PROMACTA TREATMENT 14TH OCTOBER

After been in no man's land with my counts for almost 9 months (30 k - 50k) my last week drop to 14K open the heart and the wallet of my insurance company, who will pay my Promacta (Revolade) treatment.
Keep you update. I hope I will be among those 80% who have a successful long term reaction to it.

Promacta suits me. I avoid calcium whenever possible after 6pm taking dose at midnight when on nights and last thing before I go to bed if I'm not. It can take a while to be effective. Sometimes dose changes take a while to kick in.

Cheers to Promacta Mr Marx.

Most of us are told to avoid calcium 4 hours before and 2 hours after taking Promacta. (That's why I take my Promacta between 3 and 4 a.m.!)
I wasn't told, however, to avoid taking iron pills before and after Promacta. When my hematologist told me to take iron pills because my iron levels are low, he didn't give me any timing instructions. When I talked with the special pharmacy that sends me my Promacta, however, the pharmacist told me that iron would definitely interfere with Promacta. AND calcium interferes with absorption of iron. So it is tricky indeed to find a time to take my iron pill.

Don't you get patient information leaflets (PIL) in you pill boxes in the US? In the UK we do.
Eltrombopag chelates polyvalent cations (such as iron, calcium, aluminum, magnesium, selenium, and zinc) in foods, mineral supplements, and antacids.
There also some medications where caution is recommended. These are listed in the PIL.
Karen do you take calcium supplements or are you just on about calcium in your diet?
Iron is best taken first thing and washed down with orange juice as Vitamin C aids iron absorption. No calcium for 2 hours before or after are UK guidelines.
It is a hideous balancing act taking multiple medications.

Ms. B, I don't take calcium supplements, but I drink at least 2 glasses of milk a day and consume yogurt and cheese. And ice cream! MY husband is vegetarian, and I do rely on dairy probably more than most people in my food preparation.

Kaiser sticks several sheets of info about Promacta in every package I get--and the material about calcium, magnesium, and aluminum is clear. There's also a section on Eltrombopag affecting statins. Nothing about iron supplements though. I take Promacta between 3 and 4 a.m. (I don't sleep very well anyway). That way if I want milk and cookies or ice cream before I go to bed, it's okay. I always use dairy for breakfast. If I'm having a dairy-free lunch, I'll take the iron tablet with lunch; if I'm having a dairy-free dinner, I'll take the iron tablet with dinner. Sometimes I just take the iron tablet in the middle of the afternoon with fruit and bread--a couple of hours from a regular meal. You're right--it IS an incredible balancing act!

Karen
Is this the leaflet you get? www.us.promacta.com/contentassets/fb86f0d1d0e443e1bbccc8069715359b/prm-1215400-promacta-digital-adult-itp-patient-brochure-.pdf ?

Mrs. B, no, Kaiser's pages aren't nearly as easy-to-read as these. There are a lot of pages, but one has to search hard to find the material.
Thank you for sending this.

Karen
Interesting..over here in the UK it is called Revolade, still made by Novartis so why it has different names in different countries is beyond me. We get ours in sealed boxes with the manufacturers leaflet inside.

I think it has to do with needing unique patents in each country. Not sure.

My third pill last night. Everything ok but one important side effect is that I cant get a good sleep. I am taking it at 1 am, maybe I should change it to morning.
Any body had insomnia with Promacta? Does it goes away with the time?
txs

Personally as a nurse who has worked shifts for over 40 years I have an appalling sleep pattern anyway so haven't a clue if it has affected me. About to retire and start going to bed at a regular time. Be interesting to see what happens .
Groucho are you going to bed at 1am or waking up to take it then?
Sleep disturbance is classed as a common side effect.

txs for the answer.
I go to bed around 10 p.m. Put the alarm at 1 a.m. yo have the pill respecting the 4 hours before and 2 hours after no deal rule. I cant get a properties sleep after.

I will try to change the schedule of the pill to the morning and see.

Groucho
I did 2am to start with to avoid any dietary restrictions. It drove me mad within less than a fortnight. There is more to life than continual sleep disturbance and it's associated problems. It had to be a dietary restriction with the least inconvenience.
Mornings are completely out for me. I do dairy most mornings. I have also have osteoporosis so need a higher than normal calcium diet. So evenings it was.
Which actually makes more sense to me. You can eat what you want, when you want until 4 hours before you go to bed. I think most people have their evening meal 3-4 hours before going to bed. So long as you ingest <50mg calcium in the 4 hours preceding bedtime you should be fine.
I normally go to bed 10:30-11:30 pm and have a light snack if I need one a couple of hours before.
What made things a little difficult was working 2 consecutive nights each week. Usually Sun/Mon or Mon/Tue. I took tablet at midnight but the dietary restrictions were a pain and my compliance is not 100%.
It will be interesting to see if anything happens to my count when I establish a more stable regime of eating and taking Eltrombopag.

Txs MRSb.
I will try to have my last meal/snack at 19h and have my pill at 11. Just to not disturb my sleep.
I am still just 6 days from a partial DeX pulse. So it might also affect the whole. The happiest periods of my ITP were when I wasn't treated at all lol.

Let's see Promacta how it works. If my life turns to be normal, then it will worth.

I dream of no treatment but the only other thing that has consistently kept my count to a symptomatic free level i.e. above 20 is Prednisolone at 20mg/day. I'm not going there again. I don't mind a quick boost as a rescue remedy once in a while but that is as far as it goes.

My 4th day of Promacta/Revolade but my count went down to 19K. According to the doctor effects can be appreciated between 1 to 2 weeks. Next blood test on Thursday.
2 days of DeX pulse prescribed before flying on Saturday. I hope it will be my last DeX pulse for some years.
At 4th day liver and kidney analysis are normal. We will know more on 28th when more blood test will be on the menu.

What dose of Eltrombopag are you taken Groucho?

50mg I am 77/78 kg. Hope soon will be 75.

Personal experience suggests that it is worth persevering with 50mg/night for at least 2 months before contemplating a dose change

Mrsb04,
Well, the doctor convinced my insurance and I am at his will on the treatment. I just need a stable 75 - 100k to get out of the rollercoaster and carry on with a normal life. With no side effects on liver, kidney, bones or clot. I believe 80% success with promacta makes the odd to be on my favour. Lets see and merde as the French says.

3 years 10 months after being at 1 I am now stable at about 120 on 25 mg daily of eltrombopag. I started out at 75 mg daily and it has taken this long, almost 4 years of gradual dose reductions , to get to this happy situation. I eat at before 7 pm and take my pill at 11pm. If I do eat later I just take it during the night. Resist the temptation to make sudden dosage changes, go slowly, dropping 25 mg per week every 2 months or so if your counts rise above 150. I usually had a blood test every 8 weeks and adjusted only when I hit over 150.it took about 1 year to go from 1 to about 100. My highest count in the last 4 years has been 165. I don't think eltrombopag likes sudden dose changes, For me, the effect seems to depend on a cumulative buildup. I think trying to stay around 50 is too risky and involves too many sudden dose changes. You never know when you will need these platelets; I had to have 2 major operations last year!

Thank you Margaret for the information. Well noted and considered. Hope at least it starts working with me without colateral damage. The dose once I found out it works will be my next concern in the agenda. 11 days after I took the first pill I will have a test. Important one. I hope I have a bit of increase to keep the hope. However for some people it took 3 or 4 weeks to go up in the count. Will all keep u update.

GrouchoMarx wrote: ... Hope at least it starts working with me without colateral damage...

Likely, Groucho. On the flip side, a Dex pulse while taking Promacta might get counts higher than one may want.

10 days since I started promacta and my platelets are 35K.
I had only one dex pill of 40mg one week ago, so I assume that my counts are not boosted by corticoids.
Is it just 10 days treatment with Promacta too little time to get a conclusion yet?
Is it also true that without medication I have been as low as 14000 and 19000 in the past weeks. It might just be the begining of a climb...
Next week I will know more.

Groucho, it takes a minimum of two weeks for a Promacta dose change to be fully realized. If one's immune system changes along the way, then obviously it will take longer. A change is surprisingly common (in row 1 and 2, but not common in row 3 and 4). It's like, if the immune system starts consuming a large number of normal (virus free) platelets, it starts to realize it shouldn't be quite so destructive.

At the other end. Missing a couple of doses can reignite the immune system's destructive fire. For this reason, skipping a single dose can have dramatic undesirable results on some occasions and for some folks.

Txs Hal for the Info,
What row 1, 2 , 3 and 4 means?

Groucho
'Rows' is a theory of Hal's. It doesn't apply to me as I don't fit into any of his categories, so I don't worry about it.
Give the Promacta time it can be slow to get going. I would suggest staying on current dose at least 4 weeks.

Bad news. 17K after 2 weeks of Promacta 50mg. I see the doctor in a minute. My guess is that he will increase the dose to 75mg.

Since I just left a couple of weeks of bad cold the doctor think that a viral proces might have put my platelets down. He believe I need to maintain the 50mg. Thursday new blood test....