Feeling confused and overwhelmed......or should I say 'sorry for my self'

So I was diagnosed with ITP in May this year as part of a blood test in another hospital dept. My count was 13 and I was sent to haematology immediately and started on Predisnolene. My count responded well and so the tapering began. to cut a long story short, twice I've been round the loop but when I get to 15/10 mg per day my count crashes so it's now time to look at other options. I've been booked in with nuclear medicine to look at the behaviour of my platelets - presumably to see whether a splenectomy could be an option for me. I haven't had a bone marrow aspiration so it's not clear if I'm producing enough platelets or whether anything else is mimicking ITP or whether there is another nasty lurking which I don't know about. The doctor has chosen my second drug - Mycophenelate and said that if this doesn't work there are others, such as chemotherapy drugs. I've looked up the options on the PDSA site and checked out the data sheets that come with the various options. To be honest, the possible side effects scare me witless, some may seem like pure vanity reasons, but I don't want to lose my hair, or get male characteristics, or not be able to run anymore.

Can I ask you at what stage you were encouraged to have a bone marrow scan or if you ever were? Can I also ask any of you who have had the mycophenelate what your experiences of it were and whether this is a forever drug or just aimed at a reset? It wasn't explained to me at the hospital and as always, you only think of these things after you leave.

14 Replies

  • I was also diagnosed in May, my count was 3.

    Prednisolone 100mg, didn't work.

    Rituximab didn't work, (this is a chemo type drug).

    They gave me an IVIG, this works for a short while... just long enough that they can perform a bone marrow test. (They don't want you to bleed to much!)

    I had mine in July I think, it was all clear. It isn't that awful, first an injection to numb you and they then stick a big needle in you hip (from behind as you lay down) and pull out a small piece of your marrow.

    The thought of it was much worse than the actual procedure, uncomfortable more than painful.

    I have not had mycophenelate.

    I am on Revolade right now, it has worked so far but my count is dropping off every week, just to wait and see if it holds up at an acceptable level much longer.

    Oh yeah, I haven't had any side effects from Rituxumab, IVIG or even Revolade so far.

    Prednisolone however is awful at high doses :(

    Hope this helps!

  • Thanks for replying, so far I've been pretty lucky with the pred, I started on 80mg, which was high for my weight, and I was lucky to feel high, banishing my anxiety and depressive feelings I'd always had. Then came the sweats, the skin thinning, and with a decrease in dosage, the high feeling went. The antacids I take sorted my stomach problems. I have a feeling of being forgetful, less sharp. It's messed with my hormones too. Now my hair is thinning - definitely more hits the bathroom floor than ever before and it's gone curly. I seriously want to be off the pred, but am feeling pretty powerless re: making the best choice for what to do next, and with no consensus in the medical profession on what that is I just want to assume the ostrich position. Good to hear that the Ritux. and Revolade have been kind to you and that the BMA was not too bad either.

  • Usually they will try Rituximab next I think, then if that doesn't work they will want to take out your spleen. I have turned that down so far and was lucky to be able to try Revolade, however I am not living in the UK, if the Revolade fails I know they will be on at me to take out the spleen again though :(

  • My count was 7 end of June, I was also on 80mgs prednisone too. Now on 30 start 20mgs on Monday, do you get lightheadedness. Doc has given me meds to help tho they not working yet. Tho my count has dropped I still need to be off steriods, hes going to look at something else if count drops again on the 5th, fingers crossed. Im having a bone density scan at some point!!!

  • I had light-headedness for a period, like my brain was a bit loose in my head, but this went of its own accord after a week or so. Some of my symptoms have waxed and waned. It's the ones that stick around or worsen that are more worrying, and of course the ones we can't see yet.

  • I have tried, IVIG, predisiolone, dexamethazone, Rituximab, splenectomy (which has meant daily dose of penicillin for life), romiplostim and am now on mycophenolate. I have no side effects from mycophenolate and expect to be on it for life.

  • I had the bone marrow aspiration to make the diagnosis of ITP over 15 years ago, certainly did not have any preparation, she just wiped my chest with an anaesthetic and stuck the needle in, it was peculiar and ached after but you get over it. I only have medication if I need an operation but in the past I had IVIG for the op, predisolone didn't work at all, rituximab was slow. My count ranges about 30-50 so no intervention is required I am pleased to say.

  • Hi there, I have had anti-D treatment twice - 12 weeks apart when they fall much below 20. Had lower dose second time and it got them up to 82....dont know how long it will last. First time on higher dose they went yp to 242 and it lasted about 10 weeks.....gradually falling. First time onn hihger dose i got fever the night after but soon recovered. Second time on lower dose no fever, no reduction in heamoglobin. Not a bad option (if veins dont collapse when trying to put needle in, which they did second time - tip for next time immerse arm in bucket warm water and hydrate)

    best of luckio!!!!

  • Hi

    I was diagnosed with itp in 2011 and have a similar story to yours. My count responds well to steroids but falls when I stop taking them. I also had the same side effects as you describe and have had problems with depression and anxiety for many years. I took mycophenolate for a while and coped ok with them. It upset my stomach a bit and my skin became sensitive to sunlight giving me a very itchy rash. But by wearing sunblock and covering up it wasn't too bad. I came off them because I injured my back and the stomach problems became worse when mixed with the pain meds.

    When I was first diagnosed I was sent for the indium scan to see if I was suitable for having a splenectomy. This showed that my liver was involved in destroying my platelets so luckily I avoided an operation that wouldn't have worked for me. It has never been suggested that I have a bone marrow test. My consultants view is that if the rest of your blood is ok and you respond to steroids it's itp.

    You haven't mentioned if you have problems with bleeding. The best advice I received on this forum was from sailor who has had itp for many years. He said do not worry too much about the count but keep an eye out for signs of bleeding. I am lucky because, like him, I do not really actively bleed. When my count is around 30 I get a couple of bruises and a bit of tiredness but when it drops below 10, I get huge bruises and can see blood blisters in my mouth. That's when I contact the hospital and go back on the steroids. I try to avoid this if I can and my consultant trusts me to make this judgement, but is happier if my count is around 30. We have talked about trying n-plate (romiplostin) next but I am wary and would rather do that when we really need to.

    The itp support website is really good for information and if you can find a hospital that specialises in itp (im lucky to live in a city that does) that will help you a lot. I have managed to not let it affect my life too much and just try to stay positive when I'm on the dreaded steroids. I hope that the mycophenolate works for you and wish you lots of luck.

    regards Janet

  • Hi Janet, before my problem was picked up in the neurology dept (who transferred me to haem.), I had very large bruises, the red spots all over my feet (which I'd thought were caused by my socks!), and exceptionally heavy periods. The latter they keep saying was probably due to IPT except that I'd had them since 2009, with bouts of anaemia along the way and was anaemic when diagnosed. I wonder whether this was the cause rather than the effect of IPT. But then I also have various other things that might, in mind at least, have led to the current situation. The steroids have at least stopped my periods and as I'm 54' this isn't a problem (my sister was 56 when she hit the menopause so this isn't unusual for us). I've also had blood blisters but this has been whilst on the pred and my count has been okay.

  • Its a strange condition this itp. It seems that no two people have exactly the same symptoms or respond in the same way to the meds they give us. I think I probably had it for at least 18months before I was diagnosed. I just mentioned in passing to my gp that I was bruising easily and she gave me a blood test never expecting it to show anything. I had been getting heavier periods too but I put that down to the menopause (I'm 53 so it seemed plausible). I could drive myself crazy worrying about it but I have good consultants who listen to me and I just try and take the minimum treatment to keep me safe. I really hope you are able to get the same support. Definitely get the scan done before you let them remove your spleen though would be my advice. I'm back to hospital on Wednesday have been off the steroids for 6months and I know the count has dropped but fingers crossed for 30 or above. Fingers crossed for you too and let us know how you get on.

    Regards Janet

  • Hi, I was diagnosed with Itp last October with a count of 9. I didn't respond to Prednisone and it was quite soon after that they carried out a bone marrow biopsy, which came back as normal. I have tried various drugs since, none of which have worked for me. I am currently on a four week course of mycophenolate, and my platelet count is generally running between 1-4, so I guess this isn't the cure for me either. The side effects of this drug haven't been horrendous for me, however I have been left feeling very run down and picking up every cold / virus going and I as tired as I feel I am struggling to sleep. I would say that my quality of life has been affected by this and and I am almost glad this drug hasn't worked as I wouldn't want to be on it long term. I don't know what's next, I see my consultant on wed. Good luck xx

  • Dear QT,

    Feeling overwhelmed is probably the sanest response to ITP; you're not alone. I had all the symptoms you're having on Prednisone and more (it was hell), and the next time my platelets dropped, I had four infusions of Rituximab/Rituxan. That was two and half years ago and my platelets have been over 150k since. My haematologist keeps telling me that he will eventually have to give me another a round at some point and probably repeatedly for the rest of my life, but for now all is well. The Rituxan did leave me feeling fatigued, though. I have now been diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalopathy (the name keeps changing), but apparently no one can say how much of that might be brought on by the medication, how much by stress (!), how much by my wonky immune system, and how much by the mysterious forces of nature.

    I had a bone marrow biopsy (hip) before getting any treatment to rule out the possibility of leukemia. I have no idea how necessary it is to have one; it seems to be standard procedure around here (the U.S.).

    Good luck and let us know how you get on.


  • I had platelet count hovering between 10-20 for years with a minimum 15mg pred. and 100mg aza. I found the aza was helpful to ofset some of the pred side effects. I bruised very easily.

    I found bone marrow test no big deal. It answers the question of adequate platelet production, when you need to know that. Until then no point for that procedure.

    When I finally dropped around 10k count and less I knew I was not responding well enough to preds. Then came the bone marrow test, which showed good production. Rhituzimab did not work, nor eltrombopag. I have had stroke before due to bleeding in the brain, and I weren't going there again. That's when the spleenectomy odds started to look good. And by the way the 1/3 fail rate does not mean total fail. Mine was a success. I have no probs with taking penecillin every day, though I do watch out for my digestion, and I take kafir as my pro biotic.

    Good luck in your efforts.

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