Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 About 8 weeks ago she started having problems with her blood. Her red blood cells, white blood cells, hemoglobin, and blood platelets are all very low. They are declining at a rapid pace. Her Hemotalogist has no idea why. He has checked her bone marrow, it shows that it is not working right, but is inconclusive as to why. He is not sure if it's all the meds she is taking. Do you know what meds she is on. It is very possible that she may be developing medication induced leukemia. Sarc can get into the bone marrow, and if she is on some heavy duty immunosuppresants, they can deplete the white cells. This is something that we have to watch for, and most of the docs know at least to have CBC's and LFT's (complete blood counts and liver function tests) on a monthly basis. That way if something starts up, they can discontinue the immunosupressants and get the blood levels back up where they belong. You might want to have her talk to her pharmacist and see if low blood counts are a side effect of the meds she's on. Take care, and thank you for helping your aunt figure out this puzzle. Sincerely, Tracie NS Co-owner/moderator************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 My Aunt was diagnosed with Neurosarcoidosis about 10 years ago. About 8 weeks ago she started having problems with her blood. Her red blood cells, white blood cells, hemoglobin, and blood platelets are all very low. They are declining at a rapid pace. Her Hemotalogist has no idea why. He has checked her bone marrow, it shows that it is not working right, but is inconclusive as to why. He is not sure if it's all the meds she is taking.Or if it is another symptom of her progressing disease. He is not familiar with Neurosarcoidosis. She has had 3 blood transfusions in the last 6 weeks. The doctor is very concerned about all of her numbers, but the low platelet is the biggest worry. Today when she had her blood checked everything had gone down again despite the treatments she has been given. Her platelet count is 9000, normal is 150,000- 400,000, 10,000 or less is considered dangerous. What I would like to know is there anyone who has had a similar problem, and what did they do for treatment. I would really appreciate any information. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 > > In a message dated 3/15/07 9:22:44 PM Pacific Standard Time, > estellakeyes@... writes: > > > > About > > 8 weeks ago she started having problems with her blood. Her red blood > > cells, white blood cells, hemoglobin, and blood platelets are all very > > low. They are declining at a rapid pace. Her Hemotalogist has no idea > > why. He has checked her bone marrow, it shows that it is not working > > right, but is inconclusive as to why. He is not sure if it's all the > > meds she is taking. > > Do you know what meds she is on. It is very possible that she may be > developing medication induced leukemia. Sarc can get into the bone marrow, and if > she is on some heavy duty immunosuppresants, they can deplete the white cells. > This is something that we have to watch for, and most of the docs know at > least to have CBC's and LFT's (complete blood counts and liver function tests) on > a monthly basis. That way if something starts up, they can discontinue the > immunosupressants and get the blood levels back up where they belong. > You might want to have her talk to her pharmacist and see if low blood counts > are a side effect of the meds she's on. > > Take care, and thank you for helping your aunt figure out this puzzle. > Sincerely, > Tracie > NS Co-owner/moderator > > > ************************************** Tracie, Thank you for the information. Her Hemotalogist has diagnosed her with Myelosdyplastic.She is on so many different meds, Neurontin, Methadone, Prevacid, Valtrex,Zanaflex, just to name a few. They have taken her off of Cytoxen and Prednisone. Two weeks ago she had five treatments of a new chemo, Dacogen. But her levels continued to decline, she has had 6 units of blood and 2 bags of platelets in three weeks. She went in the hospital yesterday, more blood, the good news is her platelets are back up to 23,000 and her hemoglobin is 11. Bad news her white cells are 0.002 and she has an infection, they have her on antibiotics. So we are hoping the white cells started going up also and the infection gets cleared up. Doc is hopeful that the chemo is working, I hope do she has to go for five more treatments next week. We are just going day by day, it's all we can do! Thanks again for listening to me. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2007 Report Share Posted March 29, 2007 Estella, I'd get an opinion from a second hematologist. For cryin' out loud, this is his specialty & the guy has no clue? Like Tracie, I think it's wonderful that you are standing up for you aunt & advocating for her. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: low blood plateletsDate: Wed, 28 Mar 2007 04:20:16 -0000 >> > > > > About> > 8 weeks ago she started having problems with her blood. Her red blood> > cells, white blood cells, hemoglobin, and blood platelets are all very> > low. They are declining at a rapid pace. Her Hemotalogist has no idea> > why. He has checked her bone marrow, it shows that it is not working> > right, but is inconclusive as to why. He is not sure if it's all the> > meds she is taking.> > Do you know what meds she is on. It is very possible that she may be > developing medication induced leukemia. Sarc can get into the bonemarrow, and if > she is on some heavy duty immunosuppresants, they can deplete thewhite cells. > This is something that we have to watch for, and most of the docsknow at > least to have CBC's and LFT's (complete blood counts and liverfunction tests) on > a monthly basis. That way if something starts up, they candiscontinue the > immunosupressants and get the blood levels back up where they belong.> You might want to have her talk to her pharmacist and see if lowblood counts > are a side effect of the meds she's on. > > Take care, and thank you for helping your aunt figure out this puzzle.> Sincerely,> Tracie> NS Co-owner/moderator> > > **************************************Tracie,Thank you for the information. Her Hemotalogist has diagnosed her withMyelosdyplastic.She is on so many different meds, Neurontin,Methadone, Prevacid, Valtrex,Zanaflex, just to name a few. They havetaken her off of Cytoxen and Prednisone. Two weeks ago she had fivetreatments of a new chemo, Dacogen. But her levels continued todecline, she has had 6 units of blood and 2 bags of platelets in threeweeks. She went in the hospital yesterday, more blood, the good newsis her platelets are back up to 23,000 and her hemoglobin is 11. Badnews her white cells are 0.002 and she has an infection, they have heron antibiotics. So we are hoping the white cells started going up alsoand the infection gets cleared up. Doc is hopeful that the chemo isworking, I hope do she has to go for five more treatments next week.We are just going day by day, it's all we can do! Thanks again forlistening to me. > Watch free concerts with Pink, Rod , Oasis and more. Visit MSN Presents today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 , It sounds like she has a ways to go, and it also sounds like her hematologist is on top of what she needs. The prednisone and Cytoxan will wipe out the white cells- so she was compromised from them, then to get sick- takes alot out of you. I'll have to read up on her dx-- I've heard of it, but not very familiar with it. Take care-- of yourself also, I know that being the caregiver can be equally as tough as being the patient. Sincerely, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Hello, I just thought i should butt in and mention they i have had problems with my bone marrow and sarcoidosis. I developed a disease called TTP - Thrombotic Thrombocytopenia Purpura. It has in no way been linked to sarcoidosis but i fell very ill with it last year and ended up in ICU for a week. I don't think this is what your aunt has but i do believe it was sparked by sarcodosis. I had a very low RCC, Platlets, Haemoglobin etc. Do you know how low her platlets have been? The other level called LD or LDH usually is increased dramatically with TTP. Steroids can apparently help this problem. Anyway i hope she is ok. > > , > It sounds like she has a ways to go, and it also sounds like her hematologist > is on top of what she needs. > The prednisone and Cytoxan will wipe out the white cells- so she was > compromised from them, then to get sick- takes alot out of you. > I'll have to read up on her dx-- I've heard of it, but not very familiar with > it. > > Take care-- of yourself also, I know that being the caregiver can be equally > as tough as being the patient. > > Sincerely, > Tracie > NS Co-owner/moderator > > > ************************************** > See what's free > at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
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