt with this for near 40 years. Only had one issue where i thought screw this and did not follow my own advice(for about a year) and simple sore throat sent me to hospital.
If the count stays critical for long periods ask dr. to give you a prescription for neupogen, or he can inject it at office. I find it easier to use at home. It is injected into skin not vein. It is simple. How it works...it makes your bone marrow go into overdrive and produce excess wbc's . That will jack up your count for sure ad last awhile. How long? est to get weekly CBC for a couple of months to confirm what happens and how long to wait before next injection. On a side note this action in bone marrow can cause some discomfort in lower back or leg bone, or may not cause any pain at all. My point in posting is to let you know this can be dealt with and not to be alarmed. Any questions I can answer feel free to ask.
One more thing, try taking allegra or similar allergy med a few days before and after any treatment and see if it helps.

Post Edited (johnj) : 3/14/2015 9:53:53 AM (GMT-6)

Posted 3/14/2015 11:05 AM (GMT -5)
How low is it? If it's around three it should be ok. Three and a half is considered normal low...
Posted 3/14/2015 2:07 PM (GMT -5)
johnj, i am so sorry you have that condition on top of UC. i'd be so depressed if i had to add something else to my list... i get blood work done monthly right now but i do go back this thursday.

nssg, i only know the neutrophil count. it was .9 and the nurse said it was supposed to be 1.5-6.5. she said my wbc and basophils are critical but i didn't ask what it was. i go to a hospital out of my gi doctor's practice (just for infusions) because it is close to my house. when they faxed the results to my doctor, they didn't show up online like they usually do. i think they use a different system so.

anyway, ive decided to continue with the imuran and skip my shot tomorrow until i get my bloodwork done on thursday. seems like this dose is too strong for my body. explains why i've had absolutely zero UC symptoms since my immune system is not fighting back at all. i take 100 mg now but i might ask my doc about 50 mg (which im sure he will say is not necessary).

i dont even know if i will mention it to my doctor that i missed my shot and didn't start prednisone yet. he takes everything SO PERSONALLY if i don't agree with him.
Posted 3/14/2015 6:54 PM (GMT -5)
bananagirl,

I'm so sorry that this happened. I don't know enough about those meds to be helpful, but I hope everything improves soon. Hang in there!
Posted 3/14/2015 11:20 PM (GMT -5)
How you making out??

And it's your body after all.... Most likely you gave it a lot more thought than him really and made a better call. Though GI's tend to throw a fit when you change up their game plan lol.

Keep us posted on how you make out... Just be careful things don't get worse, so keep a close eye on your symptoms.
Posted 3/15/2015 1:56 PM (GMT -5)
thank you guys.

just waiting to do my shot until i see my blood work results on friday. maybe the 4 week frequency is too much for my body and i can make it 5 weeks. i will just play it by ear at this point.

if i start to have symptoms before i go for my thursday blood work, well, i'm not sure what i will do. i'll cross that bridge if i get to it. i'm just very uncomfortable taking prednisone again and being so suppressed that i can't even leave my house. if that's how things are going to go, i will just switch to entyvio since it doesn't affect my whole immune system.
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