I went to see my home town doc because I was in so much pain and nothing was seeming to help. Found out that my potassium was low. Has anyone experienced low potassium and how did you feel?
When I was hospitalized for meningitis, it was discovered I had low potassium as well. I felt terrible. Lots of stomach problems, headaches, dizziness, weakness. I had to be given 4 IV bags of potassium. That stuff really hurt going in! I hope you can take pills orally to bring it up.
Thank you all!! Maybe thats why I have this horrible headache and feeling like ive been ran over by a truck these past few days. My doc gave me 80 mg for only today so we shall see if I am feeling any better tomorrow. I can barely get off the couch today, and my head feels like its ganna explode off of my head!
Thanks for the sites. I found out that the foods I was craving are high in potassium, so now I know why all I have been able to eat is peas! :)
CRAMPS in every muscle, yuk! Every time I am ill enough to be hospitalized my potassium has been low to virtually non-existent. I eat bananas like a monkey, one of the few things my stomach can handle. And just basic ickiness.
Feel better!
Yes absolutely I was in pain mostly in my legs. They just told me to increase my potassium. I feel like a monkey because I'm always eating bananas
:)
Hello, there I have lupus and I have low potassium
Potassium is serious whether too high or too low. On the mild end of the scale it can cause muscle cramps. On the serious end, it disrupts your heart rhythm. I used to have both issues but I'm on Losartan now, which is a potassium-sparing med. They tell me not to take a supplement now, and to be careful about potassium-rich foods. I've found that the potassium-rich foods is not an issue, personally but then I don't eat 5 bananas a day either.
I was discovered to have low potassium (markedly so, but not dangerously low) at my last trip to the ER (January) for acute, severe nausea and vomiting that began as soon as I woke up one morning. It was so strange, went to bed feeling fine, albeit tired and up late because I had actually felt good enough to go out dancing for the first time in weeks! I slept a full and restful 8 hours, but the moment I was awake I was in excruciating misery: the dizzy and stomach kinds of nausea all at once, with severe, systemic body aches, a splitting headache and later confusion/warped perspective. The nausea got even more severe if I turned onto my side or tried to lift my head, and I had to do several rounds of deep breathing on my back in bed before making a dicey run (crawl) to the toilet for the first round coming up (violently and repeatedly.) I was home alone (single anyway, but my roommate was out of town), and after an hour of resting in between painful, wracking vomiting every 10-15 minutes or so, I called a neighbor to take me to the ER. I was amazed I made it for the whole 15-minute drive, but as soon as we were checking in she was handing me the paper bucket and holding my hair every 10 minutes again (what an amazingly generous and nurturing neighbor lady… Same age as my mom and never married or had kids, such a shame because she’d be the best mom! Luckily we were already pretty good friends before the incident, and even closer after.)
To get the nausea (and pain!) under control took morphine and IV anti-emetics (Zofran), plus 2 large saline bags (I knew I was dehydrated because I hadn’t been drinking enough water in general due to immediate fullness/nausea after a few sips, and especially during my big night out sweating in a crowded salsa club!) They also gave me a cupful of potassium syrup to drink before sending me home (worst-tasting shot I’ve ever downed 
And I liked tequila shots when I used to still drink before getting sick! Alcohol was not a factor in this incident because I had cut it out entirely 6 months prior! Glad I had a mom-figure with me or they would likely not have believed me on that one…) They also sent me home with a prescription for Zofran tablets to keep my oral fluids down during recovery at home, and another great friend came to sleep on the couch so I wouldn’t be alone if I got into trouble again. (Both of these rescuers had known me less than 10 months because I had moved to town less than a year before! As disappointing as some people can be as supporters, especially family it seems, some people are so amazingly helpful you can keep faith in humanity!) I didn’t ever need his help or even any more than one tablet of Zofran that night, kept dinner down just fine, etc. which makes me suspect the potassium deficiency played a big role in the fit of nausea and pain. They had also done an abdominal CT scan (negative findings) and it was highly probable that it was a reaction to my dose-increase of CellCept after I had been barely tolerating the lowest dose (probably part of why drinking water had been making me nauseous… What complex webs we get entangled in!) Some combination of quitting CellCept and getting more potassium cured me and it hasn’t been anywhere close to repeated (thank goodness!)
The low potassium probably came about due to the dehydration, sweating and the fact that I had been on steroids for a month (they cause a bit of potassium loss.) The vomiting caused a further drop, but the nausea was present before… And my potassium has come up low several times since then without causing those symptoms again. Unfortunately I can’t find the lab report to see HOW low it was in the ER, and it was only slightly low the more recent times. I do feel in all cases that bringing it to normal helped with fatigue and muscular/all-over-pain.
So my best guess about that isolated severe incident is the flow chart that follows, which many of you may find twistedly humorous in its familiarity:
Uncontrolled lupus despite Plaquenil x6 months => add moderate oral steroids (mild potassium loss.)
Steroids helping but not completely, and can’t stay on them forever => add CellCept (nausea impedes consuming enough food or fluids, weight loss and dehydration ensues.)
Have a freak good day after weeks and months of suffering and try to enjoy it doing my favorite activity (further potassium loss and dehydration by sweating.)
Dehydration, low potassium and building nausea from CellCept combine into the perfect storm of misery => trip to the ER: symptoms blocked with strong drugs, expensive testing/scans done, fluids and electrolytes replaced somewhat but I requested the second IV bag myself because I saw how fast I sucked down the first one and knew my body and recent history… I’m still glad they gave me those drugs and we were conservatively checking for scary problems like hepatic inflammation that either the CellCept or lupus itself could have caused, but come on here, if we know I’m dehydrated and my potassium is low, and it’s hard for me to consume enough liquids orally, why not give me more of the saline that’s almost free and in-stock while I’ve already got the IV in my arm??? High-tech often obscures the basics… My nurses actually totally agreed but were having a hard time getting the doctor to stop and sign the order. I am very excited for the increasing role/responsibility of nurses! But I digress… Next step.
Must stay off the possibly offending CellCept => back to the drawing board to find another drug with other risks so the uncontrolled lupus doesn’t do worse things to me than these horrendous experiences.
A friend/family member says (out of concern ad care, but also ignorance) that if I’d just get off the drugs and take a natural approach or learn to tolerate the (implied to be minor) annoyance of symptoms I wouldn’t keep having these dramatic episodes that are so expensive and such an inappropriate burden on those around me => my frustration and stress go through the roof and cause another flare! Welcome to life with lupus!
Hi Sweetie,
Haven't seen you around for a bit. Glad you're back. My Rheumy wanted to try me on another med in the same family as CellCept but is supposed to be much milder on the stomach. She says it's what they give kids because it's more gentle. Very close in names and I can ask for the name when I see her again. Unfortunately, it's pretty expensive but the drug company has some deal for a discount for the first 6 months.
Benlysta, is not an option, so even with nausea, vomiting and the other fun stuff that goes with it, I would still rather not have to make the switch to chemo. Ugh! Glad you feel better.
Hugs,
DeAnne
Faladora said:
I was discovered to have low potassium (markedly so, but not dangerously low) at my last trip to the ER (January) for acute, severe nausea and vomiting that began as soon as I woke up one morning. It was so strange, went to bed feeling fine, albeit tired and up late because I had actually felt good enough to go out dancing for the first time in weeks! I slept a full and restful 8 hours, but the moment I was awake I was in excruciating misery: the dizzy and stomach kinds of nausea all at once, with severe, systemic body aches, a splitting headache and later confusion/warped perspective. The nausea got even more severe if I turned onto my side or tried to lift my head, and I had to do several rounds of deep breathing on my back in bed before making a dicey run (crawl) to the toilet for the first round coming up (violently and repeatedly.) I was home alone (single anyway, but my roommate was out of town), and after an hour of resting in between painful, wracking vomiting every 10-15 minutes or so, I called a neighbor to take me to the ER. I was amazed I made it for the whole 15-minute drive, but as soon as we were checking in she was handing me the paper bucket and holding my hair every 10 minutes again (what an amazingly generous and nurturing neighbor lady... Same age as my mom and never married or had kids, such a shame because she'd be the best mom! Luckily we were already pretty good friends before the incident, and even closer after.)
To get the nausea (and pain!) under control took morphine and IV anti-emetics (Zofran), plus 2 large saline bags (I knew I was dehydrated because I hadn't been drinking enough water in general due to immediate fullness/nausea after a few sips, and especially during my big night out sweating in a crowded salsa club!) They also gave me a cupful of potassium syrup to drink before sending me home (worst-tasting shot I've ever downed ;) And I liked tequila shots when I used to still drink before getting sick! Alcohol was not a factor in this incident because I had cut it out entirely 6 months prior! Glad I had a mom-figure with me or they would likely not have believed me on that one...) They also sent me home with a prescription for Zofran tablets to keep my oral fluids down during recovery at home, and another great friend came to sleep on the couch so I wouldn't be alone if I got into trouble again. (Both of these rescuers had known me less than 10 months because I had moved to town less than a year before! As disappointing as some people can be as supporters, especially family it seems, some people are so amazingly helpful you can keep faith in humanity!) I didn't ever need his help or even any more than one tablet of Zofran that night, kept dinner down just fine, etc. which makes me suspect the potassium deficiency played a big role in the fit of nausea and pain. They had also done an abdominal CT scan (negative findings) and it was highly probable that it was a reaction to my dose-increase of CellCept after I had been barely tolerating the lowest dose (probably part of why drinking water had been making me nauseous... What complex webs we get entangled in!) Some combination of quitting CellCept and getting more potassium cured me and it hasn't been anywhere close to repeated (thank goodness!)
The low potassium probably came about due to the dehydration, sweating and the fact that I had been on steroids for a month (they cause a bit of potassium loss.) The vomiting caused a further drop, but the nausea was present before... And my potassium has come up low several times since then without causing those symptoms again. Unfortunately I can't find the lab report to see HOW low it was in the ER, and it was only slightly low the more recent times. I do feel in all cases that bringing it to normal helped with fatigue and muscular/all-over-pain.
So my best guess about that isolated severe incident is the flow chart that follows, which many of you may find twistedly humorous in its familiarity:
Uncontrolled lupus despite Plaquenil x6 months => add moderate oral steroids (mild potassium loss.)
Steroids helping but not completely, and can't stay on them forever => add CellCept (nausea impedes consuming enough food or fluids, weight loss and dehydration ensues.)
Have a freak good day after weeks and months of suffering and try to enjoy it doing my favorite activity (further potassium loss and dehydration by sweating.)
Dehydration, low potassium and building nausea from CellCept combine into the perfect storm of misery => trip to the ER: symptoms blocked with strong drugs, expensive testing/scans done, fluids and electrolytes replaced somewhat but I requested the second IV bag myself because I saw how fast I sucked down the first one and knew my body and recent history... I'm still glad they gave me those drugs and we were conservatively checking for scary problems like hepatic inflammation that either the CellCept or lupus itself could have caused, but come on here, if we know I'm dehydrated and my potassium is low, and it's hard for me to consume enough liquids orally, why not give me more of the saline that's almost free and in-stock while I've already got the IV in my arm??? High-tech often obscures the basics... My nurses actually totally agreed but were having a hard time getting the doctor to stop and sign the order. I am very excited for the increasing role/responsibility of nurses! But I digress... Next step.
Must stay off the possibly offending CellCept => back to the drawing board to find another drug with other risks so the uncontrolled lupus doesn't do worse things to me than these horrendous experiences.
A friend/family member says (out of concern ad care, but also ignorance) that if I'd just get off the drugs and take a natural approach or learn to tolerate the (implied to be minor) annoyance of symptoms I wouldn't keep having these dramatic episodes that are so expensive and such an inappropriate burden on those around me => my frustration and stress go through the roof and cause another flare! ;) Welcome to life with lupus!
I've had low potassium & Vit D. Common in chronic diseases like Lupus. I was in a flare & had nausea, diarrhea & joint pain. Vit D can be low from steroids or lack of sun. I have both levels checked periodically
I often experience low potassium. I wonder if there is a connection between that and the lupus... hmm.
Anyway, when I had low potassium I was a mess. I was tachycardic (145 bpm) I had chest pain and dizziness along with shortness of breath. I went to the ER thinking that I was having a heart attack only to be told that I had really, really low potassium and I was given two pills and sent on my way. Another time I had low potassium I had the same symptoms but I guess it wasnt as low. They did monitor it in the hospital but after eating a lot of bananas and fruit it came back up.
My advice would be to eat lots and lots of bananas. Sweet potatoes are actually better in the amount of potassium in case you dont like bananas. Regular potatoes are also rich in potassium. Oranges, tomatoes, and strawberries also have potassium in them as well. If you dont feel like eating that then I would go out and buy gatorade. It actually has a lot of potassium in it and can aid you in raising your potassium levels.
I wish you well,
Teenlupus101
Thanks for all the help!! After taking the 80mg of potassium and eating potassium rich foods I am still feeling really crummy. I haven't been able to get off the couch to much the past few days. I am planning to go back in tomorrow as I am not doing any better and haven't felt this bad since I was in the hospital in April, And my doc said I should be feeling better than i am do to the medications I am on..... I saw that if you have kidney issues that can also cause potassium issues either two high or to low and I do have kidney issues.
My stomach cant handle sweets so I'm not eating any bananas but found out that peas are rich in potassium and those seem to be the only thing I can keep down so needless to say that's what I have been eating for about two days. Thats cool to know about the sweet potatoes as I love me my sweet potatoes. Id rather have sweet potatoes any old day over white.
It’s still REALLY good you went in, because too low of potassium could send you into a cardiac or neurological emergency (probably both…) and that is MUCH harder to save you from than giving you a cup or pill of KCl 
Glad you made it!
Teenlupus101 said:
I often experience low potassium. I wonder if there is a connection between that and the lupus… hmm.
Anyway, when I had low potassium I was a mess. I was tachycardic (145 bpm) I had chest pain and dizziness along with shortness of breath. I went to the ER thinking that I was having a heart attack only to be told that I had really, really low potassium and I was given two pills and sent on my way. Another time I had low potassium I had the same symptoms but I guess it wasnt as low. They did monitor it in the hospital but after eating a lot of bananas and fruit it came back up.
My advice would be to eat lots and lots of bananas. Sweet potatoes are actually better in the amount of potassium in case you dont like bananas. Regular potatoes are also rich in potassium. Oranges, tomatoes, and strawberries also have potassium in them as well. If you dont feel like eating that then I would go out and buy gatorade. It actually has a lot of potassium in it and can aid you in raising your potassium levels.
I wish you well,
Teenlupus101
Hey there Vegas lady!
I’ve been back a bit more, but there was a pretty long absence before that. I’m actually doing great now on Rituxan! The only side effects I’ve had are extreme fatigue/sleepiness the rest of the day of the infusion itself (but totally fine after a day or two, quicker resolution than the mini-flare ups from over-doing it!) and more frequent infections. But my rheumie told me at our follow-up just earlier today that the steroids I’m still on (halfway off from the original dose I had Dec-May!) So, the Rituxan might indirectly reduce my infection rate by allowing me to get off the steroids At the very least, I’ll be reducing the myriad other risks of long-term steroid use!
Rituxan and Benlysta are actually not chemos, they’re both biologics. Although they’re fresh and new, and thus have poorly-described safety profiles and less evidence for their usefulness, they are a really smart, targeted approach to only knocking out certain components of our wacky immune system to break the lupus chain without knocking out all our defenses. They don’t cause nausea like the harsh oral immunosuppressives (CellCept and Imuran, aka mycophenolate and azathioprine), and they aren’t chemo like Cytoxan (cyclophosphamide.) I’m not sure why my rheumie suggested the off-label Rituxan over the approved-for-SLE Benlysta, maybe fewer risks & side effects? Either way, I’m happy with how it’s going!!! Feeling ready to go back to school in the fall, the trick is how will I also handle enough work to pay my unusually high medical expenses for a 26-yr old student (financial aid refuses to include it in my budget… How supportive of them for my already uphill battle for further education…)
Brynn
whathappensinvegas said:
Hi Sweetie,
Haven't seen you around for a bit. Glad you're back. My Rheumy wanted to try me on another med in the same family as CellCept but is supposed to be much milder on the stomach. She says it's what they give kids because it's more gentle. Very close in names and I can ask for the name when I see her again. Unfortunately, it's pretty expensive but the drug company has some deal for a discount for the first 6 months.
Benlysta, is not an option, so even with nausea, vomiting and the other fun stuff that goes with it, I would still rather not have to make the switch to chemo. Ugh! Glad you feel better.
Hugs,
DeAnne
Faladora said:I was discovered to have low potassium (markedly so, but not dangerously low) at my last trip to the ER (January) for acute, severe nausea and vomiting that began as soon as I woke up one morning. It was so strange, went to bed feeling fine, albeit tired and up late because I had actually felt good enough to go out dancing for the first time in weeks! I slept a full and restful 8 hours, but the moment I was awake I was in excruciating misery: the dizzy and stomach kinds of nausea all at once, with severe, systemic body aches, a splitting headache and later confusion/warped perspective. The nausea got even more severe if I turned onto my side or tried to lift my head, and I had to do several rounds of deep breathing on my back in bed before making a dicey run (crawl) to the toilet for the first round coming up (violently and repeatedly.) I was home alone (single anyway, but my roommate was out of town), and after an hour of resting in between painful, wracking vomiting every 10-15 minutes or so, I called a neighbor to take me to the ER. I was amazed I made it for the whole 15-minute drive, but as soon as we were checking in she was handing me the paper bucket and holding my hair every 10 minutes again (what an amazingly generous and nurturing neighbor lady... Same age as my mom and never married or had kids, such a shame because she'd be the best mom! Luckily we were already pretty good friends before the incident, and even closer after.)
To get the nausea (and pain!) under control took morphine and IV anti-emetics (Zofran), plus 2 large saline bags (I knew I was dehydrated because I hadn't been drinking enough water in general due to immediate fullness/nausea after a few sips, and especially during my big night out sweating in a crowded salsa club!) They also gave me a cupful of potassium syrup to drink before sending me home (worst-tasting shot I've ever downed ;) And I liked tequila shots when I used to still drink before getting sick! Alcohol was not a factor in this incident because I had cut it out entirely 6 months prior! Glad I had a mom-figure with me or they would likely not have believed me on that one...) They also sent me home with a prescription for Zofran tablets to keep my oral fluids down during recovery at home, and another great friend came to sleep on the couch so I wouldn't be alone if I got into trouble again. (Both of these rescuers had known me less than 10 months because I had moved to town less than a year before! As disappointing as some people can be as supporters, especially family it seems, some people are so amazingly helpful you can keep faith in humanity!) I didn't ever need his help or even any more than one tablet of Zofran that night, kept dinner down just fine, etc. which makes me suspect the potassium deficiency played a big role in the fit of nausea and pain. They had also done an abdominal CT scan (negative findings) and it was highly probable that it was a reaction to my dose-increase of CellCept after I had been barely tolerating the lowest dose (probably part of why drinking water had been making me nauseous... What complex webs we get entangled in!) Some combination of quitting CellCept and getting more potassium cured me and it hasn't been anywhere close to repeated (thank goodness!)
The low potassium probably came about due to the dehydration, sweating and the fact that I had been on steroids for a month (they cause a bit of potassium loss.) The vomiting caused a further drop, but the nausea was present before... And my potassium has come up low several times since then without causing those symptoms again. Unfortunately I can't find the lab report to see HOW low it was in the ER, and it was only slightly low the more recent times. I do feel in all cases that bringing it to normal helped with fatigue and muscular/all-over-pain.
So my best guess about that isolated severe incident is the flow chart that follows, which many of you may find twistedly humorous in its familiarity:
Uncontrolled lupus despite Plaquenil x6 months => add moderate oral steroids (mild potassium loss.)
Steroids helping but not completely, and can't stay on them forever => add CellCept (nausea impedes consuming enough food or fluids, weight loss and dehydration ensues.)
Have a freak good day after weeks and months of suffering and try to enjoy it doing my favorite activity (further potassium loss and dehydration by sweating.)
Dehydration, low potassium and building nausea from CellCept combine into the perfect storm of misery => trip to the ER: symptoms blocked with strong drugs, expensive testing/scans done, fluids and electrolytes replaced somewhat but I requested the second IV bag myself because I saw how fast I sucked down the first one and knew my body and recent history... I'm still glad they gave me those drugs and we were conservatively checking for scary problems like hepatic inflammation that either the CellCept or lupus itself could have caused, but come on here, if we know I'm dehydrated and my potassium is low, and it's hard for me to consume enough liquids orally, why not give me more of the saline that's almost free and in-stock while I've already got the IV in my arm??? High-tech often obscures the basics... My nurses actually totally agreed but were having a hard time getting the doctor to stop and sign the order. I am very excited for the increasing role/responsibility of nurses! But I digress... Next step.
Must stay off the possibly offending CellCept => back to the drawing board to find another drug with other risks so the uncontrolled lupus doesn't do worse things to me than these horrendous experiences.
A friend/family member says (out of concern ad care, but also ignorance) that if I'd just get off the drugs and take a natural approach or learn to tolerate the (implied to be minor) annoyance of symptoms I wouldn't keep having these dramatic episodes that are so expensive and such an inappropriate burden on those around me => my frustration and stress go through the roof and cause another flare! ;) Welcome to life with lupus!
So glad you went in to your doc. I have fought low potassium for over a year now. We tried changing my diet a bit-no change. Tried 10 mg a day prescription supplement, it worked okay but in late June got caught between my pharmacy and my doc with Walgreens saying the doc wasn’t calling back and doc saying they did. I missed 2 days and on the third day, June 2 of this year (the day after our Lupus walk) I was getting ready for church, was sitting on the toilet and started feeling really bad and really weird. I got up and made it about 3 feet, holding onto the wall (dizzy, nausea, no balance, sweating) and called my husband to help me. He was about 8 ft away and didn’t make it. The room went dark and I hit the floor. I can to a few minutes later and screamed. I had broken my leg just above the ankle. My husband helped me to the bed and got clothes for me to wear to the ER. I was tried to use crutches to get to the car but passed out a second time. Mike had to carry me to the car. Got to ER and found out my potassium was really low. They said I was lucky to not have had a cardiac event. Now, I’m on 20 mg a day of supplement and so far so good. This whole experience also taught me that my PVCs were caused by low potassium. During this chaos, I was throwing them left and right.
So take this seriously. It is not something to mess with. Good luck and keep us posted.