Ivig i received 3infusins over last 6 week after the first two had mild symptoms of flue like feelings after 2half weeks needed another dose
After getting home i became quite ill 5days later admited back into hospital put on antibiotic drip back home and looks like my count has came down tonight blood blisters in my mouth i am totally scared of getting more ivig has any one else had this
For lots of people it just doesnt work or gives such a short boost the time effort and side effects just arent worth it.What are your counts and symptoms like? have they suggested any other treatments for you?
Hi I did have horrendous headache after the infusions and felt rough for several days so not allowed to have it again, but it did give me normal count for a short time.
Hi Salmagal. Sorry to read of your reaction to Ivig. I used to have infusions upto 12 years ago when I was spending a day a week in hospital. Since then I have only had infusions when count needed to be raised for surgery. I have lived with a count of 10 for all that time, but I am lucky I do not bleed. However, the last time I had Ivig, I had a bad reaction so no more. I am currently awaiting surgery and I have been put on eltrombopag which has worked well raising my count over 100 in 10 days but not all doctors like using this new drug nor N-plate. If in doubt, have a second opinion from another 'specialist' in ITP. You will find a list of centrers on the ITP Support Association web site and the doctors names. Good luck.
Hi sailor I'm having a problem reading your full message on forum I wonder if you could email me it's firstname.lastname@example.org thanks sailor kind regards Sarah
IVIG usually gives a very quick response when it works(for about 90 percent of people). The effects decline very quickly over about a month. I had 2 days of infusions followed by flu like symptoms . Fortunately MMF works for me, but just a thought about getting a quick response. If you are Rhesus positive ,about 85 percent of us are, you could ask about Rh-D infusions.they are quicker and cheaper. The down side is the effect is also temporary and some people get headaches. I read that Nplate was initially good for you before failing but have you been offered Revolade (eltrompaq) which is also available here in Scotland for difficult,refractory ITP cases.There were additional guidelines given by the SMC last December for NHS Scotland.
Good luck, you are having a hard time, Derek
I had a similar reaction to Gammaplex mixture but tolerated the Viagam mixture with very good result. Perhaps others have had similar experiences.
Thanks all just home from hospital been give platelet infusion as counts were at 1 also been given 20mg of prednisone booked to go back in early Monday for overnight stay for rituximab here's hoping its ok I told consultant couldn't take another chance with IVIG so far so good will keep you posted just hoping for quiet hospital free weekend then will face whats to come kind regards to all thanks Sarah
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