My husband had his 6 month check and platelets were 946. They seem to be going up since he has been diagnosed in 2022. Is this the trend do they tend to come back down? Nurse said they will test VW if they go over around 1100. He has been having slight bleeding form gum and also pain in middle of stomach. She said spleen feels fine but it may be caused from the aspirin so she will tell doctor to prescribe anti acid tablet. I know he wants to obviously not be on medication yet as he is 37. I’m feeling a little bit upset. His diet is really good as we had to watch his cholesterol levels too but she said not lose more weight as that’s a red flag? Sorry just needed someone to talk to. Is it bad being on medication so young? Of course if platelets keep going up totally understandable.
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I am really new to this as my husband has only just been diagnosed recently. However, from what I’ve read , it’s good to get on treatment early to prevent/slow progression. My husband is 45 and is on Pegasys. We are in the uk.
we are in Scotland and because my husband has calr type 1 he was put on watch and wait. Did he get any side effects from the medication? Also what’s his mutation?
We are in England. He has pv. He’s only done two injections but not really any side effects so far. He was feeling so ill before he started venesections however so just happy to be feeling ok again. He had 4 venesections and now a month break until he is retested to see if numbers stay low enough.
Platelets can cycle up or down more than 100 with no related MPN reasons..but if his platelets are on a sustained increasing path then without cytoreductive medicine it is more likely than not that they will continue to increase (we are all different so one never knows but..)
Looking over my personal history my platelets were on a fairly consistent climb of about 100 per year for 5 - 6 years - I (Jak2+) was on aspirin, watch and wait (even with platelets at 950) as I was low risk (<60 (in my 40's at the time); no thrombotic events in history and no symptom burden) - what changed things for me was a spike from about 1,000 to 1,400 and bleeding at the gums - my MPN specialist said he thought it best at that point to go on some cytoreductive medicine as actually bleeding is a bigger risk than thrombosis/clotitng as platelets continue to increase.
One of the reasons I initially pushed for interferon as my treatment was my age - figuring I would likely need to be on the medication for (hopefully) decades - I preferred that over hydroxyurea (but again we are all different). I can say I am very happy on Pegasys (likely switching to Besremi) with little to no side effects and having it bring all my bloods into normal limits for first time in a decade.
If he is already having some bleeding, I would push to have his VW factor tested now and not wait for additional rise in platelets.
hello thanks for your reply. Yes that’s always the question what would be the best medicine for the patient to take at a young age . This so what worries me as all the side affects they come with. I’m glad you are happy with your medication.
I was diagnosed at 37, I’m now 49. My platelets hover around 900-1000. I’m on aspirin and venesections atm, but my latest appt with my consultant suggested I should be thinking about starting interferon. I know when you are younger, they prefer to watch and wait. I had an X-ray on my spleen to check the size, that might be worth pushing for ? Also has your husband had a bone marrow biopsy ?
Hi thanks for your reply . No he hasn’t had BMB we were told blood test is enough.she felt his spleen yesterday and said it feels ok. I’m just so confused
Hello thanks for your reply. I’m glad you are ok with your medication. I know it’s so frustrating as he’s only been diagnosed 2 years and the platelets already climbing.
Please do let me know how everything goes.Doctors will advise but I'm sure a consultant will go through pros and cons and help your husband weigh up risks.This forum is brilliant,everyone very supportive.
If he's not seeing a MPN specialist at the moment this might be the time to get a second opinion from one. Maz at MPN voice can help with the list of UK ones.
There are two MPN specialists in Edinburgh - working between Edinburgh Western and St John's Livingston. I've been seen at the Western since diagnosed almost 40 years ago and had exceptional care. Except for one blip during covid there have been specialised MPN consultants for about the last 10/15 years. There is also at least one at the Glasgow Beatson ( he is the one who also consults privately in Edinburgh). The online list is not comprehensive.
Hi, when I was diagnosed with ET jak2+ my platelets were around 1400. That was 8 yrs ago.
Over the yrs my plts have ranged from 750-1650, with no reason I can fathom out. In fact on several occasions whilst visiting the haematologist, I had 2 blood tests within an hour and each time, there was a difference of around 300 with my platelets. The Doc couldn’t understand it either and had no answer. Looking through countless research papers gave no answers either. Initially I tried aspirin but was not comfortable with that due to increased risk of haemorrhage with high platelets. I therefore reduced that myself to ½ aspirin every 3rd day and have continued with this for the last 5-6 yrs.
I also did not agree with the haematologist ( as he didn’t seem to be aware of the current research ) so I asked to see an MPN specialist. If you don’t have one yet, I would encourage you to see one.
The MPN specialist agreed with everything I was doing, even though my plts were around 1400 at the time. I was in good health, no history of clots etc, kept fit and active etc. she told me to carry on with what I was doing.
Hence, many years on now, I still just take ½ aspirin every 3-5 days. I last checked my plts a while back, still high, but it really has so little impact on my life, it doesn’t bother me.
NB: daily aspirin is not without potential harms. Anti acids can also have a negative impact on your health, as can cholesterol lowering meds. Cholesterol is very important for all your cells, in fact it’s so important your body makes most of it. Doctors can become out of date with their info too if they don’t actively keep on top of current research.
You have to weigh up all the pros and cons, listen to the advice, check it yourself, get second opinions, listen to your gut instinct, and then the patient makes the decision.
Pubmed is great for scientific papers.
Drugs.com for checking out medications .
Personally I gave up on my haematologist , especially as my condition wasn’t really a speciality of his. What I have found helpful though is an anti inflammatory diet, and I do take some supplements which I know make a big difference as it makes a difference to the one and only symptom I have - erythromyalgia, which is the only reason I take a little aspirin.
it is a journey. It takes a while to find the right path and everyone is different.
Hello many thanks for the message. I absolutely agree with you. I feel there isn’t enough information given. Wow that’s a big jump In platelets with the hour. His diet is 90% good and anti inflammatory but his cholesterol last year showed 6.2 then went to 5.4 and now it’s 5.8 so tried to manage this too. We don’t have an Mpn specialist either which is so frustrating. We are in Edinburgh.
I see from msg below that they were “told by my GP that if I let them get much higher I would have a stroke.”
If any medical professional tells you that, I would say ‘ interesting, can you please show me the evidence. ‘ ie a research paper, not just their opinion.
Then look at what they have given you (if anything) take it away and do your own research. Check the sources of info, always look at conflict of interest, to see if study was funded by a pharmaceutical company- personally I ditch those before reading. I didn’t find any link when I checked this out. Maybe there is a newer research paper to say there is a link. You need to question everything and that is what “ informed consent” means.
Your husband is still very young. Maybe you want a family? There are issues with taking meds for this . I have read with HU you need to use condoms to protect the partner from the toxic affects of the drug. Does it affect fertility??
Did the gp also test for vitamin deficiencies? Living in Scotland can lead to vit d deficiency quite easily. As far as I have researched, just about every cell in the body has vit d receptors ( inc. platelets and magakaryocytes) , so clearly it’s needed for all your body to function optimally. If your dr hasn’t done this, why not?
All obvious things should be ruled out first. I’m not saying vit d is a cure for ET but other symptoms may vanish when your in optimal health.
You also have a right to a second opinion, so demand to be referred to an MPN specialist and don’t accept no as an answer.
It was my wide ranging blood test results that confirmed to me that a lot of what I was being told was probably not based on fact. Sad but true. In dr training, they are told that by the end of their training , 50% of what they have learned will be proven to be incorrect. It’s just they won’t know which 50%. That’s what my doctor daughter in law told me anyway.
Honestly, the papers on pubmed are not difficult to understand. Just type in ET, high platelets for example and see what comes up. Much of it is free. Then you’ll be in the driving seat rather than the passenger. However long it takes for your husband to be happy with his decision is fine . Don’t be forced, cajoled, threatened, coerced. (If the dr is behaving like that, I’d report them , but that’s just me 😉 )
If the evidence proving it’s the right thing to do, it should be clear for all to see. Nothing hidden. No questions unanswered. No uncertainty. Take your time .
Regarding cholesterol, I can highly recommend the books written by Dr Malcolm Kendrick. These will answer all your questions on this topic.
oh one other thing I was told by the MPN specialist that aspirin permanently deactivates the platelets. The platelets are replaced at rate of 10% a day, hence the need to take daily aspirin is not really necessary. ( personally I think they replace a bit quicker than that in et , maybe that replacement rate is for normal folk, but I’m just guessing )
Thought that was quite interesting. Maybe a question to ask your husbands doctor ?
Hi from Australia, where my platelets have been increasing for 5+ years and it is a constant battle between the medication and the platelets. I got to 1050 before I gave in and was told by my GP that if I let them get much higher I would have a stroke. So for me there was no choice really, your body adjusts to the Hydroxyurea and I also developed Gastritis from the Asprin, so now I take Somac every day which is a prescription drug for stomach acid complaints. I now take Interferon injections, in the hope that will be more effective. My Haematologist manages everything, I was seeing her every 6 months now I see her every 3 weeks. The platelets never stop increasing (well as far as I know) and you need to work with a good Haematologist to manage it all. Many of us live with this, so I hope you take some comfort in that,
It is normal for platelet levels to vary. When not on cytoreductive treatment, my platelets ranged from the 500s to 700s routinely. When something was going on to trigger reactive thrombocytosis, platelets could range as high as the 900s. Anytime my platelets went were near the 800s or above, I would see an increase in hemorrhage (bleeding/bruising). It is worth noting that thrombocytosis can cause an increase in hemorrhage even when Acquired von Willebrand Disease is not present. Note also that this is a side effect of aspirin.
Regrading weight loss, it sounds like the nurse was referring to decreased food intake due to early satiety, a splenomegaly issue or possible gastric distress from the aspirin. Suggest getting clarity from the provider,
Not sure if your husband has a history of high cholesterol. If so, that is an issue that need to be monitored in the context of a MPN. If his health is otherwise good and there is no history of thrombosis, then with CALR positive ET, he would likely be considered low-risk and cytoreductive medication would not be indicated.
Note that many of us manage the MPN for many years. I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. I have never had a single incident of thrombosis. Managing the excessive systemic inflammation that is part of the MPN has been more of an issue. Fortunately, I have found ways to manage that issue.
Hello Hunter thanks for your informative reply. I really appreciate it. We were never aware of his cholesterol until it was picked up last year at 6.2 then 5.4 and now 5.8. He is classed as low risk. Nurse said medication would probably be from 1500? I’m just a bit nervous and worried hoping the platelets settle.
The CALR mutation typically is considered lower risk for thrombosis. The reason that the 1500 number is used is actually to associated risk of hemorrhage that increases as the platelet level gets higher. While there is a linear relationship between platelet levels an risk of hemorrhage, there is no linear relationship with risk of thrombosis.
As I understand it, total cholesterol over 5.5 could be concern. The ration of LDL/HDL does matter. Best to consult with a MPN specialist about whether there is concern in this regard.
make sure you get him to see or speak to an MPN who are experts on our complaint. Also gastro resistant 75mg aspirin protect stomach. Take with food at breakfast . Or mornings . But definitely get more advice from MPN Dr. Julia uk. 👌
So sorry that this is rather alarming but take heart as there is loads of good advice on this site. More, importantly plenty of support so do keep in touch as sharing information helps us all. Also I have ET since 2012 and I am 63 and lead a healthy life mostly, except for today when I have been to see a friend and had two glasses of Prosecco. Take care of yourselves and let us know how you get on. Xx
Do keep in touch and let us know how things go. Hopefully, you will get some good advice and as Hunter says, the more informed you are the more you can get out of the appointments. Take care.
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