I’m JAK2 positive and have been diagnosed with E.T. a few weeks ago. I’m on hydroxycarbamide plus aspirin and am 74 and, apart from this, am reasonably fit. It’s very early days with the medication as I’m only three weeks in but already have noticed an improvement in terms of feeling more normal and my old energy is returning. However, I have three symptoms that may or may not be related to the E.T. and wonder what other people think. One is lower back pain that comes and goes (had for many months and have more or less got used to it), I’m also suffering with hip bone pain and, more worryingly, eye problems. Again, I’ve had this for some months, it doesn’t affect my vision but for want of a better description, my eyes feel incredibly tired and sticky. I don’t think any of these are related to the medication and would like to know if anyone with a similar condition has experienced these symptoms, especially eye problems. Thank you.
E.T. Symptoms : I’m JAK2 positive and have been... - MPN Voice
E.T. Symptoms
Hello Hbm1 - Welcome to the forum. I also have Jak2 ET and take hydroxycarbamide and aspirin but also a blood thinner because I did have blood clots before I was diagnosed with ET. I have been on hydroxy for three years mostly at 500 mg. daily and have responded very well. It only took about three months for my platelets to drop to an acceptable level.
I cannot really say much about the back pain and hip joint pain. I am 82 and have had bad low back for many years with sciatic pain. I also have some hip joint pain but feel at my age this is normal. I do get pain in my shin bones which I think is related to the ET. The eye symptom may be due to dry eyes. This can apparently be one of the symptoms of ET as can dry skin. I suffer both these. I use plenty of moisturiser and on my face I use a 50 SPF moisturiser. For my eyes I use Hylo Forte eye drops. I suffer from wet macular degeneration in both eyes and have injections every three months. This causes my eyes to be dry also. There are very many eyedrops but my Eye Clinic said these were the best. They do not have a preservative in them.
I am sure there will be many more answers for you soon as people read your post. I wish you all the best in your ET journey and do let me know if I can help further.
There may be an indirect link between the MPN and the hip and back pain. The JAK2 mutation does more than make the body produce too many blood cells. It also causes the overp[roduction of inflammatory cytokines. This can exacerbate symptoms from other conditions, including musculoskeletal conditions. Suggest that you consult with an orthopedist and back specialist about those issues.
Some of use find relief with anti-inflammatory diet and supplements. I have found curcumin to be particularly helpful. This is a good topic to review with an Integrative or Functional Medicine doctor.
What you are describing with the eyes could be several different things including blepharitis and dry eye, both of which I experience. My ophthalmologist prescribed Cequa for the dry eye, which is the only thing that worked. These eye drops work quite well.
Wishing you all the best.
Thank you very much for this. I have a huge amount to learn with this I realise. You say you suffer from dry eye and blepharitis…is this linked to your MPN or a separate issue?
It is a separate issue.
Hi. I was diagnosed eith ET and Jak 2 in 2019 and have been on HU since. Iniitally I also took 75 mg aspirin but cardiologist changed this to clopidogrel. Make sure your aspirin is coated. I take an 80 mg statin. I have noticed back and joint pain but not sure if its the statin or HU. hemo advised to keep hydrated. I don't eat red meat and try to keep my weight down. Tiredness is a symptom of HU - but getting older too. Hope you are coping. Let us know how you get on.
Thank you summerdown. Yes, my aspirin is coated and I also take Lanzoprazole so I think I'm doubly covered!😀 I think that as I'm only 3 weeks in on the HU I'm looking for answers too soon so I shall have to be patient and assess symtoms further down the line. But it's very comforting to have this forum and be able to discuss these things and I'm very thankful to have found it. I will certainly let you know how I get on.
Morning I too had those symptoms for some years before being diagnosed or treated . My feeling is they are related to the condition. The bone ache was different to joint pains that I had experienced and doctors thought I had spinal stenosis my back pain and leg symptoms of pins and needles and spasms at times so bad . It would seem it has responded to various medications especially clopidigrel .
The eye problems got worse and worse at times I lost vision completely but the starting symptoms my eyes felt too tired to focus and visual problems at time of ET diagnosis were put down to a diagnosis of migraines but this too went on clopidogrel so I think that was my answer my platelets are well controlled on Hydroxycarbamide . I also have been diagnosed with Sjogrens so that I know contributes to many of the symptoms especially dry eye . Good luck . Understanding helps
Many thanks for sharing this. All this information is not only comforting but invaluable. I no longer feel alone with this! I'm very much hoping you're right and that my medication will eventually resolve a lot of these issues. Fingers crossed!!
I too am on HU and have been for 4 years now. I have hip and back pain dating from well before being diagnosed, or even having any other symptoms of ET as well that I always associated with old injuries. Unfortunately, they were not improved by taking HU. I usually take an anti-inflammatory when they get too annoying or when I've done something that I know will trigger a peak in the pain.
Hi, I’m sorry (and disappointed) that your pain wasn’t improved by the HU but I shall love in hope! It seems there’s a lot of odd symptoms and obviously some may be nothing to do with the ET. I told the Haematologist that I suffered tingling feet and hands and he said he’d never come across that but now I find it’s a very common symptom! 🙄
Hi Hbm1 - I am on ythe same te=reatment & have the same diagnosis as yourself. I have had 2 hip replacements & they were both a success-thankfully.I do get back pain, which is worse sometimes - & usually becomes manageable after a week or so of limiting pain. I do exercises which help.I agree with Hunter about the inflammatory component & anti-inlammatory foods should help I also have dry eyes & use non-preservative eye drops which help.Lots of luck! - you sound like a very positive person. ....which is always a bonus!!
Hello Annula, Many thanks for this. It's really helpful to know what symptoms other people have. I'm starting to realise that the blood can affect just about any part of the body and because this 'disease' seems to be so rare I'm never likely to meet anyone else with it so this forum is invaluable. I always think or thought of myself as positive although these last few months have been quite testing! It does appear that a lot of sufferers have dry eyes so I'm beginning to think that this is quite common for people with ET. I've ordered some preservative free drops as recommended by another member so we shall see. I'm due my first blood test next week having been on the medication for almost a month by then and will have a follow up call with the hospital the week after so I'll ask about the eye problems and will also hope that my platelet level is starting to reduce. Thanks again for writing.
Hello I have been on Hydroxy for about 2 months. I too, have lower back pain which comes and goes also knee pain, which I'd never had before. I have had blurry vision but didn't think it was a side effect but who knows. Other side effects have been exhaustion, feeling shivery especially about an hour after taking hydroxy. Eyes feel swollen the morning after taking it. I'm 58 with E.T triple negative. Going to persevere with treatment for a little while longer, then make a decision whether to continue. X
Hi Olliebunny, many thanks for this. I have to confess that I don’t know what triple negative means in relation to E.T. but it doesn’t sound great. Do you know if your platelets have come down in the 2 months you’ve been on hydroxy? I also find that I feel cold, not just after taking it but generally seem to feel the cold more than I did but that’s a minor niggle in the scheme of things.
Hi triple negative means that I don't have any of the 3 identified gene mutations. My platelets did initially come down but then I got a throat infection and they went up. Waiting for my next blood test to see what they are doing. I also feel cold more than I did ,I have to wear socks to bed . Also, I have strange pains in my hands,particularly my thumbs and side of my hands but not sure if this is connected to E.T. or medication.
Ok, thanks for explaining. I hope your next blood tests are good. 🤞
Hello Hbm1, I’m 70 and Jak2+ve, and have been on Hydroxycarbamide for over ten years to control my PV. Currently, I’m on 6000mg per week, plus Clopidogrel, Allolpurinol, Lanzoprazole, plus BP meds and statins. Throughout those 10+ years the combination has worked very effectively to control my HCT, RBC and platelet levels, largely without side effects
MPVs aren’t much fun but getting older’s not for the faint-hearted either. In the last year, I’ve needed macular hole surgery that will necessitate cataract surgery soon, and a total knee joint replacement due to osteoarthritis, from which I’m recovering very well. I’m an active person and disappointed to be significantly inconvenienced by the visual and joint problems, but I’m content to put both of them down to aging rather than my life-saving PV medication.
Regular blood tests seem to reinforce this interpretation, as do the follow-up consultations with the Haematology team at my local hospital. With their help and forums like Health Unlocked, you will quickly learn your way around the ET maze. Continuing to stay fit and active, eating well and looking after yourself generally will help deal with the rest!
Best wishes!
Thank you so much for your very positive and encouraging reply. I too take a BP tablet, aspirin and lanzoprazole. At the moment I’m taking 500mg hydroxy 5 days a week so I’m not yet rattling but on the way! I’m very pleased I found this forum and shall continue to check in. I totally agree with you about growing older; I think it was Bette Davis that said “aging ain’t for sissies!”
Nice to hear your knee replacement went well!! I too am scheduled for a total knee replacement this Dec. 3rd and am scared to death as I've never had any surgery. I'm PV jak2 and have been on aspirin and phlebotomy only for last 20 years. (63 now) Will go on HU before surgery to get numbers down. Like you I've always been extremely fit, eat well and in good health. I've got advanced osteoarthritis in my left knee........years of hard core running! Please give me any tips or helpful information regarding the knee surgery. I'm having it done at Mayo in Phoenix. Thanks so much.....Kerry
Hi Hbm1
I’ve been on Hydroxy 13 years and have experienced only improvement on symptoms which include blurred vision. Occasionally I’ve had to alter the dose because my red cell or white count was low but on the whole I’m happy with the meds.
I hope you feel some improvement soon. Best wishes
Hi, it's interesting how so many of us with ET/PV suffer from eye problems & joint aches. I'm on no drugs except 2x aspirin a day and phlebotomy as needed. Was diagnosed 20 some years ago. My biggest complaint over the years has been my non-stop eye inflammation that manifested with huge styes on upper/lower eyelids. It was extremely debilitating and ugly to have. After years of suffering using hot compresses (did nothing) I went to a dry eye specialist I found in Phoenix. This doctor has completely fixed my stye problem thus changed my life!! I never thought of myself as having dry eyes as I wear contacts lens daily with no problems. He performed Blephex, LLLT light therapy 3X, and under eye IPL 3X. I use a every other day electric eye mask and tea tree oil wipes daily. I'm 7 months out and my eyes look great. This all cost 1000.00 but has been worth every dollar. (insurance won't cover) You might want to look into this. Best wishes! Kerry
What an interesting story Kerry. I don’t know if we have dry eye specialists over here in the UK but it may be worth looking into. Thanks for sharing your experience.
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