Hello everyone! I hope this post finds you all strong and happy!

Recently I've had really bad problems with my head heating up - sweat will just pour down - I won't be hot anywhere else, but it feels like my head is on fire! I use a bag of ice to cool it down, but wonder what it could be.

I've also noticed that since taking my cellcept @ 2000 mgs, my appetite is totally GONE! I have to literally choke down food. I am still @ 60/40 pred, so wonder I'm no longer hungry.

Lastly, my ankles have been HUGE recently - the size of my calves.
I called my neuro to try and get some water pills but he wants me to go see my PCP = he doesn't want to "mask" anything and says there is no reason for me to retain 10-15 lbs of water weight in my ankles........

Does ANY of this sound familiar to any of you? I know it's silly, but I am afraid of congestive heart failure or something like that. I eat almost no salt, no soda, take my vitamins regularly and get on my EFX when I have the time/energy.......

Thanks!
Erin

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

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

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

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

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