Another question for female tx patients

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Anne in Va
Posts: 246
Joined: Fri Apr 23, 2004 11:28 am
Location: Virginia

Post by Anne in Va »

Hi Ali,

LARGE doses of Prednisone tend to give me "five o'clock shadow." Maybe as your dose is lowered the situation will improve. Others who are on steroids will be able to give you more ideas about what may happen.


On my first post on this thread. The one where I mixed up Rik and JMan - I will never be able to live that one down! Anyway, I talked about the hair loss after transplant being only temporary in my case. I have suffered hair loss twice. The first time, the hair on my head grew back with a more wiry texture. The second time, after transplant, it grew back finer. Go Figure! So now I have three types of hair - normal, wiry and fine! Kidney failure and the treatments for it are always an adventure!

Excuse me. I have to go shave my legs!

Anne
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Post by R30 »

Hi Ali

A few things I noticed when I was on steroids (luckily I am now on a steroid-free regime since my tx):

A lovely facial moustache (it was blonde - I am a brunette! - hasn't returned since I was on prednis. 6 years ago)
No hair on my legs for about three years (bear in mind I was only on the meds. for 6 months!)
Hair under my arms disappeared for a year
Hair on my head became VERY greasy
My skin became very greasy
My entire trunk area swelled up - to the point where I couldn't do any tops or fleeces up
Put on two stone in 6 weeks (although my appetite stayed normal - this was fluid retention)
Suffered quite badly with wild mood swings. Actually got the steriod rage that athletes are said to suffer from (that was the worst thing of all)
Had tremor so badly that I couldn't even sign my name on my credit card slips. Was forever being asked to provide further ID
Sleeplessness
General anxiety

Now bear in mind this was only me. I lost the 2 stone in about 4 weeks after I came off them and was very ill for about 2 months as my body stopped producing its own cortisone. Had pain in the extreme (considering I was doing performing arts at college then, this was somewhat of a bummer).
This are the reasons that I have decided to follow a steroid-free regime. I have had several side-effects since my tx, but all have been benign and entirely manageable.

Cheers
Ruth
Doolally
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

Post by Doolally »

Ruth, wow! I could have written that message. Your steroid side-effects are EXACTLY the same as mine!!!

Greasy face & hair, yep, I get such an itchy scalp because of it and have to wash my hair more often now. Mood swings, tell me about it! Thankfully they've calmed down a bit, but I do still suddenly snap because of the smallest thing, like tripping over something. Then that's it, all hell breaks loose!! I can't stand that. I put on weight and swelled up straight away without even eating more - I guess that's the fluid. Tremor, sleeplessness, anxiety, all of it. Its good to hear I have a double out there!!

Saying that, the steroids seem to be slowly working (bringing up my albumin again) so I will put up with it for a bit longer. They brought me to a vague kind of remission when I was on them a couple of years ago. I'm desparate to have a baby so I'll put myself through this hell if it increases my chances!

Ali
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Post by R30 »

Good grief - I though it was just me that had to put up with these side-effects. I know it's tough for you, but it's strangely a comfort to know that I wasn't the only one going through these. The only thing I can say is that they do disappear as your tablets are brought down.

Are you a tx patient, or are you on dialysis awaiting one? If you're a tx, how long ago did you have yours?

Ruth
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi,

I suffered pretty much every side effect going when I was on pred about 5 years ago! I sympathise with anyone who has to take them long term!

I suffered from the worst mood swings feeling ranging from the point of suicide to ecstatic in the space of 1/2 hour.

I put on so much weight as my appetite was raging and no matter how much I ate I still feel starving.

I got really bad cramps in virtually every muscle in my body all the time.

Hairy eyelids was one of my favourite side effect :D


I had no benifit whatsoever from them and I was soo glad when I stopped taking them.

Mike
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

Hmm?? ...
hairy eyelids eh!!?? ...
do you think I would be able to comb them up and back and claim its a low fringe?? ...
it could be the 21century update of the Bobby Charlton/Arthur Scargill look!!!!
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Hairy Eyelids?!

Post by R30 »

Hi Mike

Hairy Eyelids :?: :!: .....Have you ever seen the film "An American Werewolf in London".......

Jeez - and I thought I had suffered with my beard and moustache..... :shock: (just kidding, I am no hirsuit lady!)

Ruth
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Steroids

Post by nycpetit »

I too detested steroids, and nearly ended up on a unit for my transplant that uses them. Fortunately for me, we didn't get along with them (my donor and I) and they refused to operate. :lol:

As a consequence, I googled units in the area, and basically called around and said, "My donor and I are ready, are you?" :)

And I happened upon the best unit ever.

No steroids.

Well, my experience was psychosis. The first doc that prescribed them was nasty. Literally. It was just something to deal with. However, I was on a toxic dose for my size, and was a mess. Completely high strung, hearing and seeing things that were not there. So unbelievably nervous, anxious, and agitated. I actually lost ten pounds on steroids. I didn't want to eat, despite the side of effect of feeling hungry. It just made me angry, the way they made me feel. I became very unhealthy on them. The worst of it was that they did NOTHING to help with my kidney condition. And that was relatively apparent pretty early on. Later I continued because it would lower my protein loss from 16-20 grams a day to about 8. But that was still not essentially protecting my kidneys or giving me more time because anything over three is already excessive.

I had more hair growth everywhere. I had to shave my legs more often, my upper lip was terrible, and for me it was dark hair, and my eyebrows, and on my face. Not something I couldn't control, but noticeable I felt.

I had a lot of muscle cramps and irritability. I mean, heck, I didn't sleep for 18 months. And I was so active that I couldn't sit down. To me it was extremely unhealthy. I lost weight I couldn't afford to lose. Putting me at about 82 pounds and 5'5" was disgusting. I was manic, and completely out of my mind. I cried and laughed in a span of minutes. I had to take anti-depressants to ease the duress over my condition, and get me out of bed, where I stayed for about six months. I couldn't get out of the house very often. Then I had to take Ativan to help with my panic from the medication.

All said and told. I am so glad I found a steroid-free protocol. I will take any side effects from Prograf any day over the ones from steroids. while they may be helpful drugs, they did not help me. I need to at least be sane, you know?

Natalie
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