Going on 6mp. soon will be off other meds woot

[spcwife23]

going on 6mp. soon will be off other meds woot

went to the doctor today and i told him the truth, that i seriously think if he tried to drop my prednisone, pentasa will not be able to keep me from flareing at all.. so he decided to put me on 6mp. i will be on 20 mg of pred from now on and pentasa and 6mp till he takes me off of pred and pentasa in 6 weeks... so atleast hes listening to me and im happy im finally getting pred out of my system.. im happy right now wooot

 

[Jennifer]

I hope it works for you.

 

[spcwife23]

ok well i was excited about the 6mp till i started reading about all the side effects.. i dont think i wanna start this meds at all.. im praying that it doesnt happen to me but im really worried

 

[Jennifer]

I'm currently in remission and have been on 6MP for over 10 years and am currently taking 50mg. I stopped taking for a couple of years because my insurance stopped paying for it but last year they started paying for it again and about a week after I was on it my diarrhea stopped and I felt fine. I've also never had any side effects from taking it (minus the low immune system and getting sick a lot the first couple of months of being back on it but that went away plus flu season is pretty much over, just wash your hands often and use a hand sanitizer). I get blood work done once a month to make sure that my other organs are ok as well. So far so good. I do hope it works for you as well as it does for me. It's currently the only thing I take for Crohn's.

 

[spcwife23]

Hey crabby can you tell me if thatdrug is safe to take for years and years. From what I read it like a chemo drug.. Isn't that kind of dangerous to be be taking on long terms.. I'm seriously really worried, I'm siting here I took half the pill and I swear I'm feeling wierd.. Maybe it's all in my mind or it's maybe my body getting off of the 40 mg dosage of pred down to 20, but I feel tired all of a sudden now, I dont no I guess we will see what happens over the weekend. I Just worried about taking this in a long term basis.. Once I am in remission I think I'm takin my butt back to pentasa only.. I'm praying for no side effects at all but I guess in the back of my mind I'm worried.

 

[Phartologist]

6mp

I was diagnosed in 2006. Pentasa helped some but once I went on 50mg of 6MP daily I got my life back again. Life insurance people wouldn;t speak to me because the blood counts drop alot,,,, but so what! I haven;t had a cold or anything while on 6MP even with counts dropped to almost 0:hang::hang::hang:

 

[Jennifer]

Hey crabby can you tell me if thatdrug is safe to take for years and years. From what I read it like a chemo drug.. Isn't that kind of dangerous to be be taking on long terms.. I'm seriously really worried, I'm siting here I took half the pill and I swear I'm feeling wierd.. Maybe it's all in my mind or it's maybe my body getting off of the 40 mg dosage of pred down to 20, but I feel tired all of a sudden now, I dont no I guess we will see what happens over the weekend. I Just worried about taking this in a long term basis.. Once I am in remission I think I'm takin my butt back to pentasa only.. I'm praying for no side effects at all but I guess in the back of my mind I'm worried.

I've been taking it for years and years. There will always be an issue of taking drugs long term even Advil or Tylenol have issues like that. The thing is that you must have blood work done often otherwise you may not know if its affecting your other organs until its too late.

Many of us have no side effects while taking it but I know some people on here have mentioned feeling side effects from it and I think feeling tired was one of them but its a tough call if its the 6MP or if its coming down on Pred. Its quite possible that if it is the 6MP, the feeling may go away after taking it for a week or so. If its really bothersome then mention it to your doctor and see what they think.

 

[spcwife23]

Thanks for y'all response, I decided to keep on it and see what happens. I was good for 2 days and Monday for some reason I started having pain for no reason, so todayy doctor told me to come in and he's taking a blood test to make sure my body isn't reacting to the 6 mp. But I think to be honest it's reacting to the drop of the prednisone. But I refuse to go back to 40 mg. I don't no what to do. I will talk to my doctor today and see what he says about the prednisone I think I would Have to atleast go back to 35 or even 30 mg and taper from there everyweek.

Sigh I'm so tired if being in pain.

 

[Jennifer]

Prednisone is an awful drug and perhaps that might have been too large of a taper. Sudden jumps like that and I guess the body reacts like its not taking it at all anymore or at least that's what it can feel like. A slower taper might be best. My GI never took me down more than 10mg at a time. I hated it but I never had to be on Pred. longer than needed with backtracking on raising the dose over and over again.

What dose of 6MP does he have you on?

 

[spcwife23]

Hi crabby, what your saying is exactly what I been thinking. So I'm gonna try this slower and every week taper down 5 and do it that way. I think because he thinks I'm mild that I'm not suppose to be reactor the way I am but it keeps happening.. He took test today to see if it's the 6 mp but I seriously don't think it's that medication. So this week I'm gonna go to 40 and next week try 35 and slowly go down. So by the time the 6mp kicks in my system I should be completely off of prednisone hopefully..

 

[xJillx]

I wish you luck with 6MP, spcwife! I hope you can successfully come off the pred and just take 6MP and feel GREAT! Please keep us posted.

 

[spcwife23]

Well doctor finally call and he said the test show my body is doing good on the 6mp.. I told him I knew that, and that I thought it was definitly the prednisone. I told him I'm getting decrease in dosage to fast and it has to get done slower and FINALLY he listen and said that he thinks it's that to. So he put me back on 40 but I decided to keep it at 35.. Guess what my tummy has calm down, the pain went from a 10 this morning to a 6 right now. Since doing the 35mg I have 3 regular BM. And I'm way happier without the bad pain. He did give me pain medication but I don't wanna take it, I want to give my body chance to deal with this without adding another set of medication.

He told me to stay on 40 for a week or until I feel like I'm ready and start tapering. So I am not sure how to taper by numbers but I decided right now I'll be on a tablet and a half and next week I go to a tablet and cut the second tablet into four and just take 3 and leave the fourth one and every week taper slow that way till I and done...

@Crabby- he has me on mercapurine I think it's how it is spell

 

[Jennifer]

I take Mercatopurine/6MP and am on 50mg. I was wondering what dose he had you on for it. How many milligrams is it?

Edit: I see it in your signature now. I don't quite understand the weeks and dosages next to it. Why does your dose change? If your condition is mild, why would they want you on 75mg? And why are you slowly going up in the dose? Its not necessary with 6MP.

Also, does your doc have you doing blood work every month? Mine wont even renew my prescription unless I have monthly blood work done (which I do).

 

[spcwife23]

Hi crappy,

Well from what he told me I guess it goes by your weight or something like that. He started at a lower dosage instead of jumping to the full 75 to give my body time to adjust because some of the side effects are nausea when your on higher dosage. So he told me by gradually going up it should help that not happen. The signature it's just showing that every 2 weeks he's upping it till I'm at the full mg that he wants me on. I was reading some other on this forum and their doctors also thought that was the best since it helps you not get nausause...

And as for the blood work yes, other than the one today to make sure, he had me coming in for a blood test in may to make sure everything was going good.

**** the medication your taking is the one I'm takin also, I just suck at spelling it ***

 

[Jennifer]

It's Crabby, not Crappy.

I see. I never had a problem with nausea when starting to take it and none of my doctors mentioned going up slowly to avoid it. The more you know I guess.

 

[spcwife23]

Lmao I'm so sorry crabby I'm on my iPhone typing on here. The phone keeps changing everything I'm typing to something else. Sorry again

 

[Jennifer]

Your iphone gotta problem with me? No worries.

 

[ThanksP]

I have nothing to add other than "crappy" made me chuckle. LOL, thanks for the unintentional laugh.

 

[ThanksP]

Actually, I do have more to add lol.

My doc started me at 50mg (I weigh 110). After two weeks and another round of bloodwork, he upped it to 100mg. Then, two weeks later and yet another round of bloodwork, went up to 150. I had to drop back down because DANG, at 150 the nausea and fatigue kicked in. So I'm slowly trying to get back to that dose.

 

[spcwife23]

@crabby- my phone loves you hehe /hug

@ thanksp- yeah thats what my doctor said, that he will slowly go up every 2 weeks until i am at 75 and i dont think hes going pass that number but we will see..

i went back up to 35 mg pred and im feeling great again.. soon as i went up i am having great bathroom times and tummy pain went away for good and i have energy yesterday to clean the house..

but the day before when iwas in pain i decided to take the pain meds the doc gave and it knocked me off my feet all night that night and most of yesterday.. i was feeling like i was in a dream but a good pain free dream.. i dont think ill be taking those meds unless im in bad pain..

today im doing great, i ate a little and see what happens, no pain yet thank god.. ill be tappering to 30 mg next weeks so im praying that it goes well.. i just notice that those pills are hard to make into 4 equal piece so i can get it to take.. right now at 35 i have to cute it up into four pieces and take 3 of the pieces and leave the last one for another day..

 

[schnicken]

I also have been on 6MP for 10 years or more. Side effects are as mentionned, but they have also had some reports of skin cancer and my doc now checks up on me about my skin. I'm very light skinned as well and already have actinic keratosis and since my immune system is depressed, that makes one more susceptible to skin cancers. I'm more worried about skin cancer than colorectal LOL!

Also, I'm not sure if you are a female, but you should NOT get pregnant on this drug.

As for the predizone, the only way I got off it completely was once I got down to 5mg, I had to taper 4-3-2-1 mg. My first doc had no clue about that so I went to see a new doc who suggested that and I sat there with my mouth open as I knew it would work. I could never get past the 5mg to 0mg mark.

 

[spcwife23]

@ schnicken

wow that is scary to know about the cancer stuff... i think ill try and get off of this as soon as i can switch over saftely over the next few years.. but for right now i just want it to work.. can you tell me how the heck you cut your prednisone to make it go from 4,3,2,1.. how small of a piece did you cut?

i have difficulties just trying to get it cut up into 4 equal pieces..