Hi all, Gp called me in for my covid (Pfizer) booster jab yesterday. Just the usual sore arm. I'm now as protected as I can be! I work for the nhs and generally it feels a safe environment as it still the trust's policy to wear masks and keep distancing from colleagues but I do fear what this winter will bring. Been on daily anagrelide and aspirin for ET jak2+ for 18 months. It's been slow progress but platelets are now sitting at 570 (from 850). Consultant wants them down to around 400 before he would consider me taking a break from immunosuppressants. I have tried double dosing as suggested by haematologist, as he said platelets should be coming down quicker, but side effects are too bad. Should I stick with it or ask to try something else? Not sure how quickly platelets should be dropping. Or maybe come off altogether but keep taking the aspirin. All other bloods are normal. Have consultant appointment next week so I'm wanting some advice from you guys please. So pleased I've had the booster jab!
Sue
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Not sure which med you are taking. Generally, hydroxyurea has a more rapid response than PEGylated Interferon. Also not sure why the doc wants the platelets below 400. Many docs recognize that there is no particular value to having platelets at a "normal" level. You would already have reached the cytoreduction target now used my some of the leading MPN experts when one is used. (600K) .silvermpncenter.weill.corne...
Treatment for ET is about controlling symptoms and risk. It is a balancing act factoring the risks and toxicities of the meds with their benefits. I would suggest reviewing you treatment plan with a MPN Specialist to see if you are on the right course for managing your case of ET.
Glad to hear you received your third dose of the vaccine. I had mine a few weeks ago. It is reassuring to know we have a better chance of resisting the virus.
Thank you, I knew I could rely on your wise words! At the beginning of my ET journey 2 years ago I was out on hydroxurea but it didn't agree with me. Awful unbearable side effects I was off sick from work for 6 weeks then I was put on anagrelide to control ET symptoms.. Severe itching, bone pain, fatigue to name a few. But taking anagrelide comes with its side effects namely tachycardia, tremors, insomnia. I will certainly discuss further next week. Question: if I decide to drop the anagrelide would the platelets start to rise again? If so, how quickly?
If you stop taking anagrelide then you would expect your platelets to start rising. More significantly perhaps, you could expect a return of the symptoms that were so problematic. How quickly is impossible to say.
You may want to consider your other options for treating the ET. PEGylated Interferon and ruxolitinib. Ruxolitinib is well know for its efficacy in treating pruritis and other symptoms associated with MPNs. PEG could also be a consideration and is considered a first-line treatment option for ET. Many docs prefer it to HU or anagrelide.
Like you, I am HU-intolerant. I am doing quite well on Pegasys. It is effective and I have had no side effects at all. I am actually at a very low dose, 45mcg/week. Not everyone responds as well as I have or tolerates PEG as well. I am quite fortunate.
You do also have the option to continue the anagrelide at a tolerable level if it is controlling the symptoms. If you are comfortable with a cytoreduction goal of 600 and the absence of bothersome symptoms, then you may not need to change anything. If you would prefer one of the other options, then that is your prerogative. It is up to you to set your treatment goals and define what risks/adverse effects are acceptable. It is your preferences that must drive the treatment decisions.
I’ve been taking Hydroxycarbamide for the last 18 months, since diagnosis. My platelets are now steady at around 300, and have been able to take 1 less per week than before! I take a double dose 2 days per week now, rather than 3, and am hopeful that it might be able to be lowered again in the future.I also struggled with the double dose when I started it after my platelets weren’t really lowering as far as my haematologist wanted. I had a strong incentive to cope as I was waiting for an operation, that couldn’t happen until my platelets came below 500. I found, as much advised on this forum, drinking a big glass of water when I took the tablets helped, taking them before going to sleep too, as could sleep through some of the effects. I also take the double dose on the days of the week where I don’t have much on the next day.
Thank you for response... I do drink plenty of water throughout the day. Sleep has been an issue since taking anagrelide. My body feels like engine 24-7, like mini tremors running through constantly. Ive had thyroid checked, nothing. Thoroughly checked by a neurologist, nothing. So I can only put it down as another side effect! I can't wait to come off the meds to test whether the tremors leave me!
I’ve been diagnosed with essential tremor- another ET….lolGet trembling hands, stammering when it is bad, but inner trembling feeling lot of the time. I thought it was anxiety, as that can be a cause. The inner tremors actually made me feel more anxious, which worsens it, so stuck in a cycle. Getting a diagnosis helped me realise it isn’t anxiety. Our tremors sound similar but also different as you’ve seen a neurologist, and not gotten the diagnosis I’ve been given.
I don’t take analgrelide, but the Hydroxy I’m on could also be a factor. A suggestion on here previously was to take extra thiamine, vitamin B1, as that helps neurological processes. Also magnesium, as that helps the body absorb thiamine. Hydroxy depletes the body of both, I don’t know about analgrelide. My pharmacist me tablets that are just thiamine, and advised magnesium spray as it’s absorbed better through skin.
I haven’t been taking it long enough to have an effect yet, will take a month or two to see if it eases, but worth a try.
It’s not easy, living with the symptoms and side effects, and trying to figure out which it is and what can be done to ease them. Feeling for you!
Hi, the neurologist actually diagnoses essential tremor! So I may have 2 ETs!! But I am not so sure as it started as the same time as I started the blood meds, first hydroxycarbide and then anagrelide... Still have this tremoring... So I'm keen to experiment and stop all just to test whether it's the actual meds or not. I will be satisfied then. It's the worst thing, stops me sleeping, wakes me up every hour or so when I do get to sleep. Not so bad when I'm busy but when I'm relaxed I notice it more but its there 24/7 and I noticed it worse when I have double dosed. I feel for you too!
My platelets go from 350 to 850 up and down. I have to take Anagrelid capsules separately, else I get heart problems. I can’t take HU or Interferon. I take 3 capsules when under 550, 4 cs when up to 750 and 5 When I rise above 800. We try not to go above 750.
What makes my platelets rise is higher vitamin K intake, stress (terrible), too much liver detox, which basically can wipe out the Anagrelid. I did an intensive detox last year and the platelets jumped to 1150! (I was terrified since I’ve had 6 small TIAs). I got that down to 700 in 10 days. The six Anagrelid were really hard on my body.
Now I do detox once a week, early in the morning and start my meds and supplements those days, 4 hours later.
Important is to have quality of life and keep a good eye on the platelets and what you’re feeling!
It’s good to have a really good natural doctor to guide You on the detox. There are all kinds. I do an extremely bitter tea of 7 different herbs. Yuk, but works, at the same time, some homeopathic drops, zeolite powder. In the evening, some activated charcoal to clean out whatever’s been taken out. Make sure your stool is moving daily, else what your trying to detox will get reabsorbed by the large intestine! Details are always important! 😁😉
I am intolerant, tried that first for 6 weeks. Could not even go to work with it so they stopped and I went straight on anagrelide. It's a slow journey but at least the platelets are going down.
First, thank you for your work in NHS! Sorry, I can't help with anagrelide. I can only tell you that when I first went on to hydroxy it just took about 3 weeks for the platelets to come down below 400. Glad you have had your booster jab -I was wondering if Pfizer was the same as you had on previous injections?
Thank you! I love my work and it was terribly difficult for me to shield at home for all that time. I felt as if I was letting the side down. But hopefully I won't have to do that again. Yes all 3 were Pfizer. No side effects except arm soreness for a day or two. My consultants goal is 400 so I will probably persevere with the same dosage until the end of the year and see where we are at. I would like to take a break from the meds though...
Hi, I was placed on HU 2 months ago for PV. My platelets went from 620 to 380 in 2 weeks then to 250 two weeks later and then two more weeks later they went to 152. So the HU worked very fast on the platelets and WBC. My hematologist said these two lines would be affected first and the RBC's later which appears to be happening.But if you can't tolerate HU it would be up to your hematologist to determine the next best treatment. Hope you find a solution soon as it seems you are having symptoms. Good luck to you and please let us know how you do. Best.
By the sounds of it I'm not making quick progress! Platelets are the about the same as 6 months ago... Sometimes I do wonder why I'm putting myself through taking these meds if it's not really improving platelet levels. It's seems as if I am maintaining at around this level. I wouldnt mind so much if I had less side effects. I tried upping the dosage but I just can't tolerate. Will talk to my Consultant next week.
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