Promacta Luck with weaning off?

Forgive me if this has been addressed. I have been on this journey a relatively short time... July 2016 on prednisone. However, I had an issue 19 years ago that they thought was due to a med for Graves' Disease, when taken off I normalized. Again I dipped to 144 in 2004 and had bouts that did not get below 136.

Now I am at 23 and the Hematologist says it is time to get off prednisone and think about what I want to do: Chemo, infusion, Promacta, watchful waiting (which he is against), splenectomy (which I am against)

He said that if I go on Promacta I can be weened off with no issue of effects in the future from the drug. I find this hard to believe due to the fact that if you are in it long term it can kill you due to bone marrow failure.

I would appreciate any input that you have in regard to this. I am unclear if I can take this as I also have a clotting disorder, Protien S def. I will still have to discuss this with him.

Thanks so much!

Sheryl:

Hello and welcome!

You weren't specific as to what 'chemo' and 'infusion' are. Do you mean Rituxan and IVIG? Rituxan isn't really chemo, it's a biologic like Humira and Enbrel.

There is no way to know if you would have side effects due to Promacta. Most people do not, but your doctor can't guarantee that. The bone marrow reticulin that can occur with Promacta is rare though, and if caught, usually reverses once the drug is stopped. It is a relatively new drug though (within the past 10 to 15 years), so true long-term side effects are not yet known. I am not aware that it can kill you due to bone marrow failure, many people here have been using it without problems. Of course that is a rare possibility, but most of the treatments have some type of warning.

I'd be more concerned about the clotting problem, as we have been seeing that occur (more often than I'd like) in people without known clotting disorders. Have you ever actually had a clot? If so, I'd be leery of using Promacta.

As for splenectomy, there is also an increased risk of clotting after that, so I would be hesitant too if I were you. How low have your counts been and what are your symptoms?

My count now is 23. I have not had a clot but have had multiple pregnancy losses. (2 miscarriages, one shortly after birth and two inutero) I was on a baby aspirin a day until this July when my platelets began to drop. The prednisone worked well until we got down to 5mg every other day.

The Dr said chemo and I am not sure what the infusion drug is. I would need it 4x at once a week and be there for most of the day. IVIG sounds familiar.

I have many auto immune issues: Hashimotos, Graves, Graves Ophthalmology, Alopeciarearta, Fibromyalgia and have had lung nodules that were monitored and did not change. I also have some weird nodules on my legs and dark red patches that the Rheumatologist has not figured out due to me being on pred and them shrinking. They are coming back now with lower dose. I also have low vitamin D that is monitored by my endocrinologist. My health issues have been pretty random and crazy.

As for symptoms, I have no spontaneous bruising at all. I bruise easy at times but not always. I was extremely tired but my thyroid was hyper and vitamin D levels low. Those levels have normalized now. I actually feel pretty good and am working in my private practice three days a week total hours are about 30, which is pretty good for me

I am just feeling overwhelmed at the choices. I feel like I have to pick the least worst choice.

Thank you so much for replying so quickly!

I hope he didn't mean chemo. There is a chemo drug used for ITP that is generally used for refractory cases and is a last ditch effort (Cytoxan). It has very nasty side effects. If he meant Rituxan, the only reason it's linked to chemo is because it is used for lymphoma patients, but it's a biologic.

I would say that the miscarriages count as clotting events. I'm sorry you had to go through that so many times.

Choosing the least worst treatment is hard. They all have potential side effects and when you have other things going on, it's even harder.

Sandi, do you suppose that Rituxan might have a beneficial affect on Thyroid/Graves issue? Something to ask her doctor?

I don't think Rituxan is used for Graves. Graves can generally be controlled with medications. I've seen studies about it being used for Grave's eye issues, but if that isn't going on, I wouldn't mess with it for that reason.

My daughter has Graves and I would prefer she stay away from Rituxan unless there was a very god reason to consider it.