I have Jak2 positive essential thrombocythemia, I have had upper leg pain since yesterday I have had pains before In the leg but It normally dissappears straight away but this pain since yesterday Is constant, bit concerned really as I haven’t falling over or anything, a quick search on Google and It’s coming up with blood clots etc and I should contact emergency help, what’s people’s thought’s on this and has anyone else suffered similar pain to mine? I’m probably worrying over nothing
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Hey there @RA2000, I just replied to your other comment but I’d say call 111: When to use NHS 111 online or call 111 - NHS
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I think it’s always worth getting things like this checked just to be safe. Let us know how you get on.
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I rang 111 got an appointment at accident and emergency at quarter past 10, I agree better to get checked out, I was told to go to the hospital last night at the a and e and when I got their at midnight was told their was a 3 or 4 hour waiting time so I best come back In the morning, It was rather frustrating. They did put me In the assessment area before I left and asked about my symptoms etc, the doctor actually had to Google essential thrombocythemia so It’s not very common. I will update on here what happens today at hospital hopefully It’s nothing but better safe than sorry
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That must have been very frustrating. I hope you have better luck this morning 
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They don’t think It’s a blood clot the doctor said I could of strained the leg but as far as im aware I havent, I explainedabout the condition I have so he said I done right getting checked, Just told me to rest It but If the pain persists to contact my GP. Feel bit silly really but better safe than sorry
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That’s really great news!
I don’t think you should feel silly at all. You would have worried if you hadn’t got it checked and you were advised on what to do. You never know, so it’s always better to get these things checked out 
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I’m so glad it doesn’t seem to be a clot, I hope that feels like a relief. No need to feel silly, you’re caring for yourself and making sure what the pain is or is not. Let’s just hope that it fades away right?!
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@Duncan @Nichola75 Thanks for both of you for replying. I hope the pain goes down In the leg In the next few days, I probably done right getting checked I would of just been worrying overwise, I think I should maybe stop googling things as well as It always brings up the worst.
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Ha yes step away from Google, it cannot replace the expertise of our specialists!
Did the hospital suggest ways to minimise the pain? If they suggested something like paracetamol I was told to take it a few hours apart from aspirin if you already take that for Essential thrombocythemia (ET).
Anyway, do please keep us posted about how you get on @RA2000. Don’t forget you can call the lovely specialist nurses at Blood Cancer UK on 0808 2080 888.
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@Duncan yes they told me to take paracetamol. I take a baby aspirin every morning so will make sure I take paracetamol a few hours after, I also didn’t know their was a phone number to ring the specialist nurses so thanks for sharing that
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Hello there @RA2000, may I ask how you’re doing a couple of days later? I hope that pain has totally faded.
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@Duncan my legs alot better now have a slight pain but compared to what It was so much better I’ve managed today to go without paracetamol for the pain, I maybe just sprained It at work or something without realising, I still feel bit silly for going to hospital to get checked over but with the risk of blood clots with the condition I have I probably done right thing and the doctor did explain to me what a blood clot will look and feel like If I ever get one so It wasn’t a complete waste of time. Thanks for checking up on me, How are you getting on with the condition you have?
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I am so glad to read this @RA2000! I think it shows real care for yourself that you had it checked out. It’s also great that a doctor explained what a clot would feel like, helps to make it seem more manageable, doesn’t it? I think it helps to make hospitals a little less scary too, having a visit that isn’t just bad news.
That face to face time with a specialist is also a great time to ask questions that pop up randomly in between appointments, so I try to keep a list or notes of what I want to ask next like you did.
You know, after I started treatment for Polycythaemia vera (PV) I began noticing sensitivity in old sprains, come to mention it. My first haematologist didn’t think it had anything to do with treatment, but it was like I could feel tendinitis back in my elbow from years ago. I wonder if you had sprained that leg before and were noticing it again?
Thanks for asking how I’m getting on. Funnily enough it’s my blood test week, meaning if a complete blood count showed my haematocrit as being higher than 45 % then I’d need phlebotomy. CBCs were fortnightly at first, then monthly, but are now every other month. This time my haematocrit is still low enough for me not to need bloodletting!
This is the longest I’ve gone without it, so it feels great that my hydroxyurea and aspirin doses are finally in the Goldilocks zone for me! My haematologist is likely happy too as he has wanted to free me from phlebotomy, as he puts it, since he started treating me. This Polycythaemia vera (PV) feels tolerable in the long-term, I hope that Essential thrombocythemia (ET) does for you too @RA2000.
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Hope your full blood test comes back ok I hope your haematocrit level Is still low enough. I’ve got an appointment on Monday with my haematology consultant I’ve been on pegasys Injections for a month now so they are going to do a blood test to see If my platelets have gone down, I’ve got a few questions to ask him as well I think I will write them down what I’m going to ask because I always forget. One thing I didn’t know I was entitled to until last month was a medical exemption certificate so I can get free prescriptions, I’ve been paying for my prescriptions but my medical exemption certificate arrived In post earlier this week so won’t have to pay anymore, It’s worth knowing for anyone who didn’t know they were eligible. My leg pain Is almost completely gone now
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It did come back okay, thank you! Haematocrit was 44.8 % so no need for phlebotomy, which is always a treat. This will be 6 months without it!
Hope your own blood test goes well, it’s amazing to me that a simple blood test can tell us so much about what’s going on in our bodies. I think I read that there’s an NHS app where you can see your test results, but I haven’t used it.
That’s a great tip for saving money on prescriptions, it can get pretty expensive quickly with all these medicines we can need with MPN (Myeloproliferative neoplasms)! How are you getting on with the injecting? I know of other forum members who’ve shared their experiences of Pegasys and similar, maybe have a look.
Just thought that you may be interested in tracking any symptoms you may have. Nurse @Heidi_BloodCancerUK recently shared this MPN symptom tracker and there’s even an app (it mentions a study, but you can download the app and not be part of the study if you’d prefer): MPN | Sanius Health Just downloaded it myself.
Hope it’s a great appointment with your haematologist on Monday, keep us posted @RA2000.
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I’ve had no side effects at all on the pegasys Injections I’m on a low dose though 45 mcg, I’m only on these as a trial to see If It helps with my fatigue so far It hasn’t really helped much with the fatifue I’ve only been on them a month so will give them a chance, to be honest I’m not keen on being on pegasys the rest of my life I’m 37 and was told to drink alcohol in moderation but as selfish as It sounds I want to live my life as normally as possible and I do quite enjoy a drink, I’m not a heavy drinker I never drink during the week but weekends I do like a drink I have a season ticket at a football team and the match day wouldn’t be the same without drink, It’s something I’m going to discuss with my consultant on Monday, I know I probably sound selfish prioritising drink over my health but I want to enjoy life still as much as possibl. The MPN (Myeloproliferative neoplasms) (Myeloproliferative neoplasms) symptom tracker and the sanius health app Is something I will definitely look Into thanks for sharing that.
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So glad you don’t get any side effects from the Pegasys. There’s a group of others with Essential thrombocythemia (ET) diagnoses (that I see you’ve commented on) who share their ongoing experiences with it, including recent issues with low stocks of the medicine, maybe you’d like to check in with them: ET diagnosis finally sinking in
You know, I feel for you wanting to be able to drink alongside treatment. I was told with the hydroxyurea I take to be careful of alcohol as it’s carcinogenic. The weird thing is that I’ve actually totally gone off alcohol! I used to enjoy a beer after hiking or when socialising, but now when I fancy a drink I’ll take a sip and feel instantly nauseous like seasickness. Very annoying. I think moderation is whatever feels fine to you, and maybe you’ll go off beer anyway! Try not to worry about a drink or two now and again.
Glad those MPN (Myeloproliferative neoplasms) trackers may be of use. There’s so much support out there if we need it, sometimes we just need being pointed in the right direction by our kindly nurses and other specialists.
Take care @RA2000, so glad that leg pain of yours has gone!
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I will definitely check In on others on the Essential thrombocythemia (ET) diagnos finally sinking In forum In the next few days. I got a bit carried away today was at the football and my team won admittedly I’ve probably drank 8 or 9 pints of lager (nothing to be proud of) hardly the drink In moderation Information I got from my consultant with being on pegasys though, It Is my first drink since new years eve so I think I’ve done quite well, I probably won’t have another drink now until next weekend. Like I Said the other day I’ve got an appointment with my consultant on Monday I think it’s to see If my platelets have gone down since I started taking the pegays so no doubt they will be taking a blood test from me. @Duncan Your replies have been a real help thanks
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