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TOPIC: Choosing a treatment with fewer side effects

Choosing a treatment with fewer side effects 1 year 3 months ago #63401

  • CJ_Goes_Hiking
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My situation is this: I was first diagnosed with ITP at age 18 months. My parents brought me home from the hospital in a helmet because platelets were basically zero. I failed prednisone as a treatment and until age 6 or 7 I was treated sporadically with IVIg when counts got really low, but my hematologist mostly used a "watch and wait" method. Then I went into remission for a good 23 years.

This past February my count got down to 4 for no apparent reason and since then I've been having weekly bloodwork and IVIg infusions every 4-5 weeks. My response to IVIg is pretty darn good. Counts stay in the normal range for 2 weeks, then between 30-100 for another 2-3 weeks. I don't really have bleeding symptoms until I get below 20, and haven't had a dangerous bleeding situation yet. But, I do have a really active lifestyle and falls, cuts, and scrapes are common. I carry a trauma kit with me when I'm doing outdoor activities because I bleed from shallow wounds for 10+ hours unless I put pressure on them when my counts are low. I would just keep doing IVIg but the side effects are really hard for me to deal with. I get an intolerable headache so we're using dexamethasone for that and then I feel sick for about 5 days after each treatment. After the infusions I feel weak and shaky and have a really hard time getting any rest because the steroids make me wired. They also make me manic which I have never experienced before and it is kind of bothering me to have these mood swings and not even realize it's happening til after I have already done or said something stupid. I have increasingly severe fatigue and low Vit D (18) apart from the side effects, so I feel like crap about 50% of the time these days. The other 50% I try to make the most of. This seems like a weird response to IVIg since I've been told most people don't really experience side effects except right after the infusion. Could low dose dexamethasone really be screwing with me that much?

My hemo wants me to consider splenectomy but I'm not really keen on the idea of removing a healthy organ and I don't like the idea of having to be careful about infections for the rest of my life. I'm too young to be ripping organs out. I've been thinking about doing rituximab but I'm not sure if the side effects are worth it, and I'm also concerned that it seems like people relapse a lot. When they say relapse, how sudden is it exactly? Like could I be walking around with a count < 10 and not even know it? Or is it the sort of thing where it tapers off slowly and they know it's failing?

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Choosing a treatment with fewer side effects 1 year 3 months ago #63402

  • Sandi
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CJ:

Side effects of a treatment vary from person to person, so it would be hard to tell you which one would work best for you. Headaches after IVIG are most common in the first 48 hours and can sometimes be prevented with pre-meds at the time of infusion and lots of hydration. Dex can make a person manic, you are not alone there.

Most people do not have any side effects from Rituxan and if they do, it usually occurs during the first infusion. Patients are monitored carefully and the drip is slowed to stop any reactions. Other than that, most people have no trouble. Some do have more severe reactions (allergic or hypersensitivity) but that is rare. As for the relapse, it is usually a slow drop in counts but when a person has ITP, counts can always drop quickly to under 10k. That's just part of the disorder and knowing your symptoms is key.

I hope you are treating the low Vitamin D. Mine is chronically low and as soon as I stop taking D, it drops right back down.
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Choosing a treatment with fewer side effects 1 year 3 months ago #63403

  • mrsb04
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Well done for refusing to part with your spleen. I still have mine and it is staying put.

Have you thought about Eltrombopag aka Promacta?
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Choosing a treatment with fewer side effects 1 year 3 months ago #63404

  • Hal9000
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CJ, it is interesting that Pred didn't work for you back when you were a kid. I assume that you still don't have a useful steroid response, yes? There was a recent study which suggested childhood ITP is IgM based and not IgG based as it is in adults. Makes me wonder if your invariant steroid response is a contradiction to the study's thesis.

Anyway. Strong IVIG response, poor steroid response, sounds just like my responses - which is row 3 in my ITP table. If you try Promacta (or Nplate) you should find that you respond quite well to it. The lowest dose of Promacta, which is 12.5mg, should give you count somewhere between say, 40 and 100. With that, you will have two drugs that you respond well to, IVIG and Promacta.

Everyone with a row 3 response I've seen here on PDSA has failed to respond to Rituxan - including me.
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Choosing a treatment with fewer side effects 1 year 3 months ago #63407

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Sandi, that's good to know about the Rituxan side effects not being common. We just found out about the Vitamin D last week because I talked to my PCP about the level of tiredness and weakness I was experiencing and he said it sounded extreme for ITP. So, I started taking 1000 IU daily and we'll see if that helps. I'm starting to suspect dex is not a good choice for me for pain management and I shouldn't be on it since it doesn't do much for my platelets and seems to cause all sorts of unwanted effects for people. The IVIG works reliably it seems, if I can tolerate the headache and flu type feeling for a few days.

I haven't asked about Promacta yet. I did ask about NPlate and was told they will not let me try it until I have stopped responding to IVIG and one of the hematologists has doubts about safety vis-a-vis bone marrow fibrosis. I think maybe my insurance doesn't want to approve it. I could ask about Promacta, but I'm concerned I won't be able to take it correctly. I read something about not being able to eat dairy while you are on it because of the calcium and not being able to eat for two hours before or after.

Hal, that is correct that I still have a poor response to steroids. When I was a kid they took me off of prednisone because it wasn't working and I developed steroid psychosis. I was too young to remember it.

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Choosing a treatment with fewer side effects 1 year 3 months ago #63408

  • mrsb04
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I take Promacta at 2am then I don't need to worry about the dietary restrictions at all.
IVIg is really a rescue remedy not a long term treatment option.
What dose of Dex are you on?

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Choosing a treatment with fewer side effects 1 year 3 months ago #63412

  • Sandi
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CJ:

Low D can cause fatigue and weakness, but so can Dex withdrawal. The dose of D that you are on right now isn't high enough. Low D usually requires 50,000 IU's to 100,000 IU's a week to fix. There are scripts for that. When I was first diagnosed with low D, I had already been taking 800 IU's per day (OTC). Apparently it wasn't enough to make a difference.

I agree with Mrs.B. IVIG is a rescue treatment, not a way to manage ITP long-term. I can't believe your doctor told you that! Most people manage to work Promacta into their eating schedule. You don't have to give up dairy entirely, just for two hours before and after the pill.

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Choosing a treatment with fewer side effects 1 year 3 months ago #63415

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Two other things to consider regarding your energy levels are iron deficiency or thyroid levels. If your GP did a full physical, then presumably they checked those numbers, but you could follow up with them on that just in case. 1000 IU seems like a really small dose of Vitamin D to address a deficiency. Hmm. I guess when you recheck it you will know if you get a response to that dose of supplementation. You can also try to spend some time in the sun to help things out.

Regarding promacta, I've had really good luck with this treatment and have been on it for more than 2 years now. IVIg is not usually a long term treatment option for people because of the logistics and the fact that counts almost always come down (for you, a pretty good window after an infusion it seems!) afterwards. If you are not liking the side effects, then trying another treatment is a good idea. With promacta, I find the dietary restrictions pretty darn easy. You most definitely can have dairy products and calcium. I used to take it upon waking up at night, but now I take it before going to bed. I eat a relatively early dinner, and have usually gone at least 4 hours between when I last eat and when I take my pill. 4 hours is only necessary if you are taking certain supplements or are having a meal very rich in calcium. If your dinner doesn't have a lot of calcium, then waiting only 2 hours after eating is okay. I personally find it pretty easy to make a 4 hour window, so I do so to get the maximum absorption, but that's probably overkill. Some people like to take it when they get up in the morning and then they just have to wait 1 after taking the pill before eating. There are lots of ways to fit it in, so I can't imagine that it should be too hard for most people to manage.

On the topic of splenectomy, I was diagnosed with ITP as a kid and given a splenectomy because the only treatment options at the time were steroids, IVIg, and splenectomy. It didn't work, and here I am at age 42 still kicking around with my ITP and various treatments. If your doctor starts whipping out the scalpels and mandating that splenectomy be your next course of action, then it's definitely time to find a new doctor. Most modern specialists don't recommend splenectomy at all nowadays. NPlate and Promacta are treatments specifically for ITP and lots of people have great success with them.

Good luck deciding (and figuring out the insurance!) for your next treatment choice.

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Choosing a treatment with fewer side effects 1 year 3 months ago #63440

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Thanks for all the replies, everyone. I talked to the hemo again today and he thinks I am having serum sickness from the IVIg. We are going to try Rituxan next since my levels are back on their way down again. Hal, I'll be sure to let you know if it works or not. I asked about Promacta but got the same answer as before about it causing bone marrow scarring. They don't want me to try it unless Rituxan fails.

Bumped Vit D dose up to 2,000 IUs. My GP doesn't want to write a scrip because he "doesn't believe" that a deficiency can cause fatigue. I disagree but don't really have the energy to argue. We do have really long, dark winters here so it might be a seasonal thing. I am also on Lexapro now since I've had a relapse of depression/anxiety symptoms. Thyroid and iron look great. Pretty much everything on paper looks great except the platelets.

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Choosing a treatment with fewer side effects 1 year 3 months ago #63444

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Ask for the evidence base regarding bone marrow scarring. I’ve spent the last year searching scientific/medical papers for definitive statistics and can’t find anything conclusive .

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Choosing a treatment with fewer side effects 1 year 3 months ago #63447

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I think you're having aseptic meningitis from the IVIG, not serum sickness. He really said that?

Also, whether or not low D causes fatigue isn't really the problem. Low D levels can cause a whole other set of problems, including bone loss, heart disease and muscle weakness. Although the reference ranges say it should be above 50, it should be between 80 and 100. I can't believe he wouldn't be concerned about that. Many people with autoimmune disorders have low D and there are some studies which indicate that low D could be the cause in the first place. I hope the 2,000 IU's works for you. Try to follow up on that in a few weeks or months. I'll bet your GYN would take it more seriously.

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Choosing a treatment with fewer side effects 1 year 3 months ago #63457

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IVIG was a good rescue treatment for my ITP teen (now adult in remission for approx 9 years), but she had aseptic meningitis after her first IVIG treatment, and we had to go back to the hospital to rule out a head bleed. Through folks on this site, we learned that the side effects could be managed by a slow infusion, with really good hydration before, during, and for a few days after the treatment (which you really should do always anyway), along with benadryl and tylenol before, during, and for a day after the treatment, along with a shot of decadron (dex) right after infusion. Ramping up the hydration means lots of trips to the bathroom with the IV pole, but these things made her second and third IVIG treatments much more tolerable than the first. Hope you can get this figured out so you can stay active with lowered risk.
Norma

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Choosing a treatment with fewer side effects 1 year 2 months ago #63472

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Sandi, what you have said makes me concerned. I live in a rural area and don't have a lot of options when it comes to doctors, so it troubles me to know that what mine is saying does not make sense. If it makes any difference, his specialty is gynecologic cancer, not blood disorders, though he is a hematologist-oncologist. I looked up "serum sickness" and it seems like more of an allergic-type response, nothing at all like what I have. I don't know why he said that. Everything I've been experiencing is listed as a "moderate" side effect of IVIG on the IG Living website though. Is it common for people to need to see someone specializing in ITP or blood disorders to get good treatment? I thought when my GP referred me to a specialist I would be set.

We already do the usual stuff regarding hydration, slower infusion, benadryl/tylenol, and a shot of dex. I end up going to the bathroom 3-4 times during my infusion! It did help somewhat to do those things but I still feel wiped out afterwards for way too long.

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Choosing a treatment with fewer side effects 1 year 2 months ago #63474

  • Sandi
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CJ - The severe headache that you described is a classic symptom of aseptic meningitis from IVIG. It's a fairly common side effect. Serum sickness from IVIG may be possible, but is highly unlikely. That usually involves severe joint pain, fever, possible hives, etc. Yours is not the only doctor I've heard of who is not familiar with IVIG side effects. It kind of makes me crazy because it is so common and a doctor who uses IVIG should be aware of it. These doctors give these meds yet are so clueless about side effects! Yikes.

Unfortunately, not all Hemo's are equal. There are some that are up to date with ITP and some that are not. When I was first diagnosed, my GP suggested a Hemo and I went to him. Like yours, he did not know much about ITP and in time, admitted that. I started to do my own research and would make suggestions to him. Luckily, he was fairly agreeable when he realized that I knew what I was talking about. He was very open to the treatments that I wanted to do and we worked well together. If you think that your Hemo is not well informed, it wouldn't be a bad idea to try to find another one. The main time that it's important to have a Hemo who knows what he is doing is when your counts are not being managed properly and you don't feel like you're getting anywhere. Some people are just fine with steroid scripts here and there to manage ITP and in that case, they don't really need one who is current with information. But if you are not satisfied with the options that he is giving you, look elsewhere.

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Choosing a treatment with fewer side effects 1 year 1 month ago #63730

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Hal called it. Rituxan did not work. Was back down to 12 today so we are doing another round of IVIG. My hemo wants me to try WinRho next. I am getting a referral to a larger clinic to talk options.

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Choosing a treatment with fewer side effects 1 year 1 month ago #63733

  • Hal9000
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Hello CJ. Thought we had lost you. Since I too have a row 3 response, I have researched it more than the others.

As far as I know, your chances with WinRho are better than Rituxan. Not much better, but better. Perhaps a 5 to 10% (one in 20 to one in 10) chance it will raise counts. If one does respond, I don't think it is possible for it to put someone with a row 3 response into remission. WinRho does have some risk of adverse events. You may want to look those up.

IMHO, you would do fine (counts > 40) with 25mg of Promacta every other day.

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Choosing a treatment with fewer side effects 1 year 1 month ago #63795

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CJ --
I will offer an opinion to you. Just an opinion.

My Hemo is one of the best in New Jersey. Top awards, etc. But what he does most is listen. Listen to what I want. Listen to how I am feeling. I hate hospitals, hate other doctors, and the idea of surgery taking out a "healthy" organ was nuts.

When my last episode hit, the readings were 0 (yes ZERO) for a week. Pumped me full of IVIG, Rituxan, Steroids and I think a bottle of 1984 Pinot for a week. Instead of locking me up in a hospital pumping me full of drugs that would eventually fail, he sent me and my "large, sticky and 'how the hell are you clotting' platelets" home...after telling me that they were going to "gut me like a pig" (his words. We have a great relationship) in five days. He scheduled my surgery with a doctor who specializes in the procedure and is an ex-football player and alum, so as to put my mind at ease. That is the kind of Hemo he is.

I have hit every single drug you can think of (including being one of the first for getting Tavalisse in New Jersey) over the last seven years. and nothing would keep the wild swings at bay until I went in for surgery... and got carved up like a turkey.

It is still very early after the surgery and yes, I am at risk for bacterial infections, but my counts are now higher than before I was diagnosed. It is an option. For me it took seven years to finally run out of treatments. For me, if I didn't get nose bleeds through weak membranes in my nose (genetic. Thanks mom and dad!), ITP, for me at least is manageable. So I bruise and get spots. It doesn't affect me even at insanely low counts. I still work 12 hour days.

But the key is CHOICE. Do not let your Doctor sway you one way or the other. It is YOUR choice. LIke Sandy hinted at, your health is worth a few more gallons of gasoline if you are NOT getting the care you need. You need to look out for you.

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Choosing a treatment with fewer side effects 1 year 1 month ago #63803

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Tim, what happened when you tried Promacta and/or Nplate?

Being pumped full of steroids and IVIG and getting a zero count for a week sure sounds like a row 2a response in my ITP treatments table.

Zero... that's a rough road. Glad to hear things are better.

Thanks for the report on Tavalisse/Fostamatinib ! I have been wondering if it's row 2 or row 4 response that it works with. With your report, row 4 is it for sure.

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Choosing a treatment with fewer side effects 1 year 1 month ago #63812

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I am going to see the head of hematology at OHSU in September. I'll make a decision then about what to do.

I had IVIg again and for some reason the side effects weren't bad this time. I only felt icky for four days. This week I feel almost normal and will have a nice vacation in Idaho!

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