Mac?

Come to think of it, I also had a good, fast response to one infusion in 2004. I got serum sickness after that and had to stop, but haven't had to treat ITP since. That bad reaction cost me dearly though and I'd honestly rather go back to dealing with ITP.

I remember your story and told my sister. She does seem to be getting better each day. Other than the blisters the other side effects seem to be from stopping the steroids. I have faith that John Hopkins will have a better solution. The doctor she is supposed to see specializes in treatment of this disorder.

I'm sure she'll be fine. I was an oddball.

With any luck, she'll get a nice remission and won't have to worry about treating again for a while. It's nice to have a better doc in reserve just in case. They will probably just suggest monitoring for now.

Mac,

One standard dose of Rituxan is 4 x 600 to 700 mg, or so, depending on the size of the patient. If your sister got only one dose, that is still more than the low-dose Rituxan protocol which is typically 4 x 100 mg. Numerous studies have shown that the low-dose protocol works as well as the standard protocol, especially when combined with the dexamethasone.

It could very much be that the rituxan is working. It is also not unusual to have a durable remission from hi-dose dexamethasone. You have plenty of reason to be cautiously optimistic.

Sandi wrote: Come to think of it, I also had a good, fast response to one infusion in 2004. I got serum sickness after that and had to stop, but haven't had to treat ITP since. That bad reaction cost me dearly though and I'd honestly rather go back to dealing with ITP.

Sandi, I wonder if my (relatively mild) allergic reaction symptoms had something to do with the rituxan "doing its thing". The week before my symptoms my count was in the low 40s, the week after it was over 200. You saying your response was quick and so was the serum sickness has my mind turning. Maybe the loss of b-cells, the symptoms, and the rise in platelet count are interconnected....

If so, that bodes well for Mac's sister and hopefully her count will stay high now.

mac wrote: Well I just found out more information. She actually only got one full treatment after those three rounds. They had diluted the medicine so much trying to get it in her?!?!! So after 9 days and all those reactions she only got barely one dose. I was furious when I heard that! So I guess it must be the dex and she will probably drop again in a month or so.......

That makes little sense...I have never heard of diluting rituxan...though I have heard of (and experienced) slowing the administration down.

Rob is right, I got 400mg total and it was likely more than enough (for me). With the dex, it should be even more likely to work.

BUT....Mac, I thought you posted that your sister's bill was over $50K. That sounds like she got 3 full tx. My 400mg was $13K before the insurance discount.

It's an interesting theory, Tamar, but I'd have to think about why that would happen. When I had the first round of Rituxan in 2003, counts were 3k before the third infusion. Serum sickness started the next day and the following week, counts were 150k. I had count responses immediately after the hypersensitivity reactions both times.

So the questions are: Does everyone who has a hypersensitivity reaction respond well following the reaction? And: Why do others respond well with no side effects?

The information on Rituxan states that side effects are not related to results but it will be interesting to hear from people. I had no side effects and so far no positive results. Down to 60,000 today.

Sandi wrote: It's an interesting theory, Tamar, but I'd have to think about why that would happen. When I had the first round of Rituxan in 2003, counts were 3k before the third infusion. Serum sickness started the next day and the following week, counts were 150k. I had count responses immediately after the hypersensitivity reactions both times.

So the questions are: Does everyone who has a hypersensitivity reaction respond well following the reaction? And: Why do others respond well with no side effects?

Yes, THAT is the question. We've said for a long time that serum sickness is very rare, but my recent googling leads me to believe it may not be true for our "off label" use of rituxan.

jrheum.com/subscribers/07/02/430.html

Several factors may explain why rituximab causes serum sickness more frequently in patients treated for autoimmune conditions when compared to those treated for hematologic malignancies. It is conceivable that altered immune responses to foreign antigens may predispose patients with autoimmunity to develop rituximab-induced serum sickness. More likely, however, the humoral immune events that can lead to serum sickness are suppressed in cancer patients, who often receive concurrent cytotoxic chemotherapy with rituximab.

I was starting to wonder if we had made up the "fact" that responses can take several months, but I found this chart on 11 patients who got the low dose regimen, which it is reported takes a bit longer than the standard dose (but std dose still can have a delayed response).


[b]EDIT: the chart actually shows patients who got the regular dose, not the low dose. It's late....[/b]

Tamar, yes her bill was that high. She only found out today that it was diluted. None of this has made any sense to me. Her drip was only at a rate of around 12.5. Every two hours she would have to stop due to her throat closing up and be given more benadryl and steroids. Maybe her bill also included the nine days at the infusion center. So if I understood what she was saying she spent nine days getting one dose. Maybe it was all the other meds that gave her also for the reactions she was having OR maybe yet again this Dr doesn't know.... All I know is that I am so glad she is going somewhere else.

It's nice to see some proof of that. I noticed years ago that people who have Lupus or are predisposed to Lupus seem to have serum sickness far more often than those who only have ITP. I don't see why that wouldn't apply to other autoimmune disorders too, we just don't see a whole lot of the others here as much as we see Lupus. They actually use Rituxan as a Lupus treatment, so you'd think there would be more studies on the incidence of serum sickness in those patients. Well, one reason is that it is misdiagnosed so often as a virus or a Lupus flare. When the timing is right and the symptoms are so exact, I know the doctors are wrong.

No, we didn't make up the length of time that it can take for Rituxan to work. I posted some articles about that a few weeks ago.

Mac - I think we are all glad that she is going somewhere else!

Thanks Sandi. For those who wonder why I would think we made it up...a lot of our early information here on the discussion site about rituxan came from one man whose wife had a really severe case of ITP, and if I remember right, rituxan + imuran brought her count up into the 40s, which was a huge improvement for her. He was, understandably, a huge rituxan fan, but I always felt he crossed a line from providing information to cheerleading and encouraging others to try what was a very new treatment.

I could not remember if the "fact" that rituxan can take time to show a response came from discussions back then. I'm glad there's evidence!

I don't remember length of time being much of the discussion back then. He was actually the reason that I used Rituxan because yes, he was a huge advocate. It was so new for ITP back then. I also don't remember that his wife was on Imuran. I thought she was on a Rituxan/steroid mix and she'd also had a splenectomy. Her death from sepsis is one reason why I do not like to see the kitchen sink approach with ITP. Doing a splenectomy so soon after Rituxan or having Rituxan after splenectomy can be risky. It haunts me to this day. So may articles state that patients die from infection as much as, or even more than bleeding incidents. No one seems to take that seriously enough.

I got way off track, but sometimes that needs to be said too.

Would hypothyroidism be considered autoimmune? My sister has that as well. The above information is very interesting.

Hashimoto's thyroiditis is an autoimmune condition that is most often responsible for hypothyroidism, in countries where iodide is added to salt. Other causes include iodide deficiency, previous radioactive iodide treatment to treat HYPERactive thyroid.

If it's Hashimoto's, Mac, then yes. Many people with ITP have more than one autoimmune disorder since the predisposition to acquire them is higher if someone already has one.

I developed Hashimoto's first and was diagnosed with ITP about 5 years later, Mac.

Thank you all so much. You have all helped me understand this disease so much.

Graves Disease, hyperT, is also autoimmune [I'm too lazy to see if anyone else said that] - just thought I'd throw that in.

And Mac, I've been keeping up with you and your sister and I wish her well! She is lucky to have you for a sister!

Good news my sister has an appointment at John Hopkins....bad news it is not until the middle of May! I was so hoping for something sooner. She is to continue to have CBC with the other dr every two weeks until she goes there.

If she has the ability to drop everything and go on a minute's notice, have her find out if Hopkins keeps an appointment cancellation list. This can allow a person to grab someone else's cancelled appointment, but there might not be a lot of advance notice.
I once got into an endocrinologist about four months earlier than my own scheduled appointment using this method.

Mac:

As long as her counts stay good, waiting until May won't do any harm. I'm sure all they would suggest anyway is to monitor, and she can do that anywhere. If counts drop however, that would be a problem. Hopefully though, she is in remission.

Remission would be music to my ears Sandi! I just don't want this current doctor doing anything else....

She is still having joint pain and blisters appear and go away. He told her that it could take a
couple months before the side effects go away. Praying they do go away. Does that sound right? She doesn't even know what the reactions are from the Dex or rituxan.

I don't know what those side effects are either, so I don't have any idea when they might go away. If it doesn't end soon though, she should see a different type of doctor....Rheumatologist or Allergist, maybe?

Mac,

If your sister's hypothyroid is caused by Hashimoto's thyroiditis, rituximab may, at least temporarily, increase thyroid levels.

There is little information on hypothyroid being treated with Rituxan, as it is so easily treated with synthetic thyroxine, but there are case studies where rituxan was used for treating other conditions, where coexisting autoimmune thyroiditis was improved. For example:
archinte.jamanetwork.com/article.aspx?articleid=415034

She might want to ask about having her thyroid levels monitored, or at least be watchful for symptoms of HYPERthyroid.

Rob I checked and she said she doesn't have that type of thyroid disease. She is still having joint pain and I found that there is a skin reaction linked to rituxan that appears to happen in allergic reactions to medicine. The joint pain isn't getting worse but isn't going away. I read it can be from steroid withdraw but she is two weeks off of them. It was though an abrupt stop to Dex. She really shoukdnt be on long term steroid use because she already has orthopedic hip issues. Ugh I just want this all to calm down! I pray Hopkins can get this all under control.

Joint pain can linger long after steroids are stopped. Hopefully that's all it is.

My joint pain lasted at least 2 months after getting totally off of prednisone.

My sister went for a cbc. Her count was 267,000 which a small drop from March 18th when it was 311,000. She stopped all meds including the Dex on March 11th. Hopefully it stays stable until she goes to John Hopkins on the 12th of May.