Two months ago I had a sudden fall in platelets, out of the blue I thought. My since long ITP trombocytopenia had been quite stable in platelets for quite a time, treated with low dose prednisolone and eltrombopag( Revolade). Easter came with terrible toothache, preliminary fixed acute by dentist. He told me the tooth was dead and had to be extinguished or root canal treatment. When tooth was going to be extinguished my platelets had dropped to 30K. With high dose Prednisolone (30mg) the platelets increased to 123K, in two days! Tooth could be extinguished. All well I thought. Of course not. Two more major drops in platelets during the past weeks, and my poor heart (with serious heart condition) is trying to cope with prednisolone. Difficult to adjust dose. Platelets jumping between 53 K and 360K. I think it is going to get more stable, once the hole after the tooth has healed. Which is not yet. Problem is my heart to cope. One day at a time. Beware of your teeth!
Sudden fall in platelets was tooth related - CLL Support
Sudden fall in platelets was tooth related
I second that! Take care with your teeth! I had a blood infection from one infected tooth once, and it was no small thing to recover from!
One thing I am wondering is about your old accordion. I love that you play the accordion! Music is so healing. But could your friend the accordion be part of your health problems? I ask because my husband has an ancient one from his childhood and I tried to play it a few years ago, but it had a musty smell and I read online to beware of playing old accordions because they can have a mold inside. Since you are having these lung issues I wonder, could you possibly get a new accordion to play? Music is so lovely to have in your life, it is uplifting, but if your lungs have been an issue for a long time, maybe it is time to invest in a new accordion, one that doesn't have mold and spores that might be harmful to you when you play it. I play the violin, better than earlier in my life, I had to give up playing my old one, it had a crack, but my husband bought me a nice new one and it is a good friend. I still keep my old violin because it reminds me of my parents, but it is the new violin that I play now. I would love to know how to play the accordion!
What a nice cousin you have! I have eaten glutenfree and milkfree and only grass fed meat for the past 8 years. Lots of vegs. Still ITP. My CLL is quite calm though, after one year of Venetoclax. I had serious lung problems COP post covid 2022, but they resolved with heavy prednisolone. So now I have no lung issues. But serious heart failure, even after by pass surgery last year.. My accordion is hardly to blame for any of my health problems. I play mostly Swedish folk tunes. But recently I try to learn the beautiful love theme from the Godfather ” Parle pui piano” and italian song ”Viene sul mar”. Thats challenging!
Best wishes
Christina
Accordion,
Were you given a medical directive or diagnostic statement with regard to the platelet drop followed by the platelets rising after the prednisone? I am curios to understand the diagnostic measures, treatment logic, and mechanism of action that produced the desirable observed response.
Glad you are experiencing progress,
JM
Hi Smakwater! Long story, medication is guided by my dr, since long specialist in hematology. Trombocytes are very unpredictable, but this is what I think happened. The drop after the tooth extraction was due to the bleeding and extensive stress from the extraction, ITP beeing an autoimmune disease, reacting to all sorts of things. I was on prednisolone 15mg, It was weekend, so blood work after 3 days -platelets had dropped (from 123K)to 53K. Dr called. Fortunately I respond fast to prednisolone. Next day on 25 mg they had increased to 150K. Slowly tapering prednisolone. Three days later 295K, four days after that 360K! 7,5 mg prednisolone and had to cut down Revolade to 25 mg. Revolade is very tricky to adjust, takes 10 days to kick in / kick out. Following weeks falling trombocytes, blood work twice a week. My dr away and I didnt at all agree with the new dr in charge. When platelets had fallen to 87K I started, (on my own decision) 12,5mg prednisolone and increased Revolade. After three days, this Friday platelets were 118K. My dr, then back on duty, calls and agrees with me. Again slowly tapering prednisolone waiting for increased Revolade to kick in. Having serious heart issues, it is a frightening battle between risk of bleeding and risk of clotting. I have to take some bloodthinners after my by pass heart surgery. My thrombocytes should be 100-150 , estimated by my dr. If they fall very low IVIG helps, but that is only a temporary solution lasting for around two weeks. So if not too low better to adjust with fast working prednisolone, until Revolade has kicked in. Revolade comes in tablets 50 mg and 25mg. Right now I alternate between 50 /25 every second day. Hope to go down to 50/25/25 every third day, after slowly tapering prednisolone,(cant be tapered fast.)Me and my heart dont like any of those medicines, but I have no choice. Next blood work on Wendesday, I can see the result on internet in the afternoon same day and keep track on all tests and what medicines I take in a small diary. No way I could remember otherwise. I asked my dr where all the platelets come from, when they can increase/decrease so fast. ”You make them fast, in your bone marrow he said, but then you spoil them .” Would be wonderful to know how to not spoil them!
"Revolade is a tablet or suspension that contains eltrombopag, a substance that stimulates platelet production in the bone marrow" drugs.com/uk/revolade.html
Our spleens are platelet (thrombocyte) reservoirs; "In healthy individuals, approximately one-third of total platelets (thrombocytes) are stored in the spleen. In health disturbances followed by spleen enlargement (splenomegaly), the amount of platelets sequestrated in the spleen increases up to 90%, resulting in thrombocytopenia (a low number of platelets in circulating blood)."
kenhub.com/en/library/anato...
With the auto-immune condition ITP, unfortunately we make antibodies that attack and destroy our platelets, which is hopefully controlled by prednisolone and IVIG. If those interventions fail, a splenectomy usually works, but then you lose your emergency blood reservoir, so you are at higher risk of infection, bleeding, etc. Sadly, we are at a higher risk of blood related auto-immune conditions with CLL.
Neil
Thank for providing the substantiating explanation Neil.
Thank you Neil. I was offered splenectomy nine years ago but was too scared of getting more infections. I am quite aware of the fact that eltrombopag is not meant for use in ITP secondary to CLL. But at one time some years ago, running out of options, there was a clinical trial in the US, and we decided to try, outside trial. It worked, but I doubt the long time side effects. But that is were I am today. All these crossroads in life! Never know what is best, if the past decisions were right.. All I know is that it is important to have knowledge, as this site has taught me. Thank you for all your engagement! Christina
Between your response and Neil's overview, I think that I might now understand what your doctor's reasoning is. It is now more apparent also that you are stating rather than inquiring.
Thank you for the detailed insight on your condition and how you are acting on it.
I was glad you asked. My first aim was to point out awareness of the importance of good teeth. And of course to get some comfort in sharing, as always, on this site. We all have so different stories, but there are always things to learn. And to get comfort. All the best! Christina
Time to share
Checkup - another six months done
Fluctuation of Platelet Count
7 month on Ibrutinib 
