PV Sympthoms
Posted , 8 users are following.
I was diagnosed with having too many red blood cells a few days ago after going into the ER for dizziness. They drained a pint of blood. It came on so suddenly. Before draining, my level was 59%...after 53%. Today I had another treatment, at first I felt better, but now I'm so dizzy and palms are sweating. Note that I have an anxiety issue, so that doesn't help things. No chest pain other than the aches and pains i've gotten used to the past few days. Heads a little foggy, but no major headache. I'm set to have blood drawn each week until it's normal. I'm also weak. Do I need to be concerned with these sympthoms or is this to be expected in between blood draws? If it is okay, what should alert me to get medical help? It feels scary and aweful. Thanks.
0 likes, 47 replies
angela_o..o john17871
Posted
Hello John.
Let's face it, even if you were completely well you would be feeling a bit wobbly if you had donated two punts of blood in just a few days.
Weakness, dizziness and sweatiness are just your body telling you that it has had a nasty shock.
Drink plenty liquid, take as much rest as you can (with yiur feet up if possible) tey not to worry and be kind to yourself.
All the best.
julia15874 john17871
Posted
John are u in the UK? Your symptoms are classic for PV but you need testing for it, have they mentioned you seeing a Heamotologist? Anxiety comes with PV too, dizziness is awful as I suffer from dizziness all the time, it's the headache that comes with it too xx
clem19079 john17871
Posted
keith28441 john17871
Posted
Angela, Julia and Clem all make very valid points. I would also stress that Polycythaemia can be very variable in that it affects people in different ways. No two people are the same both in terms of symptoms and response to treatment. From my own experience, when I was first treated, I was having venesections (phlebotomies) every other day for the first 3 weeks, then they became weekly, then fortnightly and now I am down to monthly. During early treatment, I too felt weak, my dizziness became considerably worse as did my migraines with aura. Since my bloods have stabilised, I only experience the dizzy spells very occasionally but I have not had a headache let alone a migraine for a number of months now. I do suffer from fatigue and tinnitus but feel much better than I did. By 59% and 53% are you referring to your Haematocrit levels (HCT)? – If so 59 is high. Do you know what your Haemoglobin and red blood cell levels are as well? – You say you were diagnosed with having too many red blood cells but have you been referred to a Haematologist? Have you been told that they suspect you have Polycythaemia? Indeed, are they checking you for Polycythaemia? There are different forms of Polycythaemia - Primary, Secondary and Relative for example. Most are very manageable so try not to be too anxious, easier said than done I know. Should you be diagnosed with primary, don’t be alarmed if your platelet count rises. This happens in around 50% of us that have primary PV and again, it’s very manageable.
Hang in there and all the very best to you.
Kind regards
Keith
john17871 keith28441
Posted
Thank you for your replies. I'm 43, have a wife and 3 kids. I live in the USA. I feel better today, a little light headed but not dizzy. No pain like I've been having, I assume it's improving because of the last treatment. Main symtoms have been dizziness, lightheadedness, unable to think clearly, random pains in my joints, abdomin, head and chest. Today is just cloudiness and weakness. It's good to know much of this will be gone after the treatments over the next 4-6 weeks. It does seem to be a bit better after each treatment. Having a family I worry about life expectancy, I want to see my kids grow up. I guess a lot of that depends on whether I have primary or secondary. I've been tested for the JAK gene, should get the results next week. What will that tell me exactly? I'm hoping this is secondary, but if so, there is a risk there as well because it could be secondary to something worst. My liver enzymes were way up, but nobody has said anything about it being cancer levels...i recently quit drinking, so that may be it. I also smoke (have cut down and am quitting). Lung X-Ray looked good as far as I know. I DO know that my blood levels were normal in 2012, if that tells us anything. I don't have my exact recent RBC count handy. My doctor is looking into sleep apnea as a potential cause, but I think he's awaiting the gene test results first. I guess that tells him if it's primary or not? Still trying to figure all this out. I'm in uncharted territory and just learned this disease existed on this week.
john17871
Posted
Also, is it normal to almost feel slightly "drunk" without having drank anything? Kind of like a numb head. If so, will this go away after my initial blood treatments? It's kind of like a foggy head.
julia15874 john17871
Posted
That's exactly how I would describe how I feel, you kind of sway and you feel sickly, as my bloods are rising the symptoms are getting worse and more prelonged. It's funny my husband was asking me this morning how I was feeling and I replied with, "you know when your fresh from alcohol and, well it's like that, you can't walk in a straight line, but your happy when your fresh, this is unpleasant", then I read your post and laughed to myself as I rang the hospital Tuesday as my bloods have risen and I feel dreadful, spoke to my Heamotologist secretary, quess what I'm still waiting their call! It's like they don't care how I'm feeling only coming up with a diagnosis and leaving me until. im waiting for a JAK 2 exon 12 and a EPO result. Ps I get very cold and painful hands too at the moment.
Zapamania john17871
Posted
Hi john I also live in the us, nj to be exact. I have been diagnosed with Pv for 4 years now. I do have the jak2 mutation. I no how you feel. I never heard of this so it can be very confusing. The 2 things you have to pay attention to are your platelets and hematocrit. There are really only 3 treatments. Phlebotomies and aspirin, Hydroxyurea and Jakafi. You need to get yourself hooked up with a cancer center hospital and a dr that treats MPNs (myleoprolifitive neoplasms). It's a learning curve. I'm still a little vague. Good luck with your journey. Linda
keith28441 john17871
Posted
Yes, I forgot to mention that I too had “head fog” and couldn’t concentrate but this did improve as my treatment progressed. Most people with Polycythaemia enjoy a long and fulfilling life whether diagnosed with a primary or secondary condition. You will hear the term “median survival rate” and some websites go as far to say median survival rate is 15 years. Others say 10 years, others 20 years. Median survival is often misunderstood to mean the maximum life expectancy. In fact, it is the time at which one would expect half of a group of patients diagnosed at the same time to still be alive. The majority of patients diagnosed with Primary PRV are over the age of 60. Some are in their late 60’s, early 70’s and older when diagnosed. So 15 years later these patients are then elderly and will have died from natural or other causes, not by Polycythaemia itself! Many of those still alive 15 years later can continue to live for decades especially those younger patients. Yes, there is a risk of transformation to Myelofibrosis but this is rare and also Acute Myeloid Leukaemia, which is rarer still. There are people on this forum that have lived with this condition for over 20+ years and they are still going strong! Treatment for secondary polycythaemia depends very much on what is causing your symptoms. Reading your response to secondary polycythaemia, you are perhaps worried that you may have liver or possibly kidney cancer. These can cause you to have a high red blood cell count but conversely, there are many many other factors that can cause you to have these high readings, sleep apnoea being one of them, non-malignant cysts, but so can dehydration and even living at high altitudes would you believe can impact on your red blood cell count. Another possible cause is Hypoxia or COPD and smoking can certainly be a possible cause. Most secondary polycythaemia can be cured by treating the cause of it.
Sometimes you can scare yourself to death especially when trawling through websites. You may not have polycythaemia but even if you do John, as mentioned in my earlier posting, in most cases the condition whether primary or secondary can be managed and/or treated.
Hang in there all will become clearer during the coming weeks.
Kind regards
Keith
john17871 keith28441
Posted
On the cloudiness between blood draws, is there anything I can do to soothe it? I already take 81mg aspirin per day. Once I get over the dizziness after a draw, I feel much much better, but then I cloud up again a few days later prior to the next draw. Does this sound normal to you? I imagine after a draw, the blood starts replinishing itself, but not as fast as it's being taken out (hopefully) in the long run. Hopefully, after a few weeks, this will become few and far between, leading to more time being allowed to pass between blood draws. With this illness, it's as if my own blood has become my own worst enemy.
angela_o..o john17871
Posted
keith28441 john17871
Posted
Hello John
Unfortunately, I can’t offer any advice on how you can soothe the discomfort following your blood draws. I would recommend you speak to your Doctor or Haematologist about this. It’s important however to drink plenty of fluids (preferably water) before and particularly afterwards following the blood draw, so this may help. I expect the nurses offer you this once they have drawn your blood but it is important you remain well hydrated afterwards. I am always offered a cup of tea following my blood letting and if I’m really lucky, I sometimes get biscuits as well…LOL
In answer to your question of how long it takes to replace the blood that has been taken. The plasma from your donation is replaced within about 24 hours. Red cells need about four to six weeks for complete replacement. That's why under normal circumstances at least eight to twelve weeks are required between whole blood donations. Obviously in our cases, it has to be on a more regular basis at first in order to free up the overproduction of red bloods cells that we have, thus allowing our blood to become thinner and able to flow more easily. Yes, the frequency will become less as time goes by. As mentioned in my earlier posting. I was originally having blood draws every other day for 3 weeks, then it was once a week, then once a fortnight and now I am down to once a month. Hopefully, I will be able to get it down to once every three months, which appears to be the case with a lot of people that are on this forum.
Hope this helps
Keith
john17871 keith28441
Posted
Thanks for your informative answer. A draw once every other day, wow! You must have started out with a very high RBC count! After hearing that, for me, maybe once a week to start isn't so bad after all.
john17871 keith28441
Posted
My blood levels are about 46% now, had my last letting on Thursday, but I'm still experiencing dizziness. Is that normal? Since my doctor is leaning towards secondary, I'm wondering why he's not tested my EPO levels (unless he tested during the JAK2 test and just didn't tell me). I figured he would since they're pointing towards liver issues now. US revealed no lesions on the liver but did find fat, but of course, they don't always show up. Not sure if it's the Poly causing the dizziness, my lifestyle changes, the liver or something totally different.
keith28441 john17871
Posted
For the first 3 to 4 months of Phlebotomies, I was still experiencing the dizziness but this has improved significantly over time. I do still get them occasionally but not that often. How long have you been having the Phlebotomies? Most Haematologists like to keep the Haematocrit at 0.45, sometimes mine goes as low as 0.41 following a Phlebotomy although it’s back to the limit a month or so later. Reading your post, am I correct in assuming that your bloods haven’t in fact gone below the 0.45 target yet and that they are still trying to get your HCT down rather than keeping it under 0.45? If that’s the case, this may explain the dizzy spells as your bloods are not yet under control and your condition stabilised. When using the term stabilise, I should point out (although I am sure you are aware) you will still need on-going Phlebotomies/treatment but it’s just getting it more regulated. There could of course be another reason why you are experiencing these dizzy spells, it could be caused by secondary polycythaemia or something unrelated, there are so many variables. Some Doctor’s believe that dizziness is not a symptom associated with Polycythaemia but I challenge those that say this. My own Haematologist confirmed that it can be caused by Polycythaemia and if you trawl through some of the more reputable websites such as Mayo Cline (US) or here in the UK, NHS website, MacMillan or Cancer Research UK, they further support this. Concerning your liver, I have what is known as a non-alcoholic fatty liver condition, which doesn’t cause me any issues. The first I knew about this is when it showed up on a scan some years back. I like the odd glass of red wine or real ale but I am not a big drinker. Some liver issues can also cause secondary polycythaemia although I am sure your Doctors/Haematologist will investigate all avenues. I hope John, it is not too long before you get a confirmed diagnosis.
Take care
Keith