New to ITP needs to know whether I need to go ER

Probably due to the fact that technically, once the vial is punctured, bacteria can enter. I'm sure that's part of it. When I was giving myself weekly Methotrexate injections though, I used the same vial over and over for weeks until it was empty. That is how it was prescribed. I'm sure that drug companies make much more money though by telling people to discard the vials after they are used. I think many vaccine vials are the same way.

Sandi, the vial contains a powder that must be reconstituted with sterile water at the time of injection, or not more than 24 hours ahead of time.
I presume that the powder can't accurately be measured and then mixed with the water; the entire vial (which comes in two sizes) must be mixed and then the correct dose withdrawn with the syringe. The powder is preservative-free, so once reconstituted, the excess must be discarded.

Things are looking good. I am still on the lowest dose 1 mcg/kg and the count is now 63K. From 14 --> 37 --> 40 --> 63. I will be staying on this dose for a while unless.... I asked my doctor about the reusing the vial and he will talk to a pharmacist about it.

I also brought up to him about my allergy history (thanks to the new topic allergy/ITP) and he thinks getting allergy shots is a good idea. I will be seeing the allergy specialist soon and check my reaction towards food and environmental factors. I know I am severely allergic to oak pollen (I had allergy shots for 3 years without much improvement). It will be interesting to see if I show any new reaction to other things.

Checking allergies is not a bad idea. I had the scratch test when I was about 16 and was allergic to a lot of things. Still am...never did anything about it. I have constant nasal congestion and nothing helps. I should have done something a long time ago. At this point, it's at the bottom of my list though.

Good luck, I hope it helps.

Forevertwentyone wrote: I am still on 1 microgram/Kg dose. After the 2nd shot last Friday, my plate came out 40,000 today (I will be getting the blood test and the Nplate shot done on every Fridays). We decided to stay at the current dose few more weeks (until the counts drop) and I got the 3rd shot today.

While I was getting the shot, I asked the nurse whether they can store the unused Nplate solution for later. The nurse said no.

I am getting only 46 microgram (yes that I am petite) each time and the bottle comes in 250 microgram unit therefore 204 microgram is being wasted each week. I thought Nplate is sort of protein (or rather peptide?) and the peptide solution should be quite stable for several weeks in the refrigerator (according to my research experience) as long as it's been handled aseptically.

I already had this information found on Amgen's website, but I asked the nurse who gave me my shot today to confirm.
There is no preservative in the powder, therefore the mixed solution must be discarded after 24 hours. I remarked what a wasteful shame that is.
Then she hit me with a bombshell that I should have seen coming. All the Big Pharmas do that with their most expensive drugs.
Are we surprised? Not me.

Thing is would we want preservatives in the product? I wouldn't. Therefore we have to use it quickly and throw the rest out, it's the only safe way.

Good point.

That was my first thought. Preservatives, like those found in vaccines, can be pretty dangerous.

LOL.. that's a controversial issue. But for me, if the preservative or any other additive can be left out so much the better.

Update
Without changing the dose, my count went up to 97,000 yesterday after slight drop last week to 53,000. We decided to skip one week of Nplate and see what happens. I am excited now with a hope that my case could be a true acute episode. If it does not turn out to be so and if I have to stay on Nplate, I will seriously consider entering the clinical trials for protalex-100. By reading the article published by the company, I can not tell how staph protein piece (protalex) will increase the platelet but only can guess that staph protein injection might work as an allergy shot. So teaching the person not to respond to staph protein. I again guess there might be a similarity between platelet (epitopes) and the protelax. Please correct me if I am misunderstanding the action mechanism of the protalex. And if it works like an allergy shot (desensitization to staph protein), protalex would cause the least side effect (which should be not being protected from staph infection) compared to others like Nplate (clotting issue) or other immunosuppressant (increased chance of infection and cancer).

8/13. 19000
9/4- 10,000
9/11 14,000
9/18 10,000
9/23 14,000->1st Nplate 1mcg/kg
9/30 Only count 37,000 no injection
10/2 no count 2nd Nplate 1 mcg
10/9 - 40,000 and 3rd 1 mcg
10/16 - 63,000 and 4th 1 mcg
10/23 - 53,000 and 5th 1 mcg
10/30 - 97,000 and 6th 1 mcg
---skip one week---
11/13- ????

I don't know that skipping a dose was a good idea, but I guess you'll find out soon. The only way to know if you have acute ITP is to go without treatment and maintain normal counts on your own for a period of time.

I couldn't find enough information on Protalex to figure out what it does. I'll have to keep looking. I think I posted an article about it; I'll have to look at that one. I was interested in side effects and couldn't find that info. All I could find was that it aids in stopping platelet destruction and binds to B cells. That seems a bit similar to Rituxan. I don't know at this point how it differs.

I found the article. Still doesn't tell me much.

Here is the clinical trial criteria:

clinicaltrials.gov/ct2/show/NCT02401061

clinicaltrials.gov/ct2/show/study/NCT02273960?show_locs=Y

This is the site I have looked. It shows where the testing sites are. I am close to Columbia Missouri where the recruiting has not begun.

If this (protalex) is what I think, there should not be much side effects other than initial flu like symptoms.

If protalex works, then, it may support the idea that allergy shots could be one way of ITP treatments. (Which means some ITPs could be the result of Staphylococcus infection as rheumatic fever with Streptococcus infection).

Another thought!

The staphylococcal protein may simply distract the antibodies that binds platelets. Again with the assumption on the epitope similarity between staph protein and platelets.

I'll be watching to see what results from skipping the NPlate. Hope you won't pay the price I've had to.
Each time I skipped a dose, my count crashed to single digits within the next week or two.
I just learned from a leading NPlate expert that the dose should never be skipped for any reason. Even though the prescribing info says to skip if the count exceeds 400, they've learned a lot in the intervening time since the info was written. The most the dose should be decreased is 50%, never skipped.

I found these two definitions of Protein A from Staphylococcus.

Protein A from Staphylococcus - any large organic compound made from one or more polypeptides, which are chains of amino acids joined in a genetically determined order by peptide linkages between the carboxyl group of one amino acid and the amino group of the next. They contain carbon, hydrogen, oxygen and nitrogen and usually sulfur, occasionally phosphorus.

medical-dictionary.thefreedictionary.com/Staphylococcal+protein+a

Protein A from Staphylococcus aureus has become an important tool in immunology and molecular biology due to its specific binding to the constant region of immunoglobulins (Igs) from most mammalian species. Many qualitative and quantitative techniques have been developed which take advantage of this ‘pseudo-immune’ reaction. In addition, solid state protein A has recently been introduced in medical therapy to decrease the amount of circulating immune complexes in sera3. In this article Mathias Uhlén, Martin Lindberg and Lennart Philipson describe the structure of the protein A molecule and its gene. They also discuss the possibilities for fusing the protein A gene to other genes.

www.sciencedirect.com/science/article/pii/0167569984900987

I'm not sure that we can assume that side effects will be mild or benign at this point. We'll have to see what happens in the clinical trials, and knowing long-term side effects is a long way off. We don't even know the true long-term side effects of Rituxan or the TPO's and they have been around for a while. Rituxan was around for a good 10 years or more before PML became a recognized side effect. These drugs can be harsher than they seem. All drugs have risks.

It is assumed that staph infections (or any infection) can trigger ITP. Viruses can also. I'm not trying to be a downer here, but this drug will have to prove itself to be safe and effective before I get too excited. The meds for ITP that only deal with destruction do not have the best overall success rates. Only time will tell.

I actually have discussed the biweekly injection with a hematologist who tested the biweekly injection of Nplate this year with his patients as it is not covered by an insurance in his country. I cannot wait to see what happens too.

How did the bi-weekly's go? That would be interesting to follow since the peak platelet count averages 7 to 9 days. Most people find that by the end of the second week (if they skip a dose), the count ends up being very low (if the drug is dosed properly to achieve a count around 50k). I guess we'll find out with you - keep us updated!

I sikpped doses all over the place when I was on Nplate. Not to start with and not with counts below normal, but once they were in the normal range I went to two weekly and then three weekly until I stopped altogether. I would never have dosed with a count over 400. In fact the UK guidelines say not to dose with a count over 250 and even that was too high for comfort for me. I wanted a count of 50 and not much more.

That would be a normal weaning off process if remission is suspected.

This is a tricky drug and it's odd that protocol isn't being followed. If they feel the protocol is out-dated, it should be rewritten. Otherwise, doctors can do whatever they want and that can be dangerous in some cases. I guess I'm a stickler for policy. We have doctors saying never skip a dose, and we have doctors skipping doses when they probably shouldn't.

I'm finding this discussion very interesting. My ITP has been in remission for 15 years now (due to allergy shots) but five years ago I came down with the autoimmune disease ulcerative colitis. It was bad for the first couple of years until I finally paid for my own stool test which analyzed all DNA in the stool and it found a huge overabundance of that type of staph. The doctors were useless and could care less so I had to fight it on my own via natural treatments. Don't know if it was in my bloodstream or not. Anyway, my UC got much much better (close to remission) and earlier this year I retested my stool and the staph was totally gone. Still not in a total remission but I'm now doing very well. This thread makes me wonder if it is all related somehow but I don't beleive I had the staph during my bout of ITP.

I agree Ann..I want a count of 50.. I started on 50mgc/kg of N plate with a count of 11.

After the first dose my count was 53 so my prednisolone taper started and count dropped to 24 after going down by 1mg/day.

Since then it has held between 62-76 on 100mcg/kg. . Pred down to 3mg/day last week. It will be interesting to see what happens this time.

Once I am off pred all together I fully intend to tinker to find the lowest possible dose to keep count as near to 50 as possible.

Anne

Forevertwentyone wrote: I will seriously consider entering the clinical trials for protalex-100. By reading the article published by the company, I can not tell how staph protein piece (protalex) will increase the platelet but only can guess that staph protein injection might work as an allergy shot. So teaching the person not to respond to staph protein. I again guess there might be a similarity between platelet (epitopes) and the protelax. Please correct me if I am misunderstanding the action mechanism of the protalex. And if it works like an allergy shot (desensitization to staph protein)...

It doesn't work like an allergy injection. Nothing to do with having staph itself, or ITP being caused by staph, nothing at all. It's just made from the protein of it because it binds to IG helpfully.

My understanding is that it seems to do two things..
Firstly it stops the white cells from destroying the platelets that are marked for destruction by the anti platelet antibodies. Secondly it causes some of the B cells to die. So a bit like rituximab, if there aren't any B cells there won't be any anti platelet antibodies made.

They've been working on this drug since at least 2006 so it would be good if it actually got somewhere soon.

I didn't think this had anything to do directly with staph, but couldn't find the words to explain it. Brain fail.

I was too optimistic.
The count is down to 23,000 (from 93,000) after skipping one week.
Now back to weekly injection.
I may try this again after the counts stabilized high (100,000?) for more than five weeks.

It is very inconvenient for me not being able to leave out of town more than a week. Well, we are considering Promacta for this reason.

By the way, I got the allergy test done. I will try to upload the picture here. I am "extremely" allergic to all pollens (grass, tree, weed) tested, which means my body does not know how to distinguish self and nonself, harmful and non-harmful and it is over reacting to so many innocent targets. This made me little worried as my ITP might only be the tip of iceberg. Well, I am trying to stay hopeful though, because the hope is another mighty medicine.

I will keep updating my progress.

Why don't you inject yourself?

My doctor and I thought self injection of Nplate is not officially allowed in U.S. Let me know if it is not true.

The allergy test picture.

I am still debating about the allergy shot. I have done it before when I was allergic to only one thing oak pollen. My hemotologist and the allergy doctor and one more ITP specialist, they all are against it. I know there is one success story here but one was not enough to convince my doctors. I still can choose to take the allergy shot but I am little afraid of stimulating my already-over-reacting immune system. I may consider starting the allergy shot when I get stable platelet counts for a while.

I do not think you can self inject in the US, but I would think your doctor could arrange for you to get the injection wherever you travel to. Might want to discuss that with the doctor.

Thanks for the idea. Actually my doctor is arranging an alternative location for the Thanksgiving Black Friday shot at the local hospital as his clinic infusion room will be closed. My trip often involves out of country to make things worse. I have an offer to take students with me to the country where I am originally from (and my mom is still there) next summer for 6 weeks. I still have time to figure out what can be done (or go into a remission-smile).