Hi, I live in Norway,Diagnosed with ITP in febuary just ONE week before I long planned surgery to my eyelids, Ofcourse no surgery. Had lower than 5 in platlets when I had to be hospitalised asp. had petechiae on my legs for a few days, nosebleed a cracked blood vessel on my eye. I decided to see the emergency doctor when
I also had bruises
emerge on my arms and legs. Had platlets infusion , stayed in hospital for 3days had some more infusions ( something immune stuff) and then they gave me the pills, The cortison, Prednisolon. Glad they just gave me 50 as a start dose. Platlets quicly rise and now I am at 298!!!only 1,5 month later. I am hoping I will not have this ITP permently but I have been reading a lot about it and I guess,there is a great risk of it being permantly. Question: anyone had surgery while on cortison tablets (5mg) ?
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Confusius
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How people react to treatment is rather individual. Some manage on a low dose of Prednisolon, for others it does not work. Even if the disease becomes cronic it is likely to become less severe and some can manage without any treatment. However Prednisolon has many side effects and should not be used permanently.
I think the doctors prefer a platelet count of at least 50 before surgery. IVIG (I think that is the immune stuff you mention) will often raise the platelets for a few weeks, so that treatment can be used for planned surgery.
My haematologist said that opretation could be done at 50 platlets, but not so sure what the plastic surgeon is ok With, but bet close up to 100. But the cortison tablets I am on is a another matter. ;O) I have talked to the surgeon awhile ago as I made another opponiment. I seemd ok With it as long as platletes was exeptable, (forgot to ask how low or how high ) But have been trying ti find out on the internett since my haematologist said that he thought the surgeon might have a problemdoing surgery With me having been onPrednisolon for 1,5 month. I have now send an E-mail to the good dr,Suregon ;O) I will wait answer in a few days.
It must have been emergency surgery as most anesthesiologists I know would not give general or regional anesthesia with a platelet count of less than100K and especially not for elective surgery.
Welcome to the group, there is no cure for ITP at this time only remission but research is ongoing. Correct me if I’m wrong but I believe Norway has universal health care in which case you have access to Nplate ( romiplostim) which is great but very expensive drug which is not covered by many insurance companies. The cost of a 250mcg bottle is $5,000.00, the dose is started at 1mcg per kg and increase until platelet count is stable at 50K, maxim dose is 10mcg/kg. A 70kg patient requiring 8mcg/kg (560mcg) weekly injections the cost is $15K per week or $780,000.00 per year. Hopefully your country will cover the cost until we have a cure. Be well
Hopefully I wont need Nplate, but time will tell, I did have infusion With platlets and got infusions With PANZYGA 3 times, in two days while in hospital,This is also expencive but thankfully covered by the State. If I must have Nplate it will be covered, Glad we have this system i Norway. I dont have any Medical Insurance, never have, no need, but it is aviable to those who can afford it,and want some extra Insurance. Take care you to xxx
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