I have 2 question?
1- I can't understand that how IVIG working to fight with ITP?
As we know in ITP IgG anti bodies destroy platelets, so if we inject an drug that contain IgG anti bodies , this must worsens the situation
!!!
2- According to the previous question i need to know should I weaken my immune system? Or must boost it?
IVIG replaces platelets and is sourced from plasma donations
You need to slow your immune system or temporarily shut it down to allow your platelets time to recover.
I found dexamethasone best at achieving that outcome
My 2yr old had dex and it Had No effect on him 😥. He has IVIG now and works great. He only has it if his platelets are at a dangerous level or we are going on holidays
I think my doctor described the how IVIG works the best: it's like giving your dog a chew toy so that the dog is fixated on it and spares what is important in your house. Now replace the dog with your spleen. You are giving the spleen all the extra igG conjugated platelets that it can destroy while your blood platelets can survive, even if for a temporary basis.
IVIG is fooling your body (immune system) into thinking your platelets are not actually yours so slows down the destruction of those platelets and briefly (one to two weeks maximum) raises your effective platelet levels. Really a rescue remedey for when your platelets drop into single figures. I did have weekly infusions for over a year - rarely got out of single figure counts but despite single figure counts IVIG stopped all the symptoms. Now back on Romiplostin weekly with better counts and quality of life!
Hi rjsmyth, saw you are on Romiplostin and wondered if you have any advice. I have just relapsed some 19 months after full Rituximab treatment; consultant has advised not to have another Ritux and is talking Romi or Eltrombopag. Your input welcome.
Ray
If the Retuximab worked - why not go with another round? Better to have an infusion that lasts 19 months than weekly injections?
Hi rjsmyth- Advice from my haematology consultant is not to have repeat Rituximab as the remission time gets shorter with each infusion course and the risks of serious infections grows greater. I think I would take a once a week injection over the risks associated with more rituximab, if the injections kept my counts at a reasonable level and there were no serious side effects!
Side effects are a real consideration. I often get ratty for a couple of days after my injection, acheing bones, fairly extreme tiredness the day after the injection. I have had rashes on my legs. There is the inconvenience of keeping the phials refrigerated which is awkward if going away on holiday and suddenly stopping Nplate can make your count plummet. If you do try Nplate I/We (Haematologist) have found there is a definite tipping point in the how much of the drug is needed. For example 100mg (four phials) will give me a steady platelet count whereas 75mg (three phials) will not.
I don't have a choice as nothing else works for me (IVIG makes me symptom less but does not increase my count) and I have had every other treatment/drug including Rituximab which did absolutely nothing.
Every drug/treatment for ITP comes at a price unfortunately.
Thanks, v. useful. What I found when reading the tales from ITP'ers, is the amazingly wide differences in ITP sufferers responses to rituximab; you, and at least one other that I have read about, have reported no help at all whereas others have had up to 4 years remission.
IVIG works for me short term, it will lift platelets to around the 90 - 100 mark within days and then the tail off begins so that at 4 weeks I am back to single figures, nose bleeds, bruises popping up all over, which is my current state! Now popping Dexamethasone and tranexamic acid tablets before back in the infusion suite at my local hospital on Monday, after which discussion with haematologist on Wednesday re next steps - Nplate or Eltrombopag. Interestingly in the UK Nplate is provided in 250mg phials; where in the world are you?
Again thanks for the information. Wishing you a happy, peaceful and hopefully healthy 2019.
I'm in the UK. I use four 250mg phials weekly (the maximum dose). I use a 5ml syringe and the needle from one of the kits. You had such a good response to Rituximab - why not another round? Dexamethasone is simply horrible (four times the strength of Prednislone) and Tranexamic Acid is for clotting and not something you want to be taking unless you cannot stem a bleed (can cause stroke). Is your Haematologist a specialist in ITP? If Rituximab had worked for me I would have been delighted and in your case of 18 months remission would not hesitate to have a second round unless you were having severe immune issues.
Hi, I was not aware that you were in the UK as your previous message referred to 100mg phials. With a dosage of 4 x 250mg phials I am guessing that you weigh somewhere around 90+kgs?
Yes, my haemo is a specialist in ITP. Yes aware effect of Tranexamic Acid, I was provided with a supply to keep at home and only use when I can't stop a nose bleed after 30 mins; alternative is visit local hospital ED, have my nose packed and get incarcerated for 24 - 36 hours. No thank you.
Re second Rituximab - I was advised with the first one that remissions could last as little a 6 months or as much as 4+ years. Current advice is not to redo as remission time will be much shorter and the risks of severe infections increase as does the chance of Progressive Multifocal Leukoencephalopathy (PML), which is often fatal; on that basis a second round is not in my future.
2nd round for definite but be aware it may not work. I got 4 years from first treatment, but 2nd round did nothing. I’m now on monthly ivig which is keeping me constant, except I have a permanent cough (small price to pay).
Hi rgomm, thanks for your reply. Re second Rituximab - I was advised with the first one that remissions could last as little a 6 months or as much as 4+ years. Current advice is not to redo as remission time will be much shorter, as evidenced in your case, and the risks of severe infections increase as does the chance of Progressive Multifocal Leukoencephalopathy (PML), which is often fatal; on that basis a second round is not in my future.
IVIG works for me short term too, it will lift platelets to around the 90 - 100 mark within days and then the tail off begins so that at 4 weeks I am back to single figures, nose bleeds, bruises popping up all over, which is my current state! Now popping Dexamethasone 40mg x 4 days and tranexamic acid tablets before back in the infusion suite at my local hospital on tomorrow for course of IVIG - second one this month, after which discussion with haematologist on Wednesday re next steps.
IVIG has antibodies, derived from human plasma pools. IVIG antibodies cover or coat the platelets, so spleen doesn't recognize the platelets and they escape the possible destruction from splenic antibodies.
4 year old daughter recently diganosed with itp