Updates on My Current Flare

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Jennifer

Jennifer

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Rather than bump my old thread about me being in the hospital I decided to make a new update thread with a far less scary title. Don't want anyone thinking I'm still in the hospital. :tongue:

My GI called me yesterday saying that my CRP has gone up and is getting a little high. Its 59.63 from last month which was under 10. :voodoo:

So there's a NEW new plan for treatment. :tongue: Or maybe this is the new new new one. It keeps changing. He wants me to stay on Entocort (dammit, I've been on it since June), up the 6MP to 50mg (which is what I was on originally before my flare) and add Allopurinol 50mg to help make the 6MP less toxic. He said that he did some more research and told me that Allopurinol would help. I had already heard about that on the forum a while back but never suggested it because I assumed he knew, apparently not. Funny how we learn about new treatment options on the forum well before our doctors do. :ybatty: Well, at least he does his own research from time to time.

As for the Methotrexate, he isn't sure if I should continue on it. He clearly doesn't think its working but said I should speak to my Rheumy about stopping or continuing on with it. I haven't been able to get a hold of my Rheumy but I'm told that I may hear from him by tomorrow. So we'll see what happens with that. It boggles my mind that my GI isn't sure and is willing to just let my Rheumy handle that part, even though the two don't get along. :shifty-t:

I haven't had many symptoms at all lately yet have been getting sick more often which I believe the Methotrexate is causing (if not that then being on that with 6MP and Entocort is destroying my immune system). Few to no symptoms doesn't mean much though. My flares have always been weird (either extreme or hardly noticeable) but the CRP for me has always been a good indicator of active disease.

I'll keep you all posted when I find out more. :ghug:
 
I'm sorry you are in a flare. Unfortunately my son's doc suspects he's in one, too. He's having tests done tomorrow. I'm super worried. :(

My husband took Methotrexate for years (diagnosed with rheumatoid arthritis at age 45) and often felt terrible because of it. He got off of it several years ago and now does not have arthritis, maybe he never did?
 
Aw Crabby, that's awful that you went from a nice long remission to such a stubborn flare that is making you go through medication after medication. Are there any meds you haven't tried yet? LDN? There's always stem cells too, although I know that's still rather experimental and you have to go through chemo as part of the process. At any rate, I hope you find a med or good combo of meds that gets you out of this flare once and for all! You definitely need another 14 year remission to start right around now!
 
I haven't tried a few things. There's Cimzia (likelihood of this working is slim to none because I had so many side effects from Humira a Remicade but its still on the table), LDN and any other non conventional treatment. I'm not looking forward to being a guinea pig again but I will if I must. I'll try out the 6MP and Allopurinol combo first to see how that goes since I was on 6MP during my 14 year remission. It worked well before so lets see how far we can push it.
 
Hope you can get on the right medication regime. That seems to be the biggest problem, finding what works for which type of IBD one has. It seems like such a loooong process. Hope you get better soon!!
 
I have read that Allopurinol does help counter the toxicity levels but 6-mp needs to be given at a low dosage while on it. I am thinking my GI might suggest the same to me as an option if my new blood work says that my 6-MP toxic levels are too high.

It sounds like the methotrextate has been more of a curse than a blessing. Maybe the entocort is what has been mildly holding you over all along? :/

Do you think your GI is giving up on it? Did you discuss the option of surgery further?

I'm very sorry things aren't working out. See what your rheumy has to say and hopefully this will all get under some sort of control for you so that you can get off of those steroids. :hug:
 
CrohnsChicago, we haven't discussed surgery yet because things aren't quite bad enough just yet (who knows, at this rate it might be soon :p). If I start dealing with more partial blockages though then chances are I'll have to push for surgery before we find a med combo that works for me. Last time I had surgery I also had a lot of inflammation but high doses of many meds could not get it under control so sometimes you just can't wait for the inflammation to come down before opting for surgery.

If the 6MP and Allopurinol don't work then he may try Cimzia which I'll likely quickly fail and then I imagine him giving up possibly. No other options have been discussed.

I have no idea if the Entocort was doing all the work but its possible. I know my Rheumy wanted me off of it last time I saw him 2 months ago. :/

I'll be starting the 6MP with Allopurinol tonight. Gotta love starting a new med and having to look up side effects and having to keep track of any changes at all. I read that you have to drink a crap ton of water with it but I'll try and make sure of that as well.
 
I think the doctors are playing a guessing game since there is no exact science as to which medication may work for you. I also agree that its ridiculous that your GI feels the need to throw the ball to your rheumatologist.

I used to get sick on 6mp all the time. I think any of these drugs that suppress the immune system are going to make us feel lousy and more susceptible to picking things up.

I hope you figure out a good cocktail.
 
I never got sick more often while on 6MP alone. Its definitely the addition of the Methotrexate. Hopefully my Rheumy will call tomorrow.

The reason why my GI wasn't sure was because he wanted me on something to give the 50mg some time to kick in yet its also causing unpleasant side effects (while I do have a bad cold of sorts, its causing other issues that are female issue related that I don't appreciate :p). So for my GI its a toss up and he may just want to go with what my Rheumy feels is best (its supposed to be helping my arthritis, whether or not it is, I'm honestly not sure).
 
Ugh no Crabby...:(...i'm so sorry to hear all this. :ghug:

I'm not sure I understand why the GI is upping the 6mp and then adding Allopurinol. Normally you would start at 25mg and add the Allopurinol. Wait 2-3 weeks do metabolites and then based on the results up the dose if needed.

Going in reverse...since you normally halve the dose of 6mp when adding Allopurinol is not upping the dose to 50mg and adding Allopurinol in fact potentially increasing the dosage effects considerably more?

Thinking of you! :heart:

Dusty. xxx
 
I'm not sure if knowing some of my history would help or not Dusty. :p

I was originally on 50mg since I was a teenager and after my resection. I handled 6MP just fine with no problems. When my recent flare first started up, my GI upped the dose to 75mg. After a while on that with no improvement he upped it to 100mg which is where I started having problems and had to stop taking it.

I think he wants me on 50mg now to try and get the inflammation under control quicker since 25mg isn't doing anything but I think its possible that he wants to increase the 6MP dose again in the near future because that was his original plan in the beginning. I just couldn't tolerate 100mg because it was too toxic for me.

I honestly don't know enough about it to say whether or not his decision is a bad call. :/
 
Ah okay, I knew you were on the 50mg for yonks but didn't realise it had been increased to 100mg and you had had issues. :(

I think your GI is likely on the right track with his thinking. He is hoping to get the positive effects of a higher dose of 6mp by using the Allopurinol pathway and so taking the pressure off the liver. I hope it works for you mate, good luck!

Dusty. xxx
 
Ya last year it was bumped to 75mg then to 100mg before I was taken off and switched to Humira, then Remicade, then Methotrexate with 25mg of 6MP and now here I'm back to trying 6MP differently. :p I'm definitely sick of it.
 
Well at least I was taken off of Methotrexate today. Being on three things that destroy my immune system is bad enough, didn't need to be on four. :ybatty:

So far the Allopurinol makes me feel a bit nauseous but not bad enough to make me throw up. Trying to keep up with the amount of water it requires is the hardest part for me.
 
Well my GI called me and changed his mind about upping the 6MP dose. He wants me back down to 25mg but stay on 50mg of Allopurinol. Make up your mind. :ybatty:
 
Sometimes I swear that I can't make up my own mind!!! For a few months I did alright just using one Canasa a day. Now that I'm flaring again I'm using two. Kinda hard to keep up with my medical card I carry!!! :ybatty:

Sending you hugs. :hug:
 
I stopped carrying a medical card long ago. At most I have a medical alert necklace. Should say, "Check box on table in living room for current meds." Even I hardly remember what I'm taking when filling out forms. :p
 
Majority of what's on there is the same. There's just one or two meds on there that changes doses sometimes. Biggest thing on there for me is the contact info. It's got my Husband's phone numbers and my Dad's in case they can't get a hold of my Husband.

Thankfully the medical cards of mine have never been used...
 
Jennifer curious do you get many infections?

I have thought about a medical I'd bracelet. I do have life threatening allergies but do people add Crohns as well?

Hoping you can tolerate your new needs.
 
I never got a lot of infections with 6MP. I seem to with the biologics and Methotrexate. The Allopurinol is new though so we'll see how it goes.

I originally got an ID bracelet when I was a kid for Crohn's. I think it could be helpful to know about if you were unconscious (my mom was always afraid I'd pass out).
 
Jennifer said:
I never got a lot of infections with 6MP. I seem to with the biologics and Methotrexate. The Allopurinol is new though so we'll see how it goes.

I originally got an ID bracelet when I was a kid for Crohn's. I think it could be helpful to know about if you were unconscious (my mom was always afraid I'd pass out).
Click to expand...

We're the infections mild like sinus, or did you get the flu a lot? I am somewhat paranoid starting Humira at the beginning of flu season. Getting my flu shot tomorrow!
 
With Humira I had constant upper respiratory infections (kind of like strep). Not everyone has this issue though. I'm one of the unlucky ones. :p Hope it works well for you. :)
 
My GI is driving me nuts because he keeps second guessing himself. He called and asked if I've taken Sulfasalazine before. I have and said that it made me really sick but don't remember the exact symptoms because I took it when I was a kid. So he asked if I'd be willing to try it again, I said no cause it made me sick. He wanted to know what my symptoms were exactly (did it cause a rash or cause breathing problems or vomiting or what). So I said I could ask my mom as she might remember. He said to give him a call back and let him know.

Then he called again 15 min later or so and asked if I've ever taken Pentasa. I said no, the only 5Asa I've taken is Asacol. He asked if I did ok on it, I said yes and that I took it for years. He said he didn't see it listed as one of my medicines though. I reminded him that he took me off it once I started seeing him about 3 years ago. So he's faxing in a prescription for Pentasa as it releases some into the small intestine (that's what he said, I haven't gotten a chance to look at where all these meds release).

Basically he wants me on something other than just the low dose of 6MP and Allopurinol with the temporary Entocort to try and get the inflammation under control. I'm fine with that. Do I still have to inquire about the Azulfidine? :tongue: I will anyway just in case.
 
Had my GP check my CRP because I was curious if it had changed at all from 59.63 and I'm told that my CRP is now 3.8. Now that's pretty awesome! :D

So now I get to try and persuade my GI to get me off the Entocort soon. :D
 

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