Idiopathic Thrombocytopenia and headaches?!

I was diagnosed with Thrombocytopenia in October of 2014 when I found out I was having my second child. They told me it would go away after delivery. Well I gave birth to my son in July and my Thrombocytopenia had become chronic with my platelets dropping all the way to 6,000. Anyway my question for anyone with ITP is do you have constant headaches in the front of your head almost behind your eyes? I'm currently taking predisone. Not really having much of a response, but enough that my platelets are sitting around 40K.

15 Replies

  • Not sure why they told you it would go away unless they said it was gestational thrombocytopenia. Anyway sorry to hear you are in the chronic category now. I think you will find its the prednisone causing the headaches it can create incredible feelings of pressure in your head unfortunately

  • I was diagnosed in October 2014 too also pregnant with my 4th baby. However I had been having the bruises a year before which GP never really investigated and wasn't too concerned about. My ITP is also chronic with a consistent single figure count despite numerous consistent drugs. I don't get headaches, I feel tired an awful lot. Have you considered that your headaches could be a side effect of the steroids??? I was on those too, hated them, but they didn't work for me. I have been referred to a specialist in London now as we are running out of options and my consultant wants a second opinion. Good luck, I hope your headaches resolve soon'.

  • What other things have they tried with you? My doctor keeps mentioning chemotherapy as an option, but I'm a little nervous about agreeing. I thought for sire mime would've gone away so I never did much research. Noe that I actually have to deal with all the side affects of the steroids I've started researching what else can be done. These steroids are awful!

  • I tried the steroids but they didn't work for me, just gave me horrible side effects. Since then I have had numerous bouts of iv immunoglobulins, tried revolade, had injections of romniplostim, and now on microphenalate. I have an appointment next month with leading consultant in this field for a second opinion. Not been offered any chemo drugs xx

  • I had quite some migraine from prednisolone, it has all sorts of side effects!

  • Low platelets can cause headaches, fatigue. But the prednisone can also cause that. Have they tried IVIG infusions on you or anything else to raise your platelets?

  • So far all we've done is the prednisone. I'm breast feeding my 11 week old so it has kind of put other options on the back burner. Unfortunately though with my platelets still not having much of a response my oncologist has mentioned doing chemotherapy. I'm a little devasted by the news honestly.

  • Mine dropped with my first pregnancy and I was put on prednisone for last 5 months of my pregnancy so I could deliver at a safe number. I also nursed her but wonder if that put any stress on my body and didn't let it recover.?? What about IVIG FIRST before any chemo treatment? I'm guessing Rituxin? That is what they are saying they are going to use for me next.

  • I got it when I was pregnant, was told it would go, and here I am 20 years later still waiting!

    No to the headaches, mine are due to eyestrain, but do get really tired.

  • Yes I'm constantly having headaches to where I've had to have an MRI done but every thing came back normal. But yes my headaches are sometimes in the front or like around the temples or just like all over.

  • Two thoughts, other than a direct cause from the steroids, are you sweating excessively too and if so are you sure you're drinking enough liquids to make up for it? Also, have you had your eyes tested recently as steroids can affect your sight, which often prompts headaches. Might not be applicable at all, so please feel free to ignore!

  • I do sweat profusely. Especially at nights. I do drink tons of water, but I'm also breast feeding, so I may be dehydrating and possibly not realizing that I don't have enough water intake. I'll most certainly have my vision checked. I never knew prednisone could affect my vision. I knew it could make me sweat and also gain weight.

  • I have had a lot of headaches, but these could be the prednisolone, however I am fairly sure the headaches started first...

  • See when my platelets were very low I had awful headaches, but honestly I thought it was from lose of sleep from having the new baby. I went to my doctor this morning though and found out my platelets are at 60,000!! Which is exciting for me to hear especially with just having my steroids lowered to 30mg. How long have you had ITP?

  • I have itp for 7 yrs still under going tests but I have been getting a lot of bad headaches which has been keeping me a wake it's like pressure all around my head is this normal

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