Predreduce & Muscle Cramps & Methocarbamol

[Birdie]

I've been on 5 mg for almost three years. Reducing from 80 mg about killed me and I stopped at 5 mg because it was the Dr. suggested goal, not because I had issues at a lower dose.

I have had some eye problems, minor muscle cramps & spasms plus the world's worst fatigue. Possible pred related side effects which could be improved by reduction of prednisone. After all this time at 5 mg, I reduced it to 4 mg. In two days I got MASSIVE muscle cramps and spasms. Every muscle in my arms, legs, hands and feet have misbehaved at least a little bit, some muscles have been very bad.

Yesterday I went to the VA emegency room asking for my miracle cure of 375 mg Lorzone. They don't have Lorzone but prescribed 500 mg Methocarbamol. I took one Methocarbamol and almost immediately got the entire list of common side effects. "Drowsiness, dizziness, lightheadedness, stomach upset, nausea/vomiting, or blurred vision" and impaired/confused mental function. I'm already nuts, I don't need pills for that.

Anyone have another solution?

Got any over the counter help for muscle cramps?

[Pete]

Hi Gary,

I took potassium supplements (a 99 mg pill daily), ate a daily banana, and occasionally drank a bottle of tonic water. I don't have kidney issues, so I didn't have any problems.

[Birdie]

I took potassium supplements (a 99 mg pill daily)

1) potassium supplements
2) Whatever Anne suggests
3) Somebody else with a brilliant idea

I'll get some potassium. Already eat bannaners, have to, the birds don't eat a whole one. The ER doc couldn't give me a prescription that would be valid outside the VA pharmacy, else I'd get it at Wallgreens.

[Alysia]

Hi. I am sorry for the tough time you are going through. I am on pred 5 mg daily at least, for already couple of years. I tried to reduce even to something between 5 and 4 mg but I just cant. I get CRAZY headaches, pains in the joints and muscles, ears pains and God knows what else. I stopped trying to reduce it about 2 years ago. Pred 5mg is my foreever friend. Its not too bad. Go back to at least 5. My sweet dr. Phil said that when you are back, you need first even more, around 7-8 mg if its only 2 days. Hang in there and update us.

[Green Grass & High Tides]

I too get muscle twitching, cramps and can no longer tolerate flexeril (same family as the one they gave you in the hospital) when tapering off pred.
To me this is really a bigger issue of inadequate involvement of Endocrinology in the use of steroid dosing. There may be a simple steroid balance that removes all the side effects.
I also, believe there is significant evidence in many fields that subtherapeutic use of steroids has a paradoxical effect on autoimmune diseases.

Prednisone is catabolic. It eats muscle, causes muscle problems, atrophy. There are other meds that help the spasms but you ask about non med solutions.
For me raising anabolism is key with prednisone control and overall wegeners control. I stayed off meds for 10 years using this as one part of a holistic tx method for managing persistent wegs.
So, exercise and select protein intake works well for me with the prednisone induced muscle issues related the catabolic effects of glucocorticoids. Spasms, cramps, atrophy, weakness...
I have to use a tapered approach. Walking to the point of pre exhaustion (not exhausted), light weights daily - no counting reps, just lifting light weight, focusing on the movement only and stopping at the point of pre muscle exhaustion (not exhaustion). This takes an hour a day but if I do it, when I do it, it works. Done daily, the distance and amount of repetitions increases naturally and the body naturally compensates for the glucocorticoid imbalance.

There is a ton of solid, long term control studies on this stuff but not enough on wegener's specifically. Here's one article with good info, links and some treatment findings...

Catabolic effects of Steroids-
Glucocorticoid-induced myopathy: Pathophysiology, diagnosis, and treatmentAnu Gupta (http://www.ncbi.nlm.nih.gov/pubmed/?term=Gupta%20A%5Bauth%5D) and Yashdeep Gupta (http://www.ncbi.nlm.nih.gov/pubmed/?term=Gupta%20Y%5Bauth%5D)1
Author information ► (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#) Copyright and License information ► (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#)
PathophysiologyGlucocorticoids alter protein metabolism. They decrease the rate of protein synthesis leading to muscle atrophy, but the main effect is to induce muscle protein catabolism.[3 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref3)] In experimental data from rat studies, muscle atrophy resulted mainly from increased protein breakdown in adult rats, and depressed protein synthesis in aged animals.[5 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref5)]
….In cases of Endogenous Cushing's syndrome, elevated levels of ACTH may also be myopathic. Excessive amounts of ACTH can impair neuro-muscular transmission by decreasing the quantal content of the end-plate potential. The ACTH excess, therefore, may have myopathic actions that are separate from those of glucocorticoids.[4 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref4)]
Hypokalemic myopathy is induced by glucocorticoids with high mineralocorticoid activity…”
TreatmentThe treatment of underlying etiology for glucocorticoid excess state is important. For exogenous cause, reducing steroid dose, alternate day treatment regimen, and switching to a non-fluorinated agent are associated with improvement in muscle weakness.[15 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref15)] An increase in muscle strength can be observed within 3 to 4 weeks after discontinuation of the glucocorticoid. An adequate protein intake is helpful in preventing rapid acceleration of symptoms.[15 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref15)] Physical therapy may be useful in preventing and treating muscle weakness in patients receiving glucocorticoids.[19 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref19),20 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref20)] Some of the experimental treatments that have been used in glucocorticoid-induced myopathy are IGF-1, branched-chain amino acids, creatine, androgens, and glutamine.[3 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref3),6 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/#ref6)]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/ (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784879/)

[Birdie]

Hi. I am sorry for the tough time you are going through. I am on pred 5 mg daily at least, for already couple of years. I tried to reduce even to something between 5 and 4 mg but I just cant. I get CRAZY headaches, pains in the joints and muscles, ears pains and God knows what else. I stopped trying to reduce it about 2 years ago. Pred 5mg is my foreever friend. Its not too bad. Go back to at least 5. My sweet dr. Phil said that when you are back, you need first even more, around 7-8 mg if its only 2 days. Hang in there and update us.

Thanks for any input Alysia. My problem is two fold, first is that I can't usually even walk more than to the bathroom and back. That leaves me exhausted, can't do much more until I've had at least 30 minutes to recuperate laying flat on my back. Second problem is that this group is my best access to medical care. So I'm trying to find a way of improving the fatigue issue without allowing WG to pop back up.

I'm planning on sticking with the plan to reduce pred by 1 mg a month as long as I don't get Weg symptoms. I recently got authorized for once a month blood work so I'll reduce to 3 mg if next month's test doesn't show a problem. Unless Anne logs on and tells me what to do. :) :) :)

[Birdie]

I too get muscle twitching, cramps

Here's one article with good info, links and some treatment findings...

I don't know about your cramps but friday night mine were clearly bad enough to be causing severe muscle damage. I had none last night due to the Methocarbamol. I'm not sure which was worse, the cramps or the treatment. I'll find out tonight, aint taking that stuff again.

Thanks for hints and links about this issue, I'll be studying that stuff for a couple days, at least. Right now I gotta go eat me a bannaner.

[annekat]

1) potassium supplements
2) Whatever Anne suggests
3) Somebody else with a brilliant idea

I'll get some potassium. Already eat bannaners, have to, the birds don't eat a whole one. The ER doc couldn't give me a prescription that would be valid outside the VA pharmacy, else I'd get it at Wallgreens. Moi? I do get some annoying cramps in my feet and calves when trying to fall asleep at night. I have bad bunions and some neuropathy in that area, too. I do eat a banana most days. Wearing a special pair of socks that separate my toes helps. But I hate the feeling of socks in bed and end up removing them after awhile. I do eat a banana most days. Might try the tonic water, though it would be nice to throw a little gin or vodka in there, too, with a lime wedge. (No, I really don't drink while on MTX, just occasionally, use my own judgement.) I think I like the idea of trying the potassium supplements.

[Birdie]

I hate the feeling of socks in bed and end up removing them after awhile.

LOL... Laundry day Sue never had any socks to wash. Odd that there was always a big lump under the covers at the foot of the bed.

[annekat]

LOL... Laundry day Sue never had any socks to wash. Odd that there was always a big lump under the covers at the foot of the bed. I made it through the whole night with the toe-separator socks on! Must have been tired. These things are so cheap that they pick up all kinds of dirt and pills very easily and never look clean even when washed. I wish they made them in black instead of white. I know there are better kinds of toe separators on the market, just need to keep browsing online and decide on something. ideally, they should be comfortable to wear inside of shoes or in bed. I'm a big fan of toe separators, although I know they would not address everyone's cramping problems. I also get cramps in my fingers and have no solution for those.

[Birdie]

I also get cramps in my fingers and have no solution for those.

Lorzone. I had no side effects just near instant relief. One pill lasted for days if the cramps were minor.

[annekat]

Lorzone. I had no side effects just near instant relief. One pill lasted for days if the cramps were minor. Great! I'll have to check that out.

[annekat]

Well, I went out and bought a bottle of 99mg. pills of "multi source" potassium, as Pete suggested. Vegetarian formula, and it says to take 1 tablet a day preferably with a meal and a full glass of water. But the label says a dose is only 3% of the Daily Value. I sort of wonder what's up with that. But I will give it a shot.

Looked up Lorzone briefly and it said not to take it if you have liver disease. I don't, but I do take MTX, which can contribute to liver problems over the years, so I wonder.

[Birdie]

a dose is only 3% of the Daily Value. I sort of wonder what's up with that. But I will give it a shot.

Looked up Lorzone briefly and it said not to take it if you have liver disease. I don't, but I do take MTX, which can contribute to liver problems over the years, so I wonder.

Today I finally got assigned a primary care doctor with the VA who actually takes appointments, got an appointment scheduled and it's only a few weeks away. It has only taken since April to get to this point but at least it's a start on getting health care. This issue goes on my list for him.

The 99mg - 3% daily thing is claimed to be the limit before causing stomach issues.

[Pete]

Just googled m.zostavax.com: Shingles vaccine contains weakened chickenpox virus. It is not recommended for those with weakened immune systems or taking high-dose steroids.

[annekat]

Today I finally got assigned a primary care doctor with the VA who actually takes appointments, got an appointment scheduled and it's only a few weeks away. It has only taken since April to get to this point but at least it's a start on getting health care. This issue goes on my list for him.

The 99mg - 3% daily thing is claimed to be the limit before causing stomach issues. Glad you got an appt. Yeah, I did some research on the 99mg. potassium and saw the problems with the pill at more than 3% of RDA, but it makes me wonder how much good it really does at that low amount compared to what we are supposed to be getting from foods. So I'll keep eating bananas and find out what the other foods are.

[annekat]

Here's a good link on potassium with a list of foods that are high in it.
Potassium Food Sources, Benefits, Deficiencies, and More (http://www.webmd.com/food-recipes/potassium-sources-and-benefits?page=2)

[Bing505z]

To take in just the average daily recommended amount of potassium (4700mg) you would have to eat more than 10 bananas each day. So if you want to believe in that myth, get to peeling...lots of peeling, and this, more than likely, would be in vain...nonsensical. Too many variables with cramps, but you can bet it is not completely a lack of potassium, which is nonsense, but a combination of things like a lack of magnesium, calcium, and other minerals. Also it could be ergonomics, staying in a certain position for too long, various medications, lack of blood flow, being inactive, lack of stretching and conditioning, being dehydrated and the list goes on and on.

I asked by Doc about it, he said the most important nutrient missing when you have cramps is water. Next he said it would be magnesium, and he said if you want more potassium eat these foods: Acorn squash - 896 mg of potassium (more than twice as much as a banana); baked potato with skin - 844 mg (2X a banana); spinach (cooked) - 838; lentils - 731; kidney beans - 713; split peas - 710, white navy beans - 669; butternut squash - 583; watermelon - 560; raisins (1/2 cup) - 553; yogurt (1 cup low fat - plain) -531; orange juice (1 cup) - 503; Brussels sprouts - 494; and zucchini - 456 of potassium.

[Bing505z]

But the label says a dose is only 3% of the Daily Value. I sort of wonder what's up with that.
They want your money...that's whats up

[annekat]

They want your money...that's whats up But they are only recommending one tablet a day, which is not going to add up to a lot of money, over time. Others have given reasons why more than that in pill form would be harmful and that is the standard listed dose regardless of brand. I have NOT been using the pills, though, as I quickly realized they didn't make a lot of sense, and that the dietary method was the way to go. So I guess they did get my money in the original purchase, which was maybe around $3, but won't be getting it again.

I have discovered banana chips as a good snack and don't know how many bananas per day I'm ending up eating, though I'm sure it's less than 10, but I certainly prefer it to sitting there peeling banana after banana. Also, I've recently been eating a couple of baked potatoes a day, along with the skins, so am glad you pointed out how high they are in potassium. There's a lot of fresh squash right now, too, at the farmers markets and such. I haven't been going about it in a super organized way, but it is a great idea to keep these lists on hand, the one you posted and the one I linked to, and keep them in mind every day. No doubt, most people are unaware of these facts and really need to be educated on how to eat for potassium content.

[drz]

My doctors have told me the most likely cause of most of of my cramps is not enough water or a side effect of my various meds. Mineral deficiency can occur but this will generally show up on routine lab work when they test for such things. A normal diet usually is plenty sufficient along with a multi vitamin.