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TOPIC: Newly Diagnosed

Newly Diagnosed 1 month 1 week ago #67001

  • Carducci7292
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Completed abdominal ultrasound, CT scan, bone marrow biopsy and numerous blood tests. All negative thank God and received ITP diagnosis. Initial treatment with 70 mg Prednisone did nothing after two weeks. Count remained in 20,000 range and then crashed to 6,000 requiring hospital stay. IVig and platelet transfusions cause increases in count i.e. as high as 250,000 with IVig but short term result. Received four infusions of Rituximun which appears to have done nothing. Now receiving N Plate weekly with last injection Friday 7/12 at 3mcg/kg. Previous injection at 2mcg/kg held count at mid 30,000. My confidence level is low due to previous crashes. Can anyone comment as to the treatment protocol my doctor is following? Should I be doing anything else?
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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Newly Diagnosed 1 month 1 week ago #67002

  • MelA
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When did all this start - what were your symptoms - when did you receive ITP diagnosis?? 2 weeks of prednisone and no increase in platelet count? How long after the 4th Rituxan infusion did you start N Plate? (I know nothing about either of those - but do know it takes a while for Rituxan to kick in so was enough time given?)

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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Newly Diagnosed 1 month 1 week ago #67004

  • Carducci7292
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Thank you for responding. Initial low platelet count 50,000 found during routine annual physical early May. Hematologist tried 40 mg Dexamethasone for 4 days with no effect. Then 70 mg Prednisone for 3 weeks again with no positive effect, count dropped to 20000's. First Rituximun infusion at that point A week later I received IVig and second Rituximun infusions. Count went to 129,000 within 4 days but dropped to 6000 a week later. Went to hospital and received three IVig infusions and third Riruximun. Count went to 250,000 within 4 days then dropped to 20,000 within next week. During that time Hematologist told me to taper the Prednisone 60/50/40 weekly. I am currently down to 10mg. First N plate injection at lowest level of 1 mcg/kg two weeks ago because at the time my platelets were above 50,000. Latest N Plate at 3mcg/kg with platelets at 36,000 and will learn if count increased this Friday. Goal is to increase level of N Plate until stable above 50,000. If N Plate not successful Dr's are talking about a splenectomy which I would like to avoid.
Have you had experience with purpura and whether it heals when your counts go up?

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Newly Diagnosed 1 month 1 week ago #67006

  • Hal9000
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Carducci, those treatment responses sound like quintessential row 2 responses in my ITP treatments table - complete with simultaneous steroids and IVIG working. Right, Rituxan rarely works with row 2.
bottools.com/Hal/ItpTypes.html

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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Newly Diagnosed 1 month 1 week ago #67009

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Thank you for your input. 50000 was short lived. I remained at 20000 down to 6000 except for positive response to platelet or IVig infusions for the last two months until I received the N Plate injections. Last count was 36000. Hopeful now that I am at 3mcg/kg my count will respond favorably and stabilize above 50000. I did not know people go in to remission.
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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Newly Diagnosed 1 month 1 week ago #67010

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Hi Carducci- Welcome to the PDSA forum. Read all you can and make educated decisions because from my experience low platelets are not always a medical emergency that requires hospitalizations and transfusions. Its important to look at your symptoms and not just the platelet counts. Some people do have problems with bleeding but like myself, I have nothing but a few bruises with counts as low as 1000. So you have to get to know your own body. Rarely does anyone know what triggered their ITP, sometimes a vaccine. ITP can go along with other autoimmune disorders especially the rheumatic ones like Lupus and Sjogrens, maybe RA ?but I'm not sure about that. I am diagnosed with Sjogrens along with ITP. Sometimes the rheumatic disease comes several years before ITP, and sometimes ITP presents first. For most people ITP is not associated with other disorders but it can be.

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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Newly Diagnosed 1 month 1 week ago #67011

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Thank you very much for taking the time to reply. You answered many of my questions/concerns and quelled my anxiety which has been high since my count dropped. I feel like I am on a roller coaster with no brakes as my count goes up and down.
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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Newly Diagnosed 1 month 1 week ago #67012

  • Carducci7292
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Sorry I meant to type insight in the last line not invite.

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Newly Diagnosed 1 month 1 week ago #67013

  • Carducci7292
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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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Newly Diagnosed 1 month 1 week ago #67015

  • sillyman
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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

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.

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Newly Diagnosed 1 month 1 week ago #67017

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Thank you.Last Friday my count was 36,000 with an N Plate injection at 2 mcg/kg the previous Friday. I received an injection at 3 mcg/kg and have seen improvement in the bruising the last few days. Hoping my number increases this Friday when I am due for my next injection.

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Newly Diagnosed 1 month 1 week ago #67018

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What are the counts when petechiae and bruises appear? In my experience bruises appears when platelet level is less than 6,000. This might be change person to person.

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Newly Diagnosed 1 month 1 week ago #67019

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Great that you are responding to Nplate. Its my personal favorite drug for ITP. It works well with no side effects, so the perfect treatment for me.

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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Newly Diagnosed 1 month 1 week ago #67020

  • Carducci7292
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It is great to here from someone who has ITP and has been through the treatment process. I learned a lot from your messages.
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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Newly Diagnosed 1 month 1 week ago #67027

  • Hal9000
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Carducci, let me double check my understanding. Do you recall what dose of Prednisone you were taking when you had the IVIG and counts went up to 129? Also what dose when you had more IVIG and counts went up to 250? Was it 50 or 60 mg or ?
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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Newly Diagnosed 1 month 1 week ago #67032

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60mg per day when 129,000 with IVig 5 days prior and 4 days prior and 40mg when 250,000 with IVig 7 days prior, 6 days prior and 5 days prior. I am only taking Vitamin D2 daily at this time. My RA started 40 yeas ago when I was injured in a basketball game. At the time is was crippling. After 18 months of monthly cortisone injections and heavy anti inflammatory drugs my condition improved. I had some bad flare ups over the next ten years and then my condition has been such that Advil and since the ITP diagnosis Tylenol has kept the pain manageable. I know it runs counter to the norm but I have found exercise reduces my RA flare ups.
Thank you

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Newly Diagnosed 1 month 6 days ago #67039

  • Hal9000
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Ok, thanks. IVIG was definitely simultaneous with steroids.
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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Newly Diagnosed 1 month 6 days ago #67041

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Thank you for responding. In my case the steroids appeared to have zero affect. Same thing with Rituximun.
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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Newly Diagnosed 1 month 5 days ago #67058

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CBC this morning my count was at 211000. It appears you were correct that I would have exceeded 50000 if they kept the dosage at 2mcg. Since I was at 3 mcg last Friday, I received an injection at 3 mcg again this morning. If my count is above 200000 next Friday they will reduce me back to 2mcg. Here's hoping!
Thanks again for all of your comments and information.

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Newly Diagnosed 1 month 5 days ago #67060

  • MelA
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I'm just being curious since I don't know anything about the injections - why if your count was at 211,000k this morning would you receive an injection this morning?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Newly Diagnosed 1 month 5 days ago #67061

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The published protocol for N Plate states that you start with the lowest dose 1 mcg/kg weekly injection. If the count is less than 50000 you increase the dose by 1 mcg/kg to 2 mcg/kg. If the count is greater than 200,000 for two weeks in a row you reduce the dose by 1 mcg/kg. If the count is greater than 400,000 No dose is given until your count drops below 200,000 then the dose is reduced by 1 mcg/kg. If your count stays between 50 and 200,000 for 4 weeks that is the dose you stay at until you go below 50,000 or above 200,000.
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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Newly Diagnosed 1 month 4 days ago #67066

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A count of greater than 150k for 2 weeks is UK protocol for dose reduction with 250k as cut off for missing doses and not restarting doses until count below 150k

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Newly Diagnosed 1 month 4 days ago #67069

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Interesting. The parameters I listed were stated by my Hematologist and are also listed in the N Plate brochure I was given. I received a 1 mcg dose at 78,000 count, a 2 mcg at 27000 count and a 3 mcg at 38000 count which led to the 211000 count yesterday. I am wondering if the injections build up in your system over time? in other words do the injections have a half life so at the point I received the 3 mcg dose some amount of the earlier doses were still in my system. If so, next Friday I will have the effect of the 3 mcg dose from yesterday plus the effect of the earlier 3 mcg dose in my system Will be interesting to see if the number goes higher of decreases. Over the last four weeks since i started the N Plate i reduced Prednisone from 40 mg to 10 mg per day and i am now at 5 mg.

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Newly Diagnosed 1 month 4 days ago #67071

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Thank you Carducci - wasn't sure if this was like the other one where a count of 50k is the goal. I know my former hematologist doesn't want me to have a huge jump in count as that can be dangerous - I started with a new hematologist this year since he is closer to me.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Newly Diagnosed 1 month 4 days ago #67072

  • Carducci7292
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Actually 50000 is the minimum goal. If your count is below 50000, they increase the dose by 1 mcg/kg until you exceed 50000. If you are between 50000 and 200000 they continue you at whatever dose got you there. Over 200000 for two weeks and they reduce the dose by 1 mcg. I know people who are at 5 or 6 mcg in order to hold their count above the 50000 level.
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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Newly Diagnosed 1 month 4 days ago #67073

  • mrsb04
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Carducci
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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Newly Diagnosed 1 month 4 days ago #67074

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Thank you. My doctor advised 10 to 5 to 2.5 to 2.5 every other day for the Prednisone. I went to 5 yesterday. I will question him about 7.5 first before dropping to 5.

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Newly Diagnosed 1 month 4 days ago #67075

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If Romiplosim has a median half life of 3.5 days does that mean that a 1 mcg dose would still be in a person's system at 1/4 mcg after 7 days - 1/2 after 3.5 days and 1/2 of 1/2 or 1/4 after 7 days? If so, then a person receiving a 3 mcg dose two weeks in a row would still have approximately 1 mcg in there system when they received the third dose.
Thanks

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Newly Diagnosed 1 month 4 days ago #67076

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Regarding steroid tapering. Ask your doctor if he has ever done it himself. I suspect not.
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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Newly Diagnosed 1 month 4 days ago #67077

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I checked a number of web sites and it appears my math is correct. If you use the median of 3.5 days, a 3 mcg dose will still be at 3/4 mcg after 7 days when you receive the new injection. Also, the 3 mcg dose from 2 weeks prior will still be at 3/16 dose so the cumulative affect will be approximately 1 mcg when you receive the new 3 mcg dose. If you are receiving a 2 mcg dose weekly there will be approximately 5/8 dose remaining after two weeks when you receive the new dose.
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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