Severe prednisone edema help!!!!!!!

[Jfisher586]

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!

 

[Jennifer]

Hi Jfisher586. I've been on a few different doses of Prednisone throughout my life and the highest dose I was ever on was 60mg (you can take a lot higher). That dose definitely made me swell the most to the point where my skin stretched around my thighs so now I have stretchmarks. I was on that high dose for almost a year. It's not a common thing to happen (I haven't met many people on the forum that had this happen as well except for my sister who also has Crohn's). Applying lotion or cocoa butter is supposed to help your skin from being damaged. I don't remember how much pain there was but I imagine it was painful, it was so long ago.

Have you started leaking any fluid? Afidz has dealt with some severe edema before, not from steroids but she may have some more insight than I have. So I'm tagging her to your thread.

As for your anxiety medication, I'm sure that you're aware that stopping that suddenly can cause more anxiety. Are you working with your doctor on tapering off of it? They can prescribe a smaller dose and help you wean off.

 

[Jfisher586]

Thank you for getting back to me so quickly....the anxiety isn't that bad. Yeah I have my moments, but I'm thinking that's normal with all the steroids I'm on. But I wasnt even on that high of a dose to really have any negative side effects. I was only on 2.5mg to 5mg a day. And I've been off those meds for 2 weeks now. My doctor knows about it but I just wanted to be done and like I said I have the marijuana to help ease the anxiety if it gets that bad.
With the swelling, it can be pretty painful. I am on a billard pool league on Monday nights and it was painful just walking around the table. I'm wearing high socks that can be tight, and that seems to help. Also I'm elevating my legs to help with some of the swelling. And no I'm not leaking, thank god. I can only imagine how painful that would be. I was telling my boyfriend earlier tonight that I'm so swollen I feel like my legs are exploding. Lol, I doubt they would but it's crazy. But thank you so much for the help, I appreciate it!

 

[afidz]

If your legs are retaining water, I would seek medical attention, if you haven't already. That usually indicates am issue in the cardiovascular system.
I'm sorry I am just now responding, this tag didn't appear until today for some reason
I retain water in my abdomen to the point that it leaks. If I take water pills everyday I can keep it under control, but they can be dangerous long term so it's definitely a conversation to have with your doctor

 

[Jfisher586]

If your legs are retaining water, I would seek medical attention, if you haven't already. That usually indicates am issue in the cardiovascular system.
I'm sorry I am just now responding, this tag didn't appear until today for some reason
I retain water in my abdomen to the point that it leaks. If I take water pills everyday I can keep it under control, but they can be dangerous long term so it's definitely a conversation to have with your doctor

Thanks for the advice...but since I posted this my swelling has gone down. I still have some every now again. Like when I have to much sodium, lol. Which sometimes it's hard to let go of the sodium because of the steroid munchies. And I still have the horrible moon face, I just can't wait to get off the prednisone so I can start to look like my old self again. I seriously have gained 40lbs since I started prednisone over a year ago. I have only been off of it for maybe a month. But my CD would act up again, and instead of thinking that maybe humira isn't working, or maybe adding imuran or something my old GI would just push the prednisone on me. Ugh frustrating!!!! But on a more serious note, I am going to make an appointment with my primary care physician because ever since I had the severe edema my left knee has been killing me. Hurts to walk, and when I push on the knee cap it feels like something is moving around, like a fluid of some kind. I'm thinking that during the edema some fluid got into the knee and is causing issues. I don't know. Sometimes it gets better so I start to think it's not an issue but then there are days, like today, that it's horrible. Just a little concerning. But thanks again for your suggestions.

 

[FrozenGirl]

At one point on pred probably 6 months in I had major swelling from my feet to just above my knees. It hurt to walk and I could wear many of my shoes my feet were so swollen. And squatting hurt because it felt like my ankles wear full of water and my skin was so tight it was going to burst. Long story short i called my GI and he said we needed to get me off pred so call your doc.

 

[Jfisher586]

At one point on pred probably 6 months in I had major swelling from my feet to just above my knees. It hurt to walk and I could wear many of my shoes my feet were so swollen. And squatting hurt because it felt like my ankles wear full of water and my skin was so tight it was going to burst. Long story short i called my GI and he said we needed to get me off pred so call your doc.

Yeah prednisone is no fun...but I am getting off, I am on 20 mg right now and then on Friday I drop down to 10 mg. I started entyvio a few months ago and I got completely off prednisone for 2 weeks and ended back up into the hospital. And they put me back on prednisone. My GI said that once we get through the induction phase that I should be able to be done with the prednisone. I'm definitely trying to stop taking it. My CD doesn't agree with it, which sucks. But what can I do. So fingers crossed that I can get off of it as soon as I'm done with this induction phase.

 

[afidz]

I wonder. ..
A few years ago I woke up to my calf and foot double in size. Turns out Crohn's can cause what's called a Bakers Cyst (the spelling could be off) behind my knee caps and one of them ruptured and drained into my leg. Could be similar

 

[Jfisher586]

I wonder. ..
A few years ago I woke up to my calf and foot double in size. Turns out Crohn's can cause what's called a Bakers Cyst (the spelling could be off) behind my knee caps and one of them ruptured and drained into my leg. Could be similar

Maybe....my knee pain is more localized in the front. But I'll talk to my doctor and see if they can figure out what's going on, if anything. It could just be really bad arthritis but I don't know. I really appreciate your feedback.