Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Sandy, How are you doing? It is so good to see a post from you. Hope all is well with you. I sure miss your posts. Tell the girls Hi from Shae. Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Lu/Sandy, I'm curious about the Cytoxan also. I started on Cytoxan in April 2001 and went up to 150 mg per day. Then in late July my white blood count got pretty low so the doctors at Mayo decided to lower the Cytoxan to 100 mg. I have a new Rheumatologist here at home (had to change insurance companies on 1-1-02) and he thinks we should increase it back to 150 or maybe 175 mg. - He says, "Let's throw the book at it." He has only treated one RP patient before, so I asked him to call the Mayo Rheumatologist and talk it over. I've only had one flare since beginning Cytoxan and it was related to irritation from a broncoscopy done in July. I have regular CBCs and urine tests to monitor the white blood count and kidneys because of the toxicity and well as I drink tons of water daily. I also take Fosamax and calcium supplements for my bones. My hair thinned out some but not much. Did make me tired, though. Can you let me know your experiences? Re: Sandy Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Sandy Sorry to hear about your frustration! Darn Dr.'s anyway! Don't you just want to smack them sometimes! Sure we have lots of pains but none of them are normal and there are other reasons besides RP for aches and pains. Take care! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 I am so very sorry about your Mother. I dont know if there is a way to prevent an attack considering how stressful these next few days will be. I hope and pray that in your heart you can feel happy for your mother to finally be at peace. Your mother will always be near you and will stay alive in your memories. We all have fond and not so fond memories of our childhood and no doubt our children will feel the same. We as mothers and as daughters are only humans struggling to make sense out of this little corner of the world we live in. My heart goes out to you Sandy. It has been barely 3 years since my own Mothers passing and I still think of her often, almost daily. I dont know how to prevent an attack. I do know that if you can relax a little; step back from all the family, find solace knowing she is free and embrace your children, you can feel peace as well. With all my love, Quote Link to comment Share on other sites More sharing options...
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