low platelets

[artydutch]

My bloods came back with platelets considerably low at 83 10*9 L. Bottom of normal range for the lab is 135. Two weeks ago they were at 112. They have been low for a while but nothing below 106.

I am in the Uk and have PMF intermediate 1.

I do 2 week blood monitoring for another auto immune condition for a different hospital and consultant, as I take Azathioprine, so my haematologist is not aware of this. I have been taking this medication since April at what is still a low dose. As it is weekend can this wait until Monday or should try and I contact him today?

[hunter5582]

Is your hematologist aware that you are taking a drug with a Black Box Warning for hematologic toxicities that include thrombocytopenia? In the context of MF, I would think this would be a serious concern. Suggest that you should send word via the on-call system ASAP. Let the hematologist and rheumatologist decide whether this needs an urgent response.

[artydutch in reply to hunter5582]

I am sorry I have confused you. My interstitial lung doctor has informed my haematologist and my haematologist approved the prescription of the drug as I need it for sarcoidosis. However he does not know of my recent blood results as these are requested by the ILD specialist and are published on a different IT system that does not integrate with his hospitals system. What I am asking is does a level of 83 need intervention. I do not have a follow up until after Christmas with the hematologist and wonder if I need to bring it to his attention. Regrettably I have no integrated specialist here in the UK. I am the one who exchanges information between specialist, a responsibility which I would prefer not to have. I know the DIPPS PLUS scoring system is partly based on platelet numbers and wonder if this changes risk scoring.

I would appreciate any advice regarding my platelet numbers. Thank you in anticipation!

[hunter5582 in reply to artydutch]

I am glad that the docs are all aware of what each other are doing. It is quite common to have to serve as our own case manager to ensure collaborative care. I have actually come to prefer taking on this role. I have an powerful self-interest in the outcome of collaboration. If I take responsibility for making it happen I know that it will occur.

You definitely cannot wait until after Christmas to respond to the level of thrombocytopenia you are experiencing. Your hematologist should be notified ASAP. You should also be mindful of the increased risk of hemorrhage. Note these precautions.

Avoid activities that could cause injury. Ask your doctor which activities are safe for you. Contact sports, such as boxing, martial arts and football, carry a high risk of injury.

Drink alcohol in moderation, if at all. Alcohol slows the production of platelets in your body. Ask your doctor whether it's OK for you to drink alcohol.

Use caution with over-the-counter medications. Over-the-counter pain medications, such as aspirin and ibuprofen (Advil, Motrin IB, others) can prevent platelets from working properly.

mayoclinic.org/diseases-con...

Your hematologist can do the best job of evaluating your level of risk and making recommendations about appropriate next steps.

Please do let us know how you get on and what you learn.

[artydutch in reply to hunter5582]

thank you for your advice. I agree that it is wise to collaborate care between doctors. I see gastro enterology, ILD, cardiology, orthopedics, rheumatology, ENT and Onco Hematology. I am not medical but inform myself as much as I can. I just feel it is an extra time consuming burden. I keep a spreadsheet of my blood results and share these as I have rubbish veins. Often it is hard to get any blood without multiple attempts. My care involves 4 hospitals including a private cancer unit. Despite my plea to all medics to put all my notes on the most modern IT system, this seems for some reason not possible. I had a heart attack in 2019 and on clopidodrel, so not ideal at the moment. I also have multi system sarcoidosis and again need to be on immuno suppressants. I have tried steroids and methotrexate and my liver enzymes went high, hence the switch to Azathioprine, 3rd line choice.

I will be ringing onco Hematology tomorrow morning and have already emailed. No reply over the weekend so far. I marked as urgent, but worry my mail will get lost in the mountain of emails consultants get. I wish medicine was a 7 day affair!

I may leave of clopidodrel and as a low alcohol consumer lay of the the odd glass of wine too.

I am just wondering if my 8 Pfizer vaccine a week ago affects platelet counts?.

I have been Azathioprine since April and so far platelet counts have been low, but nothing like the drop from 112 to 83.

[hunter5582 in reply to artydutch]

You have just as many "ologists" as I do! I see all of the above but sub in a NF-Specialist/Neurologist for the ILD doc and add a Dermatologist. Some of them live within the same electronic medical system but not all by far. Collaboration and information sharing only happens if i make it happen. Thank goodness for functional patient portals. It really helps with the communication and information sharing. It is still time consuming at times but worth it.

Hope you get answers ASAP.

[artydutch in reply to hunter5582]

Sorry t read you also have so many different issues in addition to you mpn.

My doctor has come back to me with the advice to observe more closely and to do a repeat test next week, but is not overly concerned.

I also queried if reducing allele burden through using Rux is a good thing and focus in itself, besides improving symptoms. I assumed less % of mutation would makes a difference in prognosis and extend survival. The increased likelihood of ITU and other infections on Rux is something I do not fancy, but would do if reducing the allele burden was a big positive.

I have not started Rux as it looks that I may not qualify to get the drug on the nhs. The Nice guidance states that I must have an enlarged spleen to qualify.

What have you understood is the value of reduced allele burden?

I am very ambivalent about investing time now to pursue a campaign, trying to get access to Rux, as very low on energy. All so difficult to understand and grapple with. Thank you, for always being so reliable in responding to queries.

[hunter5582 in reply to artydutch]

There is an emerging consensus that reducing allele burden is a significant endpoint. I am amongst the people who believe that it is an important and worthwhile treatment goal based on reviewing the research and hearing MPN experts discuss the issue. Allele burden is related to disease progression and symptoms burden but it is not an absolute correlation. Some still debate whether allele burden matters.

The evidence that RUX can reduce allele burden is relatively new. I have not looked as extensively at this information as I am using Besremi to treat PV.

You would be correct to have a concern about combining drugs and the potential interactions. epocrates.com

Monitor/Modify Tx azathioprine + ruxolitinib monitor CBC: combo may incr. risk of serious infection, myelosuppression (additive effects)

Note that this does not mean you cannot combine these drugs but it does mean careful monitoring and dose adjustment are needed.

I would not suggest taking RUX or any other drug for the sole purpose of reducing allele burden. This is only one of the important treatment goals. What matters is reducing risk of progression. Allele burden is a possible surrogate for this risk. Effectively managing current symptoms and improving quality of life is equally important. Reducing risk of thrombosis or hemorrhage is vital based on what your risks are.

Repeating the labs in a week makes very good sense. We almost never want to base a treatment decision on one set of labs.

I can certainly understand flagging energy to invest in campaigning for something if you are not sure that you want it. Suggest reviewing some key questions.

What are your primary treatment goals? Examples - Preventing progression/extending survival. Preventing hemorrhage risk. Reducing symptom burden. Which symptoms are most bothersome? What are your priorities? What risks are you willing to take to achieve the goals/priorities you set? What are all the the treatment options available to achieve your goals, including clinical trials? Which option do you prefer?

You have a complex case and the optimal treatment plan is not clear-cut. When you are clear on your treatment goals, risk tolerance and treatment preferences, you can have an informed discussion with your MPN care team and decide on your next steps.

Wishing you all the best.

[artydutch in reply to hunter5582]

I am sorry I have confused you. My interstitial lung doctor has informed my haematologist and my haematologist approved the prescription of the drug as I need it for sarcoidosis. However he does not know of my recent blood results as these are requested by the ILD specialist and are published on a different IT system that does not integrate with his hospitals system. What I am asking is does a level of 83 need intervention. I do not have a follow up until after Christmas with the hematologist and wonder if I need to bring it to his attention. Regrettably I have no integrated specialist here in the UK. I am the one who exchanges information between specialist, a responsibility which I would prefer not to have. I know the DIPPS PLUS scoring system is partly based on platelet numbers and wonder if this changes risk scoring.