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Posted 1/16/2012 6:04 PM (GMT 0)
I got a phone call from my GI's receptionist early this morning telling me to stop taking my Imuran. She wouldn't say why, but she made an appointment for me tomorrow afternoon.
My last blood test was last Monday. I believe my white cell count was too low. It's been low before and he mentioned Remicade. I refused. He'll push hard for it now.
I feel fine, other than irregularity, which I thought was caused by IBS.

This is the worst thing that could happen right now. I'm trying to prepare for an eye surgery in a few months and this pops up.

So what's next? I've read stories about this occurring to others. I know that some can go back on Imuran. Others couldn't and had to go on Remicade. I'm not going on that. Or Humira. I think I'm intolerant of 5ASA's, so I don't have much options do I?

sad most inconvenient disease ever.
Posted 1/16/2012 6:16 PM (GMT 0)

Sibby said...
I got a phone call from my GI's receptionist early this morning telling me to stop taking my Imuran. She wouldn't say why, but she made an appointment for me tomorrow afternoon.
My last blood test was last Monday. I believe my white cell count was too low. It's been low before and he mentioned Remicade. I refused. He'll push hard for it now.
I feel fine, other than irregularity, which I thought was caused by IBS.

This is the worst thing that could happen right now. I'm trying to prepare for an eye surgery in a few months and this pops up.

So what's next? I've read stories about this occurring to others. I know that some can go back on Imuran. Others couldn't and had to go on Remicade. I'm not going on that. Or Humira. I think I'm intolerant of 5ASA's, so I don't have much options do I?

sad most inconvenient disease ever.

 

Surgery or Remicade baby. Choose your poison.

Posted 1/16/2012 6:16 PM (GMT 0)
Sibby, I am in the same boat with 6mp. My WBC drops too low. I have stopped for a month and restarted without much of a problem but depending on how low your WBC is, your GI may or may not go this route. When mine was at its worst, I was neutropenic and I was told not to leave the house if it wasn't necessary. I saw some lab results that literally scared me. I am starting to see mine drop again and I am not sure what I will do at this point. My GI thinks Remicade is a better solution but for now, I've decreased the dose of 6mp to half and I am hoping I stay stable and my WBC recovers.
Posted 1/16/2012 6:18 PM (GMT 0)

notsosicklygirl said...
Sibby, I am in the same boat with 6mp. My WBC drops too low. I have stopped for a month and restarted without much of a problem but depending on how low your WBC is, your GI may or may not go this route. When mine was at its worst, I was neutropenic and I was told not to leave the house if it wasn't necessary. I saw some lab results that literally scared me. I am starting to see mine drop again and I am not sure what I will do at this point. My GI thinks Remicade is a better solution but for now, I've decreased the dose of 6mp to half and I am hoping I stay stable and my WBC recovers.

 

It's fascinating. I took Imuran for a while, for about 2 months, it didn't do diddly.. I was on 100mg, It's like my immune system pwns any medication thrown at it. I developped antibodies to remicade right after the first infusion.

Posted 1/16/2012 6:22 PM (GMT 0)
nssg, It scares you doesn't it? You're just thinking 'What next?!", and you don't know where to turn. I hope that he gives me that option to go off of it then try again. But he likes biologics, I don't.

Can we talk after my appointment tomorrow? I don't know how low my WBC is, but I guess it's low. I've never dealt with this, so I'm not sure what to do.

Dude, I was thinking that when I was writing this post. Everything is poison when it comes to IBD.
Posted 1/16/2012 6:30 PM (GMT 0)
Sibby, I'm sorry and I hope you find an acceptable alternative to you. Just a question - why is imuran okay for you and not remicade?
Posted 1/16/2012 6:32 PM (GMT 0)
Keep me updated Sibby. I know exactly how you feel. I'd prefer not to go on Remicade. My GI thinks it's a great option for me and perhaps she is right, maybe it would be the miracle drug and I can get off of some of these other medications but I don't want to have to go for infusions and be dependent on that type of treatment forever. Sometimes I feel really trapped. Generally, if your WBC is over 3, it's not too worrisome but it needs constant monitoring.

I am sorry you're stressed. Has your GI ever mentioned MTX? My GI was considering it for me but I didn't end up going that route. How is your UC?

My normal WBC was never high, it's always been on the low end of normal, it's difficult to lower it without ending up in the danger zone :( My UC isn't bothering me at all right now, it's so inconvenient to have to worry about the blood problems, I just want to enjoy the time when I am not flared up.
Posted 1/16/2012 6:33 PM (GMT 0)
Sibby,

I'm sorry, yes it's scary.

Have you given any thought to trying LDN - low dose naltrexone?

Posted 1/16/2012 6:36 PM (GMT 0)

notsosicklygirl said...
Keep me updated Sibby. I know exactly how you feel. I'd prefer not to go on Remicade. My GI thinks it's a great option for me and perhaps she is right, maybe it would be the miracle drug and I can get off of some of these other medications but I don't want to have to go for infusions and be dependent on that type of treatment forever. Sometimes I feel really trapped. Generally, if your WBC is over 3, it's not too worrisome but it needs constant monitoring.

I am sorry you're stressed. Has your GI ever mentioned MTX? My GI was considering it for me but I didn't end up going that route. How is your UC?

My normal WBC was never high, it's always been on the low end of normal, it's difficult to lower it without ending up in the danger zone :( My UC isn't bothering me at all right now, it's so inconvenient to have to worry about the blood problems, I just want to enjoy the time when I am not flared up.

 

Don't be scared of remicade. Some people swear it's their wonder drug. When I go there, people are all happy and smiles. And you've seen some posts on there that people take that and it changed their life for the better.

 

I am on it, but it doesn't do jack.... sad

Posted 1/16/2012 7:09 PM (GMT 0)
killcolitis, I'm more scared of Remicade than I am of Imuran. I don't want to go from one med to the next annd increase my risk of lymphoma. It may be a small risk, but i don't want to deal with cancer on top of this.

nssg, I'm in the SAME situation as you. My WBC was never high. It was always low. I have a monthly blood test just in case something pops up, instead of monitoring it every 3 months.
I've felt trapped since I've been on this medication, too. Salofalk knocked me on my rear quicker than UC, so my GI said I'm most likely intolerant. I can't go near steroids, I get horrible reactions. So sometimes we don't have any other option than the stronger meds.
No, he hasn't mentioned it, but I will tomorrow. My last scope showed no inflammation in my sigmoid. I only had a flex sig, so I'm not sure if I had any inflammation higher up.

I'm the same way when it comes to blood tests. I'm sorry you're having problems too. You feel great you aren't flaring and this pops up.


Inso, I was thinking of that, but wouldn't it be more beneficial if I was on 5ASA? I was keeping tabs on your LDN thread lately, and I thought that was the general thought that it would be better if you used the drug in correspondence with another drug. Unless I'm wrong, lol.
Posted 1/16/2012 8:03 PM (GMT 0)
Sibby, I hope your GI is open to working with you to find a solution. Have you ever tried any antibiotics? I know they are tough to accept since they could make our situation worse but I really want to try the triple antibiotic combo. LDN seems to be doing wonders for some of the members on the board and I would be totally open to it but my GI is not. I also am not sure about taking LDN with the other drugs I am on. I'd prefer to try to get off of some of th eother meds before I consider LDN. If I am forced to go off 6mp, I think it would be a great option. I do drink alcohol which I believe I would have to quit with LDN but it's worth it for remission. I only have a drink here and there, no big deal.

I have been getting bloodwork every 2 weeks for a while. It's such a pain. I have completely gotten over my fear of needles. I have never been able to go more than a month without having blood drawn.

How long have you been on Imuran? Are you in the theraputic range?
Posted 1/16/2012 11:55 PM (GMT 0)
I hope too. I prefer to stay away from antibiotics, because I strongly believe that they were a cause of getting UC. I was on them a lot when I was a toddler and child. I'm just hesitant, you know?
I would open to LDN too, but my doctor didn't even know what it was, let alone prescribe it to me.

Blood tests were never a problem. I did the usual once-a-week in the first month, then once-a-month afterwards. And congrats on beating your fear! I've never been afraid of them. I once told a nurse she was putting my IV in wrong. haha. Being sick a lot made me used to needles.

I've been on Imuran for 1 year and 10 months, approximately. Ironically, I was going to get tested to ensure myself I was in the theraputic range when this occurred. My weight hast fluctuated lately in the last year so I'm not sure if I'm on too much Imuran.

But he's all for biologics. He tried to convince me that Remicade would be more beneficial to me than anything else. Saying that there is a high success rate with it. We know it isn't.

Do you sometime feel like smacking your GI? I feel as if my research on the drug is not proven, or satisfactory, in his eyes. I have sources from all of you. I have access to new links, and sometimes it still isn't enough for him.
Posted 1/16/2012 11:58 PM (GMT 0)
Sibby,

That seems to be the great thing about LDN, because it is an immune system regulator, it has the ability to interact with other drugs without disrupting them, the only contra-indications to LDN are: alcohol and opiates. Unfortunately those 2 work on the same cell receptors as the LDN, therefore rendering it ineffective.

There are many on this forum who started on LDN while being on 5asa, prednisone, and even biologics and have gotten very good results, enabling them to lessen their dosages of the other meds until they are totally weaned off of them.

Would you be willing to try it? You have so much to gain from it ...
Posted 1/17/2012 12:43 AM (GMT 0)
Inso,

I would be willing to try it. But the cream may effect my skin. There is the pill form, correct?
Posted 1/17/2012 12:24 PM (GMT 0)
Sibby,

LDN ...But the cream may effect my skin. There is the pill form, correct?

Yes, there's a pill form, but be careful with fillers. I would suggest you only get the one with sucrose filler, it's the only one that's hypoallergenic and has the fewest problems with it. Don't get: lactose, slow release, or avicel fillers.

Why would you think the cream would affect your skin? You would rub a small amount on the area of your forearm, just above the wrist, where the skin is the thinnest and where all the veins show, and once it gets absorbed it's gone. In the morning, you'd wash the area off of any residue, adn that's it.

Here's the link for  finding a doctor, if you don't already have one. Drop down the LDN box, then your state, and city:


http://www.ldnscience.org/find-a-doctor/search

Posted 1/18/2012 3:09 AM (GMT 0)
Thank you Inso :) For the non-state people, is there a doctor I could find in Canada that would possibly prescribe it?

I've had sensitive skin since I was a baby, most creams I can't use because I get rashes. I just wanted to make sure if there was another option other than the cream.
Posted 1/18/2012 3:13 AM (GMT 0)
Update

My doctor is keeping me off Imuran for a month then reintroduce it at 50mg daily. I'll be having weekly blood tests to check my platelet and WBC.

My WBC was 2.8 and platelet 137. He didn't want the medication to affect my bone marrow.

So for the month I'll be watching my stools closely and continue with my diet that doesn't bother my UC. My doctor said I can phone to make an emergency appointment if I start seeing symptoms.
Posted 1/21/2012 6:14 AM (GMT 0)
That's too bad Sibby. Mine is headed there again, I will probably have to stop 6mp again. I am down to 25mg. I have stopped a couple times and I didn't have any problems with my UC while I was off the medication. I hope you don't have any problems either.
Posted 1/21/2012 1:43 PM (GMT 0)
Sibby,

So what happened with your pursuing LDN?

Posted 1/21/2012 7:46 PM (GMT 0)
     My GI doctor pushed Remicade too and when that failed, Humira (which failed also).  You know why, don't you?  They get kick backs from the drug companies and I know that for a fact.
Posted 1/22/2012 12:08 AM (GMT 0)
Christine1946,

They get kick backs from the drug companies and I know that for a fact.

 

Thank you for telling it like it is. Too many people think their doctors are acting in their best interest...haha


Posted 1/22/2012 5:30 AM (GMT 0)
nssg, I hope I'm lucky as you have been. And I hope you are well if you have to stop again.

Inso, my GI doesn't even know what LDN is. Wouldn't prescribe it. I would have to look into it with my pharmacist to see what my options are.

Chris, I've known for years as you did, before I got ill. I don't want anything higher than Imuran. I told him that. He's still pushing it. He even said no one has been diagnosed with lymphoma while on Imuran or any biologics, just RA patients. I saw the report and wanted to smack him with it.

Thankfully. I have a great family doctor. I scored on that at least.
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