Side effects with tx meds

coltsfan715

New member
Hey Marjolein,

I was just going to third what the others have said about prednisone. A friend of mine at my center had a heart transplant and was taken to a fairly low dose pretty early on but after about 10 months started having the same issues you are talking about.

He had more problems in his hips and upper legs. He ended up pushing the doc about it and they contributed it to the pred. and he started rehab to help with it. To my knowledge he did rehab for a month or something like that to help him strengthen those muscles and to kind of keep it under supervision or surveillance (however you spell that).

I sometimes get the muscle fatigue too even though my legs are stronger now than they used to be they still get fatigued at times.

Also wanted to add I know Prograf can cause muscle cramps something fierce. I had those almost constantly in the months right after transplant - it was made even worse by my magnesium level - they alleviate that by giving me IV magnesium every time I go for my bronchs.

Take Care
Love Linds
 

coltsfan715

New member
Hey Marjolein,

I was just going to third what the others have said about prednisone. A friend of mine at my center had a heart transplant and was taken to a fairly low dose pretty early on but after about 10 months started having the same issues you are talking about.

He had more problems in his hips and upper legs. He ended up pushing the doc about it and they contributed it to the pred. and he started rehab to help with it. To my knowledge he did rehab for a month or something like that to help him strengthen those muscles and to kind of keep it under supervision or surveillance (however you spell that).

I sometimes get the muscle fatigue too even though my legs are stronger now than they used to be they still get fatigued at times.

Also wanted to add I know Prograf can cause muscle cramps something fierce. I had those almost constantly in the months right after transplant - it was made even worse by my magnesium level - they alleviate that by giving me IV magnesium every time I go for my bronchs.

Take Care
Love Linds
 

coltsfan715

New member
Hey Marjolein,

I was just going to third what the others have said about prednisone. A friend of mine at my center had a heart transplant and was taken to a fairly low dose pretty early on but after about 10 months started having the same issues you are talking about.

He had more problems in his hips and upper legs. He ended up pushing the doc about it and they contributed it to the pred. and he started rehab to help with it. To my knowledge he did rehab for a month or something like that to help him strengthen those muscles and to kind of keep it under supervision or surveillance (however you spell that).

I sometimes get the muscle fatigue too even though my legs are stronger now than they used to be they still get fatigued at times.

Also wanted to add I know Prograf can cause muscle cramps something fierce. I had those almost constantly in the months right after transplant - it was made even worse by my magnesium level - they alleviate that by giving me IV magnesium every time I go for my bronchs.

Take Care
Love Linds
 

coltsfan715

New member
Hey Marjolein,

I was just going to third what the others have said about prednisone. A friend of mine at my center had a heart transplant and was taken to a fairly low dose pretty early on but after about 10 months started having the same issues you are talking about.

He had more problems in his hips and upper legs. He ended up pushing the doc about it and they contributed it to the pred. and he started rehab to help with it. To my knowledge he did rehab for a month or something like that to help him strengthen those muscles and to kind of keep it under supervision or surveillance (however you spell that).

I sometimes get the muscle fatigue too even though my legs are stronger now than they used to be they still get fatigued at times.

Also wanted to add I know Prograf can cause muscle cramps something fierce. I had those almost constantly in the months right after transplant - it was made even worse by my magnesium level - they alleviate that by giving me IV magnesium every time I go for my bronchs.

Take Care
Love Linds
 

coltsfan715

New member
Hey Marjolein,
<br />
<br />I was just going to third what the others have said about prednisone. A friend of mine at my center had a heart transplant and was taken to a fairly low dose pretty early on but after about 10 months started having the same issues you are talking about.
<br />
<br />He had more problems in his hips and upper legs. He ended up pushing the doc about it and they contributed it to the pred. and he started rehab to help with it. To my knowledge he did rehab for a month or something like that to help him strengthen those muscles and to kind of keep it under supervision or surveillance (however you spell that).
<br />
<br />I sometimes get the muscle fatigue too even though my legs are stronger now than they used to be they still get fatigued at times.
<br />
<br />Also wanted to add I know Prograf can cause muscle cramps something fierce. I had those almost constantly in the months right after transplant - it was made even worse by my magnesium level - they alleviate that by giving me IV magnesium every time I go for my bronchs.
<br />
<br />Take Care
<br />Love Linds
 

Marjolein

New member
I just talked to one of the lungtx nurse-practitioners about 30 minutes ago. She is going to talk to the rest of the team and said she would get back to me later today.

She said my Magenesium was lowered in October and that the level was fine early February.

She couldn't think of anything now, or not really anything obvious. But of course she has to talk to the doctors too.

Linds, thanks for your message.
It might be Pred or maybe Prograft. I have still been going to rehab 3 times a week cause my physical recovery is going so slow and relapses a lot. It doesn't seem like my muscles strengthen and now, only get worse. And there is the joint pain that I don't know where it comes from.

Hopefully I'll hear something more later today.

X
 

Marjolein

New member
I just talked to one of the lungtx nurse-practitioners about 30 minutes ago. She is going to talk to the rest of the team and said she would get back to me later today.

She said my Magenesium was lowered in October and that the level was fine early February.

She couldn't think of anything now, or not really anything obvious. But of course she has to talk to the doctors too.

Linds, thanks for your message.
It might be Pred or maybe Prograft. I have still been going to rehab 3 times a week cause my physical recovery is going so slow and relapses a lot. It doesn't seem like my muscles strengthen and now, only get worse. And there is the joint pain that I don't know where it comes from.

Hopefully I'll hear something more later today.

X
 

Marjolein

New member
I just talked to one of the lungtx nurse-practitioners about 30 minutes ago. She is going to talk to the rest of the team and said she would get back to me later today.

She said my Magenesium was lowered in October and that the level was fine early February.

She couldn't think of anything now, or not really anything obvious. But of course she has to talk to the doctors too.

Linds, thanks for your message.
It might be Pred or maybe Prograft. I have still been going to rehab 3 times a week cause my physical recovery is going so slow and relapses a lot. It doesn't seem like my muscles strengthen and now, only get worse. And there is the joint pain that I don't know where it comes from.

Hopefully I'll hear something more later today.

X
 

Marjolein

New member
I just talked to one of the lungtx nurse-practitioners about 30 minutes ago. She is going to talk to the rest of the team and said she would get back to me later today.

She said my Magenesium was lowered in October and that the level was fine early February.

She couldn't think of anything now, or not really anything obvious. But of course she has to talk to the doctors too.

Linds, thanks for your message.
It might be Pred or maybe Prograft. I have still been going to rehab 3 times a week cause my physical recovery is going so slow and relapses a lot. It doesn't seem like my muscles strengthen and now, only get worse. And there is the joint pain that I don't know where it comes from.

Hopefully I'll hear something more later today.

X
 

Marjolein

New member
I just talked to one of the lungtx nurse-practitioners about 30 minutes ago. She is going to talk to the rest of the team and said she would get back to me later today.
<br />
<br />She said my Magenesium was lowered in October and that the level was fine early February.
<br />
<br />She couldn't think of anything now, or not really anything obvious. But of course she has to talk to the doctors too.
<br />
<br />Linds, thanks for your message.
<br />It might be Pred or maybe Prograft. I have still been going to rehab 3 times a week cause my physical recovery is going so slow and relapses a lot. It doesn't seem like my muscles strengthen and now, only get worse. And there is the joint pain that I don't know where it comes from.
<br />
<br />Hopefully I'll hear something more later today.
<br />
<br />X
 

Liza

New member
Hi Marjolein, All these aches and pains just get old after a while don't they? One of Anna's fellow transplantees, she's a liver tx recipient at the young age of 19. Anyway... she took glucosimine chondroitin for the joint pain. We asked Anna's tx team about it, Jessica was using Move Free, and they said NO for that particular one because it had some herb they were unfamiliar with but did say she could take glucosimine chondroitin as long as it didn't have any herbal meds in it. She took it for a short time and it seemed to help then she just kinda stopped taking it. For Anna the joint pain seemed to go away. How is your calcium? Anna is taking 500mg twice a day plus IV every three months. That pred. just seems to deplete the heck out of your bones.

I surely hope they can find something to help get rid of or at least ease the pain and fatigue.
 

Liza

New member
Hi Marjolein, All these aches and pains just get old after a while don't they? One of Anna's fellow transplantees, she's a liver tx recipient at the young age of 19. Anyway... she took glucosimine chondroitin for the joint pain. We asked Anna's tx team about it, Jessica was using Move Free, and they said NO for that particular one because it had some herb they were unfamiliar with but did say she could take glucosimine chondroitin as long as it didn't have any herbal meds in it. She took it for a short time and it seemed to help then she just kinda stopped taking it. For Anna the joint pain seemed to go away. How is your calcium? Anna is taking 500mg twice a day plus IV every three months. That pred. just seems to deplete the heck out of your bones.

I surely hope they can find something to help get rid of or at least ease the pain and fatigue.
 

Liza

New member
Hi Marjolein, All these aches and pains just get old after a while don't they? One of Anna's fellow transplantees, she's a liver tx recipient at the young age of 19. Anyway... she took glucosimine chondroitin for the joint pain. We asked Anna's tx team about it, Jessica was using Move Free, and they said NO for that particular one because it had some herb they were unfamiliar with but did say she could take glucosimine chondroitin as long as it didn't have any herbal meds in it. She took it for a short time and it seemed to help then she just kinda stopped taking it. For Anna the joint pain seemed to go away. How is your calcium? Anna is taking 500mg twice a day plus IV every three months. That pred. just seems to deplete the heck out of your bones.

I surely hope they can find something to help get rid of or at least ease the pain and fatigue.
 

Liza

New member
Hi Marjolein, All these aches and pains just get old after a while don't they? One of Anna's fellow transplantees, she's a liver tx recipient at the young age of 19. Anyway... she took glucosimine chondroitin for the joint pain. We asked Anna's tx team about it, Jessica was using Move Free, and they said NO for that particular one because it had some herb they were unfamiliar with but did say she could take glucosimine chondroitin as long as it didn't have any herbal meds in it. She took it for a short time and it seemed to help then she just kinda stopped taking it. For Anna the joint pain seemed to go away. How is your calcium? Anna is taking 500mg twice a day plus IV every three months. That pred. just seems to deplete the heck out of your bones.

I surely hope they can find something to help get rid of or at least ease the pain and fatigue.
 

Liza

New member
Hi Marjolein, All these aches and pains just get old after a while don't they? One of Anna's fellow transplantees, she's a liver tx recipient at the young age of 19. Anyway... she took glucosimine chondroitin for the joint pain. We asked Anna's tx team about it, Jessica was using Move Free, and they said NO for that particular one because it had some herb they were unfamiliar with but did say she could take glucosimine chondroitin as long as it didn't have any herbal meds in it. She took it for a short time and it seemed to help then she just kinda stopped taking it. For Anna the joint pain seemed to go away. How is your calcium? Anna is taking 500mg twice a day plus IV every three months. That pred. just seems to deplete the heck out of your bones.
<br />
<br />I surely hope they can find something to help get rid of or at least ease the pain and fatigue.
<br />
<br />
 

Marjolein

New member
Well
I had a call back and she talked it over with another np-er.

It could be the Prograft she said.

They came to the conclusion that I have to go to my gp to have her take a look at it. See if she can actually see something wrong with my joints. Now I can understand that they want to know that but she could have asked me because I can tell her that you can see nothing wrong...

But, I'll talk it over with my gp, so she will know what's going on too. She always wants to know everything anyway.

So I called the office and she didn't have a spot for tomorrow so I will see her monday morning.

If she can't find anything out I have to call my tx clinic again or I will have her call them.

So I think it will be a while before I know more... Of course I will keep you updated when I do know more

X

<b>Lisa, thanks for your message. I think my Calcium is ok.. Have never heard it is low. I take 2x500 mg a day too. But no iv's. I know about Glucosamine/Chondromitine and I might ask about that when I see my gp.
X</b>
 

Marjolein

New member
Well
I had a call back and she talked it over with another np-er.

It could be the Prograft she said.

They came to the conclusion that I have to go to my gp to have her take a look at it. See if she can actually see something wrong with my joints. Now I can understand that they want to know that but she could have asked me because I can tell her that you can see nothing wrong...

But, I'll talk it over with my gp, so she will know what's going on too. She always wants to know everything anyway.

So I called the office and she didn't have a spot for tomorrow so I will see her monday morning.

If she can't find anything out I have to call my tx clinic again or I will have her call them.

So I think it will be a while before I know more... Of course I will keep you updated when I do know more

X

<b>Lisa, thanks for your message. I think my Calcium is ok.. Have never heard it is low. I take 2x500 mg a day too. But no iv's. I know about Glucosamine/Chondromitine and I might ask about that when I see my gp.
X</b>
 

Marjolein

New member
Well
I had a call back and she talked it over with another np-er.

It could be the Prograft she said.

They came to the conclusion that I have to go to my gp to have her take a look at it. See if she can actually see something wrong with my joints. Now I can understand that they want to know that but she could have asked me because I can tell her that you can see nothing wrong...

But, I'll talk it over with my gp, so she will know what's going on too. She always wants to know everything anyway.

So I called the office and she didn't have a spot for tomorrow so I will see her monday morning.

If she can't find anything out I have to call my tx clinic again or I will have her call them.

So I think it will be a while before I know more... Of course I will keep you updated when I do know more

X

<b>Lisa, thanks for your message. I think my Calcium is ok.. Have never heard it is low. I take 2x500 mg a day too. But no iv's. I know about Glucosamine/Chondromitine and I might ask about that when I see my gp.
X</b>
 

Marjolein

New member
Well
I had a call back and she talked it over with another np-er.

It could be the Prograft she said.

They came to the conclusion that I have to go to my gp to have her take a look at it. See if she can actually see something wrong with my joints. Now I can understand that they want to know that but she could have asked me because I can tell her that you can see nothing wrong...

But, I'll talk it over with my gp, so she will know what's going on too. She always wants to know everything anyway.

So I called the office and she didn't have a spot for tomorrow so I will see her monday morning.

If she can't find anything out I have to call my tx clinic again or I will have her call them.

So I think it will be a while before I know more... Of course I will keep you updated when I do know more

X

<b>Lisa, thanks for your message. I think my Calcium is ok.. Have never heard it is low. I take 2x500 mg a day too. But no iv's. I know about Glucosamine/Chondromitine and I might ask about that when I see my gp.
X</b>
 

Marjolein

New member
Well
<br />I had a call back and she talked it over with another np-er.
<br />
<br />It could be the Prograft she said.
<br />
<br />They came to the conclusion that I have to go to my gp to have her take a look at it. See if she can actually see something wrong with my joints. Now I can understand that they want to know that but she could have asked me because I can tell her that you can see nothing wrong...
<br />
<br />But, I'll talk it over with my gp, so she will know what's going on too. She always wants to know everything anyway.
<br />
<br />So I called the office and she didn't have a spot for tomorrow so I will see her monday morning.
<br />
<br />If she can't find anything out I have to call my tx clinic again or I will have her call them.
<br />
<br />So I think it will be a while before I know more... Of course I will keep you updated when I do know more
<br />
<br />X
<br />
<br /><b>Lisa, thanks for your message. I think my Calcium is ok.. Have never heard it is low. I take 2x500 mg a day too. But no iv's. I know about Glucosamine/Chondromitine and I might ask about that when I see my gp.
<br />X</b>
 
Top