First venesection - symptom query

[LittleLuna]

Hi All

I had my first venesection for PV on 11th Oct.

My HCT went down to 44.3 which was great. That night I got a headache and visual flashes(symptom I had often but not had for months). At 1AM, migraine started with nausea kicking in a few hours later. Wipe me out for 24 hours with some of my old symptoms kicking in over the next few days - itchy hands/feet, numb hands, flashing lights/vision disturbances and brusing on my legs. I then started to feel pretty good, fatigue relief for a while but some of above symptoms hanging about but not too bothersome.

This week I am starting to feel very emotional, low tolerance, more frequent insomnia, itch, numbness in hands and finally today redness in my neck and face kicked in with hot feeling. I had this a lot pre venesection and just wanted some blood out to see if it helped.

Just wondering, have any of you noticed some old symptoms exacerbated after venesection or is it just coincidence? I know its only the first one and am sure it will settle but trying to understand if some symptoms can come on after venesection or is that unusual. Is it normal to feel crap after feeling good after the initial few days.

I have asked for blood test tomorrow to see if HCT has crept up. But again, I have low level HCT max so far 51.1 but have a high symptom burden in general.

Hope you are all well. Have a great evening. Raining, damp, cold here in Fife, Scotland

😀😊

[Barbiebreath]

I know some are wiped out by the phlebotomies but I usually feel better. I’m sorry you’re having a rough go of it. Hugs!

[LittleLuna in reply to Barbiebreath]

thanks Barbiebreath

[CGRed]

HI LittleLuna, are you on aspirin or any other medications? Also are you drinking plenty of fluids. I found after a number of venesections the itching especially in my feet began to become less frequent.

I was quite fatigued for the first few weeks as my PCV readings were very high but gradually began to see the benefits of the venesections.

Hope you are feeling better.



[LittleLuna in reply to CGRed]

thanks. Yes, if i had drank any more water i would have drowned lol. I made sure even more than usual.

My fatigue has improved which is one of my worst symptoms so thats good, even though sleep is not great.

Its watch and wait i think.

Great to hear yours and others experiences following venesection.

I am on aspirin only currently

[J12VR in reply to LittleLuna]

I usually put some electrolyte tablets in my water and eat a banana before my venesection. Makes your veins nice and plump and helps with the exhaustion after. I usually sleep after, but I do find the itchy hot feet and other symptoms vary, I can't pick It either, it's so up and down.

[LittleLuna in reply to J12VR]

thanks JV12R

I will keep that tip in my tricks for next one coming up.

Really appreciate everyones advice and support

[hunter5582]

Sorry to hear about the uptick in symptoms. I never had a short-term reaction to venesections. I felt the same afterwards as before. No better. No worse. Once the HCT was reduced through repeated venesections, the hypertension was reduced. In the long term, the iron deficiency symptoms became worse than the PV symptoms. Reduced energy levels, reduced concentration, alopecia, and reactive thrombocytosis (+200k).

I do not think that the symptoms you report would be a common reaction to a venesection. It may well be more related to a cycle in your PV. There is more to PV symptoms than too many red blood cells. How blood cells behave, microvascular symptoms, mast cell/histamine activity, excess inflammatory cytokines and all part of the picture.

Getting a follow up CBC certainly makes sense. I would also suggest that you be sure to let your MPN care team know about the spike in PV symptoms. This needs to be evaluated to respond effectively.

Hope you get answers soon. FYI - here is Harpers Ferry, WV - Autumn has arrived. Clear, sunny and brisk. The leaves are changing colors. My favorite time of year!

Autumn on the Shenandoah River

[LittleLuna in reply to hunter5582]

thanks Hunter. Its certainly lovely there.

I have blood test today but as you say not as simple as HCT level. I know MPN are so complex and symptom burden is very confusing indeed.

It’s difficult to know whats related to what condition that might be going on at the time. Obviously got to give venesections and chance and hope it settled and this is just a blip.

I will defo let haematologist know how i uve been. I have an appointment in Nov. I also see private specialist in Dec so interested to hear his take.

Have a lovely day ❤️😎

[Cat1001954]

wish you better

[LittleLuna]

thank you. Tad better this morning. Trick will be keeping tolerance levels in check lol

[ainslie]

I’ve venisected for about 10 years and my view is some of what you report could be the venisection and some typical PV. The visual migraine and headache and flushing is fairly typical PV. I noticed my itch worse after venisection, fairly common, numb hands or bruising I have not had. The upset emotion and hence sleep is quite poss emotional/ physical reaction to venisection and emotions of being diagnosed.I used to notice emotional change , worse at beginning but after a few months settled. Being diagnosed and then venisected is a trauma to mind and body, some react,some don’t. Some feel better after venisection. I could not tolerate the 450ml venisection and for many years did 125-150ml every month or so, that made a big difference. The visual migraine and some symptoms may settle once your Hct is lower, some feel better if Hct well below 45, ie me as a male at 43 or less , some even down around 40, especially for female. I assume you are on daily baby Asprin, important to help prevent migraines. I would defo discuss whole thing with your Haem or Haem nurse, the bruising and numbness is not familiar if your platelets are normalish so best check that with them. I hope it settles soon, it’s easy to say but you will get more relaxed as time goes on and your body gets used to the PV and venisection.

[LittleLuna in reply to ainslie]

Thanks ainslie

I don’t think i have been too anxious. Masking some of it probably.

Numb hands is one of symptons I had quite badly but did not associate with PV until I started aspirin and it reduced it by about 90%. My specialist said that symptom reduction was classic PV..

I think there are so many weird and wonderful symptons that come MPN shows us. Trick for me is trying to stop figuring out whats related to PV, peri meno, endometriosis and life lol

Thank you for advice and support

[Mauritiu]

Hello from Perth in Tayside

Sorry to hear of all your symptoms and struggles, the PV is really not fun.

I really struggle with venesections. I was diagnosed with PV last September. Initially I had 6 venesections 2 weeks apart, then a further 2 in February this year which brought my HCT down to 40.

I felt awful till about May of this year when i felt my energy levels increasing. It was so nice to feel better 😊, I guess my iron levels were recovering. I needed another venesection 4 weeks ago which floored me again, although not as bad. Last week I began to feel better.

I guess I was lucky to go 7 months without a venesection.

I saw my haematologist on Monday past and agreed venesections don't really agree with me. We have agreed, if I only need 1 or 2 every few months that was the best way to go, rather than meds just now. She suggested a further blood test in 6 weeks. I left the hospital feeling rather pleased only to get a phone call later that day to come back in 2 weeks for a blood test as my HCT was hust under 45 🥺 ah well....

I also have had horrible migraine visual disturbances but not the headaches. My symptom burden is manageable just now.

I hope you feel better soon, its such mystery with PV to make sense of it all , blood levels don't seam to marry up with symptoms😢

look after yourself

[LittleLuna]

hi Mauritiu

Thank you. I think it is a watch and wait. I asked for a blood test and got one yesterday(no tesult yet). Not sure it will be useful but wanting to see if levels are up, down etc.

Felt better yesterday in general with few manageable symptoms.

Hope you are feeling ok.

Have a lovely weekend

[Cityreach]

Hi,

ope you feel better soon

[Cityreach]

Hi LittleLuna

Hope you feel l better soon and some ofyour symptoms pass

[MAP44]

Hi,

Are you taking a low dose aspirin each day?

I found that really helped with the tingling in the hands and feet and the migraines.

Some good people here take 2/ day to help with their symptoms. I am not suggesting adding to the protocol but it hasn’t been mentioned. As always talk with your medical team. Hope you feel much better very soon.