Hello everyone! I hope everyone is doing well. But I've got questions that I really need answered. So from the beginning,I have had crohn's for almost 6 years and still working on the kinks. Started on remicade, that didnt work, was on it for maybe 2 years. So my GI switched me to humira, was on that for almost a year, then I lost my insurance and couldn't pay for it. I wasn't on anything for about a year. Then thankfully got a hold of Abbott and they paid for the meds. I was on humira again for almost 2 years.
For the last year I've been on prednisone on and off, because I kept getting exacerbations. My GI decided to move his practice to Florida. Needless to say I didn't know until I went to the ER and they asked who my GI was I told them and they told me about Florida. So I got put back on 60mg of steroids. :-( anyway while I was in the hospital met a new doctor. When I was released he wanted to do a special Prometheus test to see how my body was taking to humira. Turns out my body is completely rejecting the meds. There was like no trace, to the point where my doctor was wondering if I even take it.
Anyway so this whole time I've been going up and down on prednisone. Well I started a new med entyvio. I'm still in the induction phase. Only have had 2 infusions. Anyway I got down to no prednisone, 2 weeks after I stop all my crohn's symptoms shows it's ugly head. Couldn't keep anything down, no water nothing. Had 2 bowls of soup in like 8 days. So got malnutrition, ended up fainting and having to go to the hospital. :-( I was there for 3 days. But while I was there I had a moron for a nurse.
I was in so much pain they had me on dilauded 1mg every hour, on top of my normal pain meds (4 15mg of oxycodone, 3 20mg of oxycontin) so I was pretty drugged up. But when I got admitted they had me on I think 200mg of solumedrol (not spelled right, lol) that was 2 days. Then they switched me oral meds so I could be discharged. So this nurse came in to give me my meds. I got 40mg of prednisone twice daily. I remember telling her that that couldn't be right. But she said that it is. The next day I talked to the doctor and he said no that im only supposed to be on 40mg once a day. So needless to say I've been on high doses that I'm really getting upset about. I am about to taper to 30mg a day.
But my question is..I know swelling of ankles, joints and moon face are normal. But I've never been as swollen as I am now. Its so bad to the point where it hurts. I've talked with my doctor about it, and they told me to watch it. But I'm just wondering if anyone else has gone through this, and how the hell you made it through. I've had malnutrition in the past and I was swollen, not this bad but close. So I'm just scared that even though I got the malnutrition treated that because I'm not getting those nutrients anymore, and I know edema cause low potassium, but that the nutrients are no longer there.
And I also should have said that I have an anxiety and panic disorder but I stopped taking my valium because I'm trying to do a complete switch from pills to marijuana (since I live in Colorado, and it's legal) and more safe then prescriptions. So anyway I know that prednisone causes anxiety.
So I just want to see if someone out there has been what I'm going through and that everything is fine. So please anyone help!!! Also I haven't really been able to sleep since they started me back on this med. Which that in itself can cause anxiety. Sorry this thread is so long. I just want you guys to know everything so I can get better responses. Well I'm going to try and sleep now, but thank you in advance for any answers I get. Good night!
For the last year I've been on prednisone on and off, because I kept getting exacerbations. My GI decided to move his practice to Florida. Needless to say I didn't know until I went to the ER and they asked who my GI was I told them and they told me about Florida. So I got put back on 60mg of steroids. :-( anyway while I was in the hospital met a new doctor. When I was released he wanted to do a special Prometheus test to see how my body was taking to humira. Turns out my body is completely rejecting the meds. There was like no trace, to the point where my doctor was wondering if I even take it.
Anyway so this whole time I've been going up and down on prednisone. Well I started a new med entyvio. I'm still in the induction phase. Only have had 2 infusions. Anyway I got down to no prednisone, 2 weeks after I stop all my crohn's symptoms shows it's ugly head. Couldn't keep anything down, no water nothing. Had 2 bowls of soup in like 8 days. So got malnutrition, ended up fainting and having to go to the hospital. :-( I was there for 3 days. But while I was there I had a moron for a nurse.
I was in so much pain they had me on dilauded 1mg every hour, on top of my normal pain meds (4 15mg of oxycodone, 3 20mg of oxycontin) so I was pretty drugged up. But when I got admitted they had me on I think 200mg of solumedrol (not spelled right, lol) that was 2 days. Then they switched me oral meds so I could be discharged. So this nurse came in to give me my meds. I got 40mg of prednisone twice daily. I remember telling her that that couldn't be right. But she said that it is. The next day I talked to the doctor and he said no that im only supposed to be on 40mg once a day. So needless to say I've been on high doses that I'm really getting upset about. I am about to taper to 30mg a day.
But my question is..I know swelling of ankles, joints and moon face are normal. But I've never been as swollen as I am now. Its so bad to the point where it hurts. I've talked with my doctor about it, and they told me to watch it. But I'm just wondering if anyone else has gone through this, and how the hell you made it through. I've had malnutrition in the past and I was swollen, not this bad but close. So I'm just scared that even though I got the malnutrition treated that because I'm not getting those nutrients anymore, and I know edema cause low potassium, but that the nutrients are no longer there.
And I also should have said that I have an anxiety and panic disorder but I stopped taking my valium because I'm trying to do a complete switch from pills to marijuana (since I live in Colorado, and it's legal) and more safe then prescriptions. So anyway I know that prednisone causes anxiety.
So I just want to see if someone out there has been what I'm going through and that everything is fine. So please anyone help!!! Also I haven't really been able to sleep since they started me back on this med. Which that in itself can cause anxiety. Sorry this thread is so long. I just want you guys to know everything so I can get better responses. Well I'm going to try and sleep now, but thank you in advance for any answers I get. Good night!