How Do You Know if You Have Polycythemia

Polycythemia Is it possible to tell if the condition is worsening or staying the same?

Hello All

I was diagnosed with primary Polycythemia with a Jak2 positive examination (July 2012) I accept had 12 lots of blood taken (12x480ml 1 per week) afterwards diagnoses and further claret taken over a menses of 12months (3x480ml 1 per week) when required. I also started chemotherapy in tablet course.

My symptoms are in the main. itching . fatigue. painful joints and limbs. tingling in the feet and easily. pains in the legs. likewise night sweats, almost of my blood counts remain slightly high

The question I take is in two parts the first.

Will I ever experience well again and not fatigued?

The 2d is more complex

Is information technology 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 terminal yr, I am putting this downwards 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 y'all tell that you are in fact getting worse when you already feel terrible.

All the all-time and many thanks

Written by

sounds grim!

If you're like me, you'll find that it all stabilises and you become into a blueprint where you have far fewer venesections to keep your blood counts in the normal range. At this stage, although I even so accept the joint/bone pains and sweats inappreciably ever catch whatsoever bugs! Like you, I used to selection upward everything that was around and get it twice as badly for twice as long! Even so, several people on this site have agreed that nosotros tend not to catch infections - nosotros speculate that it'south because the chemo kills them off! So hang in there, it will probably get ameliorate!

Cheers

First of all PV is a progressive condition, that is the nature of the affliction. Anybody's experience seems to be unlike 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 washed etc merely also to make sure my Hb was up a flake if I was planning any practise.Like natural blood doping for athletes! I as well had night sweats but it is hard to know if this was from the illness or the anxiety it produced which was huge. I never took whatever meds for PV and didn't get a lot of infections. In that location is no doubt taking HU increases the infection risk. I don't know if I was just lucky but as my task exposes me to infection all the time I have a very robust immune system. Personally I never got leg pains but did become splenic sheathing hurting on occasions and had a splenic infarct once. Y'all could inquire your consultant nigh stopping any meds that increase infection risk and rely on venesection solitary to see if it makes a difference but don't exercise it on your own as I don't know all the factors that need to exist taken into account. Hope this helps.

hello, is it right 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 accept it often: importantly, as I sympathize it, venesection only will not slow your bone marrow down, so yous may get more scarring earlier and a higher chance of myelofibrosis. Clinical trials suggest that taking hydroxy lessens your adventure of myelofibrosis.

How-do-you-do StanM - I was diagnosed with ET Jak +in 2011 and like yous I experienced all the symptoms you described, I too had a high red cell count and was warned I could develop PV likewise. The first 18 months have been very hard, dealing with the diagnosis and processing this, along with all the horrid symptoms - fatigue existence the most debilitating and the worry associated with taking Hydroxycarbamide (Hu). I fifty-fifty had to reduce my work week to 4 days. Notwithstanding, I don't want to tempt fate when I tell y'all that this last 6 months has been actually good, I really feel normal again, now we accept at last got the right dose of Hu (I have 12 per calendar week). I do become tired sometimes but when I heed to family/colleagues complaining of being tired I think its simply 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 run a risk a gauge that it could be because it reduces the white jail cell count, which needs to exist kept an center on. Best Wishes

Hello Stan,

I've had PRV for about viii years. Luckily, I was retired as I've connected to take all the symptoms with a much lowered energy level, which, at times, will plunge to nothing and I have to residual a while. I've had a pulmonary thrombosis, a half dozen bouts of cellulitis, and a centre attack, despite the fact that I used to exercise and walk/jog a lot. I have the mental attitude that I am lucky, really, as it could exist much worse, particularly if I hadn't sought treatment. In that case I'd probably be dead. The life expectancy without treatment is but xviii-24 months I have read. In that location are constantly changing 'new normals' to adapt to, simply if I whorl with the punches information technology'south not too bad. All-time wishes.

ABman

Thanks

Do you know what caused your recurrent cellulitis as this is something I have experienced as well

Hi StanM,

I was diagnosed very end 2005 and afterwards a rapid succession of venesections did feel meliorate. Prior to diagnosis my symptoms were fairly not specific- dizzy spells, spontaneous bleeding from my lip, scintillating schotoma, tummy pain (splenomagly), occasional itching and a general non quite myself feeling. Since treatment these symptoms have more than or less gone.You ask an interesting question about 'feeling better once again'. I experience ok nearly of the time but definitely get more tired, just that might exist because I'yard now l as much every bit it is almost having PV. My guess is that you will not feel quite as you did prior to the onset of PV or equally fully 'well' again; as you say the chemo is probable to take contra-indications. I empathise 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 manner of knowing what's going on with your bone marrow and the progression of the PV and whether the status is changing is a bone marrow biopsy. If your blood counts remain stable as a outcome of your ongoing handling then at that place should really be no need for a biopsy.You lot should endeavor to ask your a haematologist about your concerns and the questions y'all enhance. All the best.

We are definatly all different regards to our MPD. The symptoms you take described are normal to me, every day. (I don't go the itching as much equally others but it'south still normal)

With 'My limited education' I've heard little bad about hydroxycarbamide. (Virtually people 'on it' say they similar it regardless of the side affects [To the all-time of my knowledge You oasis't mentioned the side affects.] Again to the best of my noesis this drug is not good for long term employ: But it does work (obviously) (Please too note i'm no GP or specialist in this field, Also I've never used hydroxycarbamide.)

If yous experience that your non getting along with hydroxycarbamide their are alternatives and you can speak to your Haematologist well-nigh it. Interferon Beta (Whoops EDIT: Interferon Alpha thanks Lov2Laf) is an selection, merely this as well has side affects but besides has many bonuses to it. (Again i'm not on this drug)

If you lot feel other symptoms like mouth ulcers so definitely need to seek medical advice. And equally far equally i know you tin enquire to change your medication if you need to.

It is very difficult to say or draw if we are getting worse or not, I find that the Anaemia (Kinda required) that is induced makes usa feel pretty rubbish, it's nigh recursive.

Thank Y'all

I was diagnosed with master Polycythemia with a Jak2 positive exam (July 2012) I accept had 12 lots of blood taken (12x480ml 1 per week) after diagnoses and further claret taken over a menses of 12months (3x480ml 1 per calendar week) when required.

Information technology is normal to withdraw a lot of blood early on to get your HCT downward. 42/14 is good but nigh 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 equally there is about a ten% take chances of leukemia transformation after almost 10 years from utilize. Then if you lot are very senior, the risk obviates due to your avant-garde historic period.

My symptoms are in the main. itching . fatigue. painful joints and limbs. tingling in the feet and easily. pains in the legs. also night sweats, most of my claret counts remain slightly high

Yes, you lot need to get your disease under amend control.

The question I accept is in two parts the first.

Will I ever experience well again and not fatigued?

You should. I take had PV over 30 of my 65 years. I take 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 at that place is no cure) I oftentimes feel that the 'cure' is worse than the Polycythemia . I have had several infections over the last year, I am putting this downwardly to the drugs?

Your immune system is not 100% See if your WBCs are elevated. Elevated WBCs are a poor harbinger y'all may want to switch to interferon. There is a in one case a week manner available, Pegasys. Track your spleen size by ultrasound every 6 months or so.

The doctor accept given me high levels of antibiotics to combat the infections. Is this the norm? or is this the condition worsening? How do y'all tell that you are in fact getting worse when you lot already feel terrible.

Track your CBC over fourth dimension. Get yearly BMBs. Most of import, encounter out a MPD proficient, we have rare affliction. Cheque out the research hospitals listed at mpd-rc.org. You tin can see the expert yearly or and then and he or she can provide a treatment plan to your local oncologist. Utilise your local oncologist for routine care such as CBCs and phlebotomies.

Robert, twenty years a list owner, mpdsupport.org

Bone & Articulation 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 articulation pains in MPD.Several of y'all have mentioned that yous suffer from bone and/or joint pains - sometimes attributed to arthritis. I have seen a number of patients who accept this complaint and information technology has been related to very active proliferative disease. There is a technique for demonstrating agile sites of bone marrow proliferation using nuclear scans. The agent that is injected is technicium-sulfur-colloid. It is the aforementioned scanning agent that is used to paradigm the liver and spleen. Information technology is taken up past macrophages which are cells derived from monocytes and,ultimately, from the bone marrow precursor jail 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 basic and can be seen even out in the fingers and toes when os marrowscanning is washed.

The proliferation within the bone marrow cavity may crusade pressure level inside the bone that, in turn, causes inflammation of the covering ofthe os(periostium). The resulting periostitis may exist 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 information technology causes.

Although other forms of arthritis may be causing your pains, if no conventional cause is found, they may exist due to MPD. Talk to your doc about it if y'all have bone or joint pains. Also, consider gout which produces very acute arthritis involving just one joint. Hope this helps. Dr. Gilbert

I accept ET, JAK2 status unknown. I take been on Interferon-a for just over ii years. My pain is mainly in the calf, thigh and haunch muscles, sometimes also in my lower back. The thigh muscles really seize if I have a longer walk or represent any length of time and occasionally experience as if they have torn and the leg gives mode so I have to sit. They experience better again after a while. My platelet count is currently around the 250 mark. Anyone know what causes the muscle hurting?

I accept been experiencing severe symmetrical leg pain terminal iii years. My HGB and HMT have been high terminal two years which can exist caused by taking testosterone. Earlier I felt the hurting was correlated with my testosterone dosing from having hypogonadism. Besides, I take bad hip and prior ankle surgery then I tended to write off some of the pain to leg injury. The pain always seemed to start within a calendar week when dosing on a 2 week dose interval so the dose regiment was changed to every 6 days. I had very good iii to 6 months no serious consequence and more minor leg pain flare ups. Testosterone can exist flushed out of a person's body chop-chop as non all persons are the aforementioned. I was tested for arthritic conditions and all negative. Also, I have a lower EPO and so high RBC not coming from kidneys.

Before my leg and arm pain was always adjacent to knee and elbow joint, in the tendons, merely never in the joint. Almost always symmetrical in the legs, simply when symmetrical with the legs and elbows it hurts super bad and painful. At present, sensation is feeling similar its in the os. My flare ups come and concluding maybe an hour and so tin speedily get away. My CBC take had high HGB and high HMT for last two years except it was assumed to exist from testosterone therapy. The leg and os pain is difficult to describe simply 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 concluding half dozen weeks the pain has become some other entirely different awareness from tight tendons to the bone near the articulation area. As well, my WBC and white blood cell factors are going higher with each blood test in concluding calendar week. Also, when I get symmetrical leg and elbows pains my dorsum has started to tighten drastically at my shoulder blade muscles in back.

Regardless of Jak2 issue, I have had polycythemia vera for 2 going on three years with HGB and HMT never being normal in final 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 principal or secondary. I would hate to find information technology is secondary from taking testosterone because it has been a very painful three years.

Tin 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. Besides, my flare come on hard and hit pain threshold of 8 to ix, then articulate up. On hard hitting pain flare ups I tend to either want to fall comatose and rest, or I exercise fall comatose right afterwards the aforementioned as when the torso is sick.

Not what yous're looking for?

You lot may also like...

Who else has Polycythemia as a condition

I have been diagnosed with Polycythemia as a condition rather than a disease so non PV. After over a

Side effects of Hydroxycarbamide

I have Polycythemia diagnosed March 2017. Platelets non extremely loftier 600. Haematologist put me on...

Just been diagnosed with Polycythemia Vera

months with fatigue,confusion,ringing in the ears,and very severe tingling all over which feels...

I've had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis

Skillful forenoon. I was diagnosed near x years ago with Polycythemia Vera. I am Jak2 positive. I was...

Polycythemia/Brain Tumour?

having some more tests. I have been diagnosed With Polycythemia JAK2 for over vii years now and...

loftistherameatelf1976.blogspot.com

Source: https://healthunlocked.com/mpnvoice/posts/130172620/polycythemia-is-it-possible-to-tell-if-the-condition-is-worsening-or-staying-the-same

Share this post