I was diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I have had 12 lots of blood taken (12x480ml 1 per week) after diagnoses and further blood taken over a period of 12months (3x480ml 1 per week) when required. I also started chemotherapy in tablet form.
My symptoms are in the main. itching . fatigue. painful joints and limbs. tingling in the feet and hands. pains in the legs. also night sweats, most of my blood counts remain slightly high
The question I have is in two parts the first.
Will I ever feel well again and not fatigued?
The second is more complex
Is it possible to tell if the condition is worsening or is it staying the same (I know there is no cure) I often feel that the ‘cure’ is worse than the Polycythemia . I have had several infections over the last year, I am putting this down to the drugs?
The doctor have given me high levels of antibiotics to combat the infections. Is this the norm? or is this the condition worsening? How do you tell that you are in fact getting worse when you already feel terrible.
All the best and many thanks
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StanM
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If you're like me, you'll find that it all stabilises and you get into a pattern where you have far fewer venesections to keep your blood counts in the normal range. At this stage, although I still have the joint/bone pains and sweats hardly ever catch any bugs! Like you, I used to pick up everything that was around and get it twice as badly for twice as long! However, several people on this site have agreed that we tend not to catch infections - we speculate that it's because the chemo kills them off! So hang in there, it will probably get better!
First of all PV is a progressive condition, that is the nature of the disease. Everyone's experience seems to be different apart from the itching. I certainly had fatigue when my counts were high and my blood thick.I used this to know when to get counts done etc but also to make sure my Hb was up a bit if I was planning any exercise.Like natural blood doping for athletes! I also had night sweats but it is hard to know if this was from the disease or the anxiety it produced which was huge. I never took any meds for PV and didn't get a lot of infections. There is no doubt taking HU increases the infection risk. I don't know if I was just lucky but as my job exposes me to infection all the time I have a very robust immune system. Personally I never got leg pains but did get splenic capsule pain on occasions and had a splenic infarct once. You could ask your consultant about stopping any meds that increase infection risk and rely on venesection alone to see if it makes a difference but don't do it on your own as I don't know all the factors that need to be taken into account. Hope this helps.
hi, is it correct that HU increases the infection risk so long as your white blood count is OK? As you say, there are implications in relying only on venesection if you have it often: importantly, as I understand it, venesection only will not slow your bone marrow down, so you may get more scarring earlier and a higher risk of myelofibrosis. Clinical trials suggest that taking hydroxy lessens your risk of myelofibrosis.
Hi StanM - I was diagnosed with ET Jak +in 2011 and like you I experienced all the symptoms you described, I also had a high red cell count and was warned I could develop PV as well. The first 18 months have been very difficult, dealing with the diagnosis and processing this, along with all the horrid symptoms - fatigue being the most debilitating and the worry associated with taking Hydroxycarbamide (Hu). I even had to reduce my work week to 4 days. However, I don't want to tempt fate when I tell you that this last 6 months has been really good, I actually feel normal again, now we have at last got the right dose of Hu (I take 12 per week). I do get tired sometimes but when I listen to family/colleagues complaining of being tired I think its just normal tired. Hang on in there StanM I never dreamt I would feel normal ever again. In answer to the Hu causing infection I would hazard a guess that it could be because it reduces the white cell count, which needs to be kept an eye on. Best Wishes
I've had PRV for about 8 years. Luckily, I was retired as I've continued to have all the symptoms with a much lowered energy level, which, at times, will plunge to nothing and I have to rest a while. I've had a pulmonary thrombosis, a half dozen bouts of cellulitis, and a heart attack, despite the fact that I used to exercise and walk/jog a lot. I take the attitude that I am lucky, really, as it could be much worse, particularly if I hadn't sought treatment. In that case I'd probably be dead. The life expectancy without treatment is only 18-24 months I have read. There are constantly changing 'new normals' to adapt to, but if I roll with the punches it's not too bad. Best wishes.
I was diagnosed very end 2005 and after a rapid succession of venesections did feel better. Prior to diagnosis my symptoms were fairly non specific- dizzy spells, spontaneous bleeding from my lip, scintillating schotoma, stomach pain (splenomagly), occasional itching and a general not quite myself feeling. Since treatment these symptoms have more or less gone.You ask an interesting question about 'feeling better again'. I feel ok most of the time but definitely get more tired, but that might be because I'm now 50 as much as it is about having PV. My guess is that you will not feel quite as you did prior to the onset of PV or as fully 'well' again; as you say the chemo is likely to have contra-indications. I understand that the condition can accelerate and decelerate and that the amount of mutated chromosome (JAK2) can vary thus affecting the overall severity and symptoms. The only certain way of knowing what's going on with your bone marrow and the progression of the PV and whether the condition is changing is a bone marrow biopsy. If your blood counts remain stable as a result of your ongoing treatment then there should really be no need for a biopsy.You should try to ask your a haematologist about your concerns and the questions you raise. All the best.
We are definatly all different regards to our MPD. The symptoms you have described are normal to me, every day. (I don't get the itching as much as others but it's still normal)
With 'My limited education' I've heard little bad about hydroxycarbamide. (Most people 'on it' say they like it regardless of the side affects [To the best of my knowledge You haven't mentioned the side affects.] Again to the best of my knowledge this drug is not good for long term use: But it does work (apparently) (Please also note i'm no GP or specialist in this field, Also I've never used hydroxycarbamide.)
If you feel that your not getting along with hydroxycarbamide their are alternatives and you can speak to your Haematologist about it. Interferon Beta (Whoops EDIT: Interferon Alpha thanks Lov2Laf) is an option, but this also has side affects but also has many bonuses to it. (Again i'm not on this drug)
If you experience other symptoms like mouth ulcers then definitely need to seek medical advice. And as far as i know you can ask to change your medication if you need to.
It is very difficult to say or describe if we are getting worse or not, I find that the Anaemia (Kinda required) that is induced makes us feel pretty rubbish, it's almost recursive.
I was diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I have had 12 lots of blood taken (12x480ml 1 per week) after diagnoses and further blood taken over a period of 12months (3x480ml 1 per week) when required.
It is normal to withdraw a lot of blood early on to get your HCT down. 42/14 is good but most hems are satisfied at 45.
I also started chemotherapy in tablet form.
Hydroxyurea. Other options are interferon alpha and P-32 a radiation pill, suitable for elderly as there is about a 10% risk of leukemia transformation after about 10 years from use. So if you are very senior, the risk obviates due to your advanced age.
My symptoms are in the main. itching . fatigue. painful joints and limbs. tingling in the feet and hands. pains in the legs. also night sweats, most of my blood counts remain slightly high
Yes, you need to get your disease under better control.
The question I have is in two parts the first.
Will I ever feel well again and not fatigued?
You should. I have had PV over 30 of my 65 years. I have been on interferon since Feb 1995. Continuously. Nightly.
The second is more complex
Is it possible to tell if the condition is worsening or is it staying the same (I know there is no cure) I often feel that the ‘cure’ is worse than the Polycythemia . I have had several infections over the last year, I am putting this down to the drugs?
Your immune system is not 100% See if your WBCs are elevated. Elevated WBCs are a poor harbinger you may want to switch to interferon. There is a once a week style available, Pegasys. Track your spleen size by ultrasound every 6 months or so.
The doctor have given me high levels of antibiotics to combat the infections. Is this the norm? or is this the condition worsening? How do you tell that you are in fact getting worse when you already feel terrible.
Track your CBC over time. Get yearly BMBs. Most important, see out a MPD expert, we have rare disease. Check out the research hospitals listed at mpd-rc.org. You can see the expert yearly or so and he or she can provide a treatment plan to your local oncologist. Use your local oncologist for routine care such as CBCs and phlebotomies.
Bone & Joint pain in MPD explainedBy Robert Tollen in MPD Myeloproliferative disease support (Files) ·
From our mpdsupport.org archives from 1995, pearls of wisdom bythe late Dr. Gilbert
Dear Members: For your information re bone and joint pains in MPD.Several of you have mentioned that you suffer from bone and/or joint pains - sometimes attributed to arthritis. I have seen a number of patients who have this complaint and it has been related to very active proliferative disease. There is a technique for demonstrating active sites of bone marrow proliferation using nuclear scans. The agent that is injected is technicium-sulfur-colloid. It is the same scanning agent that is used to image the liver and spleen. It is taken up by macrophages which are cells derived from monocytes and,ultimately, from the bone marrow precursor cell that is involved in MPD.
In normal people bone marrow is confined to the central skeleton(cranium, ribs, sternum, vertebrae, and pelvis. The long bones contain mostly fat. In MPD the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrowscanning is done.
The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering ofthe bone(periostium). The resulting periostitis may be painful. In some patients with bone and joint pain treatment with myelosuppressive therapy has decreased or eliminated these symptoms by reducing the amount of bone marrow in the cavity and reducing the pressure that it causes.
Although other forms of arthritis may be causing your pains, if no conventional cause is found, they may be due to MPD. Talk to your doctor about it if you have bone or joint pains. Also, consider gout which produces very acute arthritis involving only one joint. Hope this helps. Dr. Gilbert
I have ET, JAK2 status unknown. I have been on Interferon-a for just over 2 years. My pain is mainly in the calf, thigh and haunch muscles, sometimes also in my lower back. The thigh muscles actually seize if I have a longer walk or stand for any length of time and occasionally feel as if they have torn and the leg gives way so I have to sit. They feel better again after a while. My platelet count is currently around the 250 mark. Anyone know what causes the muscle pain?
I have been experiencing severe symmetrical leg pain last 3 years. My HGB and HMT have been high last two years which can be caused by taking testosterone. Before I felt the pain was correlated with my testosterone dosing from having hypogonadism. Also, I have bad hip and prior ankle surgery so I tended to write off some of the pain to leg injury. The pain always seemed to start within a week when dosing on a two week dose interval so the dose regiment was changed to every 6 days. I had very good 3 to 6 months no serious issue and more minor leg pain flare ups. Testosterone can be flushed out of a person's body rapidly as not all persons are the same. I was tested for arthritic conditions and all negative. Also, I have a lower EPO so high RBC not coming from kidneys.
Before my leg and arm pain was always adjacent to knee and elbow joint, in the tendons, but never in the joint. Almost always symmetrical in the legs, but when symmetrical with the legs and elbows it hurts super bad and painful. Now, sensation is feeling like its in the bone. My flare ups come and last maybe an hour then can quickly go away. My CBC have had high HGB and high HMT for last two years except it was assumed to be from testosterone therapy. The leg and bone pain is difficult to describe but I relate to your limbs being placed in a vice and put under pressure. My pain is never muscles, and I have never had muscle weakness. I get fatigued from the pain. This week I had my first phlebotomy and I am waiting for Jak2 test. The last 6 weeks the pain has become another entirely different sensation from tight tendons to the bone near the joint area. Also, my WBC and white blood cell factors are going higher with each blood test in last week. Also, when I get symmetrical leg and elbows pains my back has started to tighten drastically at my shoulder blade muscles in back.
Regardless of Jak2 result, I have had polycythemia vera for two going on three years with HGB and HMT never being normal in last 6 CBC. After Jak2 test results, I will completely withdraw from testosterone as I need hip replacement surgery and the testosterone can cause clotting issues. So, I will know whether my PV is primary or secondary. I would hate to find it is secondary from taking testosterone because it has been a very painful 3 years.
Can members please specifically describe their leg pain issue such as location in leg, is it muscles or tendons, tight tendons, internal bone pain. etc? Leg pain that is symmetrical in my research is always a disease and my doctor leaned toward inflammation conditions which now have all been shown to be negative. Also, my flare come on hard and hit pain threshold of 8 to 9, then clear up. On hard hitting pain flare ups I tend to either want to fall asleep and rest, or I do fall asleep right afterwards the same as when the body is sick.
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