Am about to start nplate and wondering how long it has taken to be effective for people here?
As background- I don't respond to steroids or promacta (was up to 100 mg). My platelets are below 6 unless I get ivig ( which is no longer on the table since I've gotten aseptic meningitis twice). Anyway- am hoping if nplate will work it will be fast so I don't have another bleeding event ( though I will try win-rho if it happens again).
Surprisingly I am less symptomatic when my platelets are 6 compared to 3. Wouldn't think it would make much difference but I have way less
Blood blisters and petechia now that I'm at 6.
My second question is about exercise. I know the general advice is not to exercise when counts are less than 10- but I have been less than ten for 2 months and it's killing me not to exercise. Has anybody been able to exercise at counts less than 10?
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 326
I had an immediate response to N plate. I started on 50mcg. That held for a couple of weeks then upto 100mcg which counts held for 5 months as I dropped prednisolone gradually then I had to increase dose to 150mcg which I've been on now since mid February. Count last week was 50
I have ITP with a recent platelet count of 44k. I need to have a tooth extracted for a permanent bridge. My hemo what's me to begin Romoplostim injections to raise platelet count. I go to my dentist every 6 mo for cleanings & checks. Have had fillings with platelet count under 50k with no problems. I was diagnosed with ITP about 5 yrs ago & have not been on any meds to boost platelet count. I have been researching on the internet & don't want to start any meds yet. I don't have a bleeding problem & think I would rather take my chances with the extraction without any meds to boost platelets. Platelets are checked once a month and have never been lower than 31k. Anyone else had a tooth pulled with platelets 30 - 45k?
I would also like to know about people's experience wth dental work - procrastinating going to the dentist was clearly not the best idea. My counts are still less than 10 but would like to know other people's counts when they braved the dentist.
Karen & Deb since no one has answered yet - I've had ITP since 1989 and have never asked if I should or shouldn't see the dentist, one of his friends has ITP, BUT I am not telling you to do as me!!
When I needed to see the specialist to cut through gum & bone to get a piece of equipment that had broken off at the end of a root during a root canal years past the specialist didn't want to do the work without a hematologist saying it was ok. At the time the HMO didn't think I needed a hematologist since I wasn't treating so I had to get one and he said it was fine with the count I had. Gave the results to the specialist and he was fine with doing the work since the hematologist said ok & my platelets were decent.
So you know what I would tell you - ask your hematologist or have your dentist & hematologist, specialist & hematologist, get together and decide yes or no.
When I first started using Promacta 4 years ago it worked within a month and by 2 months I was at 150 but now at age 69 I don't respond so well and it has taken 5 months at 75 mg for me to gradually rise from 3 to 16. Like you I see huge improvement in symptoms between being at 3 and being at 6; no nosebleeds or gum bleeds at 6 or above and tho 16 doesn't seem very good,for me it means a quite normal existence so both I and my consultant are happy to continue with this dose. At 10 you should be quite able to go for long walks for exercise ,I don't know about gym workouts. Nplate now is no better than Promacta for me ; no dramatic improvement so as Promacta is easier to use I'll stick to that. Give it time to work and maybe accept slow progress .
I have had ITP since I was 15 years old (I am now 35) with a general platelet count between 19,000-40,000 without treatment. I had a hematologist, who recently retired, and I was on 75-150 mg of Nplate with decent results (8-10 months ago). I even had a wisdom tooth removed when my count went up to nearly 120,000. I am currently seeing a new hematologist and started on 150 mg based on my weight. I had minor side effects, which I could easily deal with, on the first go around with Nplate, but now that I am on a consistent 150 mg, where the results have gone from 19,000 to 66,000 after the first 3 weeks of treatments. However, I am getting headaches, body aches and I am feeling weak at times with the treatment, where I felt great before the treatment began (count was 27,000 at the time).
I have an appointment coming up with the hematologist and I am considering changing treatment or taking a lower dosage of the treatment. Has anyone else experienced side effects with Nplate???
Steroids and Rituximun did not work for me. My count went as low as 6000 and I ended up in the hospital where I received a number of IVig infusions. My count went as high as 250,000 but dropped back into the 20000 range within week.
I received a 2 mcg injection of N Plate and my count went up to 36,000. Because I was still below 50,000 I received a 3 mcg injection and my count went to 211,000. I received another 3 mcg injection and a week later my count was at 256,000. Because I was above 200,000 for two weeks the dosage was reduced to 2 mcg. I am waiting to see how my count reacts to the lower dosage. Bottomline, it is early yet but so far N Plate is working for me.
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