Beth Siegelbaum

Anytime anybody finds a lump, they get nervous. I went to this doctor, and he basically brushed it off and said, oh, it's, you know, it's just fatty tissue and it's nothing you're ever going to die from. So okay, fine. So, I left and I felt okay about it. And then I found another lump on the other arm. I said, I think I need a second opinion. So, I went for; to a different doctor and he said, let's biopsy this. And that's how I got my lupus diagnosis.

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt.

Barbara Pruitt

Thank you for joining us. At PDSA, we recognize May as Lupus Awareness Month in acknowledgment of the connection between lupus and immune thrombocytopenia (ITP). While many individuals are diagnosed with primary ITP, others have secondary ITP, in which another autoimmune condition, such as lupus, plays a role in their diagnosis.

Approximately two to three percent of patients with ITP go on to develop Systemic Lupus Erythematosus also called SLE or lupus. While most ITP cases remain primary, the risk of developing lupus is significantly higher in females and those with positive Antinuclear Antibody known as an ANA test.

Lupus is a chronic disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system (the body system that usually fights infections) attacks healthy tissue instead. Lupus most commonly affects your skin, joints, and internal organs like kidneys and heart. Because it affects many parts of the body, it can cause a lot of different symptoms.

Today I have two women as guests that both have ITP and lupus. I want to welcome Cathy Aldama and Beth Siegelbaum.

Cathy Aldama

Hi, Barbara. Thanks for having me

Barbara Pruitt

Glad you can join us.

Beth Siegelbaum

Hi, Barbara. I’m glad  to be here.

Barbara Pruitt

Well, thank you both of you for joining us today. I know that this conversation will be Educational for me, as well as our listening audience, and maybe enlightening for another individual that might have ITP and lupus. So, let me start off by asking both of you, when was your ITP diagnosed? How long ago? Cathy?

Cathy Aldama

My ITP was diagnosed back in October of 2006, so it's almost been 20 years. But I was actually diagnosed at the same time as my lupus diagnosis.

Barbara Pruitt

Whoa. Both at the same time. Okay. And what about you, Beth?

Beth Siegelbaum

Well, I was diagnosed with ITP probably in the mid nineties around 1995. And that was long after my lupus diagnosis diagnosis, which was in 1977, I think.

Barbara Pruitt

Wow.

Beth Siegelbaum

So it was a long time.

Barbara Pruitt

So you were suffering with lupus for 20 years before they figured out you also had ITP.

Beth Siegelbaum

Right.

Barbara Pruitt

Right. What in In your case, Cathy, I mean, you were diagnosed with both at the same time. Were there certain symptoms that you were experiencing that made them think you also had lupus? Yeah.

Cathy Aldama

For me, it was like I really didn't know that anything was really wrong with me or going on, except for extreme fatigue. I have four kids. I think at that time they were ages 11 to 18. And so I was constantly running around taking them, you know, to school, picking them up, taking them to activities and things like that. And I just thought, gosh, you know, I must just be exhausted from that. But I started taking naps and it just seemed like that fatigue never went away. I just even felt more tired. And so finally, probably after several months, my husband goes, you know, maybe you need to just go get checked out and make sure everything's okay. So, I started off with my OBGYN, and she ran just complete everything. Just, she goes, let's just make sure everything is okay. And at first my platelet count came back low. So she goes, you know, a lot of times there's errors with that. Let's, you know, come back in and we'll run another CBC, see what your platelet counts at. It was even lower. So, it went from like down to 35, think at the time.

Barbara Pruitt

Wow.

Cathy Aldama

But with all the other results from the blood work, she suspected something more was going on. And I think she was thinking it must be lupus. So, she referred me to a rheumatologist. I went to him, he ran some more blood work, examined me, asked me a lot of questions and went through all the criteria that from the American College of Rheumatology to see what symptoms I had. And from there, I had enough of everything for him to diagnose me with mil with lupus. But then the question was with the low platelet count, what's going on with that? So I was referred to a rheumatologist right after that. So, it was pretty shocking.

Barbara Pruitt

You mean hematologist?

Cathy Aldama

I mean yeah, hematologist, oncologist. So yeah, it was pretty shocking to get all this news at one time.

Barbara Pruitt

Yeah, I would think so. You got the double whammy.

Cathy Aldama

Yeah.

Barbara Pruitt

And Beth, what about you? You had lupus diagnosis first. What were your symptoms? What were you having?

Beth Siegelbaum

Right. So, I have a different kind of lupus. I have what's known as lupus profundus or lupus paniculitis. And, uh, my first symptom was lump on my upper arm. And of course, anytime anybody finds a lump, they get nervous. So I went to a doctor and I was kind of new in town. at the time and I didn't have a doctor. So, I, somebody recommended somebody, I went to this doctor, and he basically brushed it off and said, oh, it's, you know, it's just fatty tissue and it's nothing you're ever going to die from. So okay, fine. So, I left and I felt okay about it. And then I found another lump on the other arm. I said, I think I need a second opinion. So, I went for two different doctors and he said, let's biopsy this. And that's how I got my lupus diagnosis.

Barbara Pruitt

Okay. So, it was with a biopsy. And that was, I'm sure, a definite diagnosis then. And did you end up seeing a rheumatologist for your continuation of care or, or what happened after that?

Beth Siegelbaum

Yeah, not right away. So, kind of funny enough, uh, we just decided to not do anything about it. And my doctor said, we'll treat it with cautious neglect.

Barbara Pruitt

That's an interesting term.

Beth Siegelbaum

So, that's what we did for a couple of years. And then I continued to get more of these lumps and they weren't just in my arms, they were in my buttocks and um eventually my face um and we still were doing nothing. And then I went on a vacation to the tropics and it was recommended to me that I take some anti-malarial medication, which I did. and oh, my goodness, all these lumps started going away. And I didn't make the connection right away. I thought maybe it was the sun, even though I was told to stay out of the sun. But then I did a little reading and found out that anti-malarials were being used to treat certain symptoms of lupus. So that's when I ended up going to a rheumatologist and, um, I got switched to a different anti-malarial, which is a plapunil hydroxychloroquine sulfate. And that was in 1984. And I've been on it ever since.

Barbara Pruitt

Wow. And has that been successful for you?

Beth Siegelbaum

Yes.

Barbara Pruitt

So, it's been able to keep your symptoms down or do they consider you in remission? I guess not if you continue to take your medication.

Beth Siegelbaum

No, because I still have, you know, inflammation and, I do get some new like skin lesions once in a while. look most recently I've got lesions on the top of my head now, which is lovely because I know everybody can see them, but, um, um, so yeah, so I still take the medication.

Barbara Pruitt

You continue to take that. Cathy, are you on any medication for the lupus?

Cathy Aldama

I am also on hydroxychloroquine or Plaquenil and I also take my Fortick, which is mycophenolic acid, I think is what it's called. But yeah, I take both of those. I've been taking them since I was diagnosed with lupus. I tried. after about 12 years to go off the medication because I was had been doing well except you know with my ITP. And so, I thought, well, maybe I don't need to be on it. So my doctor was in agreement and said, you know why don't we try? You can go off of everything. And I was good for about a year and a half, two years. And then right at the start of the pandemic, I ended up with iritis, which is inflammation of the iris.

Barbara Pruitt

Wow. Hmm.

Cathy Aldama

One of the most painful things I have ever gone through and not being able to get in to see a doctor because everything was shut down, trying to get diagnosed over the phone was not good. And I was finally able after probably several weeks to get in to see a doctor. And that's when I got the proper diagnosis. But that was when I realized I needed, I did need medication. And so after that, I did go back on both of those medications and inflammation has been at bay since then, so I know the medication is doing something.

Barbara Pruitt

But for a year... Well, for a year and a half, though, you weren't needing to take anything.

Cathy Aldama

Yeah, everything was fine and until it wasn't.

Barbara Pruitt

Yeah. Yeah, of course. And Beth, have you gone off medication at any time or have you stayed on it continually?

Beth Siegelbaum

The lupus medication, I did go off of it at one point for about, i don't know, six months or so.

And then all the inflammatory markers increased. So, we just decided to go back on. So the, when I went off of it though, was right after I was diagnosed with the ITP because they said that any kind of quinine drug is not good for ITP, but my rheumatologist said to me, Beth, how much worse could it be? Your count is already 4,000. So, I said, good point. And I went right back on.

Barbara Pruitt

So you went back on the hydrochloroquine. Is that what it is?

Beth Siegelbaum

Yeah. Hydroxychloroquine.

Barbara Pruitt

Yeah. Hydroxychloroquine. Okay. Now, for both of you, since you have both ITP and lupus, what is your main concern? Is one more concerning than the other? Cathy?

Cathy Aldama

Well, for me, because it's always been more of the struggle with the platelet count, I've always felt like the ITP is more my concern. But as I'm getting older and more things are happening and stuff, my rheumatologist actually said to me a few months ago, he said, you know, we really never, we haven't really been addressing the lupus side because there really hasn't been anything that we needed to talk about or discuss about it. But as I'm getting older and more things are happening. He's starting to say, you know, I guess we need to really think about the lupus side too, not just the ITP side. So, there's been a, you know, we're kind of getting into a little bit more conversations about the lupus.

Barbara Pruitt

Yeah. Okay. I get it. How about you, Beth? What do you feel is the most concerning for you? Okay.

Beth Siegelbaum

Oh, definitely the ITP. For me, the lupus is kind of a non-issue. I mean, it's kind of affected my appearance and I don't like that, but it hasn't affected anything else. And i don't feel like it's endangering me in any way. So it's just sort of kind of almost in the back of my mind. I do see my rheumatologist regularly. Um, but it's basically just the let's check your blood work. Okay. Things are the same. Keep doing what you're doing. See you next time. With the ITP, it's been a lot trickier. And in the beginning, when I was first diagnosed, um there weren't some of the drugs out that are out now.

Beth Siegelbaum

And I went through all kinds of different treatments and Chinese herbs included, you know, nothing was really ideal. Prednisone worked, but, um, you know, my bones were already in bad shape, so it wasn't a long-term option. IVIG worked, but it was very inconvenient and time consuming and it worked less and less as time went on. So, when the TPO drugs came out and I tried them, they worked for me. So, I have been on them ever since. And it's still a little bit of a challenge because my counts bounce all over the place. So we're constantly increasing my dose and decreasing my dose and increasing, decreasing. So it's still a challenge, but it's, it's workable.

Barbara Pruitt

So that's your, your ITP is your main concern also.

Beth Siegelbaum

Right. Well, my main, it's mainly my concern because I feel like something serious could really happen and, you know, kind of don't want to have a stroke or a bleed out or anything.

And that's why it's more of a concern.

Barbara Pruitt

Sure. I get it. I get it. I was doing a bit of research prior to the podcast and a word that kept coming up was lupus flare. Are either of you familiar with that? Are you, Beth? And what is it that happens during a lupus flare?

Beth Siegelbaum

Well, I can't say from my personal experience because things have been very even for me, but some people have periods of time when um the inflammatory activity is higher and they feel sicker and then they have periods of time where things quiet down and everything's okay for a while. So, you know, it's kind of exacerbation remission.

Barbara Pruitt

Right, right. Have you experienced that, Cathy?

Cathy Aldama

You know, I hear and I'm very familiar with that term, but I have to say, too, that I really don't think I've had like a real flare like some people might have. I know there's times where I think, well, maybe it is a little bit of a flare because I get even more tired. I kind of get the brain fog and things like that, but in just maybe more joint pain and things like that. But it's never been anything that, you know,

Barbara Pruitt

Has been severe for you?

Cathy Aldama

Yeah, yeah. There are those times too where it's like I'm laying in bed and I think, I don't know, somebody yelled fire. Maybe I’m not going to be able to get up out of bed because I'm just so tired. But other than that, there hasn't been anything like really serious with my lupus except the iritis.

Barbara Pruitt

Okay. Okay. um I know that, you know, lupus is an inflammatory disease process. And with ITP, we can't really take anti-inflammatories. Are there any medications or treatments that your doctors have recommended if you are having a lot of, you know, discomfort? I mean, do they also talk about the anti-inflammatories as not being something that is an option?

Cathy Aldama

As far as like the NSAIDs and things like that, that they want me to stay away from those things, but like the Plaquenil, the hydroxychloroquine that is actually considered, I think, an anti-inflammatory medication. yeah, that helps keep everything at bay. And then like for me, I take that mycophenolic acid, my Fortick, which is immunosuppressant. So, it's supposed to help, help me too. But I, so, you know, I do have to be careful too about getting sick and things like that. Cause when I do get sick, even a cold, my platelet count really goes down and twice I've been hospitalized because of my platelet count being so low and I had, all I had was a cold.

Barbara Pruitt

Yeah, that happens to a lot of us. When you get a virus, your accounts can really dive, which is not good. um Now, what kind of things do you pay attention to in your day-to-day life? I mean, are there things that are on your mind that make you want to pay specific attention to something going on that would lead you to think that you're maybe running into flare or your lupus might be showing its ugly head again or something?

Cathy Aldama

Not for me. It's more just the keeping an eye on where I think my platelet count is at and just checking my body over and making sure I don't look like I've got petechia all over or bruising and things like that. But as far as the lupus, I don't really think about that and, oh, I might be flaring. And I always think it's kind of funny because the fact that being diagnosed with lupus, they consider that your primary autoimmune disease, and then the ITP, which I consider the bigger concern, is still just considered secondary. So it's just sometimes it's just like to me, it just doesn't really make sense because I feel like my ITP should be my primary thing because that's my big concern, but it doesn't work that way.

Barbara Pruitt

I have a feeling you feel the same way, Beth.

Beth Siegelbaum

Exactly the same way I could have said those exact words myself.

Barbara Pruitt

Yeah, yeah. Now, i I know that both of you have attended many PDSA conferences. Have you ever had the chance to meet anyone else at one of the conferences with lupus and ITP?

Cathy Aldama

I think I might have spoken to someone who had lupus and ITP, but I don't really remember a whole lot about the conversation. Yeah. Well, again, it's just two to 3% of people with, um, ITP develop lupus or vice versa.

Barbara Pruitt

So, it's not a large amount.

Cathy Aldama

Yeah, I think I've seen like on the PDSA, the Facebook page, there have been people, several people that I think have when I've been on, that have mentioned they have lupus and ITP.

Barbara Pruitt

Yeah. Well, this conversation might be directed specifically towards them then to learn a little bit more about it. um If you had some advice to give to people with ITP and lupus, what would that be? Beth, can you think of that?

Beth Siegelbaum

So, my only advice is to live as fully as you can. you know, if you have limitations, obviously you have to live within those, but me, I just don't let it slow me down.

Barbara Pruitt

That's great advice. Cathy, do you have any suggestions you would give?

Cathy Aldama

Yeah, that's a great way to think. I think the other thing that I have learned, having been diagnosed with both of these things, is you had just have to you have to be a big advocate for yourself. Because nobody else is going to be looking out for you the way you can. And you need to do as much research as you can to make sure you're getting... the proper care that you need. Because I wasn't always like that because when you're healthy and you're feeling good and you're younger and stuff, it's like, it's not something that you really think about. And then you realize it's like, you know, I think when I started going to the PDSA conferences is when I really learned that my doctors don't know as much information as the doctors, the medical advisors at the conference, as much as I'm learning at the conference. And so going back and talking to my doctors, they were just like, you know, so what did you learn this time and things like that. And I think that is just so important because when you hear other people's stories and stuff too, nobody's stories are the same.

And when you think, you know, some people, the first thing they did was have a splenectomy. Well, we know now it's like, that's not the first thing that you want to do. But then even for me, I was on because being diagnosed back in 2006 too, there weren't those FDA approved ITP treatments. And so I went through a lot of stuff too.

Barbara Pruitt

Yeah, yeah, exactly.

Cathy Aldama

And, you know, the only thing that would really get my numbers up and keep them up was prednisone. So having been on prednisone for 10 years or a little bit over 10 years, it was just like, you know, finding out that should never have happened. So it's just, you know, you just really have to learn everything you can, as much as you can, to help yourself.

Barbara Pruitt

Well, I think that is something that can take away a lot of the fear and anxiety when you're diagnosed with not just ITP or lupus, but anything. If you learn as much as you can, if you educate yourself about it, you will know what it is, what your red flags are, what to look out for. And if you if you're confident in knowing those parameters for your lifestyle, It helps you to lead an active lifestyle um because you know what to look for. So that's why education and like things like the conference are so important to all of us, you know, because like you said, Cathy, you go back to your doctor and tell him what you found out. I do the same thing. I'm sure Beth, you do too.

Cathy Aldama

Yeah, I think it's to being able to have that relationship and being comfortable with your doctor and knowing your doctor will listen to you also, rather than having a doctor who's going to tell you, this is what we're going to do. And they don't, you know, some doctors may not care how you feel and what your opinion is, because they're going to follow x y and z when you want to do a, b, and c So I think it's having that relationship where you know that your doctor cares enough to listen to your opinion and discuss your options too.

Barbara Pruitt

Exactly. Beth, do you have that relationship with your doctor?

Beth Siegelbaum

So, I think that's really good point. And I am now on my third hematologist. My first one was wonderful. she saw me through the beginning of everything and all those crazy things that I said I wanted to try. And she was always right there with me and, you know, said sure, why not? Let's try it. And all that. And then I got a doctor who didn't want to listen to anything I had to say. I would tell him that I came back from the PDSA conference, and he was like, oh, you know, some support group. And he didn't want to hear about it until one day he came back and said, oh, I just got back from the ASH conference. And there was this guy there. He's an MD and a PhD. And he had all this great information about ITP. It was Dr. Kuter. And I had brought him some information from Dr. Kuter to any old doctor. and now I have a third doctor. And he's like, oh, no, I never heard of PDSA. i think I need to learn about it. And oh, what did what did you learn? And I'm much happier with that attitude.

Barbara Pruitt

That's great.

Beth Siegelbaum

Yeah.

Barbara Pruitt

It's important to find a caregiver, you know, ah a physician that you can really communicate well with. And I'm happy that in medical school now, they're really enforcing shared decision-making. So, it's not, I'm going to tell you what you need to do, but we're going to discuss the options and together we'll come to a decision. So, that's a much more humane approach. And I think the, you know, this is what you have to do approach is a bit archaic, in a lot of ways.

Cathy Aldama

Yeah.

Beth Siegelbaum

Totally.

Barbara Pruitt

And it definitely doesn't help the patient feel any better. They're just getting pushed around. They're not, their voice isn't being heard. So, well, I appreciate both of your attitudes. I have to say, you seem to be very positive and, um, I think the fact that you're well-educated about your conditions that I'm sure that helps a lot with your positive approach to life. You think so?

Beth Siegelbaum

Totally.

Cathy Aldama

So, yeah, you're not always happy and positive, but for the most part, you try.

Barbara Pruitt

Right. I mean, I know myself, life is not all sunshine and rainbows.

Cathy Aldama

Yeah.

Barbara Pruitt

Sometimes we have pity parties, but I think anybody, even without ITP or lupus, that's life.

Beth Siegelbaum

Right.

Cathy Aldama

For sure.

Barbara Pruitt

That's life. But the key is to not let it drag you down on a regular basis and, you know, educate yourself and go on with your life and you do the best you can. And you look for the enjoyment. You look for the rainbows and sunshine, right?

Cathy Aldama

Yeah, definitely.

Barbara Pruitt

Right.

Beth Siegelbaum

I keep my glass half full.

Barbara Pruitt

Very good. Very good. That's a very good attitude. I agree with that 100%. So, well, anything else you all would like to share before we sign off? I know anything on your mind that you had been perusing to share with our audience?

Cathy Aldama

I did just think of something else. The fact that you know, if you do have more than one autoimmune disease and having different specialty doctors that I think too, it's really helpful if your doctors work together because like for me, my rheumatologist and my hematologist oncologist, you know, they're aware that I have these, you know, two different autoimmune diseases. And a lot of times with your medications and your treatment options, It's like my rheumatologist will look at the different options available for me and then say, well, you know what? Maybe we'll try this first because it could be beneficial for your platelet count and things like that too. So I think it is important that your doctors work together also to come up with the best treatment option to treat your one autoimmune disease, but to make sure it might have positive, you know, you might have positive benefits from this Whereas if you tried something else, maybe you won't get the same outcome because I do believe that the medication I'm taking for my lupus has helped stabilize somewhat my platelet count. Even though I'm not you know in the normal range or anything, at least it has stabilized. And I think a lot has to do with the medication for my lupus because it can be beneficial also for the ITP.

Barbara Pruitt

That's a very good point. And I'm, I'm, I agree completely. And Beth, have you had that experience with your doctors sharing information?

Beth Siegelbaum

I think only occasionally, but, or, you know, when necessary, um I did have a rheumatologist who recently retired, who thought I should be on another drug that, um, she thought could address both problems. And it sounded too strong to me. and I wasn't really keen on it and my hematologist wasn't so sure it would address both of them. So, I ended up not doing it, but they did communicate at that point, but not usually.

Barbara Pruitt

Okay. Okay. Yeah, I think it is really important that there's some communication. And I know nowadays they have portals that you can keep all your medical information in and that you can share that with other doctors. And that might be something that we look forward to more so in the future so that, you know, you know that all the different aspects of your health are being looked at by different eyes and not just their specialty. You know, it's important that they know what the left hand needs to know what the right hand is doing, right? Like what they say. But anything you want to add to the conversation, Beth?

Beth Siegelbaum

Nothing I can think of.

Barbara Pruitt

Okay. Okay. Well, again, i want to thank both of you because your time is valuable and sharing it like this is of value to our listening audience. And I really thank you both for participating. And I hope to see you at our next PDSA conference. So, thank you.

Cathy Aldama

Thank you, Barbara. And I plan to be at the conference.

Beth Siegelbaum

Thank you.

Cathy Aldama

So I'll see you there

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient, Barbara Pruitt, shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.

Barbara Pruitt

If you are living in constant fear because you have ITP, I hope you listen to what Cathy and Beth both said. Both of them express the importance of knowing as much as you can about your disease. That is so true. If you're educated about ITP, you will better understand what is safe for you and what is unsafe. You need to understand your symptoms and at what point you need to contact your hematologist. If you understand and accept the limitations you have due to your ITP, you will feel more comfortable living your life. And that knowledge will alleviate your fears. So, what's my advice? Start learning. Go to the PDSA website and learn as much as you can about ITP. Talk to your doctor if you have questions. Why not join a support group, either in person or online? Connect with other ITP patients. And consider going to the PDSA conference. There's a world of information at it, and you will connect with so many other patients just like you. You know what they say, knowledge is power.

Well, that's it for today. i hope you join me next time. And until then, wishing you lots of happy, healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP. Made possible by our presenting sponsors, Amgen and Sanofi. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare care professional before making any treatment decisions, but know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.