Hypomagnesiumia, I am a ticking time bomb!!

weetziebat · Feb 13, 2005

curleysue, i feel soo bad for you. so, your insurance won't cover the infusions, and you can't afford them on your salary. and now you are bedbound, feeling like crap, because it has been six days since an infusion.

sounds to me like you might be better off going on disability. if you are unable to work because you can't get the infusions as often as you need them you may as well be on disability and try to get this straightened out. is that a possibility?

sorry i'm no help on how to keep the p.o. mag down. do the pharmacists have any tips?

good luck hon. you're in my prayers :icon_hug:

CritterLover, BSN, RN · Feb 13, 2005

wow, sound like you are going through a rough time, to say the least.

at the risk of pointing out the obvious, have you tried eating lots of mag-rich foods? i have a nutrition background, so this is generally where i start. peanuts and sunflower seeds seem to top the list (peanut butter would be good, too; but the natural variety, rather than the sugar-heavy kinds). if you google "magnesium rich foods" you should get a good site from a nephrologist. i think he put it there as foods to avoid for hd patients, but you could use it as things to consume. there was also a site about a high-mag drink that danon makes in france. maybe that would be easier for you to tolerate.

a second thought would be a possible drug that would help you retain mag. i don't know of any myself, but it couldn't hurt to ask your nephrologist if one exists. you would think that he would have mentioned it already if this was an option, but it just can't hurt to ask.

as a final option, i would look into seeing if it is possible to give the mag infusions to yourself at home. it may or may not be cheaper. (for example, medicare will only pay for an infusion if it is physician-supervised. not all insurances have that policy, though). i do some outpatient infusion, and we always charge a fairly substantial fee to have the md available should something go wrong. though a mag infusion is not exactly an infusion of saline, you have been getting it long enough that you would probalby be ok getting in at home. if i remember right, you are not yet a nurse, and you have a port a cath, right? so they would need to teach someone how to access your port, and have to do some serious teaching about iv mag. then there would be the cost of the mag, the solution the mag goes in, tubing, port access supplies, and possibly pump rental. you would also need a doctor that was comfortable enough to give you orders for this. and i'm not sure how much money this would save you in the long run, but it is worth looking into.

unfortuntly, i can't think of anything that would make the po mag more tolerable for you, but i will post again if i think of anything else. good luck.

meownsmile, BSN, RN · Feb 13, 2005

As critterlover, i dont understand why you cant give yourself the infusions at home. If you have a port already, all that needs done is a dressing change and access needle change. They should be able to teach you everything you need to know about dealing with your port yourself. Then the only obsticle would be financing the premix infusion and a portable pump.

I had home antibiotic therapy one time for 5 days. They brought the pump, with the premixed infusion, had the pump set for the schedule and they hooked it up. All i had to do was haul the little bag with the pump in it around with me.

There has to be some availability of this in your area. You need to speak with the doctor about it.

sharann, BSN, RN · Feb 13, 2005

Just wondering if you take alot of calcium supplements of antacids? I am so sorry to hear you having a rough time. SOunds like your doctor cares for you. Have you considered going to a clinic for a full eval like Mayo or UCLA. Somewhere they do research. Maybe you can get into a study that will help you and is paid for? Good luck to you.

javanurse2000, BSN, RN · Feb 13, 2005

Curleysue: First, I am so sorry that you are going through this. Have you tried enteric coated mag tabs? (maginex makes them). Also, have you tried taking 1/4 the dose qid or 1/10 10x/day...which would seem extreme to anyone who is NOT suffering from your symptoms. When traditional tx.s/approaches don't work for you...don't give up....get that cat skinned!!!! I really think getting the enteric coated will work for you...I would definately talk with a pharmacist about how the best way to get those down as well. Also, there are more antiemetic drugs out there than phenergan...forgive me, I'm on a thing here....there's zofran for instance and it is a wonderful medicine that may be able to help you tolerate...a little expensive but not as bad as the IV and much less disruptive to your life! Sometimes asking the Dr....are you willing to try other medicines for my vomiting so I can try to take PO mag? (have a list ready for his convenience :rolleyes: ) Very best wishes to you!

Aneroo, LPN · Feb 13, 2005

Are you a candidate for a renal transplant? I would also like to know why you cannot do the infusions at home.

I'll keep your health and healing in my prayers. -Andrea

luvrn · Feb 13, 2005

Hi..

I work for a Home Infusion Service. I have done everything in the home from Chemo to Antibiotics. I know a lot of things are insurance driven, but the home infusion company can check your benefits to see if it would save you money. The nurse could teach you how to access you port, we do it all the time for people who require infusions for life...i.e.....TPN, Aralast ect.

lsyorke, RN · Feb 14, 2005

Try Magnesium Glycinate! It's very easy on the stomach! You may have to have your pharmacy order it.

Havin' A Party!, ASN, RN · Feb 14, 2005

Sue -- Lots of good ideas here... the nutrition, the mag gly, cutting out calcium supplements (unless you have a special need), and as a last resort... in-home infusion.

Overdoing oral mag does cause loose stools. Mag oxide is nearly worthless as a mag supp because it's so poorly assimilated.

I make my own mag-rich drink at home extreemly cheaply from club soda (sodium free), MoM (non-flavored) and water. Also tastes great! Happy to share the recipe with ya if you'd like. Please PM me.

Reliable sources have found that most of our diets in the US are mag-deficient. Mag is so important for heart health, as you've already discovered.

Hope things improve.

curleysue · Feb 16, 2005

wow, sound like you are going through a rough time, to say the least.
at the risk of pointing out the obvious, have you tried eating lots of mag-rich foods? i have a nutrition background, so this is generally where i start. peanuts and sunflower seeds seem to top the list (peanut butter would be good, too; but the natural variety, rather than the sugar-heavy kinds). if you google "magnesium rich foods" you should get a good site from a nephrologist. i think he put it there as foods to avoid for hd patients, but you could use it as things to consume. there was also a site about a high-mag drink that danon makes in france. maybe that would be easier for you to tolerate.
a second thought would be a possible drug that would help you retain mag. i don't know of any myself, but it couldn't hurt to ask your nephrologist if one exists. you would think that he would have mentioned it already if this was an option, but it just can't hurt to ask.
as a final option, i would look into seeing if it is possible to give the mag infusions to yourself at home. it may or may not be cheaper. (for example, medicare will only pay for an infusion if it is physician-supervised. not all insurances have that policy, though). i do some outpatient infusion, and we always charge a fairly substantial fee to have the md available should something go wrong. though a mag infusion is not exactly an infusion of saline, you have been getting it long enough that you would probalby be ok getting in at home. if i remember right, you are not yet a nurse, and you have a port a cath, right? so they would need to teach someone how to access your port, and have to do some serious teaching about iv mag. then there would be the cost of the mag, the solution the mag goes in, tubing, port access supplies, and possibly pump rental. you would also need a doctor that was comfortable enough to give you orders for this. and i'm not sure how much money this would save you in the long run, but it is worth looking into.
unfortuntly, i can't think of anything that would make the po mag more tolerable for you, but i will post again if i think of anything else. good luck.

wow, thanks for all the info. actually everything you have said i have tried or asked.

the mag rich foods i do everyday. that was one of the first things we have tried and i am still doing it. i love nuts, i eat lots of green lettuce. just basically a high protein, limited carb diet cause of my diabetes (type ii).

funny how you mentioned a drug to help retain mag in my kidneys. my nephrologist recently prescribed a diuretic (amiloride) which is supposed to retain mag in my kidneys, which sounds kinda weird cause its a diuretic. oh well, i have been on it for 4 weeks and no change in my magnesium levels.

infusions at home. i have tried and asked. and its a definate no. cause i am not clinically housebound. i can ambulate. its difficult and painful but i can do it. so, it would be hard for me to convince an authority figure that. it would be awsome if i could do it at home and access my port by myself. i definetely know how to do it. i practically do it at my infusions anyways. i learned it in nursing school and just from it being accessed so many times.

the longest i have gone without an infusion is 7 days. and that was super hard. i got my infusion yesterday and the difference is day and night. i feel so good! my muscle don't hurt so bad, or twitch or cramp. i am not as fatigued. my heart doesn't race or beat irregular. its just incredible how good i feel. and i don't get that feeling with pills or foods. maybe i would if i was able to take pills regularly it would be good. but they just make me so so sick.

i have asked the pharmacist if i could do or take something with the meds but they have no ideas.

the disability issue. that may happen. but i am working my job as a caregiver cause its not hard. its just little housekeeping, running errands in the car and a lot of companionship which is sitting down. so my job is so easy. and when i feel really bad my clients understand and we just sit and talk. i have applied for disability before and was denied. that was when i got a pe and dvt's in my legs and was on oxygen for 2 years and they denied me twice. i got so fed up with it i quit. it was such a long process i just don't want to go through that again.

i guess i will address everything that y'all wrote.

i do not take calcium supplements. should i?

the mayo clinic was definetly brought up. that might still be an option especially cause i have tried almost everything.

i have tried the enteric coated magnesium. yes, they were easier on the stomach but i have severe diarrhea, once i had to go in just for fluids! i had 2 l of ns and only had to urinate once! i was so dried out from diarrhea.

i have not tried the other antiemetic drugs like zofran. i have heard people on chemo swear by zofran. i might actually ask about that. when i get my infusions they give me iv phenergan and iv benedryl for the hot flashes, itching and nausea and those work awsome. they don't even make me drowsy anymore. i guess i built up a tolerance. thats not so good.

candidate for renal transplant??? i don't think so. i don't think i need one at least for now. my hypomagnesiumia isn't something that i would need a new kidney for. i wondered if dialysis would help. probably not.

i will try mag glycinate, i have something waiting for me at the pharmacy now for me to pick up now. i think its the last mag supplement there is out there that i haven't tried. magnesium glycerate? i don't know if thats right, maybe it is mag glycinate. i will see soon.

i think thats all. thanks so much for all your info. it would be totally awsome if my insurance covered home infusions. i know they don't my mom works in the hospital admitting office and deals with insurance claims everyday and she has researched into it. and its a definate no.

i am still looking for more advise. i read something on the internet that someone had an implanted magnesium pump kinda like a insulin pump. i wonder if that would work?

well anymore ideas i would love it. thanks, curleysue.

brigaily2000 · Feb 16, 2005

I am so so sorry to hear of your situation.

I have a bottle of liquid magnesium called "Biogenics Magnesium Lotion" which I rub on my legs every night to stop the leg cramps. It works for me. Let me know if you need further info...ordering, etc. You are in my prayers.