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Help For My Mom


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#1 Vee

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Posted 02 January 2008 - 07:02 AM

Hi all,

I think most of you know that my mother has sclero with an RA overlap, same as me. Well a few months ago her scleroderma expert put her on Cellcept. My mom is not one to take pills, and she often stops taking her meds against doctors orders. She's stubborn like that. He also put her on prednisone a few months before the cellcept. Well, she started the cellcept and she swears that a couple of weeks later she felt worst than she ever has in her life. She couldn't move. Granted my mom is 70, but she runs circles around me, so for her to not be able to leave the house or do for herself is just not acceptable in her world. She blames it on Cellcept and quit taking it. She did call her scleroderma expert and he said that he highly doubts that cellcept could make her feel like that in that short a time. She started feeling like her "old" self again, but on New's year eve she called me to ask what she can do for the incredible pain that she had in every joint in her body. It was enough that she said if it were not New Years' Eve, she would have went to the hospital. I told her the hospitals were open on new years eve and she could have gone if she needed to. Her response was: "No way, anyone who is anybody would have had the night off and I would have been stuck with a bunch of 'Idon't know what is wrong with you' doctors and nurses". So I talked her into starting the cellcept again and give it a try, and see if it does the same thing to her again. So she started it yesterday.

And my question is: Have any of you that have been on cellcept, had any similar experiences with it making you feel worse than before you started?

Thanks in advance for any input.

Warm and Happy, but frustrated! Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#2 janey

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Posted 02 January 2008 - 08:53 AM

Vee,
So sorry to hear about the pain your mother is experiencing. With all the other symptoms, pain is still the worst symptom in my opinion. Interesting story about her view of the ER on NY's eve. She makes a very good point.

I've been on cellcept since March 07 and have actual felt a lot better than how I felt with other immunosuppressants. I'm doing quite well on it. We'll see in Feb if it's stabilized my lungs or not, but at this point, no new symptoms have developed and everything seems stable. I do admit that this week I have woken up with severe pain running down my right leg. Once I get up and walk around the pain goes away only to return about 3 am. Last night I took a dose of liquid potassium and didn't experience the pain. Maybe your mom should have her potassium levels checked. Just a thought.

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#3 MicheleM

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Posted 02 January 2008 - 12:29 PM

Hey Vee - you are such a good daughter! Your mom is very lucky to have you in her life to try to take such care with her! You know my thoughts are with you both & hope someone on here will have the "magic" bullet for her! Love you lots,
Soft hugs your way,

Michele

#4 Sam

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Posted 02 January 2008 - 01:07 PM

Vee, Janey has a good point about checking her potassuim levels. I didn't think of that before. It doesn thurt to have that check either.
Sam

#5 Sweet

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Posted 02 January 2008 - 01:12 PM

Hi Vee,

I don't have any experience with this or any great advice, but I just wanted to give you a hug and tell you I'm sorry your mom is having a tough go of it right now. It must be very hard to see your mom in pain.
Warm and gentle hugs,

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#6 LisaBulman

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Posted 02 January 2008 - 01:18 PM

Hi Vee,
I am sos orry to hear about your mom. I think it is the "mom syndrome". (I hope I am don't get like this) My mom has terrible pain in her legs. SHe waited forever to finally go to the dr. When she did they ordered tests, all of which have come back negative. I told her to ask for something for the pain and she said she didn't want to. They sent her a note requesting she call to have an emg scheduled (this was over a month ago) and she still hasn't called. The pain is so bad, she can only walk down one isle in the grocery store before she has to sit and rest. The opportunity is there for her to get help, but she won't take it! Hopefully your mom will stick with the cellcept and have great results. Get her to the dr too! Maybe they just need to run some blood tests and it will be a quick fix.

Hugs,
Lisa
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#7 emmie

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Posted 02 January 2008 - 07:36 PM

Hi Vee,

Oh, moms! Like Lisa I hope I can be in charge of myself a little better. But you know what? Our moms probably said that about their moms. I told my daughters to please tell me when I start being "weird". The sad part is that they already are and I'm only 53 which I no longer consider old.

Anyway, I am on cellcept for almost 2 years now. I have done quite well on it. It has been good for the lung aspect for me as well as softening the skin on my hands unless that was coincidence. Unfortunately it hasn't done what we hoped for the encephalopathy.

Reassure you mom that they will do labs about every 8 weeks, CBC and metabolic panel to check liver function. Is she in the process of weaning off of the pred? That might account for an increase in her pain. Even if she isn't, maybe there is something the dr. can give her for pain.

So sorry about all of this. I hope this isn't too hard on you. Be careful not to neglect yourself. Let us know how she is doing.

emmie

#8 Vee

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Posted 03 January 2008 - 05:55 AM

Hi Everyone,

Thank you so much for your input on this. I argued, I mean talked, to my mom this morn :P , and her pain level is better, but she still hasn't called the doctor. But she said she will try to get in tomorrow. She is going to take the cellcept, but she is going to cut the dosage in half, and wean into it. I just hope she sticks with it this time. I'll let ya's know how she does and if it makes her sick like the first time she started taking it. I told her about all of your posts. I think I'll print these out and give them to her.

Thanks again for all your help.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#9 debonair susie

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Posted 11 January 2008 - 08:06 AM

Vee, I have been hit & miss for severalweeks here. I'm making my way back to older messages and was just wondering how your mom... and you!... are doing?

Lisa, has your mom gotten the EMG yet? My hubby's uncle has PAD (peripheral artery disease) and has had a stent put in. Not to say this is what is going on with your mom... only to say that I hope she doesn't put off getting this resolved. As you can see, these things CAN be of a more serious nature!

Hugs All,
Susie
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