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- Carducci7292
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Also, I have bruising from blood tests, intravenous and hitting my hands on hard surfaces. If my count increases does it hasten the healing? Is the healing a sign that my count is at reasonable levels?
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- MelA
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IVIg doesn't last long (usually) - platelets from a transfusion are destroyed in the body just as those made in the body are destroyed.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- Carducci7292
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Have you had experience with purpura and whether it heals when your counts go up?
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- Hal9000
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- Give me all your platelets and nobody gets hurt
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Are you aware that some folks go into remission after taking Nplate/Promacta (alone) for awhile? Why consider a splenectomy if one might be in that group? Especially in your case.
Curious Carducci. Do you exercise a lot? How about the Flu. Did you have a bad case this year? Taken unusual drugs recently?
50 is a pretty high starting count. May foretell an easy ITP course.
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- Carducci7292
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I have always exercised i.e. walking 2/3 miles per day, golf, yoga, etc partly to fend of effects of Rheumatoid Arthritis the last 40 plus years. Over the last 10 years my platelets have never exceeded 167,000. No Flu. Did take fairly high dosage of an over the counter anti inflammatory supplement that contained ginger just prior to my count dropping.
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- poseymint
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Everyone is a bit different in how they respond to treatments. Yes, people can go into remission, especially in the first year, ITP is not necessarily a long term chronic condition. I have had ITP for 12 years and still have my spleen- doctors have tried to talk me into splenectomy but splenectomy doesn't always work. Plus my spleen is very healthy and doing its job, seems just wrong to take it out. Most people agree that you should give yourself at least a year to see if the ITP will remit before thinking about removing the spleen.
I have seen a number of people go into remission from Nplate on this forum and at my doctor's office. I have been on Nplate for 5 years with no apparent side effects. I haven't had a remission but it keeps my counts at a safe number around 50. There is a pill, Promacta that works in a similar way to Nplate if taking a pill is more convenient it may be something you'd like to try some time.
Yes, bruises do clear up when counts go up, thats been my experience but its not always easy to tell when counts are low and high. Sometimes I get a bruise at 30K and nothing at 5K. I would say your doctors are following protocol. Nplate has a good success rate, 80% of the time it will bring counts up to safe numbers. Good luck!
ps. you mentioned anti-inflammatory supplements- I get bruises from turmeric supplements and Omega 3 supplements as they inhibit platelet function. Ibuprofen and aspirin also inhibit platelets.
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- Carducci7292
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I have been lucky to be healthy over the years with one exception, Rheumatoid Arthritis since I was in my 20's. My Hematologist feels all of the years my immune system fought the arthritic condition has taken its toll and led to my ITP diagnosis.
Not sure if it has anything to do with my drop in platelets but I started taking the maximum dose of an anti-inflammatory supplement containing tumeric, curcumin and ginger. At the same time i was taking Advil before bed to help with the Arthritis pain/swelling. That went on for a month or so before i completed an annual physical and my count dropped to 50000 from my normal 125000 to 165000 the last ten years. I immediately stopped both the supplement and Advil.
So far I have had bruising when i hit my hands on hard surfaces or get blood tests/intravenous but no bleeding even when my count was a low as 6000. When I receive my N Plate injection it appears that the bruising improves and does go away but depending on severity it takes many weeks. I see the bruising improve and think ok my count must be up. Then seemingly out of nowhere a new bruise will appear and I think my count is down again. From your comments I assume that is normal? Have you found less chance of bruising when your counts are 50,000?
Are there other symptoms of a low count that you monitor i.e. fatigue?
I will question my Doctor about Promacta, thank you.
My spleen is healthy, not enlarged based on scans and ultrasounds and my Doctors feel it is functioning ok. At the same time, my Hematologist promotes removal as a last resort. I plan to wait at least 6 months to a year before considering the surgery. Hoping the N Plate will take hold. Can I ask how long it took for N Plate to raise your counts to 50000 and at what dose? I have read that 2mcg/kg is the average and I am already at 3 mcg.
Again thank you for the invite. It is invaluable.
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- Carducci7292
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- Carducci7292
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Thanks you
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- sillyman
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You have to understand how ITP works and its symptoms. Only way you can get rid of bruises is, find a way to keep your platelet level up. Transfusion works but it won't last long in your system. You have to find a medicine that works for you.Carducci7292 wrote: Hope you don't mind one other question. Is there anything that can be done to reduce the appearance of purpura?
Thanks you
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- Carducci7292
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I don't have bruises when my counts are 50. My first hemo said they can do open heart surgery with a platelet count of 50, so that kind of gives you an idea that its a safe count even though not whats considered normal. I had my wisdom teeth pulled with a count of 50 and was fine without stitches. But not everyone is the same. There are like 57 different chemicals involved in blood clotting as its so crucial to the survival of the body, its called the "clotting cascade". Platelets are important but they are only one piece of the clotting puzzle. For some reason, I never have bruises when my counts are under 10. I believe in my case something else is picking up the slack. When I have bruises my counts are usually in the 20s.
I have never had fatigue when counts are low. But some people do have fatigue as a symptom. I've heard that Vitamin C can strengthen the blood vessels and might help with bruising? I don't know. Omega 3 softens blood vessels so I can't take that, also curcumin causes bruises as I mentioned. I generally avoid supplements because I am on several expensive medications and don't want anything to interfere.
Nplate works differently for everyone ( as with everything ITP related) What I've noticed is that it takes about 2 doses to bring my counts up. Each dose builds upon the previous dose, so you have to give Nplate time to work. For example- if 2mcg brought your counts up to 36, then if you had stayed on 2mcg your counts may have been over 50 the next week. Because the second dose will build upon the 36 count dose. Your doctor chose to raise your dose to 3mcg which is a fine way to go also. Will be interesting to see where it goes.
I would have to disagree that 2mcg is the average dose, in my opinion it is a low dose. 3 mcg is a low dose also- but hey I'm on 5mcg which I think is an average dose. Depends on your point of view. The doses go from 1-10mcg, so if you think 3mcg is getting high, don't worry, its not a high dose. take care, thanks for posting your story!
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- Carducci7292
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So far the side effects of 3mcg have been minimal i.e. tingling in my fingers and some aches and pains. As the days have past since my injection last Friday I have seen slow but noticeable improvement in the bruised areas.
Hoping my count is up this Friday and going to 4 or 5 mcg will get me above 50,000.
Thank you for taking the time to respond.
Stay well.
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- Hal9000
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Oh my, with RA that seems like a lot of exercise. Comparatively, RA is mild compared to some?
How about vitamins. Do you take them regularly?
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- Carducci7292
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Thank you
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- Hal9000
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- Give me all your platelets and nobody gets hurt
I've never looked into RA. Someone told me that they had a very bad case of the Flu, as I recall, when their RA started. I guess there are several possible triggers.
I'm anxious to hear what dose of Nplate you end up on. Typically the ride might be a little bumpy to get there. Just needs some time.
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- Carducci7292
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N Plate appeared to be working but as you say ride can be bumpy. Hoping higher dose last Friday shows up as a higher count tomorrow but the roller coaster could dip instead. If i have to go higher than 3mcg so be it. So far the side effects have been minimal. I just want to get stabilized so I can get back to a somewhat normal life.
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- Carducci7292
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Thanks again for all of your comments and information.
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- MelA
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"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- Carducci7292
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I received 1 mcg/kg when my count was 78,000 4 weeks ago. I had received an IVig infusion 6 days before and by the following week my count dropped below 50,000 to 27,000. Because I was below 50,000 the dose was raised to 2 mcg/kg and my count went to 38000 with no recent IVig or platelets transfusion. Again because I was below 50000 my dose was raised to 3 mcg/kg. Today when my count was 211000 I received the same dose at 3 mcg/kg. If I am fortunate enough to have a count above 200,000 next Friday the dose will be reduced back to 2 mcg/kg. I hope this makes sense.
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- Carducci7292
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My Hematologist indicated no concern about a jump in the count. I have had my count go from 19000 to 129000 and 6000 to 250000 when I received multiple IVig infusions.
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- mrsb04
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The half life of Romiplosim is 1-34 days, median 3.5 days ( see fda site)
The drop in prednisolone should go 10mg to 7.5 mg which is the average physiological dose.
You have been on high dose steroids for over 3 weeks. Your adrenals have probably gone to sleep.
They need gently waking up otherwise you could have an adrenal crisis.
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- Carducci7292
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- Carducci7292
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Thanks
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- mrsb04
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These are the latest guidelines from uptodate.com
●5 to 10 mg/day every one to two weeks from an initial dose above 40 mg of prednisone or equivalent per day.
●5 mg/day every one to two weeks at prednisone doses between 40 and 20 mg/day.
●2.5 mg/day every two to three weeks at prednisone doses between 20 and 10 mg/day.
●1 mg/day every two to four weeks at prednisone doses between 10 and 5 mg/day.
●0.5 mg/day every two to four weeks at prednisone doses from 5 mg/day down. This can be achieved by alternating daily doses, eg, 5 mg on day one and 4mg the next.
Believe me adrenal insufficiency is horrid. I would only wish it on my worst enemies.
There are quite a few threads on the site.
Not sure about the Romiplostim question. Chemistry not my strong point. Maybe Hal will chip in with the answer
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- Carducci7292
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I checked with my Primary Care physician and he agrees with the Hematologist about going from 10 to 5 to 2.5 to 2.5 every other day. I started tapering after 3 weeks at 70mg with weekly 10 mg decreases. The said, I am going to take your advise and slow down the tapering 7.5/5/2.5 possibly for 2 weeks then go to the 2.5 every other day.
Thank you
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