Update

[lizzziep]

I saw a consultant yesterday, different from last time, after being off Anagrelide for four weeks my platelets had jumped to nearly 800, however my anaemia was worse! I was taken off the Anagrelide to help get my blood count up but that didn’t work! The results from the Next Generational Sequencing aren’t back yet so I’m back on Anagrelide for four weeks until next appointment. Also been prescribed EPO injections to boost red blood cells, once a week for 4 weeks. Didn’t get a demonstration of those just verbal instructions. So waiting for my niece, who is a nurse, to call in to supervise my first one.

So I’m not a lot wiser. This consultant said she was fairly certain I’m in the very early stages of mf but waiting for the NSG results to confirm before any change of medication.

[Inca]

me too Lizzie,M F next port of call.My reds & plaquetaire have crashed.Consultant halved my Jakavi to see if bloods would raise.No....H C T is even lower but Plaquetaire gone up to 80.So for me next is another B M B & blood transfusion.I am to say the least exhausted all the time.legs hardly hold me up ! Hope you soon get sorted,I am lucky here my G P & consultant are great& my male nurse who tests my my blood every month is now after 12 yrs a good friend same interests horses & Art,So it’s a morning kitchen table chat....helps to keep me cheerful.Very Best,Sally🤗

[lizzziep in reply to Inca]

Thank you x

[katiewalsh in reply to Inca]

Hi. I’m sorry to hear this. Is a BONE MARROW TRANSPLANT an option for you? Katie

[lizzziep in reply to katiewalsh]

That’s never been mentioned, so I don’t know, probably depends on the results of the sequencing tests.

[Inca in reply to katiewalsh]

I did reply to you but it disappeared to another galaxy!! No Katie ,I am too old now. Maybe an option for Lizziep.Hope all is going well for you,we never know the day all changes.Very Best to you🤗Sally

[mhos61]

Did this consultant have any answers about your angry leg rash?

[lizzziep in reply to mhos61]

She was of the opinion it is veinous insufficiency, waiting for a doppler scan to confirm that.

[mhos61 in reply to lizzziep]

I agree with others’ about consulting with an MPN Specialist. It really doesn’t have to be a logistical issue. You can choose to have a phone consultation with Professor Claire Harrison, which believe you me is highly efficient. Any tests she thinks are necessary can be performed at your local hospital and be reviewed by her. Maybe she could also review your recent bmb.

I now receive ‘shared care’ with Claire Harrison’s team and my local haematology team. I always wanted to consult with an MPN Specialist, but like you I was put off by the distance involved. I think you live in South Yorkshire if I remember rightly. I live in North Notts, so not a million miles away. I haven’t had to leave the comfort of my living room sofa!

You will need to be referred by your haematologist or GP. Don’t let this put you off either. Any reasonable healthcare Professional would deem it an appropriate request. You have ‘changes’ which need addressing by an MPN expert.

[lizzziep in reply to mhos61]

Thank you, yes I’m in South Yorkshire. I’ll try to bring it up at next haematology appointment (not good at pushing myself forward) no chance of GP doing it, can’t get to see one at the best of times, just seems to be different locum all the time, who have varying degrees of interest in the patient, if you can actually see one.

[mhos61 in reply to lizzziep]

Time to be pushy Lizzie👍.

[hunter5582]

Did you choose to change hematology consultants? I hope so. Seeing different providers every time decreases the quality and consistency of care. Also hoping you have arranged to see a MPN Specialist rather than a regular hematologist. A MPN Specialist would also be the best suited to assess the issue on the leg regarding whether it could be MPN-related.

The erythropenia is consistent with MF, but also with other things like iron deficiency. I am assuming they did a full iron panel prior to ordering the EPO injection.

Hope you get answers soon.

[lizzziep in reply to hunter5582]

Thank you, yes all iron levels checked. At the moment seeing my local haematology team, difficult for me to travel to get to another hospital. The NHS is not in a good way at the moment, doctors and nurses are going on strike and lots of operations and appointments are being cancelled and postponed.

[Exeter21 in reply to lizzziep]

ask for a phone consultation from Professor Harrison at Guys Hospital London or one of her team . They are the experts . I was on a downward slope on medication & feeling like a Guinea pig until I read about Claire Harrison she has sorted me out & now feel great on Interferon. At my local hospital the Dr I saw on one occasion intended putting me on a ridiculously large amount of a drug which I refused. It’s essential you speak with an MPN expert as they are the knowledge behind our complaints & then will oversee your care plan with local Haemotology. NHS is in a mess but you won’t suffer lack of care if you seek further advice from MPN. It doesn’t mean you travel to see them they will discuss everything over phone with you. So glad I did it.

The MPN list for UK is on this Health Unlocked site 👍 Julia .

[hunter5582 in reply to lizzziep]

Exeter21 makes a very good point about the telemedicine option. You do not always have to travel to consult a MPN Specialist. Some things can be handled quite well via telemedicine. During the height of the COVID pandemic many of my appointments were via telemedicine. I would note that televideo appointments are preferable to telephone visits. Televideo visits support better communication and are more humanizing.

The approach Exeter21 suggests is also what I do. I consult a MPN Specialist periodically to determine a care plan and a local hematologist delivers the ongoing care. This arrangement works well.

All the best.

[Wyebird]

hi have you explored the possibility of having Peg. Not sure if it’s used for MF.

Sending hugs and 💐

[lizzziep in reply to Wyebird]

Thank you. Depending on sequencing results I think peg interferon is going to be the next step.