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21 Jan 2010 18:30
  • Kim
  • Kim
It is interesting to see what other doctors do and won't do based on platelet count. I've had a colonoscopy done with counts as low as 20k, even when there was thought that I had GI bleeds due to my ITP.

I had been suffering from anemia, which was thought to be from chronic GI bleeds, a problem due to ITP. My doctor wanted to make sure I had no polyps that could contribute to GI bleeding, we felt the risk of the scope was worth it and the GI doctor would have been able to remove and cauterize a polyp that was causing the problem bleeding.

I was having major problems with anemia, which were requiring iron and blood transfusions. I also was having stomach upset and other GI problems, which I was hoping could be identified and resolved with the scope.
21 Jan 2010 18:35
  • dots
  • dots
No. In the old board, one can write a message that goes at the bottom of each post. Lots of people sign their names and then write their platelet counts, or their names and their kids' names, treatments, dates of dx, or a quote they like.

It's under Basics in the profile section. If you still have an account there, look at your profile and you'll see it at the bottom on the right.
21 Jan 2010 18:47
  • Kim
  • Kim
It's always good to have a doctor you feel comfortable with and one who listens. It sounds like she's thinking and working to help you feel better and away from danger.

I was also told I had "smoldering" lupus when I was diagnosed in 1993. I was diagnosed with ITP in 1983 and lupus symptoms started about 6-8 years later.

Most rheumatologist's would like to see their lupus patients reduce a dose of prednisone as low as possible, preferably zero. It's good the rheumatologist is looking out for you long term consequences of prednisone. Good luck with treatment, and I hope you find something that works for you.
Category: Lupus
21 Jan 2010 18:52
  • CindyL
  • CindyL
I don't know what my count was when I had my colonoscopy. That was a couple of years ago, however.




Have a great day.
21 Jan 2010 18:53
  • CindyL
  • CindyL
I don't know what my count was when I had my colonoscopy. That was a couple of years ago, however.




Have a great day.
21 Jan 2010 18:53
  • CindyL
  • CindyL
I don't know what my count was when I had my colonoscopy. That was a couple of years ago, however.




Have a great day.
21 Jan 2010 18:59
  • CindyL
  • CindyL
I was wondering the same thing!

So, do we come here now to do our posting, or do/can we still post on the other forum?





Have a great day.
21 Jan 2010 19:16
  • youngjoan
  • youngjoan
It looks like there is a signature capability in the new forum, but it hasn't been turned on. I've e-mailed Jeff who is in charge of the new web site and asked him to 'turn on' the signature capability.

I'll let you know what I hear back from him.

I appreciate your mentioning this. It is exactly why we have a transition and not just a switch.
21 Jan 2010 19:18
  • youngjoan
  • youngjoan
You will be able to post to both forums for awhile (week or so). Then the old one will be switched to 'read-only' and you'll only be able to post to the new one. I'll post a message to both of the forums a few days before the actual switch.
21 Jan 2010 19:36
  • tofer
  • tofer
Kim that is always good news to feel like your are being heard. That your doctor has some new ideas and that maybe there would be another way to view what is happening in your life. Good for you Kim I'm glad things went well for you.
Category: Lupus
21 Jan 2010 19:38
  • Caroline109
  • Caroline109
My doctor wanted a count of 50. I had no trouble with that.
21 Jan 2010 19:38
  • tofer
  • tofer
Hi
ohhhhh it's spooky over here.... :evil:
Category: Social Chat
21 Jan 2010 21:27
  • DebbieC
  • DebbieC
Hi
Hopefully it will feel like home someday. I hope that more people come here. Have a good Friday, Debbie
Category: Social Chat
21 Jan 2010 22:08
  • youngjoan
  • youngjoan
Sandi and I have received a lot of questions and suggestions so we are making a list. If you have something you would like to put on the 'to do' list, please let us know.

Joan
21 Jan 2010 22:15
  • youngjoan
  • youngjoan
Some of you have asked about adding signatures to this discussion group. That feature is now available. To create your signature go to 'your profile', click on 'edit/update your profile/forum' and add your signature. You can also change some of the other parameters on how you view the forum.

Joan
Category: Forum Information
22 Jan 2010 07:09
  • CindyL
  • CindyL
That's a good count. I hope they continue to rise.





Have a great day.
22 Jan 2010 07:14
  • CindyL
  • CindyL
Hi
I kinda like this new site. It's a lot more colorful! I think we'll get used to it in time.



Have a great day.
Category: Social Chat
22 Jan 2010 07:14
  • CindyL
  • CindyL
Hi
I kinda like this new site. It's a lot more colorful! I think we'll get used to it in time.



Have a great day.
Category: Social Chat
22 Jan 2010 07:22
  • CindyL
  • CindyL
So, I just edited my profile to add my signature, so I'm testing to see if I did it right! :P
Category: Social Chat
22 Jan 2010 07:23
  • CindyL
  • CindyL
So, I just edited my profile to add my signature, so I'm testing to see if I did it right! :P
Category: Social Chat
22 Jan 2010 08:24
  • mendenmh
  • mendenmh
Please keep us up to date on the switch to imuran, if you do make the change.

I just switched over (a week ago) from taking 6-thioguanine to imuran to control psoriasis and psoriatic arthritis. So far, I have seen no bad side effects. I take 100 mg/day. I am hoping that it will have a side effect of keeping me in ITP remission, too.

Marcus
Category: Lupus
22 Jan 2010 11:24
  • youngjoan
  • youngjoan
Now you can click on the 'List of Web Site Members' on the 'Web Site Member Menu' at the top left of the screen and see the public portion of the Web site member profile for all those who have registered on the Web site.

To see the same list, you can also click on the 'total user' number or 'user list' at the bottom of the page when you are viewing the forums.
Category: Forum Information
22 Jan 2010 11:41
  • tigereyes
  • tigereyes
From what I understand the Imuran is a better drug then cellcept but is more toxic to your liver then the cellcept. I got a call late last night to call in the AM, wonder if some of my labs came back--Im sure it was the CBC and plateles are below their normal.
Category: Lupus
22 Jan 2010 12:20
  • Kim
  • Kim
Not necessarily, each patient is different. We see that in ITP, where one patient responds to rituxan or another treatment and another patient with what appears to be very similar ITP, does not respond to the same treatment.

I had no problems with imuran and it did nothing for my lupus or ITP, cellcept didn't do much either, although it did seem to help hold my platelets stable, they were not above 30 with 3000mg of cellcept. Imuran at the highest does didn't even do that and my lupus flared while on both drugs.

Regarding liver enzymes-my Alk phos was elevated with cellcept, but never elevated with imuran, although I was on cellcept longer and began cellcept after almost 20 years of managing autoimmune disease, so it could have been the long term use of toxic drugs.

I spent almost 8 years on cellcept, with elevated Alk phos, but after about a year off cellcept, my alk phos is normal, as are all my liver tests. I guess that means it's reversible, even after almost 30 years of toxic drugs, which should be good news for anyone starting or continuing these drugs.

My lupus was very severe, I had a stem cell transplant for autoimmune disease, so I have had an over load of toxic drugs in my medical history. So far (fingers crossed) no major problems, except for osteoporosis and bone problems due to long term use of steroids. I always kept my steroid dose as low as possible, because I felt they were very damaging to my body, maybe more damaging, which is why rheumatologists call imuran and cellcept "steroid sparing" drugs. Although toxic, maybe not as bad as what steroids do to you.

I would never say one drug is better than another drug when treating autoimmune disease, you just never know who will respond to what and sometimes a patient will not respond to a drug used several years ago, but on repeat trial, they do respond. Sometimes they do respond to a drug, but it stops working and they have to go back to a drug used previously. Alternating treatments to stay one step ahead of autoimmune disease.

I've learned to say "never say never" when treating lupus and other autoimmune diseases.

Kim
Category: Lupus
22 Jan 2010 12:29
  • lucidawn
  • lucidawn
So, we went to the hemonc today. First of all his CBC today was 22k today, so we lost 10k since Tuesday night. Not unexpected, but I thought it might possibly have dropped more.

I had called the hemonc last night to let him know ahead of time that Timothy was not taking the Promacta. So, he asked Tim about it and Tim says he hasn't taken it for a long time. Its hard to know what the truth is in this regard-he has a tendency to lie about things when confronted. I think the hemonc was relieved to find the reason the promacata was not working was that he was not taking it.

So he gave Tim some options. Splenectomy, which he says isn't likely to be curative but might make the ITP more treatable. He says splenectomy is "roughly parallel" to the response to IVIg. Though he doesn't get a lasting response to IVIg, any response is considered "a response". I tend to think it will match his gramdma's response. Not curative, some remissions and responds to steroids. She also has been in remission for over a year from one infusion of Rituxan. I wonder if he would respond better post splenectomy.

The other option is other meds. Imuran, cyclosporin, and cellcept as a cocktail. The hemonc wants Tim to think about it and let him know what he wants to do. Oh, and one other option is to live with low counts and intervene with IVIg when he has symptoms, which as he said would seriously impede his lifestyle.

I think that's it for now. He at least has a few more days of double digits. I told him to enjoy his double digits while he has them.
22 Jan 2010 12:43
  • Jenuk
  • Jenuk
Hi
Well Debbie, you beat me to it being first to post here. Someone may remember I was the first person to sign up on the other forum when it changed over from the very old style forum. It was hard to change over, but in the end it worked so much better. Just did not get here quick enough this time ay!

Has this been planned for a while? Must look in more often!

Anyway, good luck with it Joan and Sandi. :side:
Category: Social Chat
22 Jan 2010 12:52
  • tigereyes
  • tigereyes
Kim,
Its great to get feedback from someone who has been there. The reason I never went on a higher dose was my liver enzymes went so high. Im just hoping to get this rash under control and keep everything in check. Small steps right?
Category: Lupus
22 Jan 2010 13:11
  • Kim
  • Kim
Right...just one day at a time.

What type of rash do you have?
Category: Lupus
22 Jan 2010 13:22
  • tigereyes
  • tigereyes
Ive had this rash on my checks, Ive had it in the past and it has gone away but recently it has come on pretty strong. Im really rosey as I put it. The dr commented on it and it gets worse when Im driving or near the sun. 2 weeks ago I broke out in this horrible rash while at the park--burning welts almost, but the welts werent raised, just red and blotchy. She said its sun sensitiviy and to make sure to use a good SPF sunblock and avoid the sun as much as possible. Kinda hard when you live in southern cali but Ill cover up as much as possible.
Category: Lupus
22 Jan 2010 13:47
  • tortie
  • tortie
Will active discussions threads and important stickies be moved over into this site?

Michelle
Category: Social Chat
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