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  • ted23151
30 Jan 2010 08:00
Diabetes and ITP was created by ted23151
I got diabetes (tablet controlled) 3 years ago after taking a 5 day course of steroids, so now my haemo wont give me steroids. I am surviving on 6 bottles of ivig every month.

Are there any other diabetics, and what medication do you take.

Ted
  • teach
29 Jan 2010 23:17
NPlate was created by teach
I would like to hear from anyone who has taken or is taking NPlate. I had my first dose of it Monday. Any information welcomed.
  • baiza85
29 Jan 2010 22:25
Replied by baiza85 on topic Newly Diagnosed
What is the Coombs test? I don't think that my doctor test me but I'm not sure. Have any of your doctors ever done bone marrow asperations? I haven't had one but I heard that sometimes they do them.
  • Sandi
29 Jan 2010 21:24
Replied by Sandi on topic Newly Diagnosed
Have you ever been tested for Coombs antibodies? The answer to that could make a difference in the treatment decision.
  • Angel85
29 Jan 2010 21:20
Replied by Angel85 on topic Total Knee Replacement
Hope your surgery goes well. I had a full knee reconstruction when I was about 11 years old because my knees dislocate all the time and they are not in the position they should be in and I have been told eventually I will probally need a total knee replacement for both my knees.
  • baiza85
29 Jan 2010 21:14
Replied by baiza85 on topic Newly Diagnosed
I think thats why my doctor lowered it so fast. I would really like to be off the pred but I'm not to happy about the other options.
  • Angel85
29 Jan 2010 21:08
Replied by Angel85 on topic Nothing is Working
I agree, it is not something that is gonna be solved overnight, it is a long drawnout process and somedays you will feel like your finally on top of it and then the next day or next week, it all comes crashing down and u feel like your starting all over again. Hang in there and stay strong xox
  • Angel85
29 Jan 2010 21:03
Replied by Angel85 on topic Newly Diagnosed
I don't know if it would be considered normal, but mine dropped from 76 to 47 in a week while still on the same dose of pred. I am currently on 40mg a day when that happened. I'd advise you to not stay on the pred for too long, particulary with the higher doses, the side effects are just not worth it.
  • Angel85
29 Jan 2010 20:54
Replied by Angel85 on topic My counts are bouncing back up a bit
That's wonderful news Erica, happy to hear that
  • baiza85
29 Jan 2010 20:53
Replied by baiza85 on topic Newly Diagnosed
My doctor has been excellent with the anemia and since my platelets had dropped in the past he told me that he had always felt I had ITP but my count had never been low enough to treat. I ask him if I should just continue on prednisone for now and he has concerns about the side effects but like you said I feel that the other options ae a bit extreme right now. I'm only 24 and with the anemia my immune system seems to be a little weak already and while they say the risks of serious infection isn't likely I would definately like to keep my spleen! Do you know if its normal to drop so much in a week while still on meds?
  • Caroline109
29 Jan 2010 20:45
Replied by Caroline109 on topic Total Knee Replacement
I hope so! I'll be semi-bionic!
And I see my profile does have my signature with information.
  • Sandi
29 Jan 2010 20:21
Replied by Sandi on topic Total Knee Replacement
Sorry to hear that, Caroline. I hope this new surgery does the trick!
  • Sandi
29 Jan 2010 20:16
Replied by Sandi on topic My counts are bouncing back up a bit
Good news, Erica!
  • Sandi
29 Jan 2010 20:09
Replied by Sandi on topic Nothing is Working
Many people have been frustrated, believe me. It can take time to find the right treatment or combination of treatments.

Rituxan can take weeks to work, so hang in there for now. You might get a response from that - there is always that hope.
  • Sandi
29 Jan 2010 20:06
Replied by Sandi on topic Newly Diagnosed
It is happening too fast. Wow - he's in a rush! Most would slow down the Prednisone taper at this point...in fact, maybe bump it up a bit. You responded very well to it, but the quick drop down was too fast.

Splenectomy is usually a treatment saved for a later date, certainly not two weeks after diagnosis. As for Rituxan, that is also a fast jump considering he didn't really give Prednisone much time.

Have you been happy with his care for the anemia? If you hadn't been seeing him prior to ITP, I'd suggest a second opinion. 76 is still a very good count.
  • Caroline109
29 Jan 2010 19:54
Total Knee Replacement was created by Caroline109
I keep forgetting to check the new forums here so here I am now finally remembering to. In case you probably don't remember (lol), I had a partial knee replacement of my right knee in Sept. 08. Last fall, my left knee started bothering me so I had a series of Supartz shots which did nothing and by mid-DEcember, my knee was killing me. It went downhill ver quickly. Tuesday, I had a 1 year check in for the partial knee with my orthopedist and we/he looked at my left knee and after discussion, I am having a total knee replacement in that knee, scheduled for April 21. I'm waiting until then because I'll be visiting my sister who lives in the Azores for a week in March and need to get ready after that for the surgery (and time to recuperate from my air travel---I hate flying and this time, for the first time, I'll be getting medication to get through the 4 hour flight (and one home) without being scared--am flying alone, with my sister meeting me at the airport and then my brother and SIL arriving a couple of hours later on a flight from Lisbon).

On an ITP note, I will probably be doing an autologous blood donation prior to my surgery. I see my hemo in March and see what platelet count he wants for me. LAst time he said 70, while ortho said 50, both managable generally for me. Can't remember if I set up my signature after asking about here which shows recent counts!

So now I'll try to remember to check in here more often.
  • Angel85
29 Jan 2010 18:14
Replied by Angel85 on topic Timothy new meds, admitted as well
Sorry to hear they are back down to 5, I remember feeling very scared and stressed when mine were at 6. I agree that splenectomy should be the absoulte last option, luckly my doctor has said he won't even really think about considering it at this point. I think the Nplate and or mabthera is what my doctor is considering for me at the moment. I see him again on tuesday next week.

I'll Hope and pray the Nplate works for him
  • youngjoan
29 Jan 2010 17:08
Replied by youngjoan on topic Whats going to happen to the old forum
I've added a new section at the top of the forum for questions about the new format. Please post any additional comments and information there. That way the subject can be separate from the ITP discussion.

Thanks.
  • youngjoan
29 Jan 2010 17:06
Replied by youngjoan on topic Can the time be displayed at the top of page?
I've added a new section at the top of the forum for questions about the new format. Please post any additional comments and information there. That way the subject can be separate from the ITP discussion.

Thanks.
  • youngjoan
29 Jan 2010 17:04
Replied by youngjoan on topic Does this new forum have a Chat Room option?
I've added a new section at the top of the board for information about the forum so this topic can be separate from the ITP discussion. Please post any new information there.

Thanks.
  • DebbieC
29 Jan 2010 16:13
Replied by DebbieC on topic Steve a/k/a Gort (moved from old Forum)
This is wonderful news. Hope he continues to get better. Debbie
  • lucidawn
29 Jan 2010 15:42
Timothy new meds, admitted as well was created by lucidawn
Some new developements. First of all his cbc came back at 5k. I thought it would have been lower, but I guess the difference between 5k and 1k is not really any difference. They took his bp and and it left petecheia, which was not a good sign, and he had some on his back and other places, but not much. No bleeding yet. The hemonc talked about meds, and our options. He presented the splenectomy, which I was not keen on, and the immune suppression drugs as well. I was more prone to go with those, though I thought he might not take them regularly, which the hemmonc also agreed about. He kind of seemed to lean toward splenectomy. I told him that I'd spoken with Tim's grandma yesterday at length about her history and splenectomy and that it had almost killed her. He said that with adults they don't usually try to get the counts up first, and I told him they had with her, but that regardless it did not have any effect post splenectomy. After that he did offer that option of Nplate. He hadn't offered it before because it was thought that he was taking the Promacta and it wasn't working, but since we know he was not taking the drug, he is willing to try the Nplate. So, that is what we are going to try now...Nplate. We know he will comply because he comes in the office weekly for the injection, so it is monitored. So, maybe this will work for him for a while.

Next, a bit of an amusing story. Tim's count is low, as usual, and we could likely have just gone home today, but it is going to snow and Tim plans to have a snowball fight. The Hemonc says, "Well, you can throw them but you can't get hit in the head with a snowball. We need to treat you with IVIg if you plan to play in the snow." So he was admitted for two rounds of IVIg, lol. The Hemonc walked out laughing.
  • baiza85
29 Jan 2010 14:12
Newly Diagnosed was created by baiza85
I have always had Iron defeciecy anemia so I have been going to a hem. doctor for quite some time. On January 15, 2010 during a regular blood test it was discovered that my platelet count was 26,000. My doctor put me on 60mg of prednisone a day and a week later my count was 181. I was droped down to 30mg a day and now my platelets are at 76. My doctor has decided that I may need to try Rituxen or to have my spleen removed?? What questions should I be asking? I feel like this is all happening so fast! :dry:
  • tamar
29 Jan 2010 14:03
Replied by tamar on topic My counts are bouncing back up a bit
Good news! Glad to hear it.
  • Stangie11
29 Jan 2010 13:39
Replied by Stangie11 on topic Rhema Appt
Thanks Sandi. When I go off prednisone I feel like that way too. I thought I was going crazy all year because I couldn't think straight, I couldn't remember anything, etc. And then I realized it was autoimmune.
  • eklein
29 Jan 2010 13:04
My counts are bouncing back up a bit was created by eklein
After two Rituxan infusions a year ago April, I've had counts above 200 for not quite two years. Last month I was feeling 'wrong' and sure enough my count was down to 110, I think it had been even lower based on how I felt. I worried I was coming out of remission. But since then I'm feeling better and today my count was 158, so it looks like I'm pulling out of the dip.

Depending on how I feel, I'll probably wait a month to get another count.

Erica
  • eklein
29 Jan 2010 13:04
My counts are bouncing back up a bit was created by eklein
After two Rituxan infusions a year ago April, I've had counts above 200 for not quite two years. Last month I was feeling 'wrong' and sure enough my count was down to 110, I think it had been even lower based on how I felt. I worried I was coming out of remission. But since then I'm feeling better and today my count was 158, so it looks like I'm pulling out of the dip.

Depending on how I feel, I'll probably wait a month to get another count.

Erica
  • Stangie11
29 Jan 2010 13:00
Replied by Stangie11 on topic Rhema Appt
I am sorry about your pain. I don't know if this relates, but my friend with MS and other unknown autoimmune disorders, suffers from that insane itching. She was only receiving mild relief from prednisone and allergy meds. She just visited Mayo and they ran a bunch of allergy tests on her and it appears that she has developed new allergies to lots of things. She has found some comfort in elimating many things from her life.
  • joycefleming
29 Jan 2010 10:22
Replied by joycefleming on topic Nothing is Working
hang in there this is not a fast fix problem . Our bodys take time to recover from all of the meds and stress that we go thru at this time , lots of success stories out there read them , they will help
  • mleuch
29 Jan 2010 10:15
Nothing is Working was created by mleuch
I was diagnosed with ITP after developing petechia all over my legs and having a platelet count of 5. I was admitted to the hospital and initially responded to dexamethasone and IVIG. Three days later my counts went from 39 to 3. I received more IVIG and a splenectomy and I got to 119 on prednisone. Four days later my platelet count went back to 16 even on the high dose prednisone. My doctor insisted on rituxan that same day. I agreed with her decision but I'm feeling overwhelmed that everything is moving so quickly and my platelet count doesn't seem to really be improving. Has anyone else experienced such frustration?
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