My GI doubled my 6MP, upped my sulfasalazine, and restarted my prednisone, because I was so sick on my last visit. I had lost 10 more pounds too. After doing what he prescribed for two weeks, I had lost 3 more pounds, and could barely do anything, I was so nauseous. I quit taking the 6MP, sulfasalazine and prednisone Friday. (I referenced this in a couple of posts, so sorry for redundancy!) I am going to rheumatologist for biologics on May 6th. I just can't stand to be so sick all the time! I have gained those 3 pounds back. What do you think?
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Quit My Meds
- Thread starter Allison M
- Start date
Hi..
Have you spoken to your GI about you coming off the medications? Or was this something you just did yourself?
If you haven't spoken to your doctor, I would recommend doing so ASAP. Especially if you stopped the prednisolone without a taper as this can be very dangerous.
I know the side effects are horrible, but there are anti nausea meds you can get if that's causing you a big issue. The effects of untreated crohns can be really severe, even if it is only for a short time, it can push your recovery back, and cause more damage to your digestive system. I'm not saying this to scare you, I just want you to be careful, especially if you're starting to feel better, I'd hate to see you get worse again.
Please take care of yourself. *Hug*
Have you spoken to your GI about you coming off the medications? Or was this something you just did yourself?
If you haven't spoken to your doctor, I would recommend doing so ASAP. Especially if you stopped the prednisolone without a taper as this can be very dangerous.
I know the side effects are horrible, but there are anti nausea meds you can get if that's causing you a big issue. The effects of untreated crohns can be really severe, even if it is only for a short time, it can push your recovery back, and cause more damage to your digestive system. I'm not saying this to scare you, I just want you to be careful, especially if you're starting to feel better, I'd hate to see you get worse again.
Please take care of yourself. *Hug*
theOcean
Moderator
- Location
- Toronto, ON, Canada
While I'm glad to hear you're doing better -- I remember you mentioning how bad your days could be -- I would at least alert your GI to your choice to stop your medication, just to be careful. Also: did you try immunosuppressants other than 6mp? Since that's a very likely cause for your nausea.
What have your symptoms been like since?
I'm glad to hear you're going to see the rheumatologist about biologics though! Good luck.
What have your symptoms been like since?
I'm glad to hear you're going to see the rheumatologist about biologics though! Good luck.
Thanks valleysangel92 and theOcean. I haven't told him yet. I didn't take the prednisone but one day, because I knew it would make me crazy. I must know it is taking a chance because I wrote the Forum, lol. I am so happy for the rheumatologist too, theOcean! I've only had the 6MP. I'm afraid now, because this has been the most miserable time of my life. I wrote the Qu Crohn's trial! but they want a six month diagnosis. Also certain types of tests, that I don't know if I have, or not. It's getting freaky...I look so bad, everyone is treating me differently! My teenage granddaughter laid with her head on my shoulder all day this weekend, and told me how much she loved me. Not that that is a bad thing, I loved it! But I'm getting the sad looks from neighbors, relatives, etc. I'm just scared, honestly!
Okay, well I'm glad to hear you at least didn't go cold turkey on the pred, that's reassuring
But I do urge you to be careful, it's better to talk to your doctor if you are having a problem with your meds rather than just stop them.
I hope the biologics help you with your crohns as well as rheumy issues. Good luck, please keep us posted.
But I do urge you to be careful, it's better to talk to your doctor if you are having a problem with your meds rather than just stop them.
I hope the biologics help you with your crohns as well as rheumy issues. Good luck, please keep us posted.
theOcean
Moderator
- Location
- Toronto, ON, Canada
Oh no, Allison, I'm sorry to hear that you're getting looks. I'm sure it's all well-meaning, and I'm sure it's from the weight-loss and that you will get it under control. Hopefully getting on biologics will jump-start that.
I was wondering if maybe you would have done better on another immunosuppressant, like Imuran. I never experienced nausea with it, though I know it varies with everyone. It doesn't seem to affect people the same way 6mp/methotrexate does, though -- I feel like I hear way more nausea complaints from those, especially methotrexate which my own grandmother is on (for arthritis).
I hope you feel better soon, and please keep us posted so we know how you're doing. :hug: You're someone that I really care for in this community, and I would like to see you doing well.
I was wondering if maybe you would have done better on another immunosuppressant, like Imuran. I never experienced nausea with it, though I know it varies with everyone. It doesn't seem to affect people the same way 6mp/methotrexate does, though -- I feel like I hear way more nausea complaints from those, especially methotrexate which my own grandmother is on (for arthritis).
I hope you feel better soon, and please keep us posted so we know how you're doing. :hug: You're someone that I really care for in this community, and I would like to see you doing well.
:kiss:Thank you, theOcean! I called the doctor after hours and told them. I don't want to get fussed at. That's funny because I'm 57. I should be able to do that! Anyway, thanks. I can't take that nausea. And the smell. And the taste in your mouth. ICK!!:eek2: can you wish this stuff away? That's what my plan is...a miracle:ylol2:
theOcean
Moderator
- Location
- Toronto, ON, Canada
I'm glad to hear you're on some medication at least! Prednisone should hopefully help you out -- I don't know if your case is too severe for the sulfasalazine or not. Do you find it helps you?
And yeah, I wouldn't be surprised with 6mp.
Imuran treated me pretty well, but I know 6mp and Methotrexate I hear a lot of people report nausea and other problems with.
And yeah, I wouldn't be surprised with 6mp.
Imuran treated me pretty well, but I know 6mp and Methotrexate I hear a lot of people report nausea and other problems with.I have NO idea. I was on prednisone and it, then they added 6MP. I'm still not sure. This CD...It's weird as owl shit though! You all have your Masters Degrees, and I'm in 2nd Grade!
Yes, I think the "Rebellion", is gonna be tougher than I thought. Now I get to choose between nausea or pooping myself weird a lot. No good choices.
Yes, I think the "Rebellion", is gonna be tougher than I thought. Now I get to choose between nausea or pooping myself weird a lot. No good choices.
Were you ever offered anything to help you with the nausea from the 6mp, or do you think your doctor might be willing to give you something to help with it? Some people find that the side effects get better when their body has gotten used to the medication and I was just wondering if there was anything they could do to get you through that phase, just to see if it does get easier.
Of course, there are other immunosuppressants you might be able to try.
Of course, there are other immunosuppressants you might be able to try.
No. I just called their office and gave them hell. I feel like a gasoline car running on diesel. I woke up pooping last night and my ankles hurt. I have had this for 4 years and 3 big operations and 1 small one. I had to ask if I had CD! The nausea is worse than the pain, I cannot go through it. I appreciate y'all's advice though. I guess like everyone else, I have my own particular quirks. I will pray one of the biologics helps me. If I go out and walk around my yard for awhile, I feel like I have had a pretty good day. Four years of feeling like I'm chasing feeling better, and it never happens. I am hopeless today.
Thank you (Jmrogers4) Jacqui. I am having a day today. I called the SSI trial awhile back, and got sent the packet. I'm just not sure if I feel well enough to travel, nor am insure if I have all the tests required for the trial. After listening to Tyler talk about it today though, I feel an impulse to try harder, and get in it. So I will try to have hope for that.
theOcean
Moderator
- Location
- Toronto, ON, Canada
Good luck, Allison. I hope you feel better soon. :hug: Maybe tomorrow might be a better day for looking at the SSI trial.