Curious_Patient with ITP

I was discovered to have ITP last Nov. 2015 when upon visit to my Hematologist, my platelet was only 2500. Then and there, numerous medications/operation were given to me (ie I underwent BMA (bone marrow assessment and the doctors said "my bone marrow is fine and healthy". After discharged from hospital (after two months stay), my platelet went up to 101K then went down again to 64K then 47K to 34K (in three weeks). My doctor decided to stop my taking of Warfarin and instead, I was given Rituximab (once-a week for four weeks). After my first taking of Rituximab, my platelet went up from 34K to 50K. He advised me again to continue taking Eltrombopag (75mg) and Warfarin (3mg) everyday as well as once-a-week (for a month) Rituximab. My concern is that after injecting Rituximab into my body, I feel much of muscle pain (as if my muscles/bones are being ripped). I told to the doctor about it but he ordered me to continue the Rituximab. Anybody who feels the same (body/muscle pain) after injecting Rituximab into your body?

40 Replies

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  • I've only had Rituxan IV infusions, not injections. I had the 4 weekly treaments last October. I have joint pain, sore muscles.

  • Rituximab was given to me via infusion (every Sunday for a month. I will be having my third session this coming Sunday - 13 March 2016. Hoping lesser muscle pain.

  • Can I ask why you are taking warfrin ( a blood thinner) And yes I did get lots of bone pain with rituximab.This medication can take up to 12 weeks to fully take affect. I am not sure why you are being triple treated in such a way. Do you have severe bleeding episodes with low counts?

  • Doctor's explanation is for me to avoid blood clot. When my platelet went down last three weeks ago (from 64K then 47K to 34K - I was advised by the doctor to stop Warfarin (3mg) - thinking that this may affect the Eltrombopag - increased from 50mg to 75mg). My INR is 2.3 then (blood thinness). When my platelet increased from 34K to 50K (last Sunday), he advised me again to take Warfarin (3mg) - telling me that per blood examination - my blood becomes thicker and may result to blood clot.

    Please note that when I was admitted in the hospital, my platelet count is only 2500; I have big hematoma in my legs and body; as well as red-like "dots" appearing in my body. No severe bleeding but with low counts.

  • If your counts had gone to over 500,000 after treatment I could understand them giving you warfarin and have heard it before especially in those with APS as well as ITP.The aim of that treatment is to hopefully maintain you at 50,000. They do have to monitor it closely because it is a platelet stimulant. I am still confused as to why you are being treated with 3 such drugs and not perhaps ivig to maintain you whilst the rituxin kicks in especially with numbers such as yours.

    May I ask which country you are being treated in.

    Every heamo team is different and this may well be your countries protocol we can only go on our own experiences.

  • Yes, you are right. 3 strong drugs in one body. I am based in Doha, Qatar.

  • Warfarin is given to people to thin the blood - does your doctor know what they are doing? I wouldn't touch aspirin, let alone warfarin.

  • I presumed YES - they know what they are doing. Per readings, I was informed that Eltrombopag is helping platelet to go up while Warfarin (ie aspirin) is contradicting the activities of Eltrombopag. Also, I was informed that Rituximab is AGAINST Warfarin. Hence, if you will analyze my medications - I have two STRONG medicines (Eltrombopag and Rituximab) helping platelet to go up but one STRONG medicine (Warfarin) against the two.

  • Aspirin is contra indicated for ITP. A 'normal' count is between 150k and 450k. I don't think at 50k you are likely to have a blood clot. My count has been under 80k for almost 21 years, and nobody has ever suggested warfarin to me. Even when there was a scare with clotting and the pill, my doc commented that it would be nice to see my blood able to clot.

  • I agree with you and even my doctors says the same. I am now wondering why they are giving me Eltrombopag (75mg every day) and Rituximab (IV once a week for a month - my third this coming Sunday) and at the same time, Warfarin.

  • My count has never been under 15k in all that time either, and I don't have any medication for ITP, as I don't bruise overly much, and don't have severe bleeding episodes. I do have the dots on my legs, and when they start heading towards my knees from my ankles, I go and have a blood test.

  • I am from the UK and have been put on aspirin whilst my count was between 30 and 50 plus, this is because of asp count in my blood putting me at risk of a stroke. It is possible to have thin blood but also sticky. It was stopped when my count went down to 20 but now I am over 50 my haemo said I can go back on if I want but I am happy not to take aspirin unless I have to.

  • I have been treated both in the UK and now in Belgium, and teeth are always sucked at any mention of aspirin. Everything else is fine with my bloods, it is just the platelets for me.

  • Yes you can still have a blood clot with low counts. It's all in how your blood clots together. And one of the drugs (Promacta where I am) can do that.

  • Hi,

    You mentioned your platelet counts are under 80k. Does your doctor keep you in the hospital because it's under 150k? I have TTP and recently my #'s dropped from 180 to 190 to 111 to 64 and even after my plasma treatment it went down to 43k. They may give me Rituxan but they haven't 100% decided.

    Has anyone tried a papaya or other holistic remedies to increase their count?

  • I have never been admitted to hospital for my ITP. I go for bloods every 3 months or so. I live in Belgium, where they aren't interested unless my platelets are 10k or less and/or I am bleeding all over A&E. It's the same in the UK (and I was seen at an ITP centre of excellence hospital), where the consensus was that even though my platelets were hovering around the 40k mark, there was no need for medication until or unless they got a lot lower.

    I was diagnosed coming up 21 years ago when I was pregnant, and my platelets have decreased steadily over the years from between 60-80k at diagnosis and for about 14 years, to now running between 30-45k.

    The less than 150k limit went a long time ago. The US medics (or the military ones that did my platelet counts for 7 years) got spooked at about 50k or less; the UK military docs worried at about 30k or less, and the Belgian haematologists have since 2006 when I moved here originally, taken the stance already stated above.

  • Hi Alex,

    I have diagnosed ITP too 15 days back.

    My plated dropping heavily. It was 1.95 lacs on 25 Feb 2016 and dropped by 100000 Lac on 5 Mar 2016.

    Do we need to take medicine life long n regular basi and how is side effect of the medicine.

    If you have any valuable information please share.

    Thanks

  • Per several articles I read, majority of patients with ITP are taking medicines in a long time basis ie from short of 1 month to more than several years. Recently, I read an article - he has ITP for more than 20 years. Like any other drugs, one of the side effects of it is the damage to one's IDNEY. From my personal experience, since I am also new in this ITP - I see to it that I am drinking a lot of water - ie 8-10 glasses of water a day - so that it will help my body to flush any toxin by urinating. I am still in positive that I will be OUT of this soonest time.

  • I was diagnosed with platelet level of 2 in Dec 2014. I had no response to three weeks on high dose steroids, so two immunoglobulin transfusions which got me safe. Then platelets continued to rise into the hundreds and so the long haul of reducing steroids started. I came completely off medication and hoped there would be no recurrence. Unfortunately I had a sudden relapse to 3 in September. High dose steroids again, immunoglobulin again, still on low dose steroids, but the intention is to come off again. Have been told that, because of relapse, it is likely, but not inevitable, that I will have a relapse. But it is not known if this is likely to be in weeks months or years. As I lose 5 months of sanity on high dose steroids I am not impressed! I guess the short version, from my short experience, is that we are all different and it is not inevitable that you will need to remain on medication. Good luck.

  • Agree with previous comments - maybe worth considering the second opinion? Warfarin is not allowed for ITP patients. Also, it's very unusual to have both eltrombopac and rituximab. These are separate lines of treatment

  • If Warfarin is not allowed for ITP patients, how come they gave the same to me? It was told that this may avoid blood clot as blood becomes thinner than usual. My INR is now 2.3 (meaning 2.3 thinner than regular person)

    Also, you commented that "it's very unusual to have both eltrombopac and rituximab". Very unusual means not usual/irregular. Meaning - not correct to have both of them at a time?

  • Yes, what I meant is that treatment seems to be structured incorrectly. Two lines of treatment they gave you work separately from each other, so I don't understand why there are given together - it's unnecessary and would not be possible to understand which one has worked. Warfarin is particularly odd. I'd strongly advise to get a second opinion

  • lC12345 - Doha, Qatar has limited doctors for ITP. Even if you go to any private clinic, all medical records will be forwarded to their "Supreme Council" and from thereon, there is no alternative but to go to the public/government hospital. Second opinion can only be done to my own country (I am an expat) but as of the moment, I was advised not to travel considering the gravity of my sickness. I was advised to have at least 100K platelet (now only 50K) to travel. In short, even if I want to go home for a second opinion, my hand is tied now.

  • Be assured that you can live a very normal life with very low counts if you are not prone to heavy bleeding. Your doctor sounds overly cautious.I have gone many weeks wit counts under 10,000 and no issues others go even lower. My son who also has itp was at 2000 for over two weeks.All you can do is be informed about your treatment options and know that you can questions your doctor decision or treatment plan.For somebody so newly diagnosed you are being heavily treated .( in my opinion) I wish you luck and hope that rituxin does the trick and that you can be taken off the other meds. Do be careful with the warfrin use but follow our doctors directions..

  • Hi,

    When your counts are under 150k. Does your doctor require you to stay in the hospital?

  • Goodness no..we went by symptoms and not by numbers. Sometimes when I was under 10,000 I could have bleeding other times not.It was my call. If I was under 5000 I was often having treatment and would be in hospital.

  • In my opinion, NO. But of course, your doctor is the best person to say whether to stay or not. Hoping for the best that you will be out of the hospital.

  • Yes, I hope my numbers do improve. I have TTP which is similar but different than ITP. My doctors are looking into giving me Rituxan but hopefully my #'s increase on their own.

    Thanks

  • Thank you .. :)

  • I flew to Oman and back last year from Belgium with a count of about 35k. I was fine and had a great holiday.

  • You can STILL have blood clots with low counts. Research it. Especially if you are taking Promacta. And if he already has blood that clots faster than normal it is a possibility. True that aspirin and such is a blood thinner and we are not supposed to take it but he has other factors that are going on in his body. This is a very individual disease.

  • You are so right Anna. I have had ITp over 15 years and have not needed meds at all unless I have minor ops for teeth extraction. A blood test showed I was at risk of a stroke after suspected TIA so aspirin was given for a year with more frequent monitoring, I noticed no adverse result. Therefore Alex should listen to his doctor but always ask questions.

  • As I mentioned as have other since perhaps APS is involved as well hence the asprin needed.I knowsosmebody who has just given birth and through her pregnancy had to have blood thinnners with ITP due to en.wikipedia.org/wiki/Antip... which can often come alongside ITP. As Anna said its a very individual disease and every doctor and country handle things differently. Do discuss your pain with them if it continues and fingers crossed your rituxin kicks in soon

  • Hi, i was diagnosed with ITP in August 2015 had a count of 4000. Had platelets and 18 bottles of IV immunoglobulin and 70mg of Prednisolone for 10 weeks count went upto 178 000. Within 2 weeks was back to 10 000. Had rituximab infusions over 4 weeks and felt awful platelets only went up to 17. So had more immunoglobulin and Dr has now put me on eltrombopag 50mg but platelets not rising they are dropping again so he has put me on 75mg eltrombopag which make me feel very ill. How has anyone else fared on these ?

  • @Cannock-Marc - I have a similar case with you. When hospitalized, my platelet went up/down to the worries of my doctors. In some cases, it goes up to 243K to 150K a day after to 80K a day after to 37K. I was given a higher dosage of eltrombopag (from 50mg to 75mg) to no avail. Thereafter, I was given Rituximab for a month (4 sessions in a month). In my second session, the feel of muscle/body pain is so great. But thereafter, the effect reduces and my platelet goes up (from 37K to 50K to 87K now).

    My point is - keep what the doctors tell you to do but keep asking questions/read articles about the medicines they are giving you.

    If in doubt, ask questions again. God bless.

  • Hi Alex_MC thanks for the reply and kind words

  • Latest health bulletin -

    1. After 3 weekends of IV - Retuximab - platelet increased from 50K to 87K.

    2. Warfarin increased in dosage - from 3mg to 4mg being my INR decreased from 2.3 to 1.7 (Docs says I am safe between 2-4) for a week. Hopefully, it will be in a safe mode next week.

    3. Stop Eltrombopag (last dosage - 60mg) being my platelet in uptrend.

    God bless you all :)

  • I currently take Rotuxin and the only muscle pain I have are in my knees. They say it's important to stay active to build your muscles. 

  • I agree but do not be stressed also (in walking).  Do not push yourself into the limit.  :)

  • Ok thank you!

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