Back Again!

Well after 6 months of remission, my blood has dropped.

Third major drop now, started with bleeding and bruises. Confirmed I have relapsed, I have been put on anti bleeding tablets, and am holding off steroids as last time on them, although my platlets shot up, I didn't like being on them. I am on close observation with instructions to go straight back if further symptoms.

My Doctors put two options in front of me, steroids or removal of spleen which they are saying I should consider. I read the forums and there appears to be all sorts of alternative treatments but I am never offered them. Does anyone have any idea why I seem to be offered these two options only? I really don't want my spleen out and I don't want prednisone. I read a website on nplate, but i am not sure it's available in the UK dependant on your area. It's probably cost.

Any ideas of other drugs I could request as alternatives or I guess you might say it's patient specific as we all respond to different things, what works for one doesn't on another?

Which hospital do you attend? There are various ITP centres in the UK and you can ask to be referred to one of those if you like. You should get far more options there. Take a look at the list..

itpsupport.org.uk/itpforum/centres.htm

Thanks Ann, I think you may have mentioned this to me before.

I am in the Midlands, so I need to transfer to the Queen Elizabeth Hospital, Birmingham.

I also remember talk of Dr Provan, in London. Is it practical to see someone so far away, as when there is a flare up, you want to get somewhere quick?

Although he seems to be one of the most specialist we have in the UK.

I know there is a current discussion on the boards regarding prednisone, I had terrible side effects on that drug, and I think I am more concerned about being on that, than unwanted bleeds. Although it worked. I just don't fancy the spleen removed either!

I will get across to the QE and see what they say. Thanks again.

I think it's worth it to see Drew Provan if you can. His advice can be invaluable. It's possible that he could coordinate with your local doctor and get a plan in place that works for you.

John, what are anti-bleeding tablets?

I'm guessing the anti-bleeding tablets is tranexamic acid. If you have blood blisters in the mouth the liquid version is great. Swish and swallow then helps, and it tastes nice!

Doctor at the QE is Will Lester, much respected. Get a referral to him and you'll be fine.

Karen - Ann is right my "anti bleeding" tablets are tranexamic acid.

Although I thought, I was low on counts, feeling fatigued, and had a few nose bleeds, etc. I foolishly did some squats with weights, the tears in my muscles made me bleed out to large bruises across my legs identical on each side of my legs. That coincided with my appointment at the doctors who confirmed the relapse and put me on the tablets to stem the bleeds.

Note to self - don't do strenuous excercise if feel too fatigued. I think ironically, when I feel as though I am fatigued I try to deliberately excercise to shake it off. Maybe I will listen to my body a bit better next time.

Ann - next check up at my hospital, I will ask them to send me to the QE. Thanks.

John - your thoughts are right, but just try simple walking next time until you know for sure!

Thanks Sandi, that made me laugh.

I sometimes think common sense is a weakness of mine!!

Strenuous excercise as my check for Low counts was not my finest hour!

johncarp25 wrote: Strenuous excercise as my check for Low counts was not my finest hour!

Ha, nah, I wouldn't use that as a platelet count test!

Back to tranexamic acid-- When I asked my hematologist about that (I was thinking of a quick fix for nosebleeds), he said there were risks involved--I think possible strokes--and though I'm not considered a likely stroke candidate, he didn't think the tranexamic acid a good idea for ITPers.

Is it a more common treatment in England? Have some of you stateside used it with success and no bad side effects?

Karen

Karen, my son has a prescription of tranexamic acid tablets which he is supposed to take if he gets any bleeding episodes - like nosebleeds. He is only supposed to take them for a maximum of three days though, and I am pretty sure that time limit was because of the stroke risk. They seem to me to work really well and help the clot to stay put while it heals. However,I once had a really funny phone call from the chemist asking whether the prescription was right because she was more used to issuing them to middle aged women with heavy periods than teenage boys!

My Hemo wouldn't allow it either when I asked. However, it seems that the medical advisors here and at the conferences do use it for some patients.

I wouldn't think a person should use it long term to actually manage ITP or the symptoms, but in emergencies or as needed might work.

For me, it was a 'keep it in case' drug just to be used for nose bleeds that didn't stop or mouth blisters. With counts under 5 I would usually get a blood blister under my tongue on the floor of the mouth which I would feel get bigger and bigger and then burst leaving me with a mouth full of blood. The tranexamic acid as a swish and swallow was good at stopping those in their tracks.

Well, my counts have slowly continued to drop over the last four weeks.

I refused steroids, and a spleenectomy, and Ann - I have got my referral to the specialist centre at the QE hospital, so awaiting to see them.

As a final treatment option at my current Hospital, they offered me Azathioprine. I declined that, as I had never heard of it and although I shouldn't I googled it and it seems it can cause horrible side effects. I don't recall reading much about that drug on here, has anyone any experience of Azathioprine?

Not sure if I was too hasty declining it, but want to see what the specialists say at the QE Hospital.

Another name for it is Imuran. You can search that word on the Forum. A few people use it here. It's not known to work very fast and I agree, the side effects look bad. Most do fine without too many side effects other than nausea, but I don't like it long-term due to increased cancer risks. I tried it for Lupus and didn't like it at all.

I'm glad you got the referral! Good luck!

Hello,

I am sabeeh from India. I am also suffering ITP since June 2013. Doctor yesterday advised me to undergo removal of spleen surgery. He also proscribed me this expensive tablets Revolade(Eltrombopag) GBP132.3385225 medicine for 30 days. I have decided not to go undergo surgery. I am going to get hospitalize and take some steroids for 5 days. As of now my count is 62,000. Every 6 months i am doing this to avoid major complications.

I also tired taking Papaya leaves juice for 6 months without taking any medicines except vitamin tablets it worked for me and Platelets count was average between 60K to 70K. Only thing now i am going to take steroids is i have severe leg pain due to low count and no doctors are giving me pain killers to recover from leg pain. I am limping and leg pain is unbearable. Looking forward to better results in a week. Please pray for me. Hope one day we all will be fine and live our life without fear of dying. God is Great !!


With Regards,
Sabeeh

Sabe:

62k is a pretty good count. I don't know anyone who would go into the hospital with that count.

Your current count (or any count) should also not cause leg pain. You should speak to another doctor about that; could be something else going on.

Sabe,

Paradoxically, ITP can cause excessive clotting, including deep vein thrombosis (DVT). While ITP would not by itself cause severe leg pain, severe leg pain is a symptom of DVT. A clot from DVT can break loose and cause pulmonary embolism, which is very dangerous.

I don't mean to sound alarmist... I just want to be sure this possibility is not being missed.

Also important: eltrombopag should only be used to keep your platelets at a safe level, around 50k (50 x 10⁹/L). Higher than that and you are at further risk of blood clot formation. If your count is 62k you should not be taking eltrombopag.
www.rxlist.com/promacta-drug/indications-dosage.htm
If your doctor is recommending taking Revolade when your platelets are at 62k then you need a new doctor.

What is the steroid treatment that requires you to stay in hospital? Is it an extremely high dosage?

Thank you Sandi for your inputs.

Rob,
Interesting to know you brought this up deep vein thrombosis (DVT). I have pains only on my veins in my right leg from hip to toe. I get hospitalized and doc used to give me Solu Medrol (Methylprednisolone sodium succinate) for 2 days and if count does not increases than he changes the medicine to Decamycin Injection (Dexamethasone) 4mg with IV. I was also give Immunogloblin for 4 days when my platelets dropped to just 2000.

My only concerned now is server nerve pains and cramps on right leg. I am not sure to which doctor i have to check with. I met an ortho surgeon who said i don't have any disc fractures as well. If i sleep for long hours and wakeup i do not have leg pain at all but when i sit at my work place for 8 hours that is when i feel so difficult to walk. Hope i find some solution to this.

Thank you sandy for your suggestions and making me feel better about my platelets count. I surely will take it as advise and check with another doc. take care.

Solumedrol and Dex would not treat DVT's, so it can't be that. Blood thinners are used for DVT's. If those meds help the leg pain though, it is probably something to do with inflammation.

I am glad to know that finally i at least came to know the name of my nerve pains through this group that i have DVT. I traveled from India to Kingdom of Saudi Arabia for pilgrim. I was not using any medicine not even a paracetamol. I used to walk 14kms thrice in day while performing rituals and i was not getting any pain. Will that be reason now that i got this DVT?

Before flying my count was 1,96,000 and i stayed there for a month and came back to India. After my trip count was 63K. Sometimes i give up and used to cry and go into depression. Is there any way to keep mentally calm and stable.

For DVT, do we have to do some exercise so to avoid such pains? Any input advise is highly appreciated.

Admin: Just want to thank you that i am getting know more about my ailment and i thought i was one in million who is suffering from this. When i read about our fellow members i think we are all on same page with different experience and difficulties.

Do we really have cure for this ITP or we have to live with this lifelong?

John, i was taking Azathioprine since June 2013 to March 2014. Doctor gave me this medicine after inducing Immunogloblin IVIG when my platelets was 2000. This medicine helped a lot but when it was too much i got herpes infection on my left side of chin since then doc stopped that medicine for me. Now i take Wysolone (Prednisolone) 40mg daily.

No one is saying that you have DVT. DVT is a blood clot...if you had that, you would have been on blood thinners. It is a medical emergency that can result in death. I'm sorry for the misunderstanding. There is probably some other reason for the leg pain. Low counts should not cause that.

The thing to know about ITP is that usually a count over 30k is a safe count. It's not an emergency and most people would not go into the hospital to treat it. Maybe it's time to try another doctor.

The only way to stay calm about ITP is to learn about it and know that dying is very rare. If you don't have a lot of bruises or bleeding symptoms, chances are both you and your count are fine.

Sabe,

You misunderstood me. I did not say that you have DVT. Please do not jump to that conclusion.

It is only one possibility that your pain could be caused by an undiagnosed blood clot, which can be caused by prolonged sitting and long airplane flights.
This is a question that you should ask your doctors.
Some doctors do not know that someone with ITP might get blood clots.

I hope that soon your doctors can give you better answers about your leg pain.

I am sorry if I contributed to any confusion.

Thank you Rob and Sandi you both are so helpful. Honestly i am feeling so relaxed and calm after knowing so much from you both. Thank you for sharing your knowledge and expertise.

Thank you for the clarification Sandi and Rob. Sure i will try to know more about ITP and i think since my count is 62K and i do not have any bruises, bleeding symptoms and not even a red spot so i feel i am safe. I will not be getting hospitalize then.

Regarding my right leg pain, i think i have to check with some other doctor. Will it be advisable to check with rheumatologists? I remember back in November i met an oncologist who suggested me to check with rheumatologists as i was getting joint pains due to excess intake of steroids and sitting for 8 hours at work. May be i will try that and i hope to get better soon.

Yes, you should see another doctor. A Rheumatologist may help, but steroids can cause joint pain when you start to taper. That is fairly common. You have to start somewhere though, so it wouldn't hurt to seek the advice of another doctor. In the meantime, if moving around seems to help, maybe some walking and exercises could help.

I'm glad you are feeling calmer. If you start to have symptoms though, be sure to get it checked out, okay?

Thank you so much Sandi for your help. I sure will check and take treatment in a timely manner. Shall keep you posted all the developments so we share knowledge and learn. take care

Hello Sandi & Rob