I have been pretty quiet here, my Essential Thrombocythemia has been well controlled and blood levels have been stable. But I have recently been challenged by development of bursitis in my left hip. This got started after I used a leg press machine at a new gym, I used a light weight but at the time the angle of the leg press and associated calf raise seemed uncomfortable About a week later I get severe pain, primarily in my left hip, with some pain radiating to outer knee and lower leg. Primary care doc started me on oral steroids, that helped but then wore off. He then gave me a steroid injection and prescribed some hip stretching exercises. Both worked great for a while, and stretching really helped the hip, but then the pain in the outer knee and lower leg got much worse. It got bad enough earlier this week that I went to the ER (woke up with pain and couldn’t return to sleep)–especially concerned about the possibility of deep vein thrombosis because of the lower leg pain and possible link to Essential Thrombocythaemia ('ET'). Fortunately the x rays, CT scan, and ultrasound showed no evidence of vein problems or abnormalities. They sent me home with pain meds and muscle relaxants, trying to use those sparingly, plus ice, and using a wedge pillow to take pressure off the hip.
Pain is worse when I am sitting and driving, which is tough because I am a college professor and have lots of desk work, and have an hour drive each way on days I teach. I have another appointment this week with primary care doc, who is also board certified in sports medicine. Thinking I need a total PT approach rather than just focusing on the hip.
So, this seems to have no relationship to my Essential Thrombocythaemia ('ET'), but thought I would share in case anyone else encounters this. I’m glad I went to the ER so I could gain reassurance that I didn’t have a thrombosis in the leg. Saw my hematologist yesterday and kept them informed.
Glad the scans came back clear and you’ve got the DVT worry off your mind. I think going to the ER was the right decision, for sure.
The knee and lower leg pain spreading the way it has sounds miserable though, especially with how much of your day is spent sitting and driving. I’m sorry to read that, and hope your appointment this week gets you a proper full-body PT plan?
Thanks for posting this too, as it’s a good reminder of how tangled a new issue can get with an existing Myeloproliferative neoplasms ('MPN'), even when they end up being unconnected. Hope the next update is a better one.
Thankyou for the heads up. It sounds like you have been in serious pain. Hopefully now it will be sorted.
I take it from your message that you are an experience Essential Thrombocythaemia ('ET') sufferer! I am terribly new here and actually am seeing my consultant this afternoon for my first 2 week check after starting Hydroxycarbomide. It is all so overwhelming and there seem to be more questions than answers at the moment.
Please take care with your bursitis, have you tried acupuncture at all?
Kind regards, Judi
Thanks @Ceri_BloodCancerUK I am fortunate to have great physicians who are taking great care of me. I think my primary care doc was prudent to start me just focusing on the hip pain–he printed me out some simple exercises that really worked for the hip! I’ve been reading, this bursitis may take extensive PT, especially since it is affecting multiple spots.
My wife had several bouts with deep vein thrombosis after plane flights. They were able to manage those and hers has not recurred.
I do hope this is helpful for other people with Essential Thrombocythaemia ('ET'), this is a condition that can be managed, but we have to be cautious the way the clotting and bleeding can be abnormal.
Thanks @Judi I was diagnosed just over a year ago with Essential Thrombocythaemia ('ET'), and was immediately started on Hydroxyurea. The guidelines I have read suggest that not everyone needs to take this, but people at high risk of thrombosis or clots (which fits me since I am 71 years old, have the JAK2 mutation, and have coronary artery disease) really benefit from taking it.
My experience with Essential Thrombocythaemia ('ET') has been fine. I do not have any side effects from the medication as far as I can tell. I have fatigue but that is probably a combination of my age, my CAD, and the Essential Thrombocythaemia ('ET') (and maybe meds), plus not exercising enough. My hematologist who manages the Essential Thrombocythaemia ('ET') watches me like a hawk. I go in for monthly blood tests at a cancer center. Honestly I feel very fortunate, my wife went with me last week and commented that I looked like the healthiest person there. That’s likely true. I know that Essential Thrombocythaemia ('ET') is technically a blood cancer, but I don’t really think about it that way since the symptoms are minimal and from all I have read, life expectancy (with treatment) is pretty well normal. I think of it as a blood disorder. I do have purpura (purple spots) on my lower arms, and sometimes get minor spontaneous bleeding, which is strange but I can manage with band aids. Last week I was in a tight space on our driveway and bumped my lower arm against the side mirror of my car–that minor bump made me bleed like crazy! But my wife put a big bandage on it, and it stopped bleeding within a week (we replaced the bandage twice).
This center draws blood and then gets results within 15 minutes on probably 30 tests! They adjust my Hydroxyurea dosage based on what’s going on with the platelet test. At this point I am taking 500 mg every morning and every evening. They really know what they are doing, they have had me, for example take one every morning, and then three evenings a week to adjust the platelet levels.
Best wishes to you, I tend to look at it that I am fortunate to have had a long life, that I can expect to encounter chronic illnesses as I grow older, and that I should do my best to get excellent medical care and live my life fully.
Hey @Judi at this point I have just done the exercises my physician prescribed. PT would be my preferred next step. I have had a lot of PT due to injuries to my knees and neck, and that has always worked great–plus I like being an active participant and doing exercises seems like it is me helping myself. But I certainly would not rule out acupuncture or TENS (transcutaneous electrical nerve stimulation) for this. I worked as a psychologist in a pain clinic for several years and saw people with back pain really benefit from that.
Hello there @ProfessorJAK, thank you for your update and just to say I’m sorry you had enough concern to take you to the ER, or A&E (accident and emergency) as Brits call it. Thank goodness it wasn’t any clotting, and I’m glad you were checked so thoroughly.
Although you say the bursitis and other pains are not related to the Essential Thrombocythaemia ('ET'), perhaps you’d be interested in my own personal theory based on a case study of 1 (myself) that historic aches and pains seemed to return once I started treatment for Polycythaemia vera ('PV'). An old tendinitis elbow injury returned and a severely sprained ankle pain came back, making me wonder why they hurt again years after healing. The only changes were starting to take hydroxyurea and having thinner blood, but my haematologist can’t say whether they’re causal/related.
Don’t know if you keep note of symptoms you experience Bill, and apologies if I shared these before, but using one of the Myeloproliferative neoplasms ('MPN') symptom trackers can help us keep note of patterns in these annoying side effects we can develop. Here’s an online MPN tracker and an app via MPN Voice which should also work fine outside the UK.
Let’s hope the hip pain improves Bill, that cannot be any fun. Maybe you need an office chaise longue to recline on to help ease the pain on your hip—as a psychologist you could say it’s necessary for your work!
Keep us posted about how you get on with minimising the pain, I’m sure your tips about what helps you will help others here too, like @Judi.
And may I ask how it went seeing your consultant @Judi? I hope your 2-week checkup went really well.
I have Myelofibrosis and suffer with purpura, mainly on the back of my right hand and sometimes on my lower right arm and the back of my left hand.
They do bleed from time to time particularly if I accidentally rub one against something. This can happen at a most inconvenient time, such as an airport luggage carousel. I now carry a few plasters in my wallet for such emergencies.
My Myeloproliferative neoplasms ('MPN') consultant does not think they are a symptom of my Myelofibrosis.
Thankyou for asking Duncan. It went as well as I could have hoped really. My platelets have reduced somewhat already and my LFT and KFT was good. My white cells were a little up and down but he wasnt at all concerned. My CRP is now at a low level too, so that was good!
He felt I could now come off the allopurinol so one less tablet is always a bonus. I have another blood test and assessment in 2 weeks. I still need the lansoprazole for my hiatus hernia to cover for any aspirin damage etc. Poor guy was bombarded by my questions, but took time, and reassured me at every step. It is still all so new and mind boggling but I am trying to take it one step at a time, some days are good and others not so.
I find the help and care here staggering, so thankyou again
Oh @Judi, that sounds like great news! One less pill is definitely a bonus, and perhaps a slight relief for you? Glad to know you’re having frequent tests at the moment, it shows your specialists are keeping a close eye on how well treatment is helping you.
That’s brilliant that you had your questions at the ready! It’s a great practice to get into I think, keeping note in between appointments. I sometimes email my haematologist in advance of appointments any queries I have so he can research beforehand, maybe you can contact yours or if you’ve been given a named clinical nurse specialist (CNS)?
Mind-boggling indeed, what a perfect description of all this! I’m 3 years on from my diagnosis with Polycythaemia vera ('PV') and still learn new stuff all the time, so I’d say there’s no rush right now. Hopefully any sense of ‘crisis’ has faded a little and perhaps with good news like today you can breathe a slight sigh of relief.
And don’t forget to treat yourself when you get good results, like those lower platelets. Excellent stuff, I’m really pleased they’ve reduced and you’re less at risk now @Judi. Time for a treat!
I’m sorry to read you’re experiencing that with the purpura @Jonpd, does not sound at all pleasant, and perhaps it’s a bit embarrassing too—thinking back to before my Polycythaemia vera ('Polycythaemia vera ('PV')') diagnosis and how friends would comment on how easily I bled from the merest of scratches! I always carry plasters too
Out of interest, as you and @ProfessorJAK have both mentioned living with purpura alongside Myeloproliferative neoplasms ('MPN'), I’m going to politely ask @BloodCancerUK_Nurses if there’s a known link, and any tips they might offer to you both
Thank you @Duncan For me it has been more of an irritant. I have not experienced a bleed on the scale that @ProfessorJAK has experienced. When it does happen, I have found putting vasseline on the wound helps protect it.
Thanks so much @Duncan . I have no previous history of injury to my hip, so in my case, it is not a recurrence. But these are mysterious conditions and there is a lot left to do!
One thing that works very well for me is lying on the right side (the left is the one that hurts), putting two pillows between the legs, and letting the sore leg rest. I took a nap that way today and it felt great.
Tomorrow will be challenging. I have a one hour drive into the university to teach, an hour and 15 minute class, then an hour long drive to see my primary care doc, then about 45 minutes to get back home. I may end up taking a muscle relaxant (which sedates me but really helps).
Hello all, a bit of follow up on the aftermath of my ER visit and a subsequent appointment with my primary care doctor. My pain started on the left hip, and hurt a bit on the left outer knee and lower leg. My primary care doc was very pleased that I went to the ER to rule out deep vein thrombosis. He examined me more and I noted that the pain from the outer hip, into the outer knee, all the way down the leg was worsening. He has referred me to an orthopedics specialist because he is concerned that I may have nerve impingement–something in the spine area pinching a nerve and causing this pain. He asked what the pain felt like, I said burning, and he said that was common in this type of nerve pain.
I was especially pleased that he said he was referring me to an orthopedist who is not quick to recommend surgery, who will work to identify the exact path with nerve conduction and other studies, and use less invasive procedures such as nerve blocks first. I worked as a psychologist in a pain clinic for several years and saw many patients who did poorly when going right on to back surgery after injuries. They thought they would get a quick fix, but instead often had worse and more intractable pain. Of course some patients benefit greatly. But I am glad to take a more conservative path and try things like nerve blocks and physical therapy. I have also read a good bit about how my essential thrombocythemia can be risky in surgery and would be glad to avoid it.
Glad you’re being referred on for the nerve impingement question rather than straight to surgery. That sounds like a sensible way in given what you’ve seen from your own pain clinic work.
Hope the referral moves quickly and that drive doesn’t wear you out too much in the meantime. Keep us posted!
Thanks @Ceri_BloodCancerUK This has been the worst pain I have ever had. It changes from being bearable to an extreme of feeling very uncomfortable. I have found a few things that help–sitting with a pillow under the sore hip (at home and when driving), sitting so knee is below the hip, and lying on my right side with the left hip and leg (the bad one) on top, with two pillows between the two slightly bent legs. That’s not foolproof though, I have gotten some cramps in the right calf when I have fallen asleep in that position, but just a few times.
My appointment is next Tuesday. Fortunately people at work have been understanding, letting me do some meetings via Teams so I am spared the drive and sitting in a meeting. But earlier today I had a deadline on a project, sat a long time at the desk, hip is pretty sore now. The acetaminophen I usually take for pain doesn’t tough this, and the version with codeine doesn’t really either (and causes side effects). Seeing some possibility for new help next week is encouraging.
