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cthomas555
MemberLydia,
I also did the Desferal at home for several month and then developed an allergy and had to discontinue. Home health care provided a nurse to come to my home 5 evenings a week and hook me up for 12 hours. The subcutaneous infusion was placed in my abdomen. I could take it down in the mornings without assistance. Very uncomfortable experience.
After I discontinued the home infusions I was given Desferal infusions each month after by PRC transfusion. It took an additional hours. Now I am on Exjade with no side effects.
Chris
MemberOps, Gregg. Just wanted you to know I have nothing personal against your name. Sorry about that. Just kind of got riled up.
Chris
MemberOkay Glen. I will delete it. I was going to respond to Patti but I thought I would use her quote from Proverbs and not respond to her accordingly.
“Answer not a fool according to his folly, lest thou also be like unto him.” Proverbs 26:5
Chris
MemberGreg,
My sentiments exactly. Thanks for the message.
Ditto head,
ChrisMemberJohn,
Would Dr. Kou give you the name of a couple of his patients that he has “cured” of MDS who would feel comfortable talking with you?
Chris
MemberEllie, 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
MemberGulp!
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
MemberBy 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
MemberLu 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
MemberHi all,
I’m doing okay just still sore and stiff in some places. I’m also having computer problems so it’s taken a while to get back on the Internet.
Clinically, I can’t say I’ve noticed any changes from the Exjade to date except some orange bm’s. I plan to ask for a copy of the lab results showing the Chemistry Panel and Differential Bld Count next week to see if there are any notable changes in the creatinine or BUN. I would imagine they would also order a Ferritin and other iron studies each month.
My HGB was 7.6 at my last transfusion. That’s too low for me. I go back for another CBC on the 17th of this month.
Lydia, tachycardia means a fast heart rate. The normal adult heart rate, or pulse, ranges from about 50 to 100 beats per minute. A heart rate that stays above 100 beats per minute is called tachycardia.
MemberHi,
Wednesday a.m. had a fainting episode and fell backward into the bath tub while standing in front of the washbowl preparing to brush my teeth. I injured my tail bone necessitating an E.R. visit. Exjade nurse happened to be reviewing my chart for doctor approval of second Exjade order and saw E.R. visit and has ordered blood transfusions given at HGB 9.5 instead of 9.
I had already scheduled my transfusion for Tuesday 4/4 though I’m sure my HGB is below both of those numbers at present. I’m guessing about 7.9. I am going to have to get hold of reality here and accept that for the future I will require blood transfusions at three weeks instead of four.
Also, just started having episodes of tachycardia. My Exjade nurse assured my Hem/Onc nurse that the fainting and tachycardia has nothing to do with the Exjade.
Chris
MemberOps! Marvin, I spoke with a pharmacist at Accredo and she says that what I should have heard was that it takes 1 to 3 months to see results from the Exjade.
Chris
MemberHi Dee,
It is scary trying new stuff. I waited a couple of days after I received it to begin my treatment because I had some anxiety. Also I wanted to take one more weekly dose of the osteoporosis medication which is also required taken at the same time of morning and on an empty stomach. I don’t know how I’m going to work that one out.
I’ve had no side-effects and feel fine. I hope your mouth and sinuses heal real soon.
Chris
MemberHi Marvin,
That 3 month “cure” time is bothering me too because after I quoted their contact person who told me over the phone, I read further into the literature they supplied and it did state that the Exjade would be needed as long as transfusions were required. I will phone their pharmacist today and ask for clarification.
Thank you for writing.
Chris
MemberDee, thanks for your good wishes. It seems the insurance companies decide who lives or dies. But I guess it’s been that way for a long time.
I also wish you luck with the Thalidomide.
Chris
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