Hi, I’m newly diagnosed. My platelets are around 700 so not massively high. For the past couple of years my brain fog has been getting increasingly worse and daily tasks seem to be taking a long time as I loose concentration easily. I also have pains in my joints.
Do you think these could be symptoms?
Many thanks in advance xx
Hi Edinburgh_Unicorn. I’m sorry to hear of your symptoms. I was recently diagnosed with ET, too, and have a bit of brain fog and some mild bone pain, as well - although not too bad yet. My doctor said he believes they are symptoms of my ET. I would discuss your symptoms at your next appointment, and let your doctor know how often these issues arise, and how long they last. It will help him or her understand the degree of symptoms you are experiencing. Wishing you a peaceful evening!
Thank you GrammyG, and sorry to hear of ur diagnosis too. I mentioned the joint pain to the doc at the last appointment and he said he didn’t think they were related, and there could be any reason for the brain fog such as anxiety etc. And re the joint pain he said it would likely be osteoporosis or similar so speak to my gp. He wasn’t too helpful. He also said that my next appointment would be in one year, whereas the Heam consultant who diagnosed me said I would have my bloods checked every 4 months. Confused!Thanks again for taking the time to reply to me x
Yes to the symptoms being related. MPNs are at the core inflammatory disorders. Dysregulation of the JAK-STAT pathway causes the overproduction of inflammatory cytotkines. This is thought to be responsible for.many of the secondary sympto.s we experience.
Hi are you on hu as when I first started taking them to I had these symptoms but they do settle down after a bit I to have et jak2+ I am also in Edinburgh I have seen many a consultants come and go some of them have retired and sadly one passed away she was fantastic I saw her as a junior doctor then registrar then consultant her replacement was really good but he's now in Leeds and for the moment I have seen a Dr muang all at the wghStay safe
Scottish terrier xxx
I was diagnosed 8 weeks ago and have same JAK 2 mutation the brainfog started to lift about 2weeks ago I am on HU
Hi, sorry to hear of ur diagnosis. Was ur brain fog bad and how long did u have it? I am having to work a couple of hours extra each day to get through my work. Everything (even household chores) are taking longer as I feel I’m all over the place. Do u think the HU helped lift it?Thank you for taking time to reply to me xx
My brain fog started after a fortnight on Hu was awful I couldn't remember halfway through a sentence what I was talking about it still takes me a lot longer to do housework etc and I am so tired by 8pm I am not use to this I will discuss at my next appointment as they want to increase my doseage my platelets are 453 I am not accepting any higher dose before HU I had no symptoms I now have cramps in my feet and legs weight increase I am monitor every 4weeks
Hi Scottish Terrier, lovely to hear from someone else in Edinburgh with the same diagnosis. Any local tips would be greatly appreciated. Do u know of any other people with this diagnosis locally or are we unique 🤣I am only on aspirin at the moment. I was diagnosed by Dr Alice Klauser at the Royal and I’m pretty sure she said she specialises in MPN’s, but there was quite a lot of info to take in that day so I could have that wrong. She told me I need to get my blood checked every 4 months. Then my next appointment was at the Western where the doc told me I wouldn’t need another blood check or appointment for 1 year. Does that sound normal to you? I mentioned about the brain fog and pain in joints but he didn’t think they were related to ET. Do you know if symptoms of ET get worse the higher your platelet numbers are? Mine are not too high compared to others. I’m just trying to learn a bit more about this. Thank you for replying Scottish Terrier xx
Hi great to meet you I have always been treated at the wgh since diagnosis in 1994 but I had problems with aspirin so got changed to dypridamol which I take one in morning and one at night I initially was every six months and bloods got done at clinic and weight to the main problem came after a holiday in the states a couple of months after I was in pain in side loss of appetite and loss of weight and off colour sore to breathe I was given a ct scan in the November didn't get results from gp and I was told that I had a clot in the artery leading to the liver so as well as my haematologist who at the time put me on hu although had another two it was every three months visit until I saw a Dr muang who has changed it to 6 months visits and also see a gastrointestinal consultant who keeps an eye on the liver I think I was so lucky it was the liver and not the lungs or brain or heart as the liver regeneration it cures it self there is some else who has pv he has had same consultants as myself I also think there is a mpn nurse specialist as wellStay safe best wishes
Scottish terrier
Some people do find that constitutional symptoms may correlate with platelet levels, but not all do. The one symptom that definitely is associated with higher platelet levels is the risk of hemorrhage, which goes up when platelets are in excess of 800K (for some people).
Bear in mind that it is not the number of platelets that are the issue for many of the symptoms we experience. It is more about how the blood cells behave and the other changes that deregulation of the JAK-STAT pathway causes. Lowering your platelet levels will not necessarily lower your symptom burden. In the absence of risk factors, cytoreduction is generally not indicated due to the intrinsic risks associated with cytoreductive therapies. However, if you are symptomatic then there are various treatment options that may help.
I have found curcumin to be very helpful in managing joint pain. It works better than NSAIDs and is considerable safer.
The difficulty in concentration may have a number of causes. I would suggest starting with a complete nutritional analysis as there are some deficiencies that can cause this problem. In my own case, phlebotomy-induced iron deficiency caused a bit of this problem. Some people find that some of the MPN treatments do help with concentration, but some of the meds can actually make this problem worse.
Perhaps others can weigh in on Dr Alice Klauser's expertise. If it turns out she is not a MPN Specialist, you can find a list here. Dr. Mark Drummand has been highly spoken of here on the forum.
All the best to you.
So...I'm also under the western ,Dr Teh .now Dr Maung. I'm pv..sincec2016...venesection and aspirin . I'm on a 3 monthly virtual clinic so blood taken at GP following a reminder letter from consultant...then depending on the hematocrit level. Target is .45 I then have a venesection at ward1...this works well, if I feel more symptomatic before the next blood test I call up and the team liaise with Dr Maung and an early venesection is arranged, I was on 6mth appointments with consultant but because the above approach is working for me it's moved to 12 mths...but what I would say is if your are worried or unclear a call to your consultants secretary to confirm your treatment plan and a call to ward 1 for reassurance wouldn't be inappropriate....
Hi Andyf24 is Dr muang Dr teh replacement or is he temporary I got told that he was temporary and then there is going to be a a new consultant put in place who specialises in mpn and he also has changed me from three monthly visits to every six months how did you find your gp knowledge about mpnsBest wishes stay safe
Scottish terrier
Ps I have never had a bad consultant at the wgh they all have been brilliant
Hey..yes I believe he is temporary until a perm replacement. I've never seen my GP regarding the condition in Scotland as was diagnosed in England at the point I was relocating and so have always been under the western.
HI Edinburgh_Unicorn,
Glad that you found this site. I was diagnosed with ET in January, with platelet levels around the same as yours.
For the prior year I had been feeling brain fog and general malaise with joint pain and a general malaise. Being treated with HU has cleared that up almost completely.
My doctor's response was considerably different than yours. I was given the option of HU immediately which I opted for. The doctor had me come in for weekly check ups to see how the medication was working, and as she got a feel for how well the medication worked gradually moving the appointments to what is now bimonthly. When I asked here how often people on HU went in for monitoring, it was 3-4 months.
I would consider a second opinion at this point.
Also, I am often very fatigued and doctors won't confirm it is from my ET, but if you read comments here or watch YouTube videos you'll find it a very common complaint of people with ET.
Fatigue is the most common MPN constitutional symptom. Many experience it. If your current doctors will not confirm a fact that is common knowledge then perhaps they do not know. This is all too common as MPNs are rare disorders and many docs lack knowledge about them. That is why consultation with a MPN Specialist is so important. Just in case you have not seen it, here is a list. mpnforum.com/list-hem./
hunter5582Thank you!
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