Exjade

[cthomas555]

Lu Ann, what’s happening with your dad and the itch?
I have one on my back in an area I can’t reach. The internist says it should go away when the weather warms up. We’ll see. I think it did improve when we had a warm spell but I have the furnace on again because of the temperature drop and rain and it’s itching . I’ve tried the vinegar, also benadryl, cortisone and a moisturizer but nothing gives relief very long.

“Lydia, I asked the nurse at my last transfusion and she also says that the amount of blood in each unit varies. Some bags are fuller than others.

I have been on and off the Exjade because of diarrhea. I appear to be more sensitive to lactose which is in everything including my medication and I had been rather lax about using the lactase enzyme. I was off to make sure it wasn’t the Exjade.

Today, I remembered why I am having the diarrhea. I was on Percocet which causes constipation so the lactose balanced it out. I am no longer on Percocet so for the future, I must remember to use a lactase enzyme to avoid diarrhea. Glad I got that solved.

Because Cleveland Clinic is one of the Centers Of Excellence that is running clinical trials for Exjade, I was sent to a memory specialist last week by the Exjade nurse coordinator. I have complained about forgetfulness for several years to my internist who feels we are all on information overload. The specialist d/o mild memory lost (“but sharp as a tack” … tested 30/30) and confusion when trying to multi-task. “Iron overload is a risk factor for dementia.” He changed two prescriptions that may be the culprit…”drugs that are known to cause confusion for seniors” and recommended MVI, exercise and memory tips.

Has anyone found an MVI that does not contain Vitamin C?

According to what I’ve read on the internet and checking with the nutritionist, the A1C gives a false reading because of blood transfusion. That’s unnerving.

My dentist gave me the heads-up about the Fosamax, Actonel, et al (bisphosphonate) causing jaw death aka “necrosis of the jaw bone.” I did a Google and found loads of information on this. I thought this Forum was most informative.

http://www.topix.net/forum/health/TLHLOEA1LG3SRMPH1

It was discovered last year that I have gums filled with dead bone when I had extractions for dentures last year. It was necessary to visit a maxillofacial and oral surgeon for an additional thousand dollars for more surgery to remove enough dead bone so to close the wounds.

Next week I am to visit a hearing specialist. I have lost most of the hearing in my right ear and need a hearing aid. Cause unknown at this time. I am sure it is not Exjade related, even though that can be one of the adverse side effects. I noticed my hearing in that ear failing long before I started the Exjade. I will also be re-starting physical therapy this time for the Sarcopenia, for strengthening and building muscle. High Protein Boost was prescribed to include in my diabetic regiment for this too. I’m exhausted with all this stuff.

Chris

[cthomas555]

By the way, to all of you wonderful people who added to this thread to offer your support, encouragement, prayers and information, you are very much appreciated and I am grateful to you. I am too slow with the personal notes.

Love,

Chris

[patti]

Chris,

Maybe you can help me with something. Do you think your hearing loss is related to the iron overload then? Can I ask how high your ferritin is? My MIL started complaining of feeling like she’s not been hearing well and I’m wondering if it’s the iron overload (I had never heard of that before). Her ferritin was 2200 as last check.

Thanks

Patti

[Naomi]

Chris:
Watch closley with the diarrhea. Mine has transformed into c-diff. I am on flagyl at present and I am still having a lot of diarrhea. It got real bad after I started the exjade. I will try to go back to phlebotomy as I am not on txs anymore.
Naomi

[cthomas555]

Gulp!

Naomi, thanks for the heads-up on the c-diff. I will keep a daily log on this activity. I forgot the lactase enzyme again the past two day with the same outcome. I taped a wrapped pill to the freezer door so when I reach for the ice-cream, hopefully I will remember to take it. I don’t show the other symptoms but I’m always on antibiotics…though I had a pretty good winter with the COPD…so only recently for dental work.

I like hearing about your remission and that you can do the phlebo for now.

Chris

[gemloyear]

Hi Chris, Glen had a bad time with C-diff also, it started while he was on antibiotics. It took quite a while to bring it under control. We now eat yogurt daily, he has grown to like it. It helps keep things under control, as he takes antibiotics often. There is also a great frozen yogurt, and a frozen soy product, Tofuti which are good replacements for reg. ice cream. Glen seldom needs to take the lactose pills now.Strange as we age how one thing leads to another, what a challenge!!For instance this thread. OOPs, by the way thank you for posting the site re: jawbone death, something I was not aware of previously. Pretty scarey.
Take care, Ellie

[cthomas555]

Ellie, Thanks for your suggestions. Tofuti is on my shopping list and yogurt.

Ellie writes:

“Strange as we age how one thing leads to another, what a challenge!!”

Yep, I read or heard somewhere that “Growing old is not for cowards.” Ouch!

Chris

[Lydia]

Hope everyone is doing better by the time you read this. Man, it’s just one thing after the other. One step forward, two back – but eventually it will all steps forward – right ? Keeping all those prayers and positive thoughts going.

What is A1C and c-diff. Sorry for the ignorance, but I will probably need this info sooner or later and won’t have to remember where to find it.

Mom has the TV cranked full volume and has high iron too. Starting Revlimid and if okay with that, adding Exjade. She also says some weird things and forgets a lot. Beginning to be concerned. Thought was just old-age, or blood not getting up there. Thanks for heads up iron overload may be causing it. Will find out her level next call.

[shirlsgirl]

Hi Lydia,

for hgb A1C info here’s a great link:

http://www.labcorp.com/datasets/labcorp/html/chapter/mono/pr012800.htm

C-diff is short for Clostridium difficile which causes diarhea often on patients that have been taking antibiotics…here’s a great link:

http://www.aboutibs.org/Publications/CDifficile.html

Hoping for some more forward steps to come for your mom.

Take care,

Jody

[shirlsgirl]

oops. I added the wrong link for A1C…sorry about that.

Here’s the one I meant to add:

http://www.ianblumer.com/definitions%20&%20test%20interpretation.htm

[Lydia]

Jody, appreciated info. Have to keep informed on these things for future reference!

[Author]

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