Pain on Spironolactone?

[Taylorfornow]

All,
Hello! My name is Taylor and I am cisgender. I am profusely sorry for invading this space, I just am at my wits end and want to hear from others who have taken this drug.

Last June, I was given Spironolactone by a physician due to a suspicion of adrenal adenomas. After a couple of weeks on the drug, I started feeling achey. My body ached with no change of physical activity or diet, in addition to having muscle twitches all over my body all day every day. My chest felt pretty tight/painful and filling up my lungs to 100% felt laborious. Also had some pretty gnarly pain in my upper left abdomen that now comes and goes but, in its early stages, was causing me some major issues. The body aches turned into sharp, shooting pains just about everywhere. I spoke to my practitioner, and she chalked the pain up to anxiety (lol) and increased my dose. I got up to <removed> before eventually being taken off the drug about two months after the initial dose (a quick CT and repeat aldosterone test ruled out an adenoma), but the pain persisted.

After seeing some physicians (two ER's, two Urgent Cares, two primaries, a neurologist, an OBGYN, and a nephrologist), they ruled out multiple sclerosis and hyperkalemia and just gave me a blanket diagnosis of idiopathic small fiber neuropathy (no biopsy done). After adding B12 (I started this one pretty early on after the pain started and it has helped immensely, like night and day), fish oil, alpha lipoic acid, and vitamin D, it is pretty okay most days, but I just wanted to know if anyone else who has taken this drug has had a similar experience that they found a resolution for. It seems to be getting better as time passes so I am hoping it eventually 100% resolves, but I am just looking for some leads on what could be potentially causing this. Of course there isn't much (if anything) in the literature that discusses this, so my physicians won't budge in considering it.

https://www.susans.org/forums/index.php/topic,174453.0.html This thread is incredibly similar to mine. I commented there, but it is a pretty old thread so I got minimal response.

Thank you so much in advance for making it this far in the post and for any information you may have!
Taylor

<Dosage removed by moderator - Susan's Terms of Service>

[Devlyn]

I took Spiro for seven months. It sounds like you just weren't getting enough water, to be honest. Spiro requires a minimum of a gallon of water (not beverages, water) per day. You also need to get plenty of salt, and avoid potassium, or you'll end up with every symptom you just described.

That's my best attempt at online doctorin'. 

[Northern Star Girl]

@Taylorfornow
Dear Taylor:
Pesonally I never had and "pain" when taking Spiro.
In my own personal experience and from reading the reports from other MTF transitioners,
I fully agree with what our member @Devlyn stated in response to your question regarding Spiro.

All of this and the effect that Spiro has on one's body and blood chemistry is why your prescribing physician will frequently look at your blood test results during your HRT and Spiro regimen.
   
Because Spiro is a Potassium Sparing Diuretic (water pill) the critical Potassium content in your blood is why Develyn hinted about avoiding excess Potassium in your diet.  Your doctor can give you specific advice about this as it relates to your body and blood test results.

Most times there will also be a SALT craving, that is why most transitioners report a penchant for eating lots of Dill Pickles and other salty snacks.

Best wishes to you,
Danielle

I took Spiro for seven months. It sounds like you just weren't getting enough water, to be honest. Spiro requires a minimum of a gallon of water (not beverages, water) per day. You also need to get plenty of salt, and avoid potassium, or you'll end up with every symptom you just described.

That's my best attempt at online doctorin'. 

[Linde]

I took spiro for several weeks and it made my head spin.  It is important that you avoid any food with a high potassium content, because spiro is potassium sparing, and also as it was said already, you have to drink like a horse to make sure you stay hydrated!
I eventually stopped taken spiro, and my condition went back to normal.

[KathyLauren]

Hi, Taylor.  You didn't mention your fluid intake, and that rang an alarm bell with me.  Spiro is a very strong diuretic.  If you don't consume lots of water, it is going to mess you up.  I can't address your symptoms specifically, but all of them sound like they could plausibly be caused by dehydration.

I started out pretty healthy: textbook blood pressure, etc.  My blood pressure on spiro dropped to 110/55, even with consuming a lot of water.  I could never be more than an hour from a bathroom.

[Taylorfornow]

Devlyn, Danielle, Linde, and KathyLauren,
Thank you so much for your responses! When I was on Spironolactone and started having pain, I upped my water intake to 100-120 fl oz of water a day. I don't drink coffee, soda, or anything except for water. I have kept this intake up for the past 10/11 months but continue to have issues post Spironolactone with the pain symptoms.

Again, thank you for your responses! It is much appreciated and a great reminder to keep my water intake up!