Newbie!

Hi all! I've recently been diagnosed with APS aswell as ITP as a result of annual monitoring of my Haemochromatosis which I was diagnosed with around 10 years ago. My iron count is steady between 150 and 200 so is ok (ish!) I began around March last year with symptoms very similar to IBS so was referred to Gaestro for tests, that was last July and the symptoms have become much worse and much more painful since then. I've been admitted twice for a colonoscopy and biopsies but both times the Gaestro consultant has refused to carry it out as my platelets were at 34 and 27. On the second occasion he wanted to give me a platelet infusion, they waited until a few hours before they were due to do it before being told by Haemo not to! They did put me on a weeks course of prednisolone (60mg a day) which raised my platelets to 120, however the gaestro chap told me to stop taking them and go cold turkey, I've since learnt I should have come off them gradually. Within 48 hours of stopping taking them I developed a deep sharp pain around my spleen which I still have today and that was last October around 3 months ago. I've spoken to both Haemo and Gaestro, each one says its a problem related to the other one and I cant get either to take responsibility for helping me out! In desperation I did go back to my GP who referred me for an ultrasound of my abdomen, spleen was the right size however they say they couldnt see my pancreas due to wind in my bowel in this same place as the pain! I cant see how this 'wind' can be causing me so much pain for so long, I'm taking large quantities of pain killers which are barely covering the pain and adding to the worry.

I've finally got a date for a colonoscopy and a course of 2 weeks prednisolone to take beforehand so my platelets should be high enough to go ahead but they finish the day of the procedure, I've questioned it and been told by Haemo they'll look into and get back to me...... Gaestro chap says the APS is nothing to worry about with the procedure but I'm feeling less and less inclined to trust him as each day goes by, his response when I asked him about it was that bleeding in my bowels was his concern, not clotting.

After the APS and ITP diagnosis late last year I have not been given any type of medication to take by Haemo, just an appointment for 12 months time, should I be worried that I'm only having bloods taken at such long intervals or is that the norm with platelet levels so low?

My 'gut' (sorry) feeling is that the results of the colonoscopy will show nothing the Gaestro chap acknowledges as a problem he can help with and he'll send me back packing to Haemo who seem to know little about the Haemochromatosis, APS and ITP other than the very basics.

Should I have such long gaps between Haemo appointments and does it seem right that I have no regular medication? I do suffer from bleeding gums, spontaneous bruising a few times a month and the IBS symptoms I've mentioned, I've also lost my appetite (but no weight loss!) and headaches more frequently than I ever have. Should I let the Gaestro chap go poking around when I dont trust him (does what he's saying seem right and am I just being paranoid?) I appreciate this forum is for ITP and my symptoms will overlap with APS and Haemochromatosis but I had to start somewhere!

Thanks everyone and any help or advice would be very much appreciated

Andy

10 Replies

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  • Andy,

    I am sorry to hear of your complex medical condition and unfortunately my only experience was with ITP so I am only able to comment on a number of your issues.

    With regards coming off the Prednisone, I understood that this had to be done gradually and that was how I was treated. I went from 100mg to 75, then 60, 50, 37.5, 25, 20, 15, 10, 5 and finally 2.5mg over a period of 5 months.

    With regards an operation, I was told that you need to have a platelet level of at least 50,000 before it is considered safe to do so.

    Robert

  • Hi, I was diagnosed with ITP in October 2013, my platelet level was less than 5. I had 2 more relapses in the next 8 months, my lowest count being 0. I was treated with prednisone and also IVIG infusions which didn't really help a lot. My haemo wanted to remove my spleen but we investigated further before he did it, I had a bone marrow biopsy and lymphoma cells were found (only 2%). I don't know where you live, but in Australia you can't have chemo to treat ITP unless you have had your spleen out, so by having Lymphoma I saved my spleen. I was treated in August/September of 2014 with chemo and since then have not relapsed. My platelets now sit around 120 which is wonderful compared to the 0 it was. I am so sorry you seem to be having so much trouble, I still have very regular blood tests to monitor my platelet count. If I were you I would maybe get a second opinion from another haemo, once a year tests doesn't seem right.

    I hope everything goes well for you in the future. I don't know anything about your other illnesses or how they impact on the ITP.

    Wendy

  • Hi, when I had my spleen removed my my platelet count was 20. I had 3 simultaneous platelet transfusions. I was told that with the simultaneous transfusions, your count is irrelevant because you have sufficient platelets from the transfusions so there is no risk. Within hours of the operation my count went up to 30, so I was told that my body had destroyed all the platelets that had been transfused, but it allowed the surgeon to carry out the operation. I hope that helps. Nicky

  • Wendy,

    Your comment regarding chemo is interesting as I live in Sydney and I was given 4 weekly doses of Rituximab early on in my 'second line' treatments after the prednisone and IVIG had failed (March 2014) and at that stage the idea of removing my spleen had not even been considered. After all the other 'second line' treatments also failed, my specialist thankfully gained me access to Romiplostim (NPlate) even though in Australia it is currently only reserved for patients who had had their spleen removed and still had low platelet counts. The hospital originally acquired a limited amount with the aim to get me to 50 so I could have the operation to remove my spleen but then my wonderful specialist lobbied the manufacturer and health department further and I was given a 24 week supply in the hope that over this time my immune system would eventually go back to normal which it eventually (did for whatever reason) in Nov 2014 and I have been maintaining a 200+ count without any treatment since then.

    So it may come down to the influence of your specialist or williness of the hospital to gain access to these drugs as thankfully nothing was spared in the treatment of my ITP.

    Robert

  • Thanks for your reply Robert. My specialist had to jump through quite a few hoops to get the treatment for me as I had told him I didn't want my spleen removed unless all other causes had been ruled out. I am being treated in Cairns so maybe a case of not being in a city and not having the access to a choice of specialists. I am glad to hear you have maintained a 200+ count, I can't get over 120 which is still good for me as I am mostly under 100.

    Wendy

  • So U never got Ur spleen removed and Ur immune system just went back to normal?

  • Yes thankfully that is correct. After each NPlate 'boost' up to 600, I would consistently destroy 150 platelets per week back down to 150 and then go through the same cycle again. I honestly thought that I was going to use up my remaining supply of NPlate (I had 12 doses left) and then have to have my spleen removed when suddenly my immune system just returned to normal and my platelet counts stabilised at 200+ without any treatment at all. My most recent count was done yesterday 217 so I have now been stable for 17 weeks (and keeping my fingers crossed!)

    Regards Robert

  • Hi, sorry you're having a rough time of it. I have both Itp and suspected Aps. I have no medication for the Itp but was put on low dose of asperin as my blood was getting sticky. My platelets go between 35 to 45 so are stable but I see the haemo every 3 to 4 months to check on bruising at the moment, this started when I had a fall with vertigo, before that I had 6 monthly checks so I am surprised you are not being seen more often with Aps too. Platelet infusions are good, I had one years ago to boost my platelets and they were normal for the tooth ectraction I had. Prednisolone did not work for me, they put my platelets down to zero!

    This may not be relevant but any gastric problems I have, and I did wonder if I had Ibs, seem to sort themselves out on fasting days of the 5/2 diet I've been on for the last year.

    Maybe you could ask for a second opinion from a specialist ITP doctor at a centr near you, they are listed on the ITP website. Hooe you are sorted out soon Heather

  • Hi everyone and thank you for taking the time to reply.

    Robert, my Haemo consultant has contacted me today and prescribed enough Prednisolone to reduce my dose gradually as you did, it will do down my 5mg every 4 days so I'm much happier with that than I was 24 hours ago! Fingers crossed my platelets will increase as they did last time with the steriods.

    Wendy/Nicky/Heather, I feel much happier now knowing that the procedure will be safe(r) with a higher platelet count, once thats been done I will seek a second opinion hopefully from an ITP specialist and try and push for more regular checks. Am I able to do that through my current Haemo consultant or is there another way I should do it?

    Once again many thanks for all your advice

    Andy

  • Your GP could probably recommend you for a second opinion, if you dont want to upset your haemo. Good luck

    Heather

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