So I guess I'm having some of the side affects of the pred. But it's not working to help my symptoms..does that make sense?

The worst are the muscle spasms. They are constant every couple mintues, in multiple parts of my body. Then the headaches, and tingling.

Do any of u have these symptoms?

Hi Tyson,

I have muscles spasms. The ones I get all over are from the Mestinon, I think (more like twitching). The ones I get in my feet, calves and sometimes hips are from the prednisone, I think. Those are really painful, and make my feet go into contortions.

Are you taking vitamin D3 and calcium? Make sure you take those because the pred. blocks absorption of D3 and robs the bones of calcium. I take 1000 units of D3 and 1500mgs of calcium. I just found out I have a vitamin D deficiency, so I'll prolly be upping my D3 to 2000 units per day for a few days, then alternate back to 1000 units for three days, and so on, for a couple of months, then I'll check again. I think you should maybe get your levels checked too because I think a deficiency might play a part in the spasms/cramps. Also, a lot of people with chronic illness (especially cancer and autoimmune diseases) have very low levels of vitamin D.

I know what you mean about the paradox of getting all the side-effects of pred. but not the benefits. I think that many people with MG might not benefit from pred., though, just because of the kind of antibodies that are responsible for their weakness. Some antibodies just don't respond to it. It's just a guess on my part (so take it with a grain of salt), but I also have a similar situation.

I read somewhere, or maybe read it here (can't remember) that if you don't do well on pred., you prolly wont do well on Imuran since they both suppress the same sort of antibodies, so this is something to ponder/address with your doc. when thinking about the next treatment you're going to try.

Hope this helps a bit, and keep on keeping on!
Nicky

Tyson, I sure hope you will bring this up BEFORE you have plasmapheresis. If you are overhydrated from the Prednisone, you could be having either hyponatremia (too little sodium) or too much depending upon your intake. Also, your potassium could be off as well.

Any time you have an imbalance in fluids, your electrolytes can be off. Electrolytes adversely effect several body systems, most importantly the heart, muscles and brain/CNS. It's nothing to mess with.

So when you have plasmapheresis, and you have an influx of fluids too quickly, you can get hyponatremia and other electrolyte imbalances. A good doctor will check for this after having it if you are having symptoms (i.e., muscle spasms).

When was the last time anyone did a chemistry panel on you? Looked at your kidney and liver function too (which is usually in a chem panel but not always)?

And when you get a lot of fluid, the kidneys have to work overtime. Accutane can be hard on the kidneys too.

And when you add "thick blood" to the mix, which might be happening to you due to the Accutane increasing cholesterol markers (possibly fibrinogen and c-reactive protein too), then you have a potential disaster on your hands. Think of a balloon (like arteries) that gets too full of water. It also affects blood pressure. Pressure in arteries is complicated - I'm not even going to go there with you.

Just get your docs informed and thinking about all this before they do more harm than good to you. Keep the pheresis slow. And press that nurse call button if you experience ANY symptoms.

Okay, enough of my lecture. I hope it all goes well.

And please don't take potassium. The symptoms of too much and not enough are basically the same. Until you have it checked, you can't tell for sure if this is an electrolyte imbalance, your MG or something else.

Annie

Nicky - Were you trying to be funny? I sure hope you aren't taking Pred with "a grain of salt."

Actually, now that you mention it, Annie, I was going to throw in a bp/salt/prednisone joke after my comment, but it started getting too long and just wasn't funny anymore, so I threw the salt (joke)- over my shoulder! *drum roll with high hat* lol

Thanks Nicky for your response- I am taking vitamin D3 and calcium, im not sure why im having them, but its just another thing that ****** me off

Annie: I will mention to them about all the muscle spasms, and before very plex, they do a potassium level to make sure I will be okay throughout the procedure.

I had a chem panel done last week (I think). I had her check the ProTime/INR C reactive protien and Fibro. She said the first was normal, (not letting me know which it was) and the second was a high normal, and the other is still pending.

I got a call from my dermotologist about the accutane, saying my liver function was a little higher than they want it to be, but want to increase it. But my insurance just stopped covering any form of it, and its 500 dollars without it, so i am stopping the accutane.

Yet why would he be okay with my liver function being a little too active? And should i be worried about the normal high test?

Thanks again.

the spasms in calve and feet are from a potassium shortage helped sorted out by taking a potassium supplement .
Caused as usual by pred upsetting the sodium/potassium balance.

Prednisone affects (depletes) magnesium too. (as well as potassium).

This article explains it.

http://www.peacehealth.org/kbase/cam/hn-1346008.htm

One of the highest food sources of potassium is V8 juice.
12oz can has 600mg + (the low sodium has a bit more).

Another high source is canteloupe. 1/2 cantaloupe can have up to 1,200 mg of potassium.

Tyson,
I have muscle spasms in my rib cage and sometimes in my feet at night. The ones in my side and ribs are painful and I literally have to get up and stretch them out. I agree with the others that it is from a lack of Potassium. I notice mine are much worse on days I don't get enough. I don't take any supplements but do try to eat a banana every single day. I also drink the low sodium V-8 juice. I'm not a fan of broccoli but my Drs. nurse told me it has a good amount of potassium in it too. I can also tell you the body responds pretty quickly to it. I try to drink V-8 juice in the morning and then eat a banana at some point through the day and if I do this the spasms are minimal if any. Hope this helps.
Kendra

Tyson,

I do not take pred but I do get the spasms and headaches and tingling, I believe it is the Mestinon, as that is the only medication I take for my MG.

Sometimes the spasms are so bad in my hands and feet I have to scream through the pain. According to my blood work my potassium levels are normal.

I'm going to repeat this again, not against anything that has been said but in the name of common sense. You can't tell by guessing if you have too much or too little of an electrolyte. Yes, Pred can deplete potassium but health situations are complex, with many things coming into play like other health conditions, drugs (like Benadryl), diet and metabolism (and lovely things like capillary permeability). So please check with your doctors before you do anything that could send your MG downhill.

If you have any kind of kidney issue, which Lizzie is very aware of, too much potassium can cause the same spasming of muscles. And you can have too much magnesium then too.

Any new symptom should be told to your primary physician and/or your neurologist.

I had an overload of potassium, due to retention of fluid/electrolytes, and it affected my heart to the point of feeling like it was going to stop and needing to go to the ER. PLEASE do not take too much of any electrolyte. Too much calcium can lead to kidney stones. Unless you've had a problem with "electrolytes" I can understand that it would be easy to pooh-pooh their impact on your body. It's not fun and can be very dangerous.