leg cramps

[elephant]

Terri how much prednisone are you on?

[Sangye]

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]

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]

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]

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]

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]

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]

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]

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]

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!