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creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/13/2008 9:07 AM (GMT -6)   

I just recently got out of the hospital where I was in a bed for a long time and lost most of my leg muscles. I lost 30lbs and my body changed a lot. I thought it would get better as I got stronger and I'm having a hard time differentiating my body's possible healing pains with possible side effects of medicines I'm on or have been taking.

 

My hair is falling out A LOT (I'm not sure if it's from one of my meds or the fact that I was malnourished for so long)

 

My ankles swell if I stand or walk for too long

 

I have pain that bounces around my chest and boobs (not sure if it's growing pain or actual chest pain)

 

My joints hurt and crack so much more than they ever have (most likely the prednisone)

 

I have little tiny bumps all over my tummy (not sure if it's from my skin being a little loose from all the weight I lost)

 

My skin is always dry no matter how much lotion I use

 

And the one that drives me crazy...my sex drive is down...so so far down. It used to be very high and now its rediculous.  :(

 

 

 

 

Has anyone else experienced these symptoms as a side effect from any of the drugs I'm taking?

 
 
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/13/2008 9:27 AM (GMT -6)   

Good Morning,

I am sorry to hear you have been so ill and now your home and you are having all these sx.  My husband took Prednisone and did experience some hair loss but your cause may be completely different.  Do discuss each of these concerns with your physician and do not be shy about talking with your physician re the decrease in libido. 

I am sure one of the members of the forum will be along that has good input for you.  :-)

Take care and I will pray you are on the slow road to getting stronger every day.

Sincerely
Kitt

 


 

Kitt, Moderator: Anxiety, Panic & Depression 
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/13/2008 9:29 AM (GMT -6)   
I haven't had all of those symptoms, but a few are familiar.

My skin was once pretty dry (and still gets that way certain times of the year). Years ago I started fish oil pills for my cardiac health and that also helped my skin quite a bit, in the summer a little too muc, I'd say. Lots of water helps. I hear grape juice does too. Grape juice might also help with any sagging skin or skin tone in general.

My libido comes and goes. It goes completely away when I don't feel well. It eventually comes back.

Hope you feel better.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/13/2008 9:38 AM (GMT -6)   
I can relate to some of what you are going through.

My sex drive goes way down in and just after a flare. Part is meds and just UC pain the other half is depression from dealing with a chronic illness. It does get better as you get better though. My sex drive is finally back! (i've been off pred for almost a month and imuran for a week)

I've noticed that my skin seems more dry now that I am on remicade. I've taken to mousterizing twice a day. It seems to help.

The pred always made my joint pain worse but is mostly gone now. Tylenol and a heating pad helped with the pain.

I dont know about the chest pain and ankle swelling. I would try to keeep track of these and ask the doc.

Good luck! I hope you start feeling better soon!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/13/2008 9:54 AM (GMT -6)   
I would venture to say that the joint pain is from prednisone. Hair loss might be due to being malnourished. You were REALLY SICK and I think you need to be patient with the healing process. It will take time for you to build back your strength, put on weight, and feel good again. I was never that ill with UC and it took me a month to bounce back from a 9 day hospital stay. Be patient and be good to yourself.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/13/2008 11:29 AM (GMT -6)   
thank you all so much. great advice as always
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


Alycacc
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/13/2008 1:11 PM (GMT -6)   
It sounds like you are experiencing side effects from the Asacol.  I experienced about 41 of them when I was on it and my dr. took me off b/c I'm clearly allergic to 5-ASA drugs.  If you go the the Asacol website and click on the Prescribing information on the upper right-hand corner of the home page you will find the pharmacological information.  Go to the side-effects and you'll see pretty much everything you mentioned there...good luck:)

bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/13/2008 1:18 PM (GMT -6)   
When I was released from the hospital in April, they told me to expect 5-7 days recovery for each day that I was in. I thought they were crazy, but here I am 2 months later, and am finally starting to feel myself again! Many of your symptoms I'm sure are from the different meds, and some are probably just your body reacting to trying to live a normal life again. Obviously chat with your doc if symptoms are getting worse or unbearable, but also give yourself time to heal. Try to rest - I know that in my case I was doing too much too soon! Good luck, and hope you're feeling better soon!

creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/13/2008 2:41 PM (GMT -6)   
thanks, i'm so glad i found this website...it's rediculous how helpful everyone is.
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/13/2008 2:42 PM (GMT -6)   
and by rediculous, i mean rediculously amazing!
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/13/2008 4:01 PM (GMT -6)   
The hair loss could be from the Pred, from malnutrition or from the Asacol. All can cause hair loss. All of the symptoms could be from these. However, the combination of swelling in your lower legs, skin rashes, weight loss, dry skin and hair loss could suggest a protein deficiency. Are you able to eat protein foods such as meat, milk, cheese or beans and peas?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


creamofrice
Regular Member


Date Joined Jun 2008
Total Posts : 32
   Posted 6/14/2008 2:10 PM (GMT -6)   
I eat chicken or tofu twice a day. but no i can't eat cheese, milk or beans
Female-22
Diagnosed with Severe Ulcerative Colitis in Dec 2005 at age 19
2nd flare up-Hospitalized for 41 days (april-may 2008)
prednisone 25mg (tapering)-taking sicne 2005 :(
asacol 400mg-9 pills a day
remicade (just started)
iron, calcium, vitamin c
Attempting Diet-Eat right for your blood type (Type O)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/14/2008 3:04 PM (GMT -6)   
Chicken and tofu are both great sources of protein, so probably not protein deficiency. Take care, and I hope your symptoms improve soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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