Prophylaxis

Isn't it that some antibiotics are more prone to causing c-diff than other? I am not supposed to take anything with potassium in it as mine runs high.

I take a probiotic every day - a capsule that doesn't need refrigeration - just feel it is good to keep things ok in there. Right now I'm on an antibiotic so need it for sure.

I wonder if some of the fatigue I felt & you are feeling wasn't due to prednisone making us "wired" and not able to sleep or sleep well.

The flu is really bad here too delta - just wash your hands a lot!

Unfortunately that high count of 401k didn't last but about a week, then count dropped. But prednisone did put me in a semi-remission for a number of years - a tetanus booster ruined that and then WinRho put me back in a semi-remission.

Things will level out and you will do fine!

I know I'm losing my mind. I thought Delta had the 401k count. Brain fog has been bad lately.

It's possible that some antibiotics cause C-Diff more than others, but it can also be caused by overuse. My sister had it once from two common antibiotics that she took in a row. I always need two to kick an infection so I worry about that, especially with the proton pump inhibitors. You just can't win!

Your potassium runs high, Melinda? Do you know why? Mine is always borderline low.

If you find your mind let me know how you did it and I'll try to find mine.

I should have said my potassium runs near the top of the range [my lab has the range as 3.5-5.0].

Will do!

Thanks again for all the helpful feedback. Especially Melinda and Sandi.

Platelets still in the 20 range after 2 weeks of pred increase. Hema agreed to try promacta at low starting dose 25 mg. He is keeping me on the Pred 60 mg dose as he says it can take weeks for promacta to work.

On Promacta website, found the most common side effects below. Hoping not to vomit and get diarrhea often. I don't understand why it would cause infections -- is this common?

Also, I just noticed that it says to avoid antacids. I'm on Nexium right now. Hema did not tell me to stop taking Nexium. -- Has anyone tried taking Promacta and Nexium concurrently?

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"The most common side effects of PROMACTA when used to treat chronic ITP are: nausea; diarrhea; upper respiratory tract infection (symptoms may include runny nose, stuffy nose, and sneezing); vomiting; muscle aches; urinary tract infection (symptoms may include frequent or urgent need to urinate, low fever in some people, pain or burning with urination); pain or swelling (inflammation) in your throat or mouth (oropharyngeal pain and pharyngitis); abnormal liver function tests; back pain; ?flu? like symptoms (influenza), including fever, headache, tiredness, cough, sore throat, and body aches; skin tingling, itching, or burning; and rash.

The most common side effects when PROMACTA is used in combination with other medicines to treat chronic HCV are: low red blood cell count (anemia); fever; tiredness; headache; nausea; diarrhea; decreased appetite; "flu" like symptoms (influenza), including fever, headache, tiredness, cough, sore throat, and body aches; feeling weak; trouble sleeping; cough; itching; chills; muscle aches; hair loss; and swelling in your ankles, feet, and legs. "
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I haven't heard many reports of vomiting or diarrhea, so you might be good there. As for the Nexium, that is probably because antacids can absorb medications so your dose wouldn't be correct. I have to be careful about the time I take my Acifex for the same reason; it has to be hours in between other meds. Some meds are time released, so taking a drug like that can interfere with the amount of drug that your body actually gets.

A week on promacta and counts are about the same. Doc says could take weeks.

Hi! How is the Promacta treating you? I honestly know nothing about it - hope it will kick in soon for you! What did he say about the Nexium?

I think side effects are mostly from pred. After adding promacta to the mix, maybe another headache or two. Doc said the nexium is to protect the stomach and is generally prescribed along with prednisilone here.

Glad you are doing well delta!

Reason I had asked about the Nexium is because you had asked about it:
Also, I just noticed that it says to avoid antacids. I'm on Nexium right now. Hema did not tell me to stop taking Nexium. -- Has anyone tried taking Promacta and Nexium concurrently?

When I was diagnosed something should have been given to me since on 60mg of prednisone - but no doctor told me and I didn't know. I guess I have a strong stomach

Melinda,
That's right. Apologies, brain fog from all the meds. Thanks for clarifying. Yes, I did specifically ask about nexium with promacta. Hema said nexium should not affect absorption as long as I give a few hours between taking them.

I hope to stop the nexium when I can lower the dose of pred. I'll have to ask doc about that.

If you didn't need it, probably best that they didn't put you on it. Seems it can cause issues in the long run.

Been on Promacta for three weeks (along with Prednisilone 60mg). Count went up slighty to 30k last week so hema dropped Pred dose to 30mg. Count this week is 19k. Doc wants to do another marrow biopsy to ensure nothing else is wrong.

delta when was your last bone marrow and the results? Do you want another one?

Can't recall your prednisone dose before now when you dropped it to 30mg.

And like I said - I know nothing about Promacta.

I just had an appointment with my new hematologist [she's ok] - she told me I have super platelets in that they are big and they are stickier, that my normal range is different than someone who doesn't have ITP.

Promacta can take weeks or even months to start showing a change. 3 weeks may not show much at all.

I used Promacta for 3 years. My records show it took me 2 months (8 weeks) at 50mg to reach 32k.
We then upped to a 75mg dose and it was another month before reaching 52k.
I would not expect to see much at all in only three weeks.

And yes.....new platelets are larger and stickier (they are new after all!). So we tend to have a lower 'working normal' count than someone without ITP (as long as production isn't the problem).


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weirdjack wrote: And yes.....new platelets are larger and stickier (they are new after all!). So we tend to have a lower 'working normal' count than someone without ITP (as long as production isn't the problem).

My understanding is that most ITP patients have a production problem as antibodies also attack the megakaryocytes that produce the platelets. The new platelets are still large and sticky.

Recently found my bone marrow results from many years ago - the bottom line for me is: "Thrombocytopenia with adequate marrow megakaryocytes, consistent with ITP. Normocellular bone marrow."

So I don't have a problem with production thankfully.

Maybe that is why a bone marrow test is a good idea - it does rule out some things.

Thank you Melinda, Jack and Ann for the advice.

Melinda -
I was on 60 of Pred. I had initial biopsy 3 months ago. How do they find out that your platelets are stickier than normal?

Jack -
Really good to hear from someone with long term experience using promacta. Makes sense to give it more time. How long did your doctor wait before increasing your dose?

Ann -
Thanks for the insight.

Jack - How long did your doctor wait before increasing your dose?

I took 50mg per day for 2 months, then the dose was upped to 75mg.

Note, I went back down to 50mg after about a year on 75mg. the extra 25mg only put me in the 55k-65k range...and dropping back to 50mg still kept me in the 45k-55k range (Promacta's normal).
Remember, Promacta is designed to keep you around 50k....not give you 'normal' counts (whatever normal may be this morning).
And eventually stopped taking Promacta due to its extreme cost.

Now.....keep in mind that everyone is different.


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My understanding is that most ITP patients have a production problem as antibodies also attack the megakaryocytes that produce the platelets. The new platelets are still large and sticky.

Wow....I suppose I am going to need to be much more specific when I type.
Perhaps I should have said, "As long as you are able to produce platelets in the first place".

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Actually, the bone marrow biopsy does not show whether or not production is adequate. That is believed by many doctors and is untrue. I asked Drew Provan and I questioned the PDSA medical advisers about this a few years ago, and this was the response:


"I have stated quite a few times that a bone marrow biopsy does not determine adequate platelet production, regardless of what we are hearing from our doctors. I have not been able to find any publications that state this. I asked the PDSA if they knew who could answer the question, and it was passed on to 4 of the PDSA medical advisors. This is the answer that one of them gave, the other three fully agreed with the answer:

"I dont understand why anyone would use a bone marrow test to determine whether a patient is a candidate for Nplate or Promacta. My guess is that the doctor making this statement believes that if the bone marrow is normal (normal number of megakaryocytes) or is consistent with ITP (normal or increased number of megakaryocytes) that this shows that the bone marrow is making an adequate number of platelets and that production is therefore "normal" and that the patient is therefore not a candidate for a class of drugs that increase platelet production.

Nothing could be further from the truth. A bone marrow is a static sample and does not tell the doctor whether the normal or increased number of megakaryocytes is actually producing platelets. A large number of studies over the past 9 years have suggested that the normal or increased number of bone marrow megakaryocytes in the ITP patient bone marrow is not producing platelets adequately. Rather these megakaryocytes are probably being attacked by the immune system and undergoing programmed cell death (apoptosis) and die before they have a chance to make platelets.

The bone marrow test cannot be used to determine whether Nplate or Promacta will be effective.

With regard to when to do a bone marrow biopsy, the new (and the old) guidelines suggest that in adults it is rarely recommended except in those who have not responded to initial therapies, those over 60 (to exclude myelodysplastic syndromes) or those contemplating splenectomy. I rarely see a need to do a bone marrow biopsy in most of my patients except for those who fail to respond to initial therapy and those older patients who might have MDS (again reserving it mostly for those who do not have a robust response to initial therapy or those who might have other cytopenias). In a patient who has responded well to initial therapy and will then go on to splenectomy, I dont usually see a need for a bone marrow."


pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

As the old statement goes: well shut my mouth and call me stupid

A large number of studies over the past 9 years have suggested that the normal or increased number of bone marrow megakaryocytes in the ITP patient bone marrow is not producing platelets adequately. Rather these megakaryocytes are probably being attacked...

"suggested" - "probably"
So it is not known for sure - speculation

Melinda:

I'd never want you to close your mouth and I'd never call you stupid! I posted this because it's important for people to have accurate information. Most doctors do not know this; they are still going by the old belief that normal amounts of megakaryocytes indicate adequate platelet production. I first questioned this years ago because certain patients were stating that their doctors told them that they were not candidates for N-Plate or Promacta because of the bone marrow biopsy results. Yvonne was one of them, so it was that long ago.

I do not have the quote from Drew Provan because it was on his old message board and I don't even know how to get to that any more. He did say exactly what these doctors said though. I know the words 'suggested' and 'probably' seem weak, but there have been many studies done on this over the years and the findings are certain.

The hallmark of immune thrombocytopenia (ITP) is autoimmune destruction of platelets in addition to suppression of platelet production by the bone marrow (BM) megakaryocytes. The diagnosis of ITP depends on demonstration of a platelet count < 100 × 109/L and may be found in isolation (primary) or alongside other autoimmune and medical conditions (secondary).

Beyond the effects on circulating platelets, these antibodies are also directed against platelet glycoproteins on the surface of megakaryocytes, inducing apoptosis-like programmed cell death and reducing platelet production.

asheducationbook.hematologylibrary.org/content/2013/1/276.full

I've never been able to actually find percentages regarding how many people have impaired production, but the articles seem to indicate that most ITP patients do. I would imagine the degree to which an individual is affected would vary based on antibody production and the degree to which the megakaryocytes are defective. That can also change over time, which can explain why some people become refractory to treatments that used to work and why some patients have remissions. There are several different ways the megakaryocytes are affected, but the explanation is complex and although I can somewhat grasp it, I can't explain it. Because of these findings, the bone marrow biopsy is even more useless as a diagnostic tool because doctors used to think that it confirmed ITP if the megakaryocyte numbers were normal. All the bone marrow biopsy can do is eliminate other disorders.

Thanks again all.

weirdjack wrote: I took 50mg per day for 2 months, then the dose was upped to 75mg.
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Jack,
During the two months you were on 50mg, were you also on prednisone? From your experience during this time, did your counts rise at all or even remain somewhat stagnant?
My count has been dropping but I assume it's because of tapering down on prednisone. Out of curiousity, I went in for another CBC yesterday and count is 10 (dropped from 19 three days ago).

"Jack, During the two months you were on 50mg, were you also on prednisone?
From your experience during this time, did your counts rise at all or even remain somewhat stagnant?"

I'm not much of a 'cocktail' person....I only used Prednisone by itself...and then only for the first 4 months of treatment 12+ years ago. I did not start using Promacta until 2009.

My experience with Promacta was nothing happens fast:
It took 2 months of 50mg to get from 4k to 14k.
And it took 5 months at 75mg to get from 14k to 67k (the highest I've been).

No wait, one thing does happen quickly with Promacta; count drops to 0 within a week after stopping.

delta I'm glad jack saw your thread and you 2 are communicating - nice to talk to someone who has experience with the treatment you are taking.

I did forget to include my standard disclaimer: EVERYONE IS DIFFERENT.

My experience with Promacta is not everyone's experience with it.

BUT SOME ARE MORE DIFFERENT THAN OTHERS! :whistle:

Thanks again all.

I appreciate not only hearing Jack's experience but also his sense of humor. It's nice to have some smiles getting through this.

One thing I noticed that is strange is my lymphocytes count has been steadily decreasing in the last few weeks. It usually hovers between 1.5 to around 2. It decreased below 1 and last check it was at 0.5. Wondering if this is something I should be worried about?

My neutrophils count is usually high (was told this is due to prednisone) and last check it was at 17.

Prednisone will throw off white cell counts. My rule is to never worry unless the doctor does. I can't remember the last time my CBC was all within range. I always have highs and lows. I don't worry.