Oh sorry I was thinking of the wrong thing. Can't edit or delete posts though so have to leave it there.. oops.

That's good you're on plaquenil...rashes might be worse without it and it generally helps joint pain and fatigue

Hi there, although I'm Kim here, no longer Kimil, figured I have not lived in IL for so long, I should drop the il, but it's me, now just Kim and I'm from Wisconsin, been here 5 years, so now is a good time to change and since I was one of the first to register, I get to be Kim. I had to be Kimil on the other forums, because there was another Kim.

I like the new forum boards, seems easy to me, except for a few little things I'll have to get used to. I don't like having to log on each time and I wish when I clicked the link in the email notice it would just take me there, without having to log on. I find it easier to read through the posts and I love the option for email notice when someone posts to a discussion I'm following.

Will they do a low dose rituxan? If not then it's maybe worth looking into as there is a less likelihood of side effects.

I'm with you with the slowness of the forum and sadly when it gets busier it's going to get even slower. If you go back to the old forum it feels that it really flies.

Was Caitlin taking pred straight after stopping the Nplate and not getting a response? I ask because reading up on Nplate, I see that when on it the body's natural TPO is suppressed so when you stop the Nplate some people won't make platelets at all. And of course if you're not making platelets there are none for the pred to preserve. That happened to me on missing a dose of Nplate and crashing, the pred did absolutely nothing.

I am sorry to hear Tim's counts went down again, but I know what you mean...nothing is unexpected once they've been going through low counts for a while now. What a hard decision that you both have to make coming up...a splenectomy or something else.

We're starting to head down the same pathway too where some things are not working anymore. I just don't know when you can say it truly doesn't work anymore though. Because Prednisone worked really well for Caitlin last time and this time, it had no response at all. I don't know if this means she won't get a response if she goes on Prednisone again.

I hope Tim is remaining in somewhat good spirits. If this hadn't hit us smack in the middle of competition season, Caitlin would be "ok" with all of this. We need her counts to be low in the summers and high during the year, but of course...it's just the opposite! Continue to hang in there! I am hanging on only because we're not out of options yet..

I'm still trying to get used to this site. It "looks" pretty, but it is so darn slow that I'm tempted to post on the old site. I know I need to move forward on here though!!

Anyways, Caitlin had her IVIG last week. It didn't really boost her count at all. She only went up from 19 to 24. They had to treat because she had some bleeding and they were afraid it was internal bleeding. They decided to put her back on a high dose of Prednisone last Tuesday and we got a count today. No response again and her count went down to 20, but at least this time...she has no bleeding symptoms. I'm worried once she finishes the steroids though, we'll be dealing with some symptoms.

I have a feeling Caitlin will be starting the Rituximab/Rituxan this week, pending insurance approval. I truly hope that this will work for her because she is in the "angry" stage now where she is mad that nothing is working. If she wasn't in anything...that would be one thing, but she is being restricted at doing something she loves. I am more worried about the side effects of Rituxan than anything. If she has the same kind of reaction that she had to IVIG, she is going to be missing alot of school the next few weeks (if we start) and I don't even know what to do about work. And I HAVE to work...I don't have a choice because my husband is self-employed so I carry insurance for the 4 of us through my employer.

Trying to remain positive for Caitlin. She does have another competition in the morning and she should have fun with that. (No dangerous tumbling or flying) One of their teammates is out due to having a concussion earlier this week and she is really not able to remember anything. (She got it during a pep rally at her high school when she was basing for a stunt...the girl on top of her fell down on her and then she hit her head down on the hard gym floor.) They said it can take up to two weeks before everything comes back so she doesn't know who some of her teammates are or any of the routine. She did go up to Caitlin (one of the few names and faces she recognized) last night and say that she finally knows what she goes through with all of the pokes and prodding and it is not fun. I pray they all pull through tomorrow and it would be so nice if they could get a win, but that is wishful thinking at this point!

I don't know if it works properly but if you hit the link that says 'Show Latest Posts' and then on the drop down box choose 'Since Last Vist' that seems to be the most like the old Active Discussions although it doesn't lay things out as nicely.

Ive been on plaquenil for over 3 yrs now. The only side effects I have had is stomach upset. But that too comes and goes.

Don't forget to watch the Haiti fundraiser on TV tonight. I know it's being broadcast in NA.

There is another blood test they are supposed to do before starting Imuran but i cant remember the name of it. I think its an enzyme It rules out a problem that makes sure the Imuran wont work something like 100x stronger dose than it is. The call might just have been to get this test done.
Ive been on Imuran for 2& half years now and have had no probs with it and kept my counts up lovely!
Good luck
Julia

Does anyone on this forum know anything about Promacta? Has anyone tried it? If so, what were the results?

Thank you. MaryEllen

I have learned that when you send an email from this site the recievers address is private until they respond and then they will show their address.

I'm questioning and testing regarding privacy and security concerns.

You will now be able to send an e-mail to anyone on the user list as well as establish Facebook-like connections.

To use these features, go to the 'List of Web Site Members', choose one, and use the 'message' and 'connection' tabs.

Joan

Do we have an inbox option?

Are our email addresses private?

Michelle

She's right a good sunscreen works to manage sun sensitivity rashes. Also, get a few cute hats and have some fun with that. I wear hats a lot in the summer and people came to know me by my hat wardrobe. Often gifting beautiful and funny hats to me. I don't wear the funny one, but it's fun to laugh at them when I receive them. I don't wear hats all year long, because I live in north eastern Wisconsin and it's dang cold and gloomy here in the winter. I wear winter hats, that keep my ears warm, but makes a mess of my hair.

Are you on Plaquneil? Plaquneil helps skin rashes too.

Will active discussions threads and important stickies be moved over into this site?

Michelle

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.

Right...just one day at a time.

What type of rash do you have?

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?

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:

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.

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

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.

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.

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

So, I just edited my profile to add my signature, so I'm testing to see if I did it right!