Newbie help please. Knowledge is power!

I understand that Mrsb...and that is thanks to you and all the people on this site. But somebody needs to tell my haematologist, because she explained at great length why they wouldn't / couldn't do it (believe me I tried)! She might be absolutely right for that hospital, what do I know. She also said she doesn't want to give me false hope, which I struggle with.
Apparently I will be under the care of the consultant after what will be my last appointment with the haematology specialist doctor on the 4th.
So hoping for better things in the new year.

Ferv

The link below may be of interest

www.bloodjournal.org/content/120/5/960.full

Mrsb

Thank you, what an interesting article...a really informative look at 2nd line approaches.

Good. I hoped you'd find it useful. Have a festive yule. Where will you be?

I'm in Barrowby now, letting my lovely daughter take the strain!
Have a great Christmas time enjoying your platelets ))
And wishing you... steroid free in the New Year to come,
x

Thank you. How long are you in Barrowby for ?

I'm planning to stay until the 29th.

One of these days when you come up we may mange to meet. Please let me know when you next plan to visit x

Hi Fervenz,
Hope you had a relaxing stay with your family. I got into trouble from my daughter for not just sitting and being a guest. It's hard to switch off after years of organising the festive meal.
Just before Xmas my consultant agreed to try me back on 50mg of Eltrombopag daily, accepting that it was worth it to get me above 2 and hopefully free from bleeding . I am pleased to say that after 11 days on that dosage I have reached 5 , my nose bleeds have stopped and I have only a little bleeding when I brush my teeth. Others may think this is a terrible count but for me it rates as positive. Hopefully by next week I will have gone up as far as 7! There is no sign of the Rituximab kicking in and my Haemoglobin is still low, at 91, despite taking the spatone but I am less breathless . I told the consultant about your difficulty in getting the TPOs .He said that he did not agree with trying more toxic ,off label,poorly researched immunosuppressants before the less toxic well researched TPOs of proven effectiveness. The NHS trusts that do this are just putting cost first he says. I hope when you see your new consultant you could use this argument and inform him about the policy in Scotland.
All the best for the New Year.

Margaret k wrote: I told the consultant about your difficulty in getting the TPOs .He said that he did not agree with trying more toxic ,off label,poorly researched immunosuppressants before the less toxic well researched TPOs of proven effectiveness. The NHS trusts that do this are just putting cost first he says. I hope when you see your new consultant you could use this argument and inform him about the policy in Scotland.
All the best for the New Year.

So true! It irks me to no end when people are put through treatment after treatment only to end up on TPO's anyway. Too much toxicity!

Hi Margaret,
I'm glad to hear you were looked after royally! Also good to hear counts are going in the right direction.
My daughter researched vit C and persuaded me to take very large doses.... almost immediately my bruises began to heal, turning brown and yellow. New bruises much smaller and less significant...a minor injury not bruising at all. I can't believe it. I shall keep taking it though and see how what happens next.
In the meantime...The consultant is taking over from the specialist haematology dr. next week. I feel more hopeful.
Here's to great 2016
Ferv

Many people claim that Vitamin C helps bleeding symptoms. It usually doesn't raise counts though. Be careful with the dose; sometimes large doses can cause diarrhea.

Thanks Sandi, no symptoms at the dose I'm on & yes...my counts are still in the same range. I suppose it must support the clotting function. It also needs to be taken with at least 3 doses being of c+bioflavanoids to avoid stones of some sort. But the effect was really astonishing.

Hi Fervenz,
Thanks for the vit c tip.. As I am still bleeding from some of my gums when I brush or chew I will try it.What dose are you taking and what are the bioflavanoids? 50mg eltrombopag has only managed to get me to 4 this week so the dose has been increased to 75mg, the max. No sign of the rituximab kicking in. Consultant says he believes that ITP is not a unitary condition, that different people have different variations of B cell and T cell involvement and that is why there is so much variation in the condition between people's symptoms and their responses to treatment. From now on ,if the TPO doesn't stop me bleeding we will be in the realms of experimentation with the other available and sometimes effective toxic concoctions.

Hi Margaret, I am my own guinea pig...so all I can say is what I have done! It was my daughter who found all the info on the web.
I have taken Bionutri Vitamin C complex (product code 9337): 6 capsules a day (3x recommended dose). Apparently you can get some sort of stones long term, so I have just added BioCare flavonoid complex to take with the capsules. Once I found something changed for the better I decided to continue and that's when I started the bioflavonoids. My count is slightly up, but I know it is steroid supported anyway. Bleeding and bruising was increasing as I got down to 6mg of Pred, so this is a relief for now.
As Sandi says... watch out for the runs...but that has not been a problem for me so far.
If you decide to give it a go, I really hope it helps you too x

Margaret k wrote: From now on ,if the TPO doesn't stop me bleeding we will be in the realms of experimentation with the other available and sometimes effective toxic concoctions.

What would that be?

All the other possible drugs/ immunosuppressants; whichever doc thinks best. As he says ' we are reaching the limits of evidence based practice'

Margaret k wrote: whichever doc thinks best.

Margaret with research you have done, what do you think best?

I haven't gone far down that road yet. I will research opinions on this website first. My doc who is a university professor of Haematology, specialising in coagulation, says they all have toxic effects and are of poorly tested validity . I trust him a lot and am sure that we will discuss pros and cons if the time comes. He is as reluctant to have to prescribe other immunosuppressants as I am to take them.

Hello!

I first got diagnosed when I was 12 and steroids weren't the first option for me, They gave me a transfusion called IVIG, which I eventually found out gave me bad side effects, due to all the protein in it i would eventually throw up. I did try steroids probably a year later but they ended up dropping my platelets so we cut that one pretty quick. We tried a different blood product called Anti-D. It seemed to be the one that helped my platelets go up for a bit, I only needed to get this transfusion when my platelets got way to low. Other then that I never actually took anything on a regular basis to keep them up, I would just get them checked regularly to see where about they were.

I could say now that everything has settled down, I only get them checked whenever I want too or if I feel like something is wrong. I haven't had to get a transfusion for about 5 years now.

My super big advice to you going through everything is take control of your body, take care of your body.
To me that means eating a little better, exercising, sleeping well.
but most importantly BE HAPPY.
I can easily say all the years I had a bad time with my blood disorder is the time I hated it and wished it never happen to me but when I started to accept it then everything started to flow a little more. Your thoughts become your habits so be mindful of the things you say about yourself.

I recently found a job that I love and since then my platelets finally reached over 100,000.
how you live your life is key to getting better.
I don't take any medication, because my body knows how to fix itself.

Hi Fervenz,
I tried ordinary high dose Vit C tablets for a few days but I am afraid it was not a success. As Sandi said was likely I got the runs and also indigestion and as a result I think I did not absorb enough eltrombopag and so had a bleeding nose for 2 days. I was still at 4 on Mon but I am hoping that I pick up now that the digestion is better. Apparently about 20% of the drug is excreted normally so if you have frequent poos you must lose more. My gums are still raw and painful ; I am spending a fortune on various mouthwashes and gels and am awaiting an appointment at the Dental Hospital to see if they can help. I also have slightly painful and swollen glands under my jaw. Given that I am immunosuppressed with Rituximab that is worrying. My GPhas given me penicillin in case I have a gum infection but it is not reducing the discomfort. Anyone got any ideas or comments on this ? Not due to see consultant for a week, should I get in touch?
On a positive note my hemoglobin is stable at 94 with Spatone ,despite the bleeds. I am quite short of breath but have managed a park walk when the deluges here allow. I'm afraid Yoga and Zumba are off the menu due to the anaemia and the legacy of cervical disc removal.

I had painful swelling under my jaw and it turned out to be a stone or infection of the salivary gland. Do you have pain when you first take a bite of something? I thought it was an infected tooth too, but it wasn't.

Just a thought. Could be any sort of infection.

Thanks Sandi. I have just done some research and think I may have a herpes infection of my mouth. That would account for the blistered gums and the swollen glands. I was always prone to cold sores and the rituxumab may have let the herpes into my gums when they were bleeding due to very low platelets. Not suggested this week by either GP or dentist! Will chase them up tomorrow.
Treatable with acyclovir I hope.

Yes, herpes infection. Responding to aciclovir. Went to another GP in practice, said I think I've got an oral herpes, she said who told you that? I said I googled mouth sores and swollen glands. She said ,I think you're right . Independence always pays!

Good for you, Margaret! I can't tell you how many medical mysteries I've solved on my own. Sometimes you have to figure things out on your own. Sad, but so true!

Hi Margaret, I'm sorry for my non-response. Laptop permanently crashed. I read your experience with great concern, I'm so sorry. I hope your viral infection has cleared and that everything has improved after that horrid experience. I wish that I had never mentioned vit C. I'm glad that your hb is steady. I have an appt with Drew Proven in Feb. Reluctantly I had to start MMF because I was turned down for TPOs by my hospital trust, have to come off those steroids somehow. Hopefully Dr Proven will find a way forward that suits me better.

Ferv,
Dr. Provan is wonderful!! He is calm, reassuring, knowledgeable and realistic. He has seen it all. Tell him I said hello from Arizona!
Emily

Thanks Emily...I certainly will say hello from you!

Hi Fervenz,
Glad to hear you are seeing Dr Provan. I thought he'd retired. I know he is very well respected for his research and his clinical work.
I am glad to say this is a better week than last. I have to eat humble pie--- I was wrong about having herpes but nevertheless my dentist didn't react properly to what was wrong with me, nor did the GP at first. By the end of last week it was clear that what I did have was Acute necrotising ulcerative gingivitis, a disease usually found in WW1 soldiers, vagrants, those with AIDS and ,wait for it, the immunosuppressed of course. My GP gave me a strong antibiotic, Augmentin, as I am allergic to Metronidazole the one usually given to combat this and was furious wiyth the dentist who had not prescribed anything except Chlorhexidine mouthwash. My mouth is now healing and bleeding less. I am still on 75mg Eltrombopag but was still only at 5 on Monday. No evidence of Rituximab doing anything yet.
As well as my platelets and red cell counts being low my white cell count has also dropped to a concerning level so I have had further blood tests and am to have another Bone marrow biopsy so see if anything has changed there. They one done 3 years ago was ok and showed no mylodysplastic syndrome.
Had a long chat with consultant about futures options. He hates the idea of being pumped full of toxic immunosuppressants and says that although the results for splenectomy are much poorer for complete responses- count above 150-- for people with mixed spleen and liver destruction, a fair percentage , about 50% had at least partial responses.If he was in my position he would opt for splenectomy rather than more immunosuppressives. I have read the Najean paper and that is so but it concerns me that with age platelet destruction seems to happen more in the liver than the spleen . I think if splenectomy became a serious option I would ask for a new indium scan first because if my destruction was now predominantly in the liver there would definitely be no point in splenectomy.
I hope you get some benefit from the MMF and get off steroids. They are horrible and did nothing for me but it took me about 6 weeks to fully taper off and recover from being on Prednisolone for only 3 weeks.

Hi Margaret, thank goodness your gums are healing, sounds awful. But what a dilemma for you...having those tests will give you a clearer picture. My NHS trust wouldn't do the scan, But it seems obvious to me too...and things change over time as you say. Your consultant sounds much more involved and in the know. It's good they are going over things again Now I'm under 5mg Pred I feel my sanity returning. What do you think of MMF? I don't seem to have much in the way of side effects yet, one and a half weeks in. High blood pressure from Pred though.