ITP Treatments! New Here!

Hi all!

I have been having an ongoing platelet problem since early October of this year. My lowest was 10. I went on 60mg steroids 6 weeks ago and have finally started to taper (as I hate the steroids!!) but during the course of steroids and extended period of time on 60mg, my platelets only got up to 61 once a week after starting and have since declined even on the high dose and I am now still at 12 as of today. This disease is so frustrating. My doctor was going to put me on the Rituxan as a next treatment line but due to my Multiple Sclerosis and being positive for JC virus I am not worth the risk to go on Rituxan due to me being JC virus positive which can cause PML while on Rituxan. So, now he has brought up a drug called PROMACTA.

Does anybody have experience with this drug? I have stated doing research but can't find much user experience. I am going to browse the boards here for old threads. I am going to need an IVIG soon to get a bone marrow first before starting the medication.

Has any body had any luck not treating their ITP? I also have MS (Multiple Sclerosis) and have not been able to give my self my MS medication as it is an injection every other night at home and with my low platelets they are afraid of me self injecting to avoid bleeding. I am bruised really bad also and bruise super easy right now.

I want to get back on the MS drug as fast as possible so treating this ITP is probably my best option, but I sometimes wonder if not treating it would possibly eventually resolve on its own. I have been through so much over the past 2 months that I am feeling defeated and just needing a break to feel normal again!

Thanks for any advice you all may have!

Welcome, kufan. While I have no personal experience with promacta, others on this site have expressed the opinion that Promacta is better than Rituxan as a second line treatment for ITP. It is well tolerated, highly effective, and there is a significant possibility of achieving a remission. It does increase the risk of excessive clotting, especially when platelets are raised above the suggested level of 50,000, and titrating the dosage to achieve this platelet count can be difficult.

It is unclear whether the risk of JC virus causing PML while treating with Rituxan is any greater with MS patients than with other patients. For Rituxan used for rheumatoid arthritis the risk has been estimated at 1 per 25,000.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3428054/

A recent study of 285 MS patients concluded that, "Rituximab was well tolerated and safe for the treatment of MS in our single center clinical setting. Although this is a retrospective study, rituximab was extremely effective at reducing relapses in MS with minimal clinical relapses or new MRI activity.

www.neurology.org/content/84/14_Supplement/P3.262.short

So, there may be a good rationale in favor of choosing Rituxan as it might treat both MS and ITP simultaneously.

Other drugs used to treat MS also can trigger PML, including steroids.
Here is a brief article on the risks of JC virus and various treatments for MS.

www.healthline.com/health/multiple-sclerosis/jc-virus-risks-for-ms-patients#1

What drug are you using to treat MS?

Some on this site have chosen to live with very low platelet levels without treating. Everyone has a different comfort zone, but one is generally safe as long as symptoms are not severe. What symptoms did you show when your platelets were at 10?

Kufan:

Having two health issues to juggle is difficult. There are many here with multiple problems. How are your symptoms when you are low? Have you tried any injections while counts were down? Are they subcutaneous? If so, you might be able to handle the injections with nothing more than some bruising. We get blood draws and IV's with low counts, so needles are still in the picture.

I don't blame you for wanting to avoid Rituxan if you're positive for JVC. PML is a very scary thing and I would not take the risk when there are other treatments available. Promacta is a good alternative and has helped many with few side effects. N-Plate is also a possibility and it is actually a weekly injection that patients get to raise platelets; it is given no matter how low counts are. Both of those drugs are similar in how they work. They both aid in platelet production instead of stopping destruction.

ITP does sometimes resolve on its own, but it can take time.

I have had very good luck with Promacta. I had Rituxan (no effect), horrible steriods, IVIG and now Promacta. I started at 50mg a day on May 22, 2015. I am now down to 12.5mg a day. My count hovers around 100,000 and so, as of today, the doctor said to start skipping one day a week. I have been very fortunate and had no noticeable side effects. It only took about me 4 days to go from 24,000 to 74,000. I actually went all the way up to 530,000, which was really scary! Good luck.

Thanks for all the insight guys! So much appreciated!

JCV - I was actually negative for 2 years while I was on a MS therapy that had where the PML rare side effect was involved but since I was negative I went through the treatment and loved it. But unfortunately, a year and a half into treatment I ended up testing positive for JCV and I just felt it was not worth the risk for where I was with the disease and how other treatment options could work with me. So I went back to my old therapy which is Copaxone which is a nightly injection. It works great for me but both my doctors do not want me self injecting at home with the low platelets as I have horrible bruising and the petechia (sp?) red dots and have bled very bad from 2 injections. So until we get the platelets at a reasonable I have not been able to inject.

So that leads me to wanting to get to treatment option #2 for the PML which is going to be the Promacta. Good to hear it sounds like a fairly decent drug to try. I was a bit worried. The Rituxan was our first option but once my blood doctor realized I was JCV positive, he felt it was not worth the risk to use the drug when there were other options available, so that one was crossed off.

I do have to have an IVIG before a bone marrow they want done next week since my platelets are so low and I have severe bruising. This will make the bone marrow procedure safer and not have the chance of bleeding problem. Then I can start the Promacta.

My symptoms with low platelets are not too bad, I feel fairly well. Feel worse from the steroid side effects! I do have major bruising - extremely bad on my legs and the red dots, mainly on my legs. So I am def. bruising super super super easy. Other than that, I don't have many complaints.

Thanks again for all your help! Hoping all goes well and I can get this beat in the butt and get my life back to normal!

People have gone into remission from Promacta, so there is a lot of hope there. Keep us posted on how things are going!

PS - a bone marrow biopsy isn't necessary with ITP. If they are doing it to get a baseline before starting Promacta, that's not a bad idea, but most don't bother doing it.

Sandi wrote: People have gone into remission from Promacta, so there is a lot of hope there. Keep us posted on how things are going!

PS - a bone marrow biopsy isn't necessary with ITP. If they are doing it to get a baseline before starting Promacta, that's not a bad idea, but most don't bother doing it.

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With my other medical conditions and current state and conflicting treatments together, they need a bone marrow for a baseline in my case for sure. Not looking forward to it, but it is all good. Get er done and over with!

Thanks for the support!

I have had 2 biopsy's done and both times with a count below 4. If it is of any comfort I did not find them painful and I did not experience any bleeding problems. I hope that it goes well for you.

I've had one too....they sound worse than they are. Being sore for a few days was the worst part.

I had a bone marrow biopsy. I found it a simple procedure with no after effects.

You could ask to have a sedative such as midazolam for the biopsy. I was offered one and didn't,feel a thing . You are only out for a very short time but you probably would have to stay in hospital for a couple of hours so nurses see you are ok

or have gas & air then you will be able to leave sooner.

Mine took 20 minutes in the doctor's office. I left with a band-aid on my butt. It is not a traumatic procedure. I think there is more fear just waiting for the results.

All I'm going to say is - all those who give it are different, all those who receive it are different. I didn't get a hematologist until after the BMB, she told me if she had done it I wouldn't have felt a thing.

Melinda wrote: All I'm going to say is - all those who give it are different, all those who receive it are different. I didn't get a hematologist until after the BMB, she told me if she had done it I wouldn't have felt a thing.

I think this is the crux of it.
Mine was also done in the office, at my very first appointment. When he offered to do it then and there, that's what I chose so I wouldn't have to stew in anticipation for days. It was quick and mildly uncomfortable, not painful. I felt a little soreness on the spot if I sat or lay on it wrong for the first 3 or 4 days, but it was just a mild twinge that quickly passed.

Three of his office nurses told me this MD is the fastest and most accurate they've ever witnessed do the procedure. If you have some bumbler digging around in there looking for what they need for minutes longer than necessary, that's bound to hurt.

I was 58 when I had mine. I know a woman who had one done well before menopause, when bones are harder. She didn't have such a great experience. But who's to say whether it was her hipbone or one of those bumblers to blame?