Has anyone used Spironolactone while on S/O combo?

[BattleTheBeast]

Hi all,

If you have read of my posts (mini novels) you will know I am fighting some serious edema right now. I went to my appointment this morning with the doctor who figured out what was actually wrong with me and sent me for the right tests, he is my doctor who helps with my Interstitial Cystitis issues. Anyway I wasn't able to get into my ID doctor today and also make my appointment an 1-1/2 hours in the opposite direction.

My doctor prescribed me Spironolactone which before even accepting I asked him to check the interactions on with S/O. Basically didn't see any issues with it when I got home and checked on http://www.hep-druginteractions.org/interactions.aspx but wanted to put it out there to those who have more personal experience.

I've never taken a "water pill" before and my doctor said don't take at night or I will be up all night in the restroom. I am up all night anyway so what's the difference? I am trying to decide if I should take the water pill now (7:10 PM) or wait until the am or even wait until after I see the ID Doctor, latest is Wednesday am when I have an appointment already scheduled. Swelling continues, can't even get socks on and have one pair of shoes I can manage to get into to.

Any thoughts?

Thanks,

Mel

[Doluska]

Hi dear! Yes, I am using it. It's OK. Will take some water from your body. Good luck! Doliska

[BattleTheBeast]

Thank you Doluska!

Got approvals all the way around on this medication. Basically my cirrhosis does not like that I am fighting the infection with the S/O combo. I am having some fairly yucky side effects, one of them is water retention, then we have the acid reflux (so not cool to have an episode 30 minutes after taking my Solid Gold $1,000.00 sovaldi with the Olysio.

Here's an important note for everyone; If you swell, if you have a rash, if there is anything visible on your body take a picture  and show it to your doctor(s). We have this tool and should use it. My doctor was very happy to be able to see the pictures of how the swelling progressed and regressed.

My pre-treatment MRI and Ultrasound was completely clear as far as portal hypertension, ascities  or anything unusual. They were taken less than 10 days before treatment started.

In my personal opinion the stress of this battle caused my cirrhosis to have this extreme flare for the first time ever and it could happen again any day. I just pray to God I don't have to stop treatment and start all over again with something else. 

BTW: Since these symptoms and issues have arisen I have heard from a ton of people that there is no way this is from the S/O, Not one other person has even had these symptoms and am I sure it was really that bad (another reason I was happy I took all those pictures!

Stay strong and thank you for helping me to stay strong, 8 weeks to go.....

~Mel~

[Rubye]

Hi Mel,
I hope you don't think I'm following you around the forum but since I'm new here I'm pretty much checking out all the posts and your's are the ones I really relate to.

I also have cirrhosis with portal hypertension, an enlarged spleen and low platelets. Just before starting the Sovaldi/Olysio my platelets were only 65 but after 4 weeks on  S/O my platelets were up to 85 and everything else is perfectly normal now. Not so before I started tx. So, because all my labs are better it makes me think that my cirrhosis is not the cause of all my side effects.

I think the S/O is causing my side effects simply because they are toxic drugs and I have always been extremely sensitive to drugs. For example, I can't tolerate steroids but most people can. So my thinking is most people tolerate the drugs better for whatever reasons. The only other thing I can think of that may be a problem for me is that I take 10 mg of Oxycodone a day for neuropathy, but that is really a very small dose, but along side the S/O the Oxycodone may be aggravating my liver more so than normal. Still, if that were so, why would the labs be so good? It's a puzzle.

Oh btw, I have heard other people on S/O have a lot of problems with joint pain and the fatigue and nausea. They are just very few.

[rainbowray]

Question for Rubye,

I have neuropothy in my feet, but have not used any pain medicine. Do you have the same, is it from diabetes as mine is not from diabetes, but the hepc.
How does the Oxycontin help the neuropothy? I am curios because I'm afraid to take any kind of drug during treatment, so I'm wondering if it is an option.

[Rubye]

My neuropathy is from my hep c. I didn't take pain meds for it for years and started with neurontin, then Lyrica and then the oxycodone (oxycontin is much stronger). I actually take roxicodone - no aspirin or Tylenol in it so it is not that bad for the liver. Better than nsaid's anyway. We are hoping that the neuropathy may stop or even reverse progression with a cure. Anyway, you are better off taking nothing if you can bear the pain.
It helps by making the pain tolerable.

[BattleTheBeast]

Hi Mel,
I hope you don't think I'm following you around the forum but since I'm new here I'm pretty much checking out all the posts and yours are the ones I really relate to.

Hi Rubye,

I don't feel stalked yet, I did the same thing when I started here, it's nice to find someone you can relate what you are going through with someone else. I haven't been here long myself. What was hard for me is that it seemed like everyone was all honky dory, minimal side effects, happy as can be and here I was in misery. I didn't understand it and still don't but felt like I needed to post my journey.

So back to the water pill for the edema. I took them for 3 days, the swelling went away, I was sent for more blood work and another abdominal ultrasound to validate I didn't have something going on that was missed in the MRI or the first ultrasound a couple of months ago. Guess what? Everything inside is fine (crazy lucky me) but the doctor has no way to explain why I swelled up like that out of nowhere. The blood tests did reveal that I have a very high level of ammonia in my blood, it's also said I am UD at 4 weeks in and everything else in the test could belong to any healthy 56 year old woman.

I am a mystery as I sit wide awake writing this post at 5 am when yesterday morning at 7 am I didn't know where I was going to get the strength to get in the shower so I could wake up enough to drive myself to the doctor at 10 am.  I was completely out of it, in tears and could barely move. Somehow between 7-8 I managed to go downstairs, make sure the grandson had breakfast and I ate a yogurt and a banana and drank 4 bottles of water. A little later I got him out the door for his school bus, I made a cup of coffee, logged into work and tried to get some work done.  Then the tears started again because I was so frustrated and I needed to get my butt moving, in the shower and awake enough to get to the doctor. So I finally made my way up and got ready. I feel like I am a roller coaster, either completely amped or completely gutted in a deep hole.

So now I am on another medication to help with the ammonia level because that could be causing my "fog" and I am wide awake and feel fine. Just now getting a little tired and back pain is starting again. So I am going to try and zone for a couple of hours. I signed up for some Floating Session, they are supposed to be a great way to relax your mind, lower your stress level and soothe achy bodies and it's not putting any crap into my broken metabolism. So I am looking forward to doing that and will let you know how it goes. I am still dealing with the intense itch so kind hoping the Epsom Salts in the float tank help with the skin itching as well.

Oh and I take pain medication, been taking the same dose for years; straight 10 mg Oxycontin 3 times a day to keep the pain at a 4 or 5 instead of a 9 or 10. I have Interstitial Cystitis and it's a fairly miserable condition. Basically it's like having multiple ulcers in your bladder so I eat clean to keep the pain down because I don't want to increase the dose of the pain meds. I need to stay away from too much acid however guess what needs acid, the S/O so I make sure to eat/drink something nice and acidic before I take the S/O and about an hour after. Then I start the water flushing again so my bladder doesn't go completely off the rails.

Please keep following and sharing, it's nice to know I am not alone....

~Mel~