Living with AIH and looking for advice on dealing with prednisone side effects

I’m new to HealingWell.com but am very excited to find people with whom I can relate and find support.  I was diagnosed with autoimmune hepatitis in 1996 and after a course of prednisone and azathioprine, have been in remission since.  I was 8 years old when diagnosed, so although the prednisone, biopsies, and weekly blood draws were unpleasant, my young brain did well in protecting me from fully remembering every detail.  I have been on varying doses (0-100mg) of azathioprine since 1996 and have handled it very well.  I began searching for AIH support when I came out of remission in September after being prescribed Singulair (montelukast sodium) for severe allergies. I would like to blame the nurse practitioner for prescribing me a medicine that should not be taken by someone with liver disease, but I should have also asked more questions and done research on my own before blindly trusting someone in a white coat.  After dealing with my anger, fear, denial, and hosting a quick pity party that I didn’t have the time or energy for, I got to work on taking control of my life again.  Unfortunately, this experience was the catalyst for finally teaching me to be more involved in my health care – my GI might be annoyed with my newly brandished micromanaging skills.  After two and a half weeks of taking montelukast sodium almost every day, my ALT was at 1281, AST was at 676, and bilirubin was at 9.1.  I was told to continue with 50mg of azathioprine and also prescribed 60mg of prednisone, which has been my biggest worry over the last 10 or so years.  Like I said previously, I vaguely remember the side effects of prednisone from my youth, but I still have my 4^th grade school photo with the dreaded “moon face” and my mom still references my terrible mood swings from that time period. 

I just finished week 6 of taking prednisone and have had so many side effects that I didn’t even know would happen, so I’m curious to know if they are common or if anyone else is dealing with them.  They may have all set in at once, but I didn’t notice them right away so it seems to have been progressive.  Of course I have the steroid acne and the increased appetite, but my hands have been shaking, my whole body feels like a bruise most days of the week, insomnia, muscle cramps, extra energy during the day, elevated mood (I don’t want to say euphoric just yet), fidgeting, and body aches. I discovered the most alarming side effect last week when I attempted to play in a newly joined indoor soccer league – muscle atrophy.  For a fairly active and athletic person, I could barely make it longer than 2 minutes into the game without my legs feeling like they were about to give out and my lungs not being able to keep up. These side effects are weirdly new to me, even with having AIH the majority of my life. I have my next game in 2 days and am nervous to play – I can’t tell my teammates that my muscles have been weakening over the last month and a half so I have to sit out.  Has anyone ever experienced prednisone related muscle atrophy causing them to fumble words or not being able to form words correctly? This symptom has only recently been noticed, and I’m hoping I can categorize it with the rest of the prednisone related side effects that will dissipate during the dosage taper.  I am also curious about others’ experiences with the effects of prednisone on their menstrual cycle.  I know this can be an awkward topic, but I have looked on Google and haven’t found any consistent information.  Many sites say it can lighten your cycle, whereas mine has become worse in regards to cramps, length of time, and flow. From my research, it seems there is not a “normal” effect one way or the other, but I’m not sure if I should start taking other steps with my gynecologist to assist with that concern or if eventually things will normalize when the prednisone levels decrease.  

Starting this week sometime, I might be able to taper my prednisone by 10mg per week if my most recent labs come back normal, so I also just started doing research on the side effects I should expect during the tapering stage.  I’m all ready for my steroid acne to clear up, but I am not looking forward to joint pains, irritability, depression, and the return of my unwillingness to get out of bed in the morning (the one perk to my insomnia).  Here’s a side note on myself: if we don’t count the 2-3 pity parties I’ve thrown myself since I was forcibly shoved out of remission, I would consider myself a “silver linings” type of person, so I’ve really embraced my insomnia, elevated moods, and extra energy prednisone has given me these last 6 weeks.  Weaning off of prednisone is going to be a bittersweet experience for me. 

I would greatly appreciate any advice or information on side effects of prednisone and the tapering off of prednisone, along with any other not as commonly known drugs that people with liver disease should not take that anyone has found. I still have a lot to learn about a condition I’ve had for 17 years and hope that HealingWell.com can help me cope with what I am going through. 

 

Amanda

Hi Amanda,
Email me, I'll send the address of a transplant forum that has a couple of threads on prednisone. One is named "Prednisone Sucks," and the other is "I Hate Prednisone." The people there should be able to help you. My email address is below my name or on my profile.

Hi Amanda

Hope this post makes sense only I had surgery on my Achilles' tendon yesterday so am a bit out of it on painkillers. Excuse any rubbish I write. Dany should be along soon and be more with it than I am.

I too had a raft of side effects from pred. I used to joke I had everything except the euphoria! But yes everything you wrote rang bells with me. I also had the thin skin resulting in multiple bruises especially on my arms. That was a great look!

I also found that my brain slowed down so the correct words wouldn't come into my head quickly enough. Very frustrating. At work I did write notes before meetings rather than rely on my memory. So writing things down may help.

Like you I embraced the insomnia and got lots done at night!

It is true that some people get joint pain and other things when tapering the dose. But not everyone. I found I just felt better as the dose dropped so you may not find the reduction difficult. Let's keep fingers crossed.

Ann

Sorry for the delay, yesterday went a little differently than I had planned.

yup, 60mg of pred for 6 weeks will do crazy things to you.  I hope your levels are more normal so they start decreasing dose.  My only suggestion would be to speak to your hepatologist about using Budesonide instead of pred.  I know a lot of heps are starting to switch patients to that for flares and even for initial presentation.  Since the aza takes about 2 months to kick in, they'll likely keep that at 50mg till you get to the lower pred doses and start the full wean off. 

I never had any joint pain on or off the pred.  So I can't respond to that.  I believe the joint pain when coming off the pred is usually associated with a wean that is too fast... but that's talking from the 7.5mg or 5mg to zero wean.  I also was lucky to not have any muscle weakness.  That's why I'd ask about budesonide.  It doesn't have the same systemic effects that pred has.

If your numbers have decreased but aren't normal yet, you may also ask to lower you to 40mg.  Still a very effective dose especially if the 60mg has made a significant impact and you are close to the 2 month kick-in for the aza.  The aza will help you lower the pred dose.

As Connie said, pred is a bone thinner.  Ask your doc about having a bone density test so they can monitor and talk to them about calcium and multi-vitamin supplements.  I take a multi and 2 Caltrates a day as well as an iron tab a day (my anemia is better but we don't plan on changing anything I do with meds since I am very stable...knock on wood)

I wish I could be better help with the muscle weakness, which seems to be your biggest trouble with the meds at this point.  As for your menstrual issues...have you considered a Mirena IUD?  I had one when first diagnosed and it was fabulous as it pretty much stops the bleeding monthly.  You know when it's there, you have other symptoms but bleeding stops or close to stops monthly.

I hope that helps a little!

Thanks for all the support and advice everyone!  Tomorrow I'll be down to 30mg/day of prednisone and only the insomnia has lessened so far. 

Ann, I take comfort in knowing that I'm not alone in experiencing a myriad of side effects!  Taking notes was a good idea too. I hope your Achilles' tendon surgery is healing well.

Dany, thank you the advice on the budesonide - I'll have to do some research and ask my GI about that.

Glad to hear your partner is doing well now, MamaLama, and I'm with you on hoping this winter isn't horrible.

In regards to azathioprine, has anyone ever heard of an increased risk of lymphoma being linked to long term use or high dosage?  I've been on azathioprine for 17 years now, and a previous GI tried to take me off due to the risk of lymphoma but my ALT/AST couldn't be controlled without it.

Amanda

Hi Amanda,
There is an increased risk of lymphoma and melanoma. As per the melanoma, wear plenty of sunblock and avoid worshipping the sun. There isn't anything you can do about the lymphoma risk. On one hand, it is an increased risk and doesn't mean you will develop it. I had asked my hepatologist about it when I first went on aza. He said I didn't have to worry about until I'd been on it a good 20yrs. Since you're coming up on that, maybe when you ask about the budesonide, you can ask if switching to one of the other immunosuppressants can play with your odds. Any immunosuppressant will have increased cancer risks, it's the nature of those types of meds and how they work on the body. But maybe switching confuses things up? :). It doesn't hurt to ask but remember that it doesn't mean you will develop it.

Hopefully, your bloods let you lower even further soon. Once I got to 10mg pred, so many of my side effects went away & I was able to sleep again.

It seems the situation is confusing on increased risk of lymphoma. Some studies suggest there is a slightly increased risk but other bigger studies don't. But it is still very rare (even with an increased risk) and as Dany and David has said you need to balance that against the high risks of not taking it.

I am not aware of doctors routinely switching meds to reduce this risk although it is an interesting thought. I know people who have been taking aza for 25 years now and their doctors aren't suggesting a change.

Do ask about budesonide as Dany suggested. A good proportion of AIH patients (I have read that it is a figure of 60%) need to take a steroid long term as well as an immunosuppressant (I may be joining this group soon) and the side effect profile of bud is much better than pred.

Hope the pred reduction goes well. The only dose I could cope with I confess was zero but most people do feel better as soon as the dose drops below 10mg.

My achilles is much better thanks. The plaster cast is now off and I can actually walk around albeit in an enormous plastic boot contraption!

Ann