haemoglobin

[Brychni]

Hello

do haemoglobin levels go down as well as up with PRV?

[hunter5582]

HGB can certainly go down with treatment just like HCT. Both can also vary with hydration. Dehydration can make it appear higher than when you are normovolemic. Decreased iron levels will also decrease HGB/HCT, which is the intent of phlebotomy in treating PV.

[Brychni in reply to hunter5582]

Thank you. I'm not diagnosed. I have an iron deficiency but high haemoglobin and then off the scale haemoglobin incident which then went down. Does this happen with PRV? It has been suggested because of lots of other issues that I might have prv (including family history of prv, CLL, SCL. and others).

[hunter5582 in reply to Brychni]

Sudden sharp HGB spikes are not something I have heard of with PV. It is hard to say what could be possible with complex cooccurring conditions. HGB generally increases due to hypoxia, which can occur for a variety of reasons. High HGB in the presence of iron deficiency is suggestive of PV, but not definitive. If it has not already been done, your care team should be testing for the JAK2 mutation, EPO, and other blood work including a CMP.

This is all something to discuss with a MPN Specialist. Just in case you have not seen this before, here is a link mpnforum.com/list-hem./

All the best. Do please let us know what you learn,

[Brychni in reply to hunter5582]

thank you - I'm going to be referred to haemotology , so assume that it will e checked for then. Or is this something I should ask the GP to test for?

[hunter5582 in reply to Brychni]

All the above is part of standard assessment for PV or any other MPN. There will be more tests than those. I would imagine your GP already did a CMP. Waiting for the testing depends on how long it will take to get to the hematologist. It is important to see a MPN Specialist rather than a regular hematologist. Most hematologists have little to no experience with MPNs. Hope you are able to be seen soon so you can get answers to your questions.

[Brychni in reply to hunter5582]

no, my GP wasn't the one who has connected the dots. I've been in hospital where the HGB was discovered and the doctors there have written to my GP to say I should now be referred to haemotology. I have a lot of other things going on which have been unresolved but this now may be clearing the picture. I have rheumatology on Monday as I have Undifferentiated Inflammatory Arthritis too but am 'in betweeen ' medication and consultants but have also been in hospital three times with severe migraine/cluster headaches. I'm taking Topiramate for that but have only been on it for a few weeks and still increasing the dose. I get unexplained bruising which GP doesn't seem to be worried about and strange dark purple round bruises that sometimes come up. ALso have had phases of heavy periods and nose bleeds although they have come and gone.My father and his mother had blood cancers , my father CLL with Richter's Transfromation and my grandmother with PRV with another kind of Leukameia.

[hunter5582 in reply to Brychni]

It certainly sounds like there is a lot going on. Accessing an integrated treatment team that includes a MPN Specialist will be very important to optimal care. There is a link between MPNs and migraine and to inflammatory disorders. At the core, MPNs are inflammatory disorders that cause our bodies to make too many inflammatory cytokines. This causes us a host of symptoms and issues.

I also experience osteoarthritis in may joints. I have found curcumin to be more effective for this than anything else.

I have a different kind of migraine, which is a longer story. The short version is that CGRP inhibitors are one of the most effective medications available for migraine and have the most favorable side effect profile. Ubrlevy works well for me for occasional acephalgic visual migraines. My niece uses Ajovy to prevent migraine and Ubelvy for break-through migraines. She tried topiramate, but could not tolerate it due to the adverse effects (severe brain fog). She says the CGRP inhibitors have "transformed my life."

I hope you get to the bottom of all of this and find solutions ASAP.

[Brychni in reply to hunter5582]

Hi - thank you. I've had my follow up appointment with rheumatology and have my Inflammatory arthritis diagnosis confirmed most likely psoriatic and am back on the hydroxychloroquine with a new NSAID prescription. Not wonderful news but at least I know how to go forward.Yes the Topiramate does make me feel a bit strange and 'out of it' at points during the day but I overcome this by staying active and most days I walk for a few miles. I have been referred to a clinic with a view to nerve blocks and/or some self injectable (can't remember what it's called ) sounds similar to what you have described.

I'm still increasing the dose with Topiramate and had another attack and ended up in hospital again the other day. I'm willing to stick with it though as anything is better than the migraines.

[hunter5582 in reply to Brychni]

The self-injectable may well be a CGRP-inhibitor like Ajovy (remanezumab). This is a monthly injection that is very effective a migraine prevention. This is what my niece has used with great success. She was able to come all the way off topiramate and the other migraine meds. She does also use Ubrelvy (the oral form) for the occasional breakthrough.

Do be sure to discuss systemic inflammation with the rheumatologist. It is a significant part of what we experiences with MPNs. Dysregulation of the JAK-STAT pathway has multiple negative impacts on our bodies.

Hoping you find relief on all fronts.

[Bluetop]

My own haemoglobin levels vary slightly, up or down but overall are kept low (below norm) through the hydroxycarbomide which I take.

[Brychni in reply to Bluetop]

thank you. Just waiting for referral and GP monitoring bloods at the moment. Have been taking ferrous sulfate for the iron deficiency for a couple of months but they don't seem to be working.

[Dodders]

If your HGB remains low then you should probably have blood tests done as has been suggested, and trephine and bone marrow aspiration. Stability is the one of the main goals for patients with an MPN and so any ongoing and/or significant changes should be investigated.