I don't know what's going on- possibly prednisone side effects?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Hanana
New Member


Date Joined Aug 2017
Total Posts : 3
   Posted 8/19/2017 4:38 PM (GMT -6)   
I need some help. I am having a ton of very uncomfortable, annoying and painful side effects and I don't know what to do, because I'm not sure of the cause. I have Crohn's and have been taking prednisone for a flare. I started at 40mg at the end of June and was on 40 for about 6 weeks. The side effects were what I expected and had experienced before on my last round of prednisone when I was first diagnosed; extra energy, increased appetite, moon face, weight gain, irritability... But it was working, I stopped having bloody stools three days later. After about a week, though, I didn't feel extra energy, I was tired all the time instead. Two weeks ago, I started tapering at 30mg for two weeks. Those first few days were AWFUL. I was so drained and literally felt sick from withdrawal. But, my body got used to it and I was okay for the rest of the time. However, a week ago, I moved back to college, so consequently, I have been under a lot of stress from moving and other stressors in my life that I cannot control. I just started 20mg yesterday, and did better as far as withdrawal symptoms, thank goodness. Anyways, I'm just going to list my symptoms and would like to know if anyone has had any of these symptoms at all while taking prednisone. I just don't know if these are all from the pred or something else that I need to stop ignoring.
extreme hunger, can't stop eating until I'm very full, moon face and weight gain- I've gained probably over 20 pounds in the last two to three months, abdominal distention and bloating (which I am usually always bloated, but this is particularly worse), irritability, worsening eyesight, fatigue, water retention- my legs and ankles are very swollen, as well as the lymph node glands on my neck, they are very tender, EXTREME itchiness ALL OVER my body, from my scalp to my feet, but there's no rash or bumps or dryness or anything that would make it itchy, stomachache that is different from food that causes pain, this pain is from movement, like if I lay on my stomach or twist weird, my stomach hurts. It feels like someone is wringing it out, heartburn and indigestion that is unusual from my normal, and I feel like my anxiety is worse than normal. Are any of these unusual?
Hannah, 20 y/o college student
Crohn's - dx'd 2013 (biopsy indeterminate, but looks like Crohn's)

-1st flare was orig. diagnosis in Sept. 2013
-2nd flare in middle of 2017, currently working toward remission
-currently on 100mg of 6MP, tapering off 40mg of pred [30mg], vit D, iron, probiotic, & Zyrtec daily. Miralax, omeprazole, zofran as needed
-tried Azo, Apriso, Canasa
-currently dairy-free

ragbag
Regular Member


Date Joined Sep 2003
Total Posts : 117
   Posted 8/19/2017 7:34 PM (GMT -6)   
I have only been on prednisone twice for only a few weeks after my crohns flares, so I am not as knowledgeable as maybe others might be. But I guess the best advice I can offer is, not to scare you, but that if my 20 year old granddaughter had your symptoms I would drive her to the e.r. Or to her doctor a.s.a.p. Especially the swelling of lymph nodes and the itchiness and pain you are in. This could be something not related to prednisone at all, so please get yourself checked out so you are feeling better soon.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/19/2017 9:29 PM (GMT -6)   
All of the things that you mentioned at the beginning are definitely from prednisone - I get that insane craving to just EAT, even when I'm stuffed full. Pregnancy cravings are nothing compared to it.

I'm concerned about the itchiness, though. I think you need to give your doctor a call about. The anxiety is fairly typical for prednisone, especially being on it for weeks. You can ask your doctor for a med to help calm you down. I'm also concerned about the abdominal pain. I think if you don't feel the need to go to an ER, you need to call your doctor and get some scans.

I just saw you're on 6mp.... a rare side effect is pancreatitis, which is quite painful upper belly pain below the breast area. It often radiates into your back, causes extreme bloating, and gets excruciating when you lay on your back. I think you really need to get to an urgent care, or better an ER to get bloodwork done to make sure it isn't pancreatitis. Trust me when I say from experience that you do NOT want to ignore that possibility. I ignored mine for over a month, and ended up on a feeding tube and spending 6 months in and out of the hospital to get it down. I am NOT saying that's what you have, but you have some indicators that it isn't safe to ignore.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1615
   Posted 8/20/2017 12:14 AM (GMT -6)   
I agree with the previous two posters.

Most of what you posted about (appetite, weight gain, edema, anxiety, etc) is pretty typical for prednisone; it's all a big nuisance but nothing to worry about.

But the itchiness seems unusual, and the swollen lymph nodes are a concern as well.

As scifigal2k said, the abdominal pain *could* be from pancreatitis. It's *probably* not, but just the fact that it *could* be is a concern.

And the itchiness *could* be from liver issues. Again, probably not, but not something you want to mess around with.

How long have you been on the 6mp? Have you been getting regular bloodwork since you started it?

I'd suggest, as the others did, that you get into a doctor sooner rather than later to get blood tests for liver function & liver enzymes and pancreatic enzymes. Go to your student health if necessary and tell the doctor you are on prednisone and started 6mp for Crohn's disease.

Odds are you're ok, but if it does turn out you're having a reaction to the 6mp and it's affecting your liver and/or pancreas, it's something you need to know quickly before it gets worse.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 8/20/2017 1:44 AM (GMT -6)   
I agree with everyone. Better to be safe and proactive given the medications you are on! While these meds can be very helpful, Prednisone alone can do quite a bit of damage and so can 6mp! How frequently have you been seeing your GI/ when was your last follow up? being on 40 mugs for 6 weeks seems like a lot to me. Stress can e really hard on you, I have lots of experience with that but try not to blame everything on it because Ive made that mistake before and almost missed some very serious problems that I thought were just symptoms of the stress I was under.

Hanana
New Member


Date Joined Aug 2017
Total Posts : 3
   Posted 8/21/2017 9:10 PM (GMT -6)   
UPDATE: Went to the ER two days later (Sunday), I could barely function. Woke up sweating uncontrollably, heart rate was fast, and I was shaking very badly and just did not feel well I could barely think. The found my liver enzymes were high, which is not normal for me. I've only had bloodwork done once since starting 6mp until yesterday. Since my liver levels were elevated, the ER doc ordered a ultrasound on my gallbladder. They found that there was a good amount of sludge in there and want me to have it removed. They gave me pain meds and nausea meds at the hospital. I vomited three times after leaving... not sure what caused that. Anyways, my concern is that my gallbladder is the least of my worries and that I need to get off the 6mp, because of all my symptoms of liver toxicity. I called my GI office today and my doctor (who wasn't in today) is going to get back to me tomorrow hopefully. I especially don't want to have surgery since I am immunosuppressed and that I don't even have gallstones, just sludge. Has anyone had surgery while immunosuppressed? It scares me thinking about it. Any thoughts?
Hannah, 20 y/o college student
Crohn's - dx'd 2013 (biopsy indeterminate, but looks like Crohn's)

-1st flare was orig. diagnosis in Sept. 2013
-2nd flare in middle of 2017, currently working toward remission
-currently on 100mg of 6MP, tapering off 40mg of pred [30mg], vit D, iron, probiotic, & Zyrtec daily. Miralax, omeprazole, zofran as needed
-tried Azo, Apriso, Canasa
-currently dairy-free

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1615
   Posted 8/21/2017 10:43 PM (GMT -6)   
I'm glad you went to the ER. Do you know how high your liver enzymes were?

As for your gallbladder 'sludge,' I had an ultrasound that found gallbladder sludge one time when I was really sick in 2006. I didn't have my gallbladder removed, and I haven't had any problems with it since. My understanding is that sludge sometimes turns into stones and requires removal, but sometimes the sludge goes away and the gallbladder returns to being fine.

Do you have any pain if you take your right hand fingers and probe directly underneath your right front ribs (that's where the gallbladder is)?

Your liver enzymes could be elevated due to the 6mp, or they could be elevated due to the gallbladder malfunctioning. Hard to say. If I were your doc I'd have you stop the 6mp and see if you improve, but I'm not your doc so follow what he/she says.

If it did turn out you need gallbladder surgery, the 6mp immunosuppression isn't a big concern/risk, but the high doses of prednisone are somewhat of a risk for complications (infections, slow healing, etc). Unless you had to have your gallbladder removed ASAP due to pain/infection/stuck stones in the ducts, they'd wait and want you off the pred before doing the surgery. But hopefully the sludge will resolve itself once the rest gets figured out.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 8/22/2017 12:06 AM (GMT -6)   
I too am glad you went to the ER. I would discuss this with your GI ASAP, I hope you hear from him/her early tomorrow. I agree with Beave, I personally would question the gallbladder removal. I was told at one point I had sludge as well and that this is common in Crohns patients. In my case at the time they said they would watch it and deal with it if I became symptomatic which i have not. How long have you been on 6mp? You definitely should have been getting frequent blood tests for liver issues. I have so far had surgery to have 4 wisdom teeth removed, not a major one but I am on remicade and 6mp. it went well and the healing was fine. I am scheduled to have hernia surgery in the fall while on these meds and I will be on IV antibiotics as a precaution before hand. the timing still has to be worked out though. none of my doctors seem too concerned about this. If you do go through with the surgery, make sure you have a good surgeon. Mine specializes in operating on patients with multiple preexisting conditions.

Keep us posted!

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/22/2017 10:20 AM (GMT -6)   
Gallbladder issues can cause problems with the pancreas, so please double check that they ran your lipase and amylase levels to make sure it wasn't pancreatitis in addition.

I had my gallbladder removed and it was really not a huge deal. It was laprascopic, so only three tiny incisions (one in my belly button). I've developed a few adhesions from it, but that's kind of something that's a 50/50 chance, and there's nothing you can do about it.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14980
   Posted 8/22/2017 1:02 PM (GMT -6)   
I too had my gallbladder out, only after having a HIDA Scan. The normal gallbladder test showed nothing to get their attention. Some sludge is ok, not enough to warrant surgery. It sounds like you have quite a bit because it is rare for ER to suggest surgery. I have had numerous surgeries & by far the gallbladder surgery I found to be the easiest of all.

In the mean time, get yourself feeling better & see what the gi has to say. How long have you been on 6mp?Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 19, 2017 11:55 AM (GMT -6)
There are a total of 2,884,242 posts in 316,472 threads.
View Active Threads


Who's Online
This forum has 157596 registered members. Please welcome our newest member, rogerdpack.
431 Guest(s), 18 Registered Member(s) are currently online.  Details
alephnull, golfer, 81GyGuy, mattamx, tickbite666, Pirouette, Tiger88, Hope4Happiness, Hoagie, Girlie, Jaxy, Lynnwood, GaryLK, Lwnsmld13, Shelly1978, BOOGEE, xy123, kodaska


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer