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Patti,
Mom’s doctor added diuretics and potassium to her regular BP pills and they have greatly helped lower her blood pressure. I hope you can get some answers.

Dee

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Hi Jules,
I envy your warm weather. I’m glad you are doing good. Unfortunately the Vidaza didn’t help me and I have needed red cells more often since I was on it and my platelets stayed lower. I’m on Thalidomide now (only 1 1/2 months so far) and am starting Exjade, the new iron overload pill. I’m looking forward to some good weeks and less visits to the doctors. I’m ready for some warm weather. Hope you continue to do well.

Dee

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Patti,
I’m so upset to hear about your mom. I know you’ve helped her so much and been so involved with her care. I’ve often wondered the same thing about what happens if the bone marrow quits working. Don mentioned the WBC and I hadn’t thought of that since it’s not usually transfused.
I have had low platelets for over a year, around 3. I’ve gotten red cell transfusions every 2 weeks for several months, before that I got them monthly and before that it was only yearly. I hate this disease.

You know your mom better than anybody and every person’s body is so different. How does she feel about the news? I am praying something will help her. I have a sign over my desk that says “Never Give Up”.
Dee

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I received my Exjade in the mail yesterday but am going to wait awhile before taking it so I can get over this sinus infection and mouth sores first.
My dosage is also 1000 daily.
It’s always scary trying something new.

Dee

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Cheryl,
I will be starting Exjade Monday too. I hope I have luck with no side effects like you.
Dee

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Sandy,
I also have a bad platelet problem. I’ve had platelet transfusions which don’t help anymore. My doctor recently put me on Amacar which helps clot my blood. My platelets never get above 3 but my last blood test showed they were 7 and my doctor said it’s because of the Amacar clotting. One never knows what to do for sure, but with my platelets only being 2 or 3, I always worry about a brain bleed so I guess the Amacar might be the answer for now. The pineapple thing didn’t help me but my mouth is still trying to heal from drinking so much of it.
Dee

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Chris, I’m so glad that you will be able to get your Exjade. That’s terrible what it costs and even more so when insurance won’t cover it.
Good luck.

Dee

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Thanks Caroline, Janet & Cheryl for your replies. Gosh there’s so many people with such complicated problems. Our bodies are all so different and respond differently. None of us have the answers but it sure helps share.
I never thought of the iron overload maybe being part of the problem. The side effect I read about on Thalid. were the ones I’m having.
My mouth is starting to feel better. I’ve been swishing with salt water a lot.
I had more units of red cells yesterday. I still have the buzzing in my head and I’m so plugged up. I don’t know if it’s from the cold I had or it’s my sinuses. Always something.
Dee

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Esme,
I just checked into the forum to see what’s going on and saw your post about the passing of Hans. I immediately got choked up and felt so bad for you. I am so sorry. You have both been through so much. I’m so glad you and the family were there. That was so important. We all know he is not suffering anymore, but the pain of grief is still there. Our life is so fragile. I will keep you and your family in my prayers.
Dee

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Patti, I sent you a private message this morning. Dee

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Hi Patti,
Me again. I keep forgetting things. I just read one of your posts about your mother-in-law and the platelet problem. Has the doctor ever mention trying AMACAR pills. It doesn’t raise your platelets but thickens the blood. My doc goes for the same signs of petchiae or bleeding in the nose. Gosh we feel so helpless.
I got a card from the Elders of our church that said they are praying for me all the time.
I will prob still do some pineapple but don’t think I can handle a whole one a day.
Take care. Dee

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Patti,
I forgot to ask about your mother-in-law. Is she doing okay. How old is she?

Dee

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Hi Esme,
I’m so glad Hans is doing better. These roller coaster rides are pretty hard. I know it’s so hard on you. When you love someone so much and you feel your hands are tied, you just want to scream. Please take of yourself and Hans. Dee

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Patti,

How sweet to be thinking of me. As soon as we got back from our 3 days away which was wonderful, I woke up the next morning with a terrible cold and plugged sinuses. I’m doing some better and will have to force myself to get some things done. Laying around too much makes a person weaker.

My platelets are staying at 2. I think the Amacar pills are helping to make my blood thicker. I had 2 units of red cells last week but no platelets.

I’m really debating on how much of the pineapple I should drink. My mouth is so sore. Seems to be constant (all around my gums too). I have so many other thing to deal with,I hate the mouth problems.

Thanks so much for contacting me. Gee maybe one day we’ll meet, you don’t live far from us.

Oh, the doctor said we prob won’t know if the Thalid. is working for about 2 months and I’ve
only been on it 3 weeks. Have not had too many side effects.

Dee

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You I guys are a God sent. I don’t know what I’d do without the forum.
Dennis, I really appreciated the link. We actually got away for 3 days and went to the beach, but when I got home I found out I missed a doctor’s appt. We had beautiful weather and enjoyed ourselves except for my huge canker sore and fat lip. I had to stop the juicing for a couple of days.
The link really helped me not to be so anxious.
I’veonly been on a small dose of Thalidomide for a couple of weeks so don’t know if it will help.
I’m still getting a lot of TX’s.

Dee

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