A few questions......
 

Back when I was on immune suppressants with the pred. I had the same effect & lost weight on them, even though I was on 60 mg of pred. I did not have the swelling in the legs that you have though. Maybe they need to do labs for your liver & kidneys, as I know those drugs can effect the function of them & cause swelling. I did have liver function trouble, when I got up to high on the methotrexate & immuran I was on, so they backed me down on my dose & my liver level did better, I had no energy when that happened, very weak. He is probably sending you to your pcp, do do all the lab work on you. They used to do labs on me every other week to monitor liver function, while I was on them.
Hope you get some answers soon!
Take Care Erin,
Mary

Hi Erin
 

sorry to hear you are having trouble with retaining water.

Your neuro is doing the right thing, like Mary said you need your liver and kidney function tested, which is done through a blood test and they can also check your urine.

Prednisolone or any steroid can make you retain water. I was puffy all over couldn't wear rings etc.

Im not a Dr but swelling legs sounds more like your kidneys, so better to get this checked than hand out water pills. Better to be safe than sorry.

Hope you feel better soon

Love
Rach

Hey Erin,

I haven't had this happen to me, but I've never taken any of those drugs either. Like Mary and Rach said, it could be caused by your kidneys or liver so see your GP as soon as you can so you can get the labs done. Did your neuro think it could be caused by the cellcept since that's when it started? Take care and hope you get some answers soon.;)

Hugs,
Pat

Hi Erin,

I have the hot head cool body thing, its really wierd. I notice when I turn on my heater at night, my face will feel flushed and HOT, but my body will be cool.....I just put it down to my wierdness : )
I still crave food, and my ankles havn't swollen as yet, thankfully.
hope you get some answers soon!!
take care
Kate

Erin, There are lots of reasons for water retention. I agree with your neuro. Finding a cause is far more important than throwing a drug at a problem. Kidney problems can cause water retention. Renal artery stenosis or other arterial problems like peripheral artery disease can cause it.

When was the last time you had a chem panel? An ECG or echocardiogram?

It sounds like you are on a steady dose of Pred, however you are going every other day. Even that drop from 60 to 40 can cause signs of an adrenal crisis. That includes sweating and feeling hot. Maybe you need to be on a steady dose of Pred or you might need to come off of it (of course, if that's what doctors think). I know someone whose doctor had her do that every other day dose thing and she almost had an adrenal crisis.

You have to see someone right away. If your kidney function is tanking, that's dangerous. Having drugs to make your MG better is great but they don't come without huge risks.

I hope they can figure out what is going on. I'm sorry you aren't doing well.

Annie

Erin,

I had the same thing happen to my appetitie when I was on cellcept and Imuran. It makes it difficult to take all your meds when you don't feel like eating. It is certainly not silly to be afraid of CHF, I have often thought of that myself being on all of these medications. You are doing a lot of the best things, eliminating salt. But do see your PCP asap to find out what is going on. As far as your head getting hot, that didn't happen to me on those meds, but sometimes that happens with hormone fluctuation. You seem young for that :) I hope you are doing better and keep us posted on what your PCP says. I'll be thinking of you! Dorothy

Erin,

If you don't mind I have a question. I noticed on another post you mentioned chronic yeast infections. I am SO tired and frustrated of this problem. I have tried everything, of course I'm always on probiotics, I have also tried, boric acid suppositories, baking soda, represh, a month of Diflucan. All with the direction of my GYN (who is great) I'm sure there is more I can't remember right now. I still have the problem. I was wondering if you had any success in treating this problem? Thanks, Dorothy

Hey guys!
 

1Hello all! Thank you for the responses:hug:! I really appreciate them!:D

I have my liver and kidneys checked every week now that I am on the Cellcept again - CBC and CMP, and the results are always great, which leads me to believe that something else is going on here. I see my GP on the 24th @ 8:30 to discuss it with her. I just hope that she can figure out why they SWELL so much! YEAST infectons - well they've pretty well gone away on their own. I still have constant and I thrush -and I do mean CONSTANT, but figure it is better than the other! LOL
How are you all doing?Are you feeling OK?

Love,
Erin:D

Strange solution
 

I hope this won't gross you out but I discovered this solution to yeast infections from a friend of mine. Take a tampon, soak it in room temperature plan yogurt and insert it vaginally. All the good stuff in yogurt is absorbed in your system and it works like a charm. You may have to do it a couple of times. This has helped me when RX meds did not. Might be worth a try.

Martha

Ankles
 

OH girlfriend I can relate. I'm on Pred. and my ankles are disgusting. In fact I can't wear those knee hi nylons without them biting into my skin. HATE IT! HATE IT! HATE IT! I also have the fun moon face, bulge at the back of my neck, and big belly. Also get hot and sweaty easy. Did I mention that I HATE steroids. I feel for you girl.

Hey Martha!
 

What a GREAT idea! I'm going to try that 2morrow!

Big hugs!
ERin:hug:






















ank

No offense, guys, but before you put a food product up your vagina, check with your OB/GYN first! Topical solutions to what is clearly a systemic problem are only temporary solutions. And when food sits around in your vagina, it can cause even more problems when it "goes bad." You aren't supposed to eat yogurt after it's been on the counter for an hour or more because it can actually grow bad bacteria. It'll do the same in your vagina and even quicker because of the temperature in there. And how do you know that it all comes out? Drugs that you insert into the vagina are different - they are made not to go "bad" when exposed to higher temps.

Do you guys take probiotics? Do you take omega 3's? There are many other solutions to this situation. I would highly suggest a trip to your internist and/or OB/GYN!!!

I normally love good, alternative medicine but this is not really well thought out. Sorry, Martha, but I need to be honest here.

Annie

Annie,

You make a valid point. I was thinking this is a great idea. I take probiotics religiously, a very expensive one (Floraq-2), omega 3, recommended from my gyno. Also, as I have mentioned, I was on Diflucan for one month, tried boric acid suppositories, baking soda, rephresh. All of these under the supervision of my gyno. I have elminated sugar from my diet. I still suffer from yeast constantly. I am VERY frustrated. Thanks for your input.
Dorothy

Yeast Infection & Hydrogen Peroxide
 

Here's what my doctor recommended and it worked fast for my yeast infection cure (I rarely get yeast infections since curing them this way)

Hydrogen Peroxide mixed with water. I can't remember the exact ratio she(my doctor) recommended, but it was about 1/4 of the syringe filled with Hydrogen Peroxide and then the rest with water. Insert slowly with one of those syringes used to measure liquid medicine. Do this daily until symptoms go away. I am not a doctor so research this method before trying.

The reason Hydrogen Peroxide works is that your vagina naturally produces it to keep itself infection free.

I'm back from vacation!
 

Hi folks! Wow this forum is getting really BUSY...lots of new members, and Welcome to you all.

I am reading and trying to catch up, so I thought I'd make a few comments on this thread.

1) Steroids also raise blood sugar...when this happens some patients (women especially) may see Candida appear.

2) the remedies for vaginal dysbiosis are commonly out there on alternative sites. Like the yogurt and hydrogen peroxide ones.
I agree with Annie...that yogurt is a food thing, and really the benefits can be duplicated with probiotics taken orally. There are studies showing probiotics help vaginal and urinary tract infections in addition to GI benefits.

The hydrogen peroxide suggestion leaves me with some reservations too. My dentist for example, does not recommend H202 use often in the mouth, because he says it can irritate mucus membranes and cause MORE problems.
Using it as a vaginal douche or wash diluted or in smaller volumes too frequently will kill off beneficial organisms that live in that area that keep it healthy.

I searched the net today looking for medical sites that recommend yogurt or H202 and couldn't find any quickly. All I found were alternative sites or forums with comments from other people (anecdotal).

There is a product called RepHresh, which is OTC now, and designed to keep the vaginal canal at the proper pH for normal bacteria, and to discourage odor or dysbiosis. It is expensive however.

One thing I think is overlooked is oxalate that is excreted in the urine. This becomes oxalic acid...and can be very irritating.
There is an organism in the bowel that normally keeps us from absorbing too much oxalate from food. Oxalobacter formigenes. It is killed off by some antibiotics commonly used. Then the oxalate is absorbed and goes thru the kidneys, stopping off to perhaps make kidney stones (calcium oxalate) or just eliminated.

Here is a list of foods that are high in oxalate:
http://www.branwen.com/rowan/oxalate.htm

Some high end, very expensive Probiotics claim that other organisms they include help with oxalate. But I have not had personal experience with them, to be able to verify that claim.
Here is further info:
http://74.125.95.132/search?q=cache:...&ct=clnk&gl=us

This one is the only one tested so far that worked on Oxalate:
http://www.vsl3.com/
It is expensive however.

Hope this helps.

Wow MrsD,

thanks for all that info.
I suffer quite badly from oxalate itchyness, it use to be HORRENDOUS!!!!!!!!!! I now stick to low oxalate foods and take calcium citrate which also helps to counter act the oxalates. I will look into the pro biotics tho.

HI Leaningin!
 

WEll, saw my PCP who gave me water pills for my really, really bad days..you would not BELIVE the difference it makes! I had CHEEKBONES! LOL!
So far I've only taken 1, but it was GREAT! I've also got a bone density test scheduled, and loads of other tests scheduled!:D

I bought some Spanx for my tummy, but they don't seem to help much, so I'm just switching up a size (now officially a 14 - was a 2-4), but darn(!), the deals on ebay are amazing! My hubby knows I have never, ever shopped like this b/4 and how insecure I am, so he has been great to me!

How are you doing? Are you OK?

Love,
Erin:D

Hey baby girl - hot head, huh? LOL

Were you ever able to get someone to check you for the viruses? I had this exact same problem, which cleared up completely within 4 days of starting my high initial does of the anti-viral. It's back in much milder form now that I'm only taking 400 mg per day. My LP results should be back soon, and I'll for sure let you know about the viral aspect - I just feel there is something (infection) hidden on you that is causing your MG to be so serious now. I posted my discussion with the MDA neuro about how this viral thing could affect the MG.

As for swollen ankles - yes I had huge ankles and went to the doc about it. The had me buy some compression stockings ($38.00!) which I wore initially for a few days. Now only if I swell. I was so surprised to see how thin my ankles and feet really are!!LOL. It could be lymph passages not circulating as they should, rather than blood. Blood would cause discoloration and I was told to watch for that, but didn't have it - other than my little spider veins which they were'nt real concerned about.

Try the stockings, and please get someone to run the blood test for the antibodies to the whole range of viruses they can test for! You are sounding too much like me, and you're too young to have to deal with this, but if you have an active virus they can control with the viral meds, you can get better control of the MG and hopefully get off some of that other crap you're on!

Love to you, Erin. :hug:

Martha
lol...... Thats awsome !