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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #47836 by Sandi

Replied by Sandi on topic Mac?

That is a fantastic count. Fluctuations are perfectly normal and occur in people without ITP. Platelet counts change constantly. Looking good!

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mac
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10 years 9 months ago #48002 by mac

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New CBC is count of 189,000. It's down again from two weeks ago at 267,000. All steroids stopped on March 11th. Do you think it is a pattern of dropping like before?

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Rob16
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10 years 9 months ago #48006 by Rob16

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I think it is MUCH too early to start looking for a pattern. Even if she does develop a pattern of falling counts, chances are they will level off at an acceptable level. But too early to tell.

How are all of the crazy side effects going? Did they go away after treatment was stopped?

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48008 by Sandi

Replied by Sandi on topic Mac?

I agree. It could just be that the counts are settling into a plateau. That tends to happen.

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mac
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10 years 9 months ago #48009 by mac

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She is just now starting to feel somewhat normal again. She still gets the random blisters and her feet are peeling and get blisters but is much better. One month to go before the appt. with the new Dr.at Hopkins.
I asked the question because the first time she treated with steroids before the rituxan she plummeted about 3 months after the pred. was stopped. The current doctor today told her he expected them to continue to fall. I just didn't know if that was true. He also told her she didn't even get one full dose of the rituxan after 9 days of infusions and all those side effects.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48013 by Sandi

Replied by Sandi on topic Mac?

No one can predict if counts will fall or not. He's wrong to assume and tell her that. It's possible that they may, but it's possible that they may not.

I think we determined that she did get a full dose in another thread. Even if she didn't, it could still be enough to get a response.

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mac
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10 years 9 months ago #48015 by mac

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That's what I thought about the rituxan too. It seems to change each time she goes. I just want a new Dr. to look at this but I need to be patient. I guess in time you learn to relax with this disease. Thanks for keeping me sane in the process.

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mac
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10 years 9 months ago #48333 by mac

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How long can side effects from rituxan last and can they come and go? My sister has blisters on and in her mouth. They do not appear to be blood blisters but regular ones. She is also having bruising again though. She goes to get a cbc tomorrow but still has two weeks until she sees the new dr.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48335 by Sandi

Replied by Sandi on topic Mac?

Mac:

I have never heard of anyone having that side effect, so I don't know how long it could last. I seriously think that she needs to see a dermatologist or some other specialist. If it were solely due to Rituxan, it shouldn't be going on this long. It's possible that her reaction to Rituxan triggered some sort of autoimmune response that may not go away on it's own.

I hope all goes well with the count tomorrow.

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mac
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10 years 9 months ago #48337 by mac

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Thanks I will pass your advice on to her. That rituxan is one strong med. The more she talks of her symptoms the.more I don't have much faith in tomorrow's count. She got a small cut on her arm and her coworker had to apply pressure and she still needed 5 band aids. To stay positive though it did stop.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48342 by Sandi

Replied by Sandi on topic Mac?

Rituxan can cause mucocutaneous reactions. I have no idea if that is what your sister is experiencing, but it's not something that I would ignore. Better to be safe than sorry.

5 WARNINGS AND PRECAUTIONS
5.3 Severe Mucocutaneous Reactions

Mucocutaneous reactions, some with fatal outcome, can occur in patients treated with Rituxan. These reactions include paraneoplastic pemphigus, Stevens-Johnson syndrome, lichenoid dermatitis, vesiculobullous dermatitis, and toxic epidermal necrolysis. The onset of these reactions has been variable and includes reports with onset on the first day of Rituxan exposure. Discontinue Rituxan in patients who experience a severe mucocutaneous reaction. The safety of readministration of Rituxan to patients with severe mucocutaneous reactions has not been determined. [See Boxed Warning, Adverse Reactions (6, 6.1)]

www.fda.gov/Safety/MedWatch/SafetyInformation/ucm328041.htm

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mac
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10 years 9 months ago #48343 by mac

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What type of dr would best address this issue?

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48345 by Sandi

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A Dermatologist or Immunologist, I would think. She should start documenting with pictures every time it happens.

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mac
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10 years 9 months ago #48351 by mac

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Ok. I know she ha pictures of everything that has occurred a far as reactions go.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48354 by Sandi

Replied by Sandi on topic Mac?

Good. It's possible that nothing is wrong but I wouldn't risk letting it go on any longer.

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mac
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10 years 9 months ago - 10 years 9 months ago #48384 by mac

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The count is 84,000 down from 189,000 two weeks ago. Ugh..but it is still in the safe zone, right?

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48388 by Sandi

Replied by Sandi on topic Mac?

Yes it is. It can bounce around a bit and could even go up.

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mac
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10 years 9 months ago #48392 by mac

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Thanks Sandi! I just want it to stay up high enough for another 10 days! She sees the new doctor at that point.

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mac
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10 years 9 months ago #48409 by mac

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After rituxan is the next step usually promacta or nplate? Which is best to try first?

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48411 by Sandi

Replied by Sandi on topic Mac?

The next step could be Promacta or N-Plate, or the doctor might suggest Imuran or CellCept. It depends on the doctor.

N-Plate is a weekly injection. Promacta is a daily pill. They are both TPO's, meaning that they cause the body to produce platelets. Either one can be tried first it just depends on the patient's preference.

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mac
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10 years 9 months ago #48415 by mac

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Which would you consider to be the "least" toxic. She is very sensitive to meds of any type.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago #48416 by Sandi

Replied by Sandi on topic Mac?

I don't know. I don't think either of them are nearly as bad as Rituxan. Very few people have reactions to the TPO's; I don't think hypersensitivity is much of a problem with these two although anything is possible. I'm sensitive to meds too but wouldn't really worry about that with these.

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10 years 9 months ago #48420 by mac

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Do people who have responded to steroids generally respond to those drugs? I remember Emily saying the Dr Provan liked promacta better than nplate because of it being less fluctuations.

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EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 9 months ago #48421 by EmilyK

Replied by EmilyK on topic Mac?

Yes dr provan said that he sees less large fluctuations up and down with promacta because you take it every day. However, you cannot eat or drink for 4 hours before or after each dose and many find that too difficult. I figure if I go that route it means getting up at 5 am to take the pill. I am usually up at 5:30 any way so that did not seem too difficult. Promacta is also part of the drug coverage for health insurance so you need to make sure what the cost might be. Also some people seem to do well on one and not the other and some have side effects from one and not the other. Sadly, like every other thing about ITP, there is no good predictor of what works, why it works, how long it will work, what side effects might be experienced or anything else. On the positive side, nplate and promacta work 80% of the time and can lead to a remission or at least staying in some safe zone.

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mac
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10 years 9 months ago #48422 by mac

Replied by mac on topic Mac?

Thanks Emily. I just want something to work and work for awhile. Not to mention be not so toxic and so she can function at work while on it. Did Dr Provan happen to mention if side effects go away with these meds as you are on them longer. I know with some meds your body adjusts the longer you take them.

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EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 9 months ago #48423 by EmilyK

Replied by EmilyK on topic Mac?

I did not ask him if the side effects diminish over time, but from what i have read here, it seems unlikely. I think that is why some people switch from one to the other. Most common side effects seem to be head aches and stomach issues. You can google each and see all the listed side effects. I had nplate only four times but had no side effects and it is a tiny needle that did not hurt at all. I know your sister seems to be very sensitive to drugs, but sadly there are just no predictive factors. It certainly seems that the risk of significant side effects is much less than rituxan and that any good or bad effects leave the body quickly if you stop the drug other than the very surprising remission some people have from either. I look forward to hearing what her consulting doctor says.

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Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 9 months ago - 10 years 9 months ago #48426 by Sandi

Replied by Sandi on topic Mac?

Mac:

The main thing with the TPO's is that counts should be maintained around 50k. Dosing should be adjusted to achieve that. If counts are too high, there is a risk of blood clots. Patients should not attempt to strive for normal counts.

To minimize the risk for thrombotic/thromboembolic complications, do not use Nplate® in an attempt to normalize platelet counts. Follow the dose adjustment guidelines to achieve and maintain a platelet count of ≥ 50 x 109/L.

www.nplatehcp.com/nplate/about-nplate.html?WT.srch=1

PROMACTA is not used to make your platelet count normal.

www.promacta.com/citp/risks-and-side-effects.html?rotation=71700000007293901&banner=58700000304870722&kw=4942235851&cc=us:p1114c00049:e1:w1:p25&pid=2235851&bing=e_

There are some side effects listed, but most people do very well with the drugs. Many people have reported that side effects do go away during treatment.

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weirdjack

10 years 8 months ago - 10 years 8 months ago #48433 by weirdjack

Replied by weirdjack on topic Mac?

Quote; "However, you cannot eat or drink for 4 hours before or after each dose and many find that too difficult."

Sorry, but that is not accurate. This sort of misinformation simply scares folk unnecessarily. It scares me just reading it!
Taking Promacta is not difficult at all. The instructions from GSK for Promacta ACTUALLY say:

* Take PROMACTA on an empty stomach, either 1 hour before or 2 hours after eating food. (nothing unusual there)
. . . . . . . THEN it says . . . . .
* AVOID the following for at least 4 hours before and for 4 hours after taking PROMACTA; Dairy products, Calcium- and magnesium-rich foods, Antacids,Multivitamins, supplements, or other products that contain iron, calcium, aluminum, magnesium, selenium, or zinc".

As for side effects? The minimal side effects were quite easy to become accustomed to and diminished over time.
During the three years I used Promacta, I found it to be extremely easy to take and function on. I took the dosage in the middle of the night....around 1:00am to 2:00am or so. Done, no worries.
If it didn't cost so much, I'd still use Promacta.

.

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EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 8 months ago #48441 by EmilyK

Replied by EmilyK on topic Mac?

My apologies. My doctor said, to be on the safe side, try not to eat anything for four hours before or after. I will go back to lurking and not advice giving.

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mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 8 months ago #48453 by mrsb04

Replied by mrsb04 on topic Mac?

Please don't lurk Emily......my doctor said the same .... and why weirdjack .. if you think Emily's information is wrong, did you decide to take it in the middle of the night ?

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You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.