When to come off drugs?

Quick History.

Count was at 5 so I was put on 80mg of Preds which had a small effect after 7 days, count went from 5 to 19.

For the second week I stayed on 80mg of Pred but this had no effect, my count stayed at 19.

For the third week Hemo put me on 50mg Pred and 50mg of Eltrombopag(Promacta).

After 7 days my count is now at 78 which is great.

She now wants to stay on 50mg Preds and 50mg Eltrombopag for the next 2 weeks.

To be honest I was a little surprised by this, I would of though she might of lowered both doses but I suppose I can go on for another couple of weeks.

I am a little apprehensive as when I spoke to her about coming off both the preds and Eltrombopag she gave me a look and said these are for life.

I made her understand in no certain terms that once my count reaches over a hundred, which it has done many times before I will the coming off them to which she replied, of course if your count is that high we will look to reducing them and maybe coming off the them all together.

I have been very lucky with my ITP, very lucky. I have lived with it for over 15 years and this is the only the 2nd time I have had to have treatment.

With that in mind I find it a little bit disturbing that she was so quick to presume that I would be on meds for life. I call that jumping the gun.

She is well aware on my stance on taking meds, only if I absolutely have to. Over the last 15 years I have learned that when my body is given time and when it is safe to do so, my body does recover.

Many times my count has gone into the 20-30's with little to no symptoms and between myself and my GP's we have just kept an eye on my count and in time (over a few weeks to month) it has gone back up on its own accord.

My Hemo seems very quick to not only give me drugs but to keep me on them.

I completely understand when it is below 20, especially below 10, however when you consider for years my count usually bounces around the 50-70 mark I do find it worrying that she seems to want it very high and appears that she is content on giving me drugs to keep it at a high number, even thou it is not the norm for me.

I would maybe consider staying on a low does of preds for a period of time but not the Eltrombopag. I absolutely hate this stuff.

Ghost:

Eltrombopag is a maintenance drug, meaning that you must keep taking it to keep counts up. It stimulates platelet production and when the drug is stopped, counts can fall to single digits again fairly quickly. Most people do take it for years or until they start to experience side effects. Most people know going into it that it may be a drug that they take for an infinite period of time.

This does not mean that you will be on it for life though. People have gone into remission after a few years, or they move on to another treatment for some reason. It is not a drug that can just be stopped though once counts are up.

I understand that it is a maintenance drug, however at some point, to me anyway once your number hits and stays above a certain point then you should come off it and see what happens.

Everybody is different and everybodies ITP reacts in a different way.

For somebody like me who has only needed to be treated twice in over 15 years, who in the past on many occasions their platelets have gone gone back up on their own accord without any medication, to simply say, yup... your taking this for life without any real plan of "if you stay over this number for x period of time then we will start to lower the dose is not very good.

Every time I have had counts I have always been told that in regards to my platelets themselves that they are good, no issues at all and that the problem is that not there are not enough being produced but they are being destroyed.

My Hemo explanation of what Eltrombopag did was to massively increase the production of platelets to the point where my body could not destroy enough of them and in turn cause an increase. This can cause a reset in the system and the body stops destroying them.

Maybe she is full of it, I do not know and I hope she is isn't as I have no real choice when it comes to choosing who treats me.

Ghost:

Most people are told that they have adequate platelet production, but research in the past few years has determined that most ITP patients have production problems as well as destruction. Currently, there is no way to test for that and it is only done in a research setting. It's possible that the people who do not respond well to treatments that deal with destruction (Steroids, Rituxan), do have more problems with production.

Most of the ITP treatments are designed the way you say....you treat, counts go up, you stop treating. Promacta and N-Plate are not that way. The goal for those two drugs is to help a person to maintain counts around 50k. The dose is adjusted until that count is stabilized. Those who use Promacta or N-Plate usually cannot get counts up with other treatments and generally have low numbers. They know that they will be on it for a while. Promacta and N-Plate are not used as a temporary drug to get counts up once.

Of course you can stop taking it. That is your choice and no one can force you to stay on it. The problem is that you take a risk of ending up in single digits in a short period of time. Studies have shown that is what generally occurs. All you can do is try it and see what happens. You might get lucky.

In clinical trials, hemorrhage was the most common serious adverse reaction and most hemorrhagic reactions followed discontinuation of PROMACTA. Other serious adverse reactions included thrombotic/thromboembolic complications.

www.gsksource.com/gskprm/en/US/adirect/gskprm?cmd=ProductDetailPage&product_id=1363114461506&featureKey=null&tab=tab3&footer=yes&pTab=two

In clinical trials, platelet counts generally increased within 1 to 2 weeks after starting Promacta and decreased within 1 to 2 weeks after discontinuing Promacta.

www.gsksource.com/gskprm/en/US/adirect/gskprm?cmd=ProductDetailPage&product_id=1363114461506&featureKey=null&tab=tab4&footer=yes&pTab=two

If this is the case then I am quite upset with my hemo.

The first time I needed treatment they gave me a 5 day course of ivig with 85mg preds and I responded very well. The week after the ivig they started to reduce the preds and I was off them.

I would have to ask why after responding so well to ivig that after only 2 weeks on preds with only very light bruising as a symptom and a count of 19 she has put me on a drug which has potentially more serious side effects and something which can be dangerous to come off without exploring other treatment options.

I would gander to guess that this situation with your Hemo was a matter of miscommunication or no communication. Hemo's seem to be moving away from the older methods of treating and trending toward the newer ones, which could be the reason that she did not go for IVIG. Promacta is successful for most and she obviously forgot that you prefer not to treat long-term. It does not seem as if Prednisone did much for your counts and the addition of Promacta seemed to do the trick.

I hope you have another appointment soon. You will need to communicate your wishes. It would seem reasonable to taper off of Prednisone as quickly as possible. As for Promacta, you could speak to her about tapering off of that as well. Tapering the dose may alleviate a total platelet crash. If that does happen, tell her that you want to do IVIG like you did before and hope that this works out as you expect.

All is not lost here; it just might take a bit more time until you get to the point where you want to be. It's also possible that you might come off of Prednisone and Promacta and your counts will just bounce back on their own. Anything can happen, but I did have to tell you about the possibility of a crash since that is one of the warnings that comes along with Promacta.

I appreciate the warning regarding the possibility of crashing.

Whilst I do not prefer to be on any long term medication, if it is necessary then fair enough.

My Hemo is well aware of my reservations regarding long term medication and that I would prefer to investigate other methods first, I suspect this is why she was lets say vague regarding the finer details of going on Promacta.

I am not due to see my Hemo now for another 2 weeks. She was happy with my last count at 78 (I will admit I was as well lol)

I will be very interested to see what my count is after 2 weeks.

At the very least now my count is back to nice safe levels I can finally have my back fixed.

I have sticky thoracic vertebrae which requires some manipulation which I had to put on hold when my count dropped.

Well there ya go! Get some cavities filled and schedule surgeries or whatever while counts are up! Get yourself all fixed up NOW! :woohoo:

Yay.. On the final stage of coming of preds :laugh:

Just came back from my Hemo, 2 weeks ago my count was 139 and that was on 50mg Promacta and 50mg Preds.

Dropped to 25mg and 10mg Preds and count is 89 which I am happy with. We knew they would drop but both me and my hemo are very happy with the count.

So now the plan is to come of preds completely over the next 2 weeks and stay on 25mg of Promacta.

Went for my fortnightly check-up and my count is up to 132 which surprised both me and my hemo lol.

We both expected another small drop as I was tappering off the preds. First week was 5mg of preds and the 2nd week was 5mg every alternate day. On top of this I have been under the weather for the last week which made even more surprising.

So I will now stay on just 25mg of Promacta for another 4 weeks (with a blood test in 2 weeks to make sure my count doesn't go too high).