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jeriorleans
10-08-2009, 02:00 AM
Is this called by the Predisone or the Cytoxane. A.J. is having bad leg cramps at night. He also is very nervous since taking the Cytoxane. Any one have any suggestions about how to alleviate this?

Sangye
10-08-2009, 02:10 AM
The leg cramps are due to the pred. Pred depletes magnesium. Give him magnesium supplements (ionic/dissolves in warm water) each day and it will help.

Two don'ts with Magnesium :
1) Don't take too much or it will cause diarrhea. Just take the recommended dose on the bottle
2) Don't take it with meds or they won't absorb properly. Bedtime is great, since magnesium is a natural sedative and will help him sleep. Otherwise, 2-3 hrs after meds or 1 hour before them.

Doug
10-08-2009, 02:24 AM
Is this called by the Predisone or the Cytoxane. A.J. is having bad leg cramps at night. He also is very nervous since taking the Cytoxane. Any one have any suggestions about how to alleviate this?

Is he drinking lots of water while on the Cytoxan? That seemed to help the cramps for me. It also helps flush out that part of the drug not used by the body. Of course, bringing cramping up with his doctor the next time he has an appointment is a good idea, too, but be prepared for a new prescription! I'd ask first, though, for non-prescription suggestions from the doctor, and how they might affect AJ as it seems every thing put in the body has its positive and negative outcomes.

jola57
10-08-2009, 06:16 PM
I remember waking up with bad leg cramps but with meds they went away quickly. Now I only get them rarely.

firecracker
10-15-2009, 12:51 PM
I also had the leg cramps. I thought they were from the mtx but they were from the prednisone. they have let up again for the most part at least.

jola57
10-15-2009, 03:56 PM
Mtx only makes me sooo tired I can sleep at a drop a a hat.

coffeelover
10-22-2009, 09:32 AM
I am always tired the evening and next day after my mxt dosage. Now I know it is not just me

RCOSSIO
10-25-2009, 11:05 PM
The magnesium helped substantially with the cramping...I know the feeling waking up in the middle of the night with the cramp...arrrrgghhhhh.

I drank the magnesium powder right before going to bed..as Sangye said it does alleviate some of the cramping. Good luck and hang in there it will definitely get better. :)

Sangye
10-26-2009, 12:14 AM
I've been feeling pretty lousy these days--mostly due to the whammo dose of pred given during each ritux IV. The other night I woke up to a giant charley horse in my leg. I was so exhausted I didn't even move. You know how you instinctively start stretching it, squirming with pain, etc...? Nothing. I just lay there, totally wiped out.

I don't look at my blood work much these days--I tend to get a little over-involved if I monitor every one. :o But last week's showed bad anemia (just above transfusion level) and very low protein. Low blood/ oxygen plus low protein = very low energy. Bleh.

Tuesday is the last ritux IV-- it kicks in after this one, and I'm officially putting it on notice : Ritux! Get to work! Nobody likes a lazy monoclonal antibody!

Kimbangu
12-18-2009, 10:58 AM
I have been getting these leg cramps every morning and I did wonder if it was the prednisolone. I am on 60 mg per day at present and was hoping that if/when we start cutting the dose, the cramps will stop.

Thanks for the tip about the magnesium, which I find very helpful.

RCOSSIO
12-18-2009, 11:03 AM
My leg cramps did go away after reducing my pred...I think they disappeared when got to 15mg. Anyway it will go away...hopefully.

Sangye so sorry to hear....hoping you get better :o

RCOSSIO
12-18-2009, 11:05 AM
Sangye...my bad...it was an old post...Guess what my memory "SUCKS"

Sangye
12-18-2009, 11:12 AM
LOL-- well, your wish came true. I do feel better! Good job.

elephant
12-18-2009, 01:05 PM
Make sure you check your potassium level. I had to be on potassium pills when I was on high doses of Prednisone. :)

firecracker
12-18-2009, 02:26 PM
Im glad the magnesium is helping. Im not sure if I mentioned the milk thistle or if you read about it but it helps clear toxins from your liver. Since most of us are on these hardcore meds that damage the liver, you may want to try it to. I know it helped my liver numbers that were rising.. get to normal again and two of my friends that have hep c that had really bad liver numbers.. both were in range within two months. i take two a day.

Sangye
12-18-2009, 02:36 PM
Milk thistle is a wonderful herb. It both detoxes and heals the liver. But use very little if you're on any drugs because it will detox the drug out of you, too. (Herbs can't tell the difference between unwanted toxins and drugs)

Someone with Hep C can take a regular dose, since they're trying to heal their liver. But you should not, because you'll lose the drugs you're on.

firecracker
12-18-2009, 03:36 PM
Thanks Sangye. i didnt think into it that far that i may be actually removing the meds. i also can not figure out how to post a new post asking about imuran and i cant find any posts about it either. I am about to start taking it tomorrow and would really like to hear from people that are on it so i can get a better perspective on it. i know you said a lot of people tolerate it well. i am usually in that group that has the rare side effects from everything. just like dapsone. its rare but i ended up in the er with my oxygen level way too low. i felt fine but they constantly kept asking "can you breathe better now". lol. i was in there to get a bone marrow aspriation, biopsy and something else and they wouldnt do it because of the level. i had to go back later again for it. the doc wants me to take the imuran in the am. i think i should take it at night or evening after i eat. why ruin my whole day being sick from the med? what do you think?

katwoman
12-18-2009, 05:56 PM
the doc wants me to take the imuran in the am. i think i should take it at night or evening after i eat. why ruin my whole day being sick from the med? what do you think?

Firecracker, I was changed over from cyclosphamide to Imuran and really don't remember any side affects, I had to take it in the morning as well. I am currently on Methotrexate and I have to say I suffer more side affects from that after taking it friday evening then either the cyclosphamide or Imuran which was taken on a daily basis.
katwoman

Jack
12-18-2009, 06:01 PM
also can not figure out how to post a new post asking about imuran
Go to - Home

Go to - Medication

Click on the "New Post" tab at the top of the list of topics

Give your post a title and away you go! :)

firecracker
12-19-2009, 05:10 PM
it sounds so easy. i think it probably has something to do with the beer i was/am drinking that makes things a little hard to figure out lol. i know.. bad.. beer. but just tonite then off to imuran land tomorrow. ugh.

firecracker
12-19-2009, 05:12 PM
Thanks! that makes me feel a lot better about the imuran. I mean, the mtx SUCKED. i hated that crap. i truly felt like i was being poisoned weekly more and more.. and i think i was. i felt worse and worse. when i stopped it, i felt so much better. then i went downhill bad two mths later. now.. im back to like last year... bad bloodwork. almost as bad as it was then. the pred helped a ton.. pain wise and numbers wise but i have to stop the process causing the pain so hopefully imuran will work and work quick. i get toxic really fast. i hope mtx works for you.

Sangye
12-20-2009, 02:22 AM
I don't have personal experience with Imuran, but I've always heard people say it was a piece of cake. No side effects. I hope it's that way for you, Firecracker.

snooz23
12-20-2009, 07:37 AM
Firecracker--could you post a little something about the crappy feelings you had on meth.? I started at 15 and increased up to 25 now and don't like how it feels, however once again I never know if it is due to the drug or disease. So what side effects did you experience?

Terri
12-20-2009, 11:48 AM
I was on Imuran for almost 8 months without any problems and then the Dr. changed me to Methotrexate (8-2.5 once a wk) He said the MTX is less toxic:confused:
I seem to have a harder time adjusting. From the beginning, I seem to be more fatigued the day of taking it. At first I tried taking all 8 pills in the a.m. , but I couldn't stay awake. So now I break it up. 4 in the a.m. and 4 in the p.m. I still don't have any energy.
Last month I was put on Cipro for a U.T.I. I had a 60 WBC/HPF cells in my urine. This month it is reading 60 again and I also have a reading of 10-20 RBC
so my Dr ordered a urine culture. We'll see what is going on.

jola57
12-20-2009, 06:10 PM
I started with 6 x 2.5 once a week over 3 months ago and couple of weeks ago my rheumy took me down to 4 x 2.5 because my liver blood test was not that good. I have no side effects besides being tired.

katwoman
12-20-2009, 06:23 PM
Jola & Terri, I am wondering why you have to take so many doses of small tablets when like Terri, I am also on 20 but take 2 x 10, do they not have larger doses of methotrexate in Canada/USA?

I also find it makes me extremely tired, I take it around 7pm and about an hour later have to head to bed and I have been finding the next day my body aches like I have the flu and my joint pain actually worsens...this is my 3rd week and I am hating it, I have blood tests next week to check liver etc.

jola57
12-21-2009, 04:20 PM
Katwoman, I guess because my dose was 15 and my liver enzymes were up already my rheumy knew we were going to have to adjust the dosage. I am not tired the day I take mtx but a couple of days after.

snooz23
12-23-2009, 06:51 AM
What is the test that measures liver function/enzymes?

elephant
12-23-2009, 08:20 AM
It's SGOT AST, SGPT ALT and ALK phosphatase. There are other liver function test too. Many doctors order these lab test to make sure your liver function is normal. The medicines we take are metabolized by the liver. Some medicines are harsher on the liver. Hope this helps.:)

snooz23
12-23-2009, 02:18 PM
Thanks that is helpful. I see my Alk Phos has gone down by a couple points and is out of range on the low end? So do you know if you should be most concerned about it being low or high? Thanks!

elephant
12-24-2009, 12:01 AM
Hi Snooz23, having a low Alk Phos can indicate..low magnesium, high vit D, hypothyroidism, chronic disease, malnutrition and other ailments. Having too low of any lab value is abnormal. I would just ask your doctor what he/she thought about it. You can always call the nurse and leave a message that your concerned about your Alk Phos. I do this whenever I have a question.:)

firecracker
12-24-2009, 01:21 PM
I find it strange that when I took mtx, I was up to 17mg i think it was and I could not sleep for days after I took it. I felt like I had the flu everyday.. esp the day I took it. The longer I took it, the longer I felt horrible. I actually got to the point that I had to crawl to the kitchen to get a drink. I would go to walmart and have to sit on the floor until I could get up again and getting up... took every bit of energy i didnt have to do it. It made me feel very sensitive to the touch. I couldnt barely touch my skin. I def got the joint pains, muscle pains, shaky like you cant believe. If your liver numbers are bad, def try the milk thistle. It worked for me and two others I have told.

firecracker
12-24-2009, 01:23 PM
I hallucinated when I took it. I saw black shadows and things flying around in my side vision. It made me feel tired but i couldnt sleep. I just ached all over. Then i started getting that dry cough, sores on my skin and losing my hair so after 8mths i quit it completely.

Sangye
12-24-2009, 01:29 PM
Okay, all that is pretty bad. But the part that gave me the heebie jeebies was having to sit on the floor in Walmart! YUCK! :D

elephant
12-24-2009, 02:00 PM
Firecracker glad you quit that! Sounds like the methotrexate didn't like you.:)

jola57
12-27-2009, 09:52 PM
Wallmart and floor, ugh. Milk thistle, I will look for it and try it. Sangye, is it OK? My liver enzymes are up and so I cut down to 4 pills of mtx. Everything except liver, ANCA and creatinine is ok in the blood test

Sangye
12-28-2009, 01:33 AM
I truly can't say if milk thistle is safe for you to take. Can you find a naturopathic physician there who understands both herbs and pharmaceuticals? They can determine if it's safe.

coffeelover
12-28-2009, 06:41 AM
I always thought milk thistle was for exernal use. We used to put it on sores and cuts out on my grandpas farm......hmmmm

Sangye
12-28-2009, 06:46 AM
I don't know about external use-- probably is very helpful, since it has numerous healing properties.

onatreetop
12-28-2009, 02:47 PM
my sister-i-law swares by it but she takes no other meds to mix it with. I have thought about that and the microbiotics?? I think thats it? i was talking to a college kid that is majoring in nutiution and asked what he was told about the kymo pills and pred and what thay are doing and how to supplement without increasing the immune system that is being knocked down. he said first no c vitimans, then said fatty oils are good for rebuilding cells. That and the green drink. smells like fresh cut grass to me and looks like it too. Than I asked about the milk thistle and he wasnt sure. He did say that the microbios would be good to balance the organs and muscles again. I havent changed anything yet but am considering anything to avoid more damage or future damage. Any suggestions? the muscle soreness is getting worse with the swelling. I am still on the eliptical 30 minutes a day and it does help. If I dont get on I gain a pound that day and everyday I skip. So to maintain the current roundness I must do the 30 minutes or blow up like a ballon.

elephant
12-29-2009, 12:45 AM
Sorry to hear that onatreetop. Are your muscles swollen or joints? How much prednisone are you on?

Sangye
12-29-2009, 03:23 AM
Onatreetop, please get a proper evaluation by a holistic physician regarding supplements. A college kid reciting generalities is not okay at all and can do harm. Green juices are very detoxifying to the body. You have to be careful.

I also have the same questions that Elephant just asked.

onatreetop
12-29-2009, 04:00 AM
I am currently stuck at 30mgs. The swelling is in both but the joints arent as bad as the muscle as far as pain. joints are swore and knees are getting ache from all the work they do. I have noticed though if I sit, at all, I start blowing up more and quickly. i know the pred can do this but I am starting to wonder if it is the cytoxin? I have been having different more noticeable swelling and pain etc this flare. Soloway upped it to 100mg which I also know is not that high but the first dose he put me on was only 50mgs and everyone thought that was low and it was. But now at 100mgs cyt and 30mgs pred for my third week now. He had bumped me to 60mgs pred after Thanksgiving I think it was or around there. Then started the weekly visits and labs etc. Then week by week we went down to 30mgs and here I swell. I see him again on the 4th or 5th. I am afraid he will up it again . I know if I have to that I have to but the blood work showed nothing elevated and all was good. so...............................I feel swell!!!! Ha! Ha! Made it funny!!!!!

elephant
12-29-2009, 04:08 AM
Being on 30 mg of Prednisone should keep the swelling down, I would think. It sounds to me your still in a flare up. Facial pain, swelling, muscle and joint pain. I wonder if the medicine Sangye is on would work? I don't know much about how long the cytoxan should kick in. I have been reading that usually they( Rhuem docs) only want patients on cytoxan for three months because it's so toxic.

onatreetop
12-29-2009, 04:39 AM
I read something simular but my RA feels that it is nessecary for a year? That would be old school doc!! I did get one change back that was good for the first time weeks ago no more blood in my yurn . But he didnt seem to think that that was special really. The records were sent on the 10th!!! To JHU got to call them next.

Jack
12-29-2009, 05:10 AM
A year sounds like a long time to be on Cytoxan. As far as I'm concerned, it should be used as a shot, sharp shock treatment because its long term side effects are cumulative. You don't want to be using up all your luck on one long course of treatment because you may well need it again later if you have a flare.
I've pretty well worn out my allocation for this drug now and my specialists were getting very nervous about treating me with it again. Luckily I have not needed it.

onatreetop
12-29-2009, 05:26 AM
Thats my argument. But my RA seems to think that I have to be steady for a year to come off. Again the older treatment protolcal or text book? I have thought everyday about decreasing it myself and even stopping it because i am going into my seventh month, January will be. But I am afraid that I am flaring at the same time so? I need to get to the specialist and hope and pray they stear the RA the right way.

Jack
12-29-2009, 05:38 AM
You can't just come off cytoxan, you need to switch to something a little less toxic such as azathioprine.

Note that the long term side effects of cytoxan are very serious (I won't spell them out in case you are happier not knowing ;) ) and do not diminish once you stop taking it. The risk is also proportional to the cumulative dose you have taken.

onatreetop
12-29-2009, 05:47 AM
ok got the picture. Thank you again for the info another stupid mistake avoided. I will ask for new meds next week when I see the RA. hope you are feeling better soon too. Broken anything is no fun. I love to laugh so the ribs would be the worst. I can only imagine the pain. i feel for you and wish I could take some of the pain for you.

Sangye
12-29-2009, 07:07 AM
Onatreetop, I have a guess that the Wegs is not being controlled because your ctx dose is way too low. So it's like throwing a bucketful of water on a raging fire. But a year of it--whether low dose or full dose-- is ridiculous. I don't know that any of the Wegs specialists would think that's okay.

As far as the swelling/ ballooning up goes : When I overdo it (physically and/or emotionally), I get very puffy all over--face, neck, wrists, everything-- for several days. It's a result of the stress that pred is putting on the adrenals. I think you might be caught in a cycle where you overexercise to try and control the weight. But that causes more swelling because it has stressed the adrenals way past their capacity. Then you respond to that swelling by overexerting some more....

Ctx and pred are very hard on your body. Ctx does a lot of tissue damage, and pred depletes the adrenals and imbalances the entire endocrine system. I think at some point you're gonna have to back off and give your body the chance to recuperate.

elephant
12-29-2009, 07:38 AM
Sorry Jack about your broken rib. I know you can't put a cast on it. Sorry bad humor. I think your stearing in the right direction. Hope that rib heals real soon.

Jack
12-29-2009, 07:50 AM
Thanks for the thoughts. :)

It's the third time I've done it and the same way each time - reaching over the arm of a chair to pick something up. It's not as bad this time, I must be learning! But my wife is mad at me. :(

Sangye
12-29-2009, 10:24 AM
Why is your wife mad at you? Were you reaching over the chair to pick HER up or something?

(This needs a smiley, but I'm having a hard time seeing their faces with this new program. Is anyone else experiencing that?)

elephant
12-29-2009, 02:15 PM
I don't see the smiley faces. I have to make my own. :(

Jack
12-29-2009, 08:45 PM
My wife gets mad at me because everything that happens to me also indirectly affects her and the rest of the family. I think there is a whole thread's worth of discussion in the effects of Wegener's on the family and I have tried to start one a couple of times, but given up. It is a difficult subject to cover without making them sound uncaring, which they are not. They are just under strain which often goes unrecognised.

elephant
12-29-2009, 10:21 PM
Your right Jack. My husband gets that way because it wasn't planned. It freaks him out when all of sudden I need to get the emergency room and he's like but do you really need to go? High fever for three days, can't walk, severe chest and back pain, severe nausea.. ???? We have two small children and no family around to take care of our kids when their is an emergency. I have some really good neighbors that I have to call and get help. Certain people in my family don't understand the seriousness of this disease and all medicines and doctor appointments and trying to care for a house with husband and children. I had to have my mom and in-laws to come down and watch the family when I had my surgerie ( I had a bunch). That was planned and that didn't freak him out because we had someone to take care of the kids. I know it must be hard on him to have a wife that is sick and two children to worry about. I wish my in-laws would move down here for support, but that isn't going to happen. It is what it is. I know I am blessed. Thanks Jack for bringing up the subject. Got a load off. Oh, there are more loads to come off. :)

jola57
12-30-2009, 05:24 PM
I know this subject is in another thread but I'll reply here. My hubby was devastated when he learned I had Wegs. The more he read the more scared he got. And he is a physician. Over the past 3 years I have gotten better physically and I have never complained about feeling poorly. He spends much of his free time in the mountains or cayaking, which i don't do so my illness in never in his face. I used to keep the house spotless and while it still is very clean, there are cobwebs everywhere, and dust bunnies once in a while. He never complains even though he is picky that way, just gets out the vacuum and duster. What bothers me is his thoughtless sayings like "what will I do if you die" or " I don't know how to keep the office runnig if you something happens to you" doesn't that sound selfish? My two sons are on their own, 24 and 22 both are understanding and supportive in a normal healthy way but do not go out of their way to help more than necessary. My mom just worries constantly and tells me relax and not work quite so much. Over all we all adapted very well around the house. It is only when we are away and my walking limitations get in the way of exploring new areas that I mourn for the days when I could keep up or even set the pace, and they mourn the absence of my companionship and realize that this Wegs I've got is for real.

elephant
12-30-2009, 11:02 PM
Jolanta, my kids are 4 and 8 yrears old. I am teaching them to be more independent ( even though the 8 yr old doesn't like it) so that if I get really sick he ( 8 yr old) can fix his breakfast. Which is cereal or frozen waffles and he is doing really good. I try everyday to get him to do some kind of house work even though he complains. I tell him that he has to be responsible and that I have a disease and if I am sick you need to help out. I asked him recently how does it feel to have a mom with WG disease? He said you act and look like a normal mom. I am glad to hear that. In the future ( children grow up) I will not be afraid to ask them for help. I keep telling them we are a family and if one of us needs help we need to be there for each other. No excuses. I'm not perfect, but I try to do the best I can and that's all I can do.

jola57
12-31-2009, 05:53 PM
I suffered from debilitating migranes with aura and paresthesis of finger tips and face. On those days that I couldn't function my then small children knew to get cereal and pop tarts. to this day when they come home we go shopping for their favourite cereal and pop tart. Just don't overburden them since you don't want them to face too much responsibility and lose the innocence and carefree days of youth.

elephant
12-31-2009, 11:59 PM
Jolanta, I think about that too ( overburden) so I make sure that I don't do it too much. Right now I have no joint pain or sinus pain so I am good. Like any child they do not like to clean their rooms. So I am in their rooms pointing things out to be place in the bin. One day I walked in my son's room to find it clean. Then I looked under his bed and dresser and found ( underwear, 1000 pieces of legos, stuffed animals). It was too funny. I just helped him and said it's easier just to pick them up and place them in the bins so you can find them when you want to play with them. He is much better now, but still needs my assistance. ;)

Doug
01-01-2010, 06:12 AM
Jolanta, I think about that too ( overburden) so I make sure that I don't do it too much. Right now I have no joint pain or sinus pain so I am good. Like any child they do not like to clean their rooms. So I am in their rooms pointing things out to be place in the bin. One day I walked in my son's room to find it clean. Then I looked under his bed and dresser and found ( underwear, 1000 pieces of legos, stuffed animals). It was too funny. I just helped him and said it's easier just to pick them up and place them in the bins so you can find them when you want to play with them. He is much better now, but still needs my assistance. ;)

As a guy, I truly understand your son's approach to housekeeping! I'm glad you got a laugh out of it, too. (smiley face with smile)

Doug
01-01-2010, 06:23 AM
Aside from parents having a disease than can keep them from doing regular parental chores, it's good to encourage that independence in matters of cleaning, food preparation, and washing clothes (for three good ones) if only so children grow up into adults who have those skills regardless of their sex. That frees you up a little while they are at home, and it doesn't take that much effort to learn how to use the machines and supplies necessary. My mother encouraged all of us kids in that way because she taught Red Cross Safety Aide and regular swimming classes most of the summer for 60 years. We had some odd meals sometimes, but we learned skills that kept us fed, clothed and able to live in reasonably clean homes as we grew older. I thank her for that.

(I confess to the urge to push stuff under the bed to this day, but usually manage to win the good fight to listen to my better self instead of my naughty self.)

elephant
01-01-2010, 08:54 AM
Your mama raised your right. The only thing that should be under your bed is your cats ( cause they want to check it out).:)

jola57
01-01-2010, 04:50 PM
elephant. it brought so many memories. for us it was the bedroom closets, filled to the brim. LOL

Doug
01-02-2010, 01:25 PM
"...but you didn't SAY put the dirty clothes in the wash...!"

elephant
01-02-2010, 01:30 PM
That will be next... poor kid needs a stool to grab the clothes from the washer into the dryer.

onatreetop
01-03-2010, 01:22 AM
to funny!!! i go to clean another house almost everyday and then come home to a bombed house again. We are working on it though. Somedays are better than others. The legos OMG!!! They get stuck in the vaccum too. The dishes get to me the most I think because of the oder. I always do the dishes before I leave the house for work because I know if I dont that the pile with grow out of the sink and on to the counter. My husband had the kids clean up the house while I was at work on my BDAY and my oldest emptied the dishwasher to load it again not reliezing they were dirty. He really couldnt tell. Now I know they have to do more because that was realllllllllllllllllly bad. And gross!!

elephant
01-03-2010, 03:14 AM
I've done that before. I was at my in-laws house and emptied out their dirty dishes out of the dish washer and my mother in law was like what happened to the dishes? I was going to clean them! OHHH, Well I put them away. She turned a pale white, with mouth wide open ( could of inserted a big chocolate cake in her mouth). So we cleaned all of the dishes because the dirty ones touched the clean ones. Oh, did I mention she use to be a scrub nurse.

pberggren1
01-03-2010, 07:19 AM
Whoops! Ha Ha

Terri
01-03-2010, 12:10 PM
[QUOTE=Sangye;8459]

As far as the swelling/ ballooning up goes : When I overdo it (physically and/or emotionally), I get very puffy all over--face, neck, wrists, everything-- for several days. It's a result of the stress that pred is putting on the adrenals.
I didn't know about the adrenals thing. I'll have to read up on that. Thanks Sangye.
I have the same problem and thought pasta was making me swell up.

elephant
01-03-2010, 12:22 PM
Terri how much prednisone are you on?

Sangye
01-03-2010, 12:29 PM
Terri, you won't find that info on medical sites about adrenals. And your MDs will probably look at you like you're crazy if you mention it. It's something I know from holistic medicine.

Depending on how the pred affected your adrenals, even when you stop it the swelling thing might continue. Sure has for me.

Terri
01-04-2010, 12:29 PM
So how will I know if the prednisone has affected my adrenals?

Elephant,I am currently on 7.5 mg daily.
On my highest doses (60) , my face would be the FULL moon look and then somewhere under 15, it starts to be more of a HALF moon. The lowest I have ever been since being diagnosed is 5 mg and within 6 months I had a flare so for now my Doc doesn't want me to go below the 7.5.

Sangye
01-04-2010, 02:13 PM
So how will I know if the prednisone has affected my adrenals?

It's a given that pred affects the adrenals. Pred is a corticosteroid, which is a class of steroid hormones naturally made by the adrenal glands. We take pred in much higher doses than the body would ever naturally be exposed to.

Hormones work by negative feedback loops. When you take pred, it's such a huge amount that it tells the adrenal glands to shut down production. Not entirely, but very close to a complete shutdown. When you've been on doses higher than about 3-5 mg for awhile, your adrenals become dependent on the pred you take. If you stopped taking it abruptly or greatly lowered the dose, your adrenals could go into Acute Adrenal Crisis, which is fatal in 24 hrs if not treated. This is why it's so dangerous to mess with pred.

The adrenals make about 40 hormones and also help regulate blood pressure. Shutting them down by taking pred wreaks havoc on the body. Those 40 hormones communicate with other endocrine glands, and all those negative feedback loops can cause disturbances in every hormone in the body.

All this is extremely debilitating to the body. In Chinese Medicine, the "kidney chi" of someone on pred would appear very depleted. Even when the pred is stopped, some people might never recover-- the battery gets drained and there's no way to recharge it. Others might never have the resilience or general fortitude they had before the pred. There is enormous variability in the response to it, because it depends on a gazillion factors-- the state of one's adrenals before pred, genetics, constitution, medical history, other diseases, medications (current and past) environmental stressors, toxins, etc...

I suggest you see an acupuncturist for an evaluation. They will assess the status of your adrenals and help you restore them as much as possible.

This is a major problem for me. My adrenals were so depleted by the time I was diagnosed. Then I had to start massive IV pred and oral ctx. I got tons of blood clots the first week of treatment. I saw an acupuncturist the 2nd week of treatment and he said I had "no foundational chi left." We're each born with a certain amount of chi. There's no way to make more. Even without him saying it, I already knew it. This is why I'm in such bad shape. I can list the symptoms, but it's more a state of utter weakness than anything else.

pberggren1
01-04-2010, 06:06 PM
Now I can fully appreciate the real dangers of Pred and going off too quickly. Thanks Sangye and everyone else on here. I think that the last time I went off the Pred in September that I may have gone off way to quick. I am always afraid to be on Pred and Cytoxan for long periods though and start to get anxiety feelings when on the Pred for over a year.

onatreetop
01-04-2010, 11:38 PM
Thank you for the warning again. i am anxious to lower the pred and scared at the sametime. I dont care for the way it makes me feel or act but I know it is neccessary to stop or slow the progress. So I take it and try my best not bounce around like the ball that is me. Like all of us I am sure I just get tried of it. I have noted that more sleep is better than less but not always possible so I take what I can get and try again.

firecracker
02-16-2010, 10:52 AM
Im glad to see this thread is talking about prednisone since that is basically what i need to talk about right now and I was told how to make my own thread but i cant find the directions or figure it out for some odd reason. i can usually figure out anything esp stuff like this. ill blame it on two things. prednisone and my job lol. i blame everything on my employer. They prob made me get wg in the first place lol. ok ill stop now for a moment. I havent written on here in awhile. been working and working. i got my fmla finally so i can leave when i need to and they cant do a dang thing about it except make my check suck royally.....which they have been. I have been on the imuran since mid december. i started on 25mg a day which made me super tired so i take it at night. went a week, got blood work, no bad effects from it at that point so i was up'd to 50mg. boy, let me tell you. i would take it with food. hour later, i am puking like a firehose... and i mean violently and violently for like 45 mins to hour then it would stop for about ten mins.. then start again, then finally when i cant get off the bathroom floor because my stomach is completely cramped up and my back is pulled, it would be done. i tried phenergen... does not help at all. i went thru about two or so weeks of that before i saw the doc and he said.. split it half in the am and half at night. i cant do that because i have to work and i cant fall asleep .. when i have to talk on the phone all day. the techs and customers reaaaaaaally wouldnt appreciate that i dont think. so i debated on stopping it but.. i cant. i found that if i take a quarter of it with honey then wait about two hours and take the 3/4 with honey and a flexiril... that i pass out from the muscle relaxer and from the imuran before i throw up. even if i stay awake now, i dont throw up. im down from 30 prednisone to 15 now. i have been feeling so much better.. as far as my face pain is concerned. inflammation really dropped a ton BUT I weighed 140 and i normally.. when healthy weigh 100 and have been 88 to 115 at some points in my life. im only 5 feet tall and the weight.. is unbearable to me. it is making me so depressed that i really am having a horrible time dealing with it. add the "crazies" from the prednisone... im in bad shape. im bloated with the camel hump, beachball face, and "look like i had a set of twins yesterday" abdomen. i have gone from size one to a nine. i cant stand it. im taking an herbal water pill.. not really working. the drop in prednisone has been since about end of dec or first of january. ive only lost about 10 to 15lbs and im still huge and bloated. i have bad eating habits which i have spent the last couple hours researching ways to get rid of the water retention and lowering my carbs and salt intake. i LOVE junk foods. salty, sugary stuff. im insane when i try to not eat them to the point that i will bite someones head off. do any of you know of anything that will help me get rid of this water quicker before i drill drain holes in my feet and start rolling myself with a rolling pin? lol. ok im really not laughing at all but i have to crack these cheeseball comments so you all know that im not going to off myself from this depression im feeling. i really will never do that to my parents, friends, boyfriend and my kitties. i just truly need some help from any of you all that have found a way to get rid of this water. i refuse to be fat like this. and i think its time for me to buy those t shirts.. the body by prednisone because i def tell everyone that glances at me that im on meds that make me look like this. to me, its like a bad bad nightmare or payback (if i actually made fun of overweight people which i never have). everyone is understanding.. even the guy at work that after i mentioned the prednisone doing this said "i was wondering if you were packing it on for winter" and everyones jaws dropped. i actually laughed because i knew he didnt mean it... mean. what am i? a bear? lol

Sangye
02-16-2010, 11:40 AM
With the exception of a few pounds, pred weight is regular weight--fat-- not water. You can take diuretics all day long and all you will do is seriously deplete yourself and maybe even wind up hospitalized. The weight has to come off the same as any other extra weight-- via diet and exercise. But for most people it's much more difficult to lose it even once you're off the pred. Pred changes your metabolism via interference with the endocrine system. It's not easily reversible.

Some people in this group lost the pred weight easily, but that's not typical.

elephant
02-16-2010, 12:31 PM
Firecracker hang in there, so glad you are feeling better. The only advice about losing weight is exercise, do something you really enjoy ( walking, running, hiking, swimming...ect). Eat foods that will fill you up like apples, oranges, sweet potato's, celery, carrots... you got the picture. Whole wheat bread or whole grain, oatmeal ...lean meats. Once in a while you do need to eat something junkie. It's ok to have junk food once in a while. Sounds like you have great support system. Your doing good...just be patient with the weight loss. :)

pberggren1
02-16-2010, 08:46 PM
Hey Firecracker:

Sangye is right about losing weight from the Pred or just in general. I think women have a much harder time than men with the Pred with moods and weight gain. I was one of those non typical people who lost most of the Pred weight fairly easily. But I do have a gut to show for it. My weight before I got sick with WG in 2003 was about 155 and went up to about 180 in about 3 months after starting pred. I am now around 160, so not too bad. Though before WG I was quite active with lots of energy and now is the opposite - so I think you get the picture. No exercise means the weight just stays on. I used to eat a fair amount of junk foods a few years before WG came along and still do occasionally such as some potato chips or a few chocolates or stuff like that. I know it is very hard to change one's diet but it can be done with slow gradual steps. Hang in there. And by the way you look great in your picture or avatar!

Terri
02-17-2010, 11:21 AM
Hey Firecracker:

. Hang in there. And by the way you look great in your picture or avatar!

You do look great. Concentrate more on how you feel rather than how you look.
After two years, I am still going through what you describe. I knew I had gained weight but didn't see the full picture until I saw a "picture" of me. OMG! I was in tears for weeks. I just decided then that as long as I was feeling ok I wouldn't worry about it. It's not easy.
Sorry to hear you are having such a time with Imuran. When I was switched from Cytoxin to Imuran, I was started on 150 mg and I think at the time I was around 30mg Pred but I didn't have any problems. It wasn't until I was switched to Metotrexate that I experienced more problems.
For the past month I have been doing Nintendo Wii Fit. I still haven't lost enough weight to brag about but I find I am getting stronger and my balance is better.
I'm certain you will find a way to cope. You sound like a strong person. I wish you the best.