Feel tired after changing frequency of venesections
Posted , 7 users are following.
Hi, I've been having venesections every 2 weeks since the start of summer, on my last visit my consultant said my blood count was where it should be and that I don't need a venesection for 6 weeks now. I still have 3 weeks before my venesections but starting to get really tired. She did say my platelets were going up and she would need to keep an eye on this. Has anyone else had this tiredness aswell? I think I've picked up bugs really easily as well and they seem to take longer to get rid of, is this normal? Any tips on how to feel better with this disease would be appreciated, I'm 41 and dread having to live with this tired feeling forever x
0 likes, 8 replies
john17871 suki8786
Posted
I'm not totally certain this was the cause, since I have other things being checked out. But, I was getting a pint taken once a week, ended just last week. Though Polycythemia gave me occasional dizziness, it got very intense once the letting began (from day one). It's been now over a week since my last one, and I seem to be getting better. I also made the bad choice of going on a diet about the same time they began (due to high liver enzymes). I think what happened was along with the red cells, they're also taking out much needed goods, and when I dieted, it made it harder to replace those beneficial items. I dropped off the diet the last few days, and I "seem" to be feeling better when it comes to the dizziness. Since I have other conditions though, i'm not certain of the cause or the solution, could just be a coincidence. Some people only feel temporary effects from blood draws, but I understand some suffer symptoms from long term letting...I think I certainly did. This seems to be more common in those who suffer from an abundance of iron. I also began taking vitamins to help replace my losses, which could have contributed to my improvement. Certainly couldn't hurt, just be sure the suppliments do not contain any iron.
Rainbows_end suki8786
Posted
you will feel lethargic some of the time whether you take Hydroxycarbamide or have venesections. You will not have the same immunity to bugs etc., because as the excess red blood cells get removed it upsets your vitamin balance mostly B and B12, check with your Doctor if you can take a supplement.
suki8786 Rainbows_end
Posted
Hi, I have been taking supplements and make sure they don't have iron in them, I had been feeling much better after venesections but have had some sort of bug which is taking ages to get rid of and taking a real toll on my body
Not on anything other than venesections, it's a horrible feeling when you have no energy, I still go to work full time but it's getting hard and I've only recently been diagnosed
Suki
Rainbows_end suki8786
Posted
Hi Suki,
i have found if I take a cold or a bug it seems to take weeks to clear up not days at it used to, I am retired now so it's easy to just to let it take its own time, however if you are still in employment I can imagine it will be a lot harder to cope with, someone suggested to me to take echinacea during the winter months but if anybody is out there that has tried it, let me know. You will get times when you feel almost as good as new when your red blood cell levels start to balance out, dont despair xx
keith28441 Rainbows_end
Posted
Hello Rainbows End and Suki
Laboratory research suggests that Echinacea can stimulate the body's immune system, but it also states that there is no evidence that this occurs in people. Work that one out? Having said that, my wife says that she feels the benefit of taking them. She has a poor immune system as she has Rheumatoid Arthritis and so is susceptible to colds and flu. She, like I have the winter flu jab as well, which seems to help keep the bugs at bay…..mostly!! – You should however only take Echinacea for no more than a 2 or 3 week period. It shouldn’t be taken continuously throughout the winter.
Hope this helps
Keith
Rainbows_end keith28441
Posted
thanks for your post I maybe give Echinacea a go and hope for the best my Doctor is very against herbal medicine but I have seen it work wonders in other people .
peter98873 suki8786
Posted
There will be other patients who are better situated to respond with answers on your difficulties and I am sure your queries will be suitably answered. Generally it is the imbalance of the red cells in the blood that creates most problems. Hope things settle down for you soon.
randal_373 suki8786
Posted
Hello Suki.
I was diagnosed with PV 10yrs ago and have been getting venesections since then. I usually go every 6 to 8 weeks to have 500 cc of blood pulled. I always schedule my appointments on a Friday as I too work full time. I am 52yrs old. I always feel extremely tired after the procedure and usually take a few days to feel better. I am always tired but I have learned to cope with it. As far as bugs go I'm guessing your talking about colds and flu's . To be honest since I was diagnosed with this 10yrs ago I've only had a cold once or twice . Although I often feel nauseated every day just something else I have learned to cope with. There are days I feel better than others . This disease is just something that takes time to get used to but it does get easier with time. . . . . . I hope I've helped to answer some of your questions. . . . . . . Hope you feel better soon.