Did anyone experience severe headaches with Promacta?

[Milkycowow]

Hello, I am a nineteen year old girl who has been recently diagnosed with ITP. Just last week I started my second round of Dexamethasone and I also started taking 25 mg of Promacta. But just yesterday, I started to get severe tension headaches on the back of my neck. I called my nurse and she told me to just keep taking Tylenol. I was wondering if anyone else experienced these types of headaches when they were on Promacta. And if so, did you ever get used to the headaches or did you have to stop taking Promacta. I don't think it is related to Dexamethasone because I took Dexamethasone before and never experienced severe headaches like this.

[Sweetchix]

I had off on headaches but more mild the first 2wks. Maybe had 1 or 2 days that felt more bothersome so took Tylenol. After a while they went away. Been on Promacta (50mg/75mg)for a lil over a month now, but dont think its even working for me...

I guess if Tylenol doesnt help and continues to bother u after a few more days tell ur Dr. 25mg is a low dose compared to 50mg where most ppl start.

[Hidden]

I have been taking Promacta for 5 years now, with the dose varying depending on my platelet levels. The Promacta did seem to cause mild headaches for me - usually in the mornings once or twice a week, but now I only get them about twice a month.

[LifeafterITP]

I have been on Promacta (Eltrombopag) for 6 years. I did have the very occasional sore head day for the first few months. Since then no problems.

[Beaconshire1624 in reply to LifeafterITP]

Who much mg you are taking? Any special type of blood test you have to do when you taking this medicine?

[LifeafterITP in reply to Beaconshire1624]

I was on 50mg for 4 years but now on 25mg for last 2 years. Currently getting a platelet count blood test every 4 months. I have no side effects and Promacta (Eltrombopag) let’s me live a normal active life.

[Beaconshire1624 in reply to LifeafterITP]

Thank you so much. I feel less worry to start this drug by knowing your situation.

[stuckwithitp]

I have been taking Promacta for about 2 years now, and don't remember ever having headaches. In fact, before Promacta I used to get mild/medium headaches about every 7-10 days, but since taking Promacta they are almost non-existent (maybe one every couple months).

I started with Promacta 75mg, and it did initially raise my platelets enough to be cleared for Hernia surgery (>150). Since then, I have been on 50mg which has maintained my platelets in the 60 - 100 range.

About 4 weeks ago, I suffered severe abdomen pain and was diagnosed with an inflamed Gallbladder and needed surgery to remove. I was concerned that I would not be cleared for surgery, but the lab tests had my platelets at 250. I am not sure what caused the spike, but will see if they remain at that level or start to drop off.

Anyway, best of luck with your headaches and ITP.

[Georgiagirl61]

I have been taking Promacta for a couple years, and have not had headaches. Mostly, just some hair loss. I did wonder if it is the combination of promacta and dexamethasone possibly giving you the headaches. I was weaned off the steroids before starting promacta.

[Beaconshire1624 in reply to Georgiagirl61]

My Dr plan to put me on Promacta next few weeks. I am really worry about it. Any special diet you do? How often do you do blood test?

[Lynney11 in reply to Beaconshire1624]

I’ve been on Eltrombopag (Promacta) for 4 years. I started on 50mg but after my platelet count rocketed to over 400 I was told to take 25mg. I’ve been on this dose ever since with my count maintained at over 100 - last count was 184! I have very few side effects, slight hair loss and frequent acid reflux. The latter is a bit troublesome but I take antacids to counter that. I have my blood taken every two months and have no special diet. I just eat as healthily as possible and take regular exercise, but the same would apply even if I didn’t have ITP. I don’t let my condition get me down and I certainly don’t regard myself as having an illness - it isn’t an illness, it's a condition. I just get on with my life as usual, although I am slowing down - due to advancing age I suspect, it comes to us all! If you are wondering I am in my late 60s and was diagnosed with ITP just over 11 years ago, with treatment ongoing since 2013. I can tell you not to worry, but I know you will, just don’t regard this as an illness and remain optimistic. Good luck.

[Beaconshire1624 in reply to Lynney11]

Thank you so much for taking time to reply to me. Your wisdom and words really make me feel better and less worry to start this medicine . I am in the late 50 and I have ITP for 4 years. My first treatment is Rituximab that hold my platelets for 4 years. Now, My Dr. is going to start me 25 mg Promacta. Hopefully this medicine will keep my platelets at safe level and I can travel without worry.

[Beaconshire1624 in reply to Lynney11]

Dear Lynney11 , I just want to let you know after I start my Eltrombopag (Promacta) 25 mg for three weeks, my platelets count go up to 149. I can see my hair get thinner, other than this side effect. I feel good.

[Lynney11 in reply to Beaconshire1624]

So pleased to hear your good news! Not so good your hair getting thinner but there has to be a downside I suppose. 😀

[Miskha]

Hi, my daughter was 14 when she started taking 50mg. Unfortunately she suffered from severe headaches and optical migraines within a few days of starting on eltrombopag. Her dose was reduced to 25mg which made some improvement. After a few months it seemed slightly better but did not disappear and she continued to have migraines (which she had never had prior to using this medication). As she was in GCSE year the decision was taken to keep her on the drug as platelet counts stabilised between 60-80. She stayed on the drug for nearly a year and has now switched to weekly injections of Romiplostim which maintains similar platelet levels and has no headaches/optical migraines. Her consultant did say not all drugs suit everybody, and those that don’t do well on one often switch and do well on an alternative. It was definitely the right decision for my daughter to switch treatments. I hope your headaches settle down as Eltrombopag is a very safe and convenient way to treat your ITP but if not do monitor and discuss with your consultant as there may be something better for you. Hope things improve for you soon.

[MaryAnnITP]

It would be so helpful if platelets level was disclosed. I have had ITP for 27 years (enlarged spleen). I find mega food blood builder very helpful. I have had one gamma globulin (sic) infusion 26 Yrs ago when platelets were 10k. Pretty stable in between 40-70k for the remainder of the time. Struggling with what vaccine to get and IF I should remove my spleen. So many questions with not a lot of answers.