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Mac?

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 10 months ago #47157 by Sandi

Replied by Sandi on topic Mac?

Mac:

My first round of steroids lasted about 3 or 4 months too. I did a second round that ended up lasting 1 1/2 to 3 years. The reason I don't know exactly how long is because I stopped going for counts that last year and a half. When I finally did go, counts were 30k. I don't know how long they were down and having had no symptoms, it didn't really matter.

There is every reason to hope that she will have a lasting response. If not, we all take a big breath and get her through the next thing. Since her counts are doing really well, there is a very good shot at remission.

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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 10 months ago - 10 years 10 months ago #47158 by Sandi

Replied by Sandi on topic Mac?

I found it. It was in a thread that Ann posted about an International ITP conference that she attended.

She said:

What did seem to be fact was that there is now accepted to be two types of ITP, antibody mediated and cytotoxic T-cell (killer) mediated. Each has its own mode and its own treatment options. Antibody mediated seems to respond to rituximab, IVIG and cyclophosphamide while T-cell mediated responds to steroids, mycophenolate and ciclosporin.

Some people have both antibody and T cell mediated ITP. In any case, your sister is covered either way.

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mac
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10 years 10 months ago #47159 by mac

Replied by mac on topic Mac?

Thank you for the positive thoughts. I just keep thinking the counts are only good because of the steroids. I need to think positive and just get her to stop rituxan. Do people who respond as bad as she does to rituxan usually have horrible side effects from the other meds as well? The dr says this is the least invasive med but I question that at least for her.

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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 10 months ago #47165 by Sandi

Replied by Sandi on topic Mac?

Some people are sensitive to meds. I am one of them. However, the meds for ITP are all different so there is no reason to believe that she'd have reactions to all of them. I do not consider Rituxan to be the least invasive. It's a good one to try for a shot at remission, but it is not an innocuous drug. There are risks. Heck, they all have risks and everyone reacts differently but Rituxan is pretty heavy duty in my book.

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mac
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10 years 10 months ago #47208 by mac

Replied by mac on topic Mac?

Ok...so I finally convinced her to go for another opinion. Here is the frustrating part. Hopkins wants a referral and UVA wants to see all her labs to determine if they will see her. Now she is beyond irritated. Anyone have any suggestions on how to get around all this. She really didn't want to tell her current doctor she was going.

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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 10 months ago #47209 by Sandi

Replied by Sandi on topic Mac?

It's well within a patient's rights to get second opinions and if a doctor doesn't like it, I wouldn't want him anyway. But I understand that she would be uncomfortable with it.

So, she could probably get a referral from her GP, and she could also request copies of her labs from her current doctor and tell him they are for herself. I usually always get copies of my labs and keep them in a folder.

Either that, or get a second opinion somewhere else.

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tamar
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10 years 10 months ago #47211 by tamar

Replied by tamar on topic Mac?

"All her labs" probably just means the CBC from her last appointment.

Your sister should be keeping/getting copies of all labwork anyway. Does her current clinic have "mychart" with only test results?

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mac
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10 years 10 months ago #47213 by mac

Replied by mac on topic Mac?

She does keep all copies and has sent them to UVA. I'm not sure what they look for in making the determination to see her. Good idea about the GP making the referral. Thank you all once again!

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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 10 months ago #47216 by Sandi

Replied by Sandi on topic Mac?

Well, sounds like she's good to go!

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mac
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10 years 10 months ago #47252 by mac

Replied by mac on topic Mac?

Update: so my sister went to the ER tonight after some pretty severe swelling and more blisters. They ran a test on everything: heart, lungs. Kidneys, liver. Everything turned out fine. Her tests were normal. They think it is once again side effects. I feel much better having another doctor looking at everything and that she was okay. Her platelets were.277,000 on Wednesday and they were 331,000 tonight in the ER. The GP is also ordering the referral for the second opinion. Oh, and in the midst of all that my grandmother passed away.

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

10 years 10 months ago #47254 by EmilyK

Replied by EmilyK on topic Mac?

I am so sorry about your grandmother. That is a lot to deal with all at the same time. Your sister's count seems great. Hopefully she will recover from the side effects and stay with good numbers.
All the best.

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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 10 months ago #47258 by Sandi

Replied by Sandi on topic Mac?

Sorry to hear all of that, Mac. I hope your sister is okay. I have never seen anything like this happen with Rituxan. If she gets any worse, make the doctors look into it more. ER docs can miss things sometimes when they are not familiar with the symptoms. It's happened to me. Keep us updated.

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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 10 months ago #47260 by Sandi

Replied by Sandi on topic Mac?

Where is she swelling and where are the blisters?

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mac
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10 years 10 months ago - 10 years 10 months ago #47263 by mac

Replied by mac on topic Mac?

She is mainly swollen in her legs but she is really steroid puffy all over. The blisters are all over her body. They don't really hurt but are more of a nuisance. The DR doc did consult with another hemo in the practice and he said the same thing you did about the rituxan. He has never seen her symptoms. They did about every test known to man. Blood gas, chest xray, EKG, dye test of kidneys, cat scan. All came back normal and so did all the blood work except a slightly higher wbc count but it was better than previous ones before treatments. They did tell her to follow up with a pulmonary person to do some asthma or allergy testing of the lungs but that they couldn't do that in the ER and her lung function was normal. The blisters are not the blood ones you all speak about it is the regular fluid filled ones. They are small. They also said follow up with Dr next week and come back if it worsens or new things happen.
Do you think the rituxan is st least working with the rise in counts? I sure hope so after all this.

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CindyL
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10 years 10 months ago #47265 by CindyL

Replied by CindyL on topic Mac?

Condolences on the loss of your grandmother, Mac.

Good news on your sister's count.

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tamar
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10 years 10 months ago #47266 by tamar

Replied by tamar on topic Mac?

Mac, I'm sorry to hear about your grandma's passing. It must just seem to you and your sister that when it rains, it pours. I think it's time to take a deep breath and slow down.

Did you say your sister was on steroids? If so, how much?

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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 10 months ago #47271 by Sandi

Replied by Sandi on topic Mac?

Mac:

Her counts were already up when she started Rituxan right? So I don't know what is working. Something is/did, because her counts have been fine. It can still work if a person has side effects.

I hope she gets away from that doctor who just kept pushing her to keep having infusions. Hopefully, she gets better from here. Did they give her anything for the blisters? Sometimes steroids can work if it's a hypersensitivity reaction, but if that what is causing her swelling (fluid retention), it might not be the best thing. I do think it's odd that she'd have so much swelling since she's been tapering and is off of Prednisone. I've never seen swelling get worse after a person is off of it.

My grandmother died on the same day that my 13 year old daughter had an emergency appendectomy. We postponed the funeral for five days until she was out of the hospital. Maybe you could do that for a few days to see if your sister gets better. It was one of the worst days of my life but somehow you do get through things like that.

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mac
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10 years 10 months ago #47282 by mac

Replied by mac on topic Mac?

Her counts were 39,000 when she started and that was without steroids. She was given 20mg of that dec(sp?) steroid when she started the rituxan. I've seen other posts with that listee in conjunction with rituxan. She has been off that since Tuesday. They gave her a steroid cream for the blisters and a lot of fluid medication. She doubled up on that last night and her fluid is much better this morning. I'm sorry that happened to you Sandi. It seems like things happen in waves.

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Rob16
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10 years 10 months ago #47285 by Rob16

Replied by Rob16 on topic Mac?

So sorry about your grandmother. Mine passed 35 years ago, but she remains very much a part of all her grandchildren.

It is unfortunate that it has taken a trip to the ER to get your sister on the right track. I hope that the "second opinion" will turn into the new doctor. Perhaps the GP could take a more active role as well.

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mac
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10 years 10 months ago #47288 by mac

Replied by mac on topic Mac?

Rob, Thank you so much. I totally agree that I hope this will lead to a new doctor! All of you have no ideas how much you have helped me. You have kept me sane in this process.

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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 10 months ago #47291 by Sandi

Replied by Sandi on topic Mac?

Yes, Dex has been given with Rituxan. Was she on 20 mg's of Dex the entire time she had Rituxan? I'm getting confused.

I'm glad the swelling has gone down.

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mac
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10 years 10 months ago #47293 by mac

Replied by mac on topic Mac?

Sandi, you and me both! I feel like I'm in a fog. I think she has been on the steroid the entire time.

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mac
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10 years 10 months ago #47391 by mac

Replied by mac on topic Mac?

Hello!
My sister met with the current doctor and he agreed to.stop th rituxan. He even said he had.never had someone so allergic to it before. He also stated that only two other treatments are possible because she is allergic to rituxan. Is that true? He agreed to do a referral for Hopkins. YEAH! Her count were 277,000 last Wednesday, 311,000 on Friday at the ER and 313,000 today. Would the rise still be from the dex or could it be th rituxan?

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tamar
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10 years 10 months ago #47392 by tamar

Replied by tamar on topic Mac?

Finally, Mac! You must be so relieved.

I have been doing some research on serum sickness, and it turns out it is much more prevalent when rituxan is given to patients with autoimmune conditions than when it is given to cancer patients. It might be as high as 20% of autoimmune recipients that end up with serum sickness.

By the way, this is on the rituxan.com website:

Tell your doctor right away about any side effect you experience. RITUXAN can cause serious side effects that can lead to death, including:

Infusion Reactions: may occur during or within 24 hours of your infusion. Your doctor should give you medicines before your treatment. Symptoms can include hives, rash, itching, facial or oral swelling, sudden cough, shortness of breath, difficulty breathing, weakness, dizziness, feeling faint, racing heart, or chest pain Severe Skin and Mouth Reactions: symptoms can include painful sores, ulcers, or blisters on your skin, lips or mouth; peeling skin; rash; or pustules.

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mac
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10 years 10 months ago #47393 by mac

Replied by mac on topic Mac?

Yes Tamar I'm so relieved. I think she has had most all those reactions. He would tell her it was a side effect.....I asked her how many side effects does it take to be an allergic reaction. It was making me crazy!

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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 10 months ago #47396 by Sandi

Replied by Sandi on topic Mac?

It all goes back to what we said at the beginning. If the treatment appears more dangerous than the disorder it is meant to treat, it's not worth the risk. I can't believe he put her through all of that.

I would go with the combination of Dex and Rituxan as the reason for her counts. She's been doing great with counts and hopefully it will continue. I would bet that she's probably in remission at this point.

I have no idea what two treatments he thinks she has left, but I don't agree with that at all. Rituxan is an odd one in the lineup and the thing that usually causes problems (mouse serum) is not in any other treatment.

I'm glad he is referring her out. He's a hot potato.

I agree that severe hypersensitivity reactions seem occur more often in those with autoimmune disorders. These biologics need to be taken more seriously.

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mac
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10 years 10 months ago #47399 by mac

Replied by mac on topic Mac?

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.......

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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 10 months ago - 10 years 10 months ago #47400 by Sandi

Replied by Sandi on topic Mac?

Mac:

I wouldn't assume that. Sometimes that is all it takes for Rituxan to work. Tamar just did one, low dose infusion and her counts responded very well, fairly quickly. Also, many people have very fast drops when they stop Dex, so if it was Dex alone doing the job, she might not be maintaining counts as well.

We have cited studies that have shown this to be true, which is why some of us keep saying that patients may not need the four, full dose infusions. Studies have also shown that the result is sometimes better with the combination, so she might be good for a while.

Only time will tell of course, but if counts drop again, there are other options that might be much easier on her (Win-Rho, N-Plate, Promacta).

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midwest6708
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~ Janet ~ Diagnosed Sept. 2008

10 years 10 months ago #47402 by midwest6708

Replied by midwest6708 on topic Mac?

I'm so glad the situation is better for your sister now, Mac.

If you think the experience might have left a sour taste in her mouth, you might gently suggest that she educate herself more about ITP before simply allowing all the decisions be made by an MD. Or... Maybe even offer to be a partner with her in accepting additional medical advice. As you already know, and hopefully your sister does now, there are some really, really dreadful doctors in any field. It can be dire when we personally run into one of them.

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mac
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10 years 10 months ago #47403 by mac

Replied by mac on topic Mac?

Thank you for the hope. She has been off the dex for a week. Maybe she will get something out of this horrific situation. I can't wait until she goes to the new doctor.

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Mac?

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.