Re: Gayle from Genny

[Guest guest]

Hi Gayle: Jodi takes 8 mg of Prograf. I'm not sure how much Medrol and

Bactrim. We are praying they will lower the Prograf and take her off the

Medrol when we see the doctor Dec. 11.

Genny/Jodi's Mom

Living Donor Transplant 5-18-01

University of Miami

[Guest guest]

Genny,

Wow Jodi doesn't take many drugs at all. I am so glad she is doing so well so soon. I take 8 mg per day they had to up my prograf just recently.

gayle/trans 6-99

galye@... q~q

^

[Guest guest]

Hi Gayle: Sorry it takes me so long to reply. What other meds do you take

other than Prograf?

We see the Miami doctor in Orlando in the morning. Thank God we don't have

to go all the way to Miami, which is four hours away.

Merry Christmas and God bless.

Genny/Jodi's Mom

Living Donor Transplant 5-18-01

[Guest guest]

Hi Genny,

I take a truckload of pills. I take Prograf, Adalat, Lasix, Pravachol, KDur, pain meds right now I am taking Nortryptaline and Percosetts and Vicodin for some major chronic pain, I take Serevent, Flonaise, Flowvent and the nebulizer, with a rescue inhaler I have to keep with me, Trazodone, Actigall as needed, Reglan. I have a lot of extra medical prolems. Also B12 shots per month and soon I have to have a hysteroscopy, and will take the Lupron shot for 2 months then surgery. I am kind of afraid to take those shots cause I don't do well with hormones. Also take Thyroid medicine. I am a science project.

gayle/trans 6-99

galye@... q~q

^

[Guest guest]

Genny,

My prayers are with you on your visit to Orlando tomorrow...let me know how it goes.

God bless,

Love,

[Guest guest]

Gayle. Before my hysterectomy I had the Lupron shots. It was the best I had felt in a long time. No cramps, no pressure, no problems. Had my hysterectomy May of 2000. I'm on the patch and don't have any problems with that so far. Good luck and let me know how you make out. Ann Re: [ ] Gayle from Genny Hi Genny,I take a truckload of pills. I take Prograf, Adalat, Lasix, Pravachol, KDur, pain meds right now I am taking Nortryptaline and Percosetts and Vicodin for some major chronic pain, I take Serevent, Flonaise, Flowvent and the nebulizer, with a rescue inhaler I have to keep with me, Trazodone, Actigall as needed, Reglan. I have a lot of extra medical prolems. Also B12 shots per month and soon I have to have a hysteroscopy, and will take the Lupron shot for 2 months then surgery. I am kind of afraid to take those shots cause I don't do well with hormones. Also take Thyroid medicine. I am a science project.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Gayle, You have me beat with # of meds --hands down... Lousy club to belong to. I am heartened by the absence of prednisone on your list. Have you been off it a while now?

Patty

-----Original Message-----From: galye@... [mailto:galye@...]Sent: Tuesday, December 11, 2001 12:08 AM Subject: Re: [ ] Gayle from GennyHi Genny,I take a truckload of pills. I take Prograf, Adalat, Lasix, Pravachol, KDur, pain meds right now I am taking Nortryptaline and Percosetts and Vicodin for some major chronic pain, I take Serevent, Flonaise, Flowvent and the nebulizer, with a rescue inhaler I have to keep with me, Trazodone, Actigall as needed, Reglan. I have a lot of extra medical prolems. Also B12 shots per month and soon I have to have a hysteroscopy, and will take the Lupron shot for 2 months then surgery. I am kind of afraid to take those shots cause I don't do well with hormones. Also take Thyroid medicine. I am a science project.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Patty,

I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.

gayle/trans 6-99

galye@... q~q

^

[Guest guest]

Do you know what my Mom's retirement place does? They give each resident a "percription" bottle that is large and empty. The residents are instructed to fill out all of their meds, their doctors names, etc. The reason for this, is that if they become ill and fall, etc. the ambulance pulls the "bottle" out of the refridgerator and takes the info to the hospital! I thought that was an awesome idea! Good idea for all of us with these horrible autoimmune diseases. Even at the best of times, we forget what we are taking,e tc what diseases we have and everything. But in a panic, even our family members could forget pertinent information. I just have not done this for me, but I am planning to do so at Christmas. Another thing that can be done is to have MedicAlert. But you have to pay a fee every years...the other is free!

debby

Re: [ ] Gayle from Genny

Patty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

In a message dated 12/13/01 7:07:51 AM Pacific Standard Time, scott_p@... writes:

I am really sorry to hear about you having degenerative bone disease. Let me stress prevention to ALL these new folks! Take Calcium and Vit D, many of us elders have osteoporosis at young ages from the prednisone.I was told about this on this board and didn't head, I didn't wan't to be burdened with more pills. I now regret it. My bone density study is better this year than last as I am off prednisone but I am still -2sd below normal.

Also, ask about Fosamax if you find you have bone problems. It's available in a once-a-week form. Once person in the group lost, I think, three inches of height in one year. This loss caused severe problems for her entire body. Men can develop osteoporosis, too.

Harper

[Guest guest]

That's a great idea. Thanks for sharing that with us. I know when I went into the ER my family had to bring all my meds with them so they could check on what I was taking. Ann Re: [ ] Gayle from Genny Patty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Gayle, The closest I get to herbs is my occasional green tea and tea tree shampoo. When I first came to understand my disease I really wanted to go the alternative route but soon realized I could't find ANY evidence of what may work when the goal is immunosupression. Everyone seems to have advice especiallt milk thistle when it comes to livers. They obviously don't understand our livers; milk thistle has a secondary effect of enhancement of the immune system and is exactly what we don't need to do!

I like your strategies for your drugs. I don't take as many (I take 15 pills, 7 seperate prescriptions) so I can keep track, I have written them down before but they are always being slightly adjusted so I stopped. In addition to making life easier on the clinic staff, I dread any situation where my husband would need to take me to the hospital and tell them what I was taking! It's really not fair of me to be complacent about this.

I like your Doc's philosophy re:prednisone. The doc's in Miami are the same except when they get someone in chronic rejection which they hate becxause it then doesn't leave then the option of using prednisone for acute flare-ups. The literature is showing that more and more of the transplant centers are getting the message. We (AIHers)are only 4-6% of the transplants performed.

I am really sorry to hear about you having degenerative bone disease. Let me stress prevention to ALL these new folks! Take Calcium and Vit D, many of us elders have osteoporosis at young ages from the prednisone.I was told about this on this board and didn't head, I didn't wan't to be burdened with more pills. I now regret it. My bone density study is better this year than last as I am off prednisone but I am still -2sd below normal.

Hang in there, I may steal your idea about drug organization!

Patty

-----Original Message-----From: galye@... [mailto:galye@...]Sent: Wednesday, December 12, 2001 5:17 PM Subject: Re: [ ] Gayle from GennyPatty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Debby,

I have medica alert and I don't recall a yearly fee... I had to initially buy the necklace and I get a card every year asking for a donation and any med or health updates (whidh I need to do, I just remembered they think I still have my tubes). I may be wrong. I still like the one bottle idea!

Patty

-----Original Message-----From: Tex Pueschel [mailto:tdcc2000@...]Sent: Wednesday, December 12, 2001 10:39 PM Subject: Re: [ ] Gayle from Genny

Do you know what my Mom's retirement place does? They give each resident a "percription" bottle that is large and empty. The residents are instructed to fill out all of their meds, their doctors names, etc. The reason for this, is that if they become ill and fall, etc. the ambulance pulls the "bottle" out of the refridgerator and takes the info to the hospital! I thought that was an awesome idea! Good idea for all of us with these horrible autoimmune diseases. Even at the best of times, we forget what we are taking,e tc what diseases we have and everything. But in a panic, even our family members could forget pertinent information. I just have not done this for me, but I am planning to do so at Christmas. Another thing that can be done is to have MedicAlert. But you have to pay a fee every years...the other is free!

debby

Re: [ ] Gayle from Genny

Patty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

In a message dated 12/13/01 6:40:24 PM Pacific Standard Time, scott_p@... writes:

I agree however I am still menopausal so the orthopaedic dr wants to see if I will start rebuilding bone now that I am off prednisone.

Patty

You mean, the doctor wants to wait and see if you start rebuilding bone rather than starting Fosamax? I've been under the impression that, until Fosamax, it was impossible to rebuild bone. I could be wrong. I don't think that even Fosamax does a lot toward rebuilding.

Harper

[Guest guest]

I agree however I am still menopausal so the orthopaedic dr wants to see if I will start rebuilding bone now that I am off prednisone.

Patty

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Thursday, December 13, 2001 11:17 AM Subject: Re: [ ] Gayle from GennyIn a message dated 12/13/01 7:07:51 AM Pacific Standard Time, scott_p@... writes:

I am really sorry to hear about you having degenerative bone disease. Let me stress prevention to ALL these new folks! Take Calcium and Vit D, many of us elders have osteoporosis at young ages from the prednisone.I was told about this on this board and didn't head, I didn't wan't to be burdened with more pills. I now regret it. My bone density study is better this year than last as I am off prednisone but I am still -2sd below normal. Also, ask about Fosamax if you find you have bone problems. It's available in a once-a-week form. Once person in the group lost, I think, three inches of height in one year. This loss caused severe problems for her entire body. Men can develop osteoporosis, too. Harper

[Guest guest]

We live in a retirement community and we were given a 3x5 card for each of us to list all pertinent info and a ziplock bag to keep it in, then store in refrig. I use a magnet to hold it in a visible place. They ask for name, address, phone #, our children and Dr's, meds and ailments. Just another idea for you all to choose from.

I have AIH dx 3/97,hypothyroid dx 1950/ glacouma dx'99. At the present time I am healing a torn hamstring.

Leona

Re: [ ] Gayle from Genny

Patty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Sorry, I miswrote. I mean pre-menopausal and yes he is waiting to see. Harper welcome back. I missed you

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Thursday, December 13, 2001 10:29 PM Subject: Re: [ ] Gayle from GennyIn a message dated 12/13/01 6:40:24 PM Pacific Standard Time, scott_p@... writes:

I agree however I am still menopausal so the orthopaedic dr wants to see if I will start rebuilding bone now that I am off prednisone. Patty You mean, the doctor wants to wait and see if you start rebuilding bone rather than starting Fosamax? I've been under the impression that, until Fosamax, it was impossible to rebuild bone. I could be wrong. I don't think that even Fosamax does a lot toward rebuilding. Harper

[Guest guest]

In a message dated 12/13/01 8:35:44 PM Pacific Standard Time, scott_p@... writes:

Sorry, I miswrote. I mean pre-menopausal and yes he is waiting to see. Harper welcome back. I missed you

Please stay on top of this -- find out what the advantages are of waiting vs. the disadvantages, what your schedule for bone scans should be, etc. You can't get a skeleton transplant!

Thank you. You are very kind. I'm trying to pull back a little from the computer and do more walking instead. (I buy only a few groceries at a time so I will, at least, be spurred to walk to the market.)

Harper

[Guest guest]

It is an excellent idea to keep a record of all meds where you or

someone else can get it and provide. Not relying on our own memories.

I tried to rely on my brain the other day (bad idea) and remembered

all my meds and dosages with one exception.... now wonder if that is

why I had a problem with what the doc gave me.....I will learn!

nne

> We live in a retirement community and we were given a 3x5 card for

each of us to list all pertinent info and a ziplock bag to keep it in,

then store in refrig. I use a magnet to hold it in a visible place.

They ask for name, address, phone #, our children and Dr's, meds and

ailments. Just another idea for you all to choose from.

> I have AIH dx 3/97,hypothyroid dx 1950/ glacouma dx'99. At the

present time I am healing a torn hamstring.

> Leona

> Re: [ ] Gayle from Genny

>

>

> Patty,

> I was taken off Predisone 2 months after transplant. Colorado

the transplant docs pride themselves on being one of the first state

to be Pred free. Besides the only time I want to take Pred is when I

go into rejection and for my asthma's attacks. I just found out

yesterday that I have full body degenerative bone disease. Made my

day. The docs had to up my pain medication to oxycodone pure. Someone

also asked how I keep my drugs straight. I bought a cometic bags that

rolls up and zips closed I put my whole medicine cabinet in this bag

then I set myself on a ten & ten schedule I never take my pills out of

the bottle just too hard to know what pill is what this way I know.

Then I made a business card listing all of my drugs, problems, doctors

names and number, and allergy list. Got tired of trying to remember

when I went to clinic. The docs love my idea so much they wanted me to

do with other patients. I rarely get messed up and I have a small 2

day plastic med tote that locks and I put 2 days worth of morning

drugs and evening in my purse just in case I don't make it home during

drug dispensing time. I freak when I don't take my drugs and can't get

to them. I also do not take one OTC drug, and when I hear people

taking herbs and potions are down right crazy. I have tried to take

them and got very ill. Please take heed your doctors just hate to say

if you want to take herbs ok. One doc told me that it doesn't matter

if herbs are taken before transplant but after they are very strict.

>

> gayle/trans 6-99

> galye@a... q~q

>

>

>

>

>

>

>

>

>

>

> ^

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Patty,

The bone disease is really making me think. The doc told me yesterday that when the time comes they will replace my knees and my hip. The other sadness that goes with this type of bone disease is the docs can't do anything about it there isn't even a drug to help or reverse it. My lags hurt all the time and I have had to resort more and more to pain pills. I am taking oxycodone pure so far this drug is helping. I still have to get up slowly because my back and my joints scream at me, then I have to stand there a few to get my footing and legs moving once I am up the pain lessens a little bit. If only I knew way back when maybe this would never happened oh well.

gayle/trans 6-99

galye@... q~q

^

[Guest guest]

I'm sorry about your bone problems, Gayle. Best wishes.

Harper

[Guest guest]

Be careful with the Fosomax if you have variceal bleeding. They stopped mine

after this bleed and said I would never be able to go back on it. They are

talking about soome type of infusion RX for me. Check with you MD.

[Guest guest]

In a message dated 12/14/01 4:28:10 PM Pacific Standard Time, MKANTZLE@... writes:

Be careful with the Fosomax if you have variceal bleeding. They stopped mine after this bleed and said I would never be able to go back on it. They are talking about soome type of infusion RX for me. Check with you MD.

Yes, I should have mentioned that Fosamax can cause problems with the esophagus, and some people can't tolerate it. A nasal spray is available (don't remember the name) that is less effective than Fosamax but better than nothing.

Harper

[Guest guest]

I need more like a legal size pad of paper to put down all of the info for me!!!!

debby

Re: [ ] Gayle from Genny

Patty,I was taken off Predisone 2 months after transplant. Colorado the transplant docs pride themselves on being one of the first state to be Pred free. Besides the only time I want to take Pred is when I go into rejection and for my asthma's attacks. I just found out yesterday that I have full body degenerative bone disease. Made my day. The docs had to up my pain medication to oxycodone pure. Someone also asked how I keep my drugs straight. I bought a cometic bags that rolls up and zips closed I put my whole medicine cabinet in this bag then I set myself on a ten & ten schedule I never take my pills out of the bottle just too hard to know what pill is what this way I know. Then I made a business card listing all of my drugs, problems, doctors names and number, and allergy list. Got tired of trying to remember when I went to clinic. The docs love my idea so much they wanted me to do with other patients. I rarely get messed up and I have a small 2 day plastic med tote that locks and I put 2 days worth of morning drugs and evening in my purse just in case I don't make it home during drug dispensing time. I freak when I don't take my drugs and can't get to them. I also do not take one OTC drug, and when I hear people taking herbs and potions are down right crazy. I have tried to take them and got very ill. Please take heed your doctors just hate to say if you want to take herbs ok. One doc told me that it doesn't matter if herbs are taken before transplant but after they are very strict.gayle/trans 6-99galye@... q~q ^

[Guest guest]

Gayle, makes me feel guilty about not taking my cal/vitD as compulsively as I take my prednisone. I know better, Not that there is any good news about your situation but they are having more & more success w/ artificial limbs

Patty

-----Original Message-----From: galye@... [mailto:galye@...]Sent: Friday, December 14, 2001 4:28 PM Subject: Re: [ ] Gayle from GennyPatty,The bone disease is really making me think. The doc told me yesterday that when the time comes they will replace my knees and my hip. The other sadness that goes with this type of bone disease is the docs can't do anything about it there isn't even a drug to help or reverse it. My lags hurt all the time and I have had to resort more and more to pain pills. I am taking oxycodone pure so far this drug is helping. I still have to get up slowly because my back and my joints scream at me, then I have to stand there a few to get my footing and legs moving once I am up the pain lessens a little bit. If only I knew way back when maybe this would never happened oh well.gayle/trans 6-99galye@... q~q ^