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Naomi
MemberHi Lydia:
I have had the diarrhea since the beginning. I had hive to start out with and since they have appeared occasionally. I have tinnitis that has gotten worse. Since the exjade the diarrhea has gooten worse and I use immodium to treat it. I some times wonder if some of the side effects are from getting older or from the medicine. Since the revilimid, my wbc,rbc and platelets are lower, but not to the point that the doc is worried. They are stable and seem to be so. As long as my hct is above 36 he is happy. I do try to watch to not get infections because of the lower wbc.
Hope this helps some, but as Carl says everyone is different and reacts differently with the disease and the medications.
NaomiMemberHi Lydia:
I am on revlimid, have been since 11/03. It has kept me transfusion free. I did phlebotomy for 15 months to rid my body of the excess iron. Got it down to 1885. Was put on exjade. Started on 4/5/06. Took about 3 months to get it going, as I am getting it through the VA. It took a lot of phone calls, trips, etc. to finally get it approved, but it is happening. My revlimid is still on an ongoing trial and is furnished through the drug co.
NaomiMemberLindaJo:
I can certainly relate. I get lapses all the time and it comes to me later. I thought it was due to getting older. It was really bothering me. I can talk to someone I know well and call them by another name. Now I can explain that this is part of the medical problem that I have.
I will mention this to my hemo doc and see what he says.
NaomiMemberHi Bill:
When the side effects are listed for a drug, ANYTHING that anyone has experienced when taking it will be listed….even if it is only one person. I had hives at first, but overcame that and now only have the diarrhea, controlled by imodium.
I have other problems that occur, but I doubt they are connected to the revlimid.
I get along very well with the low counts. They are consistent and the doc does not worry about them.
NaomiMemberHi Don:
I started revlimid 11/7/03. Took 10mg for 15 days and had hives. Stopped, counts went down, finally back on 12/16/03. Had last tx on 12/8/03. Went back to 10 mg 1/05 and have been on it since. Took about 4 weeks for me, but had problems at first. Any questions, don’t hestitate to contact.
NaomiMemberJanet:
When I first took revlimid (11/11/03), I took 10mg for 2 weeks, had hives from head to foot, so it was discontinued. Had 4 more txs until my counts got up to the level to start it again on 12/16/03. Then took 5 mg. WBC,RBC and platelets all went down and have stayed down, but HBG and HCT are above the bottom of normal. My last tx was 12/8/03. My platelets stay around 90 – 100. My WBC is 1.3 – 2.0 and RBC is 3.2 – 3.8. Revlimid was raised to 10mg because the 5q- reared it’s ugly head and have stayed there. The 5q- is once again gone.
I was on the trial for 24 cycles (4 weeks each) and am still keeping track for the drug co. The side effects are not unliveable for me. The main one I have is diarrhea and it is controled with immodium as needed.
Hope this all helps. Any questions, just ask.
NaomiMemberI had a friend that had shingles. I mentioned it to my doc and he tested me to see if I still had immunity to chicken pox. Fortunately I was still immune.
I know that mumps can be caught by older people as well as chicken pox. I also had measles at age 21. These are not just childhood diseases, but are “usually” caught by children. I guess God gives the diseases to the children mainly because they can handle them better than adults.
This is just my opinion.
NaomiMemberDear Esme,
I am so sorry to hear of Hans’ passing. You both fought a good fight. Remember the good times and also know that he is no longer having to fight this horrible disease.
NaomiMemberThat was supposed to be using . Sorry
NaomiMemberAndrew:
It isn’t known how long. I started Nov 03 and am still taking it. Doc said as long as it keeps my crit up I can stay on it for the rest of my life.
Maybe they are suing me for long term effects.
NaomiMemberI am also in the waiting stage for exjade. I get my meds thru the VA and Novartis said that they will get it to me via the VA. I am still waiting to see what is happeining and will keep you all posted as to what happens.
NaomiMemberHi Dee:
I had a lot of rushing, ringing in my ears when I took thalidomide. Also have some with revlimid, but not as bad. All those side effects that go with the differnt meds.
NaomiMemberHi Carl:
Hope you do as well as I have on the revlimid. I have been on it since Nov 03 and will continue to take it as long as my red counts stay up. The side effects were very minimal compared to thalidomide for me. After a time they just become a part of normal routine.
Good Luck
NaomiMemberEverytime I would get blood, it would be packed red cells – two units. The amount would vary. It would be around 300 ml per bag. Sometimes it would be less and sometimes more. It depends on how much the blood bank put in the bag. When I would first get them, they would pep me up. When it got down to getting a tx every 10 days, it would not give me the energy as previously.
I would also get a shot of lasix between units to help with the fluid overflow.
NaomiMemberHi Lucy:
I was hypercellular and normal platelets.
Naomi -
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