Request - Reco for excellent haematologists in Portugal

[Iwillwin123]

Hello all,

Will move to Portugal in the near future.

Looking for excellent haematologist recommendations in Portugal.

I am hoping to get reco from people who have personally had positive experience with the said haematologists. 

Also request for the names of hospitals or institutes focusing on Hematology research. 

I have Polycythemia Vera further complicated by Giant Cell ARTERITIS .

I am on Hydroxyurea dose of 500 mg and and a prednisolone dose of 2.5 mg ……. and stable at the moment with both my monsters.

You may please reply privately to me in case reco are not acceptable on this group.

 Thankyou

[hunter5582]

There are no MPN Specialists noted on the one list we have that covers Europe.

mpnforum.com/list-hem./

Others on the forum from Portugal have noted some difficulty finding a hematologist with the requisite KSAs for MPNs. Hopefully someone from this area can make a suitable recommendation. You may need to travel to Spain or France to find a MPN Specialist.

All the best.

[Iwillwin123 in reply to hunter5582]

Thankyou for the list . 🙏

It will indeed be most helpful .

Well , in Europe travel will not be too much of a challenge I suppose.

Only issue is how their medical system will view the cost for that .

I wish someone from Portugal would respond to my request message.

It will be helpful to connect to understand the MPN treatment ropes in portugal before I turn up there .

[Jennytheb]

Hi, I was quite shocked when told I had to commence Hydroxycarbamide, on a low dose to start but that didn't help so now on 3 daily.

I can truly say that this medication has had no adverse affects on me at all. I wouldn't know I am taking such medication.

Here's hoping you have the same results, I am always of a determined nature and was adamant that life would go on as usual. Wishing you the best!!

[jillydabrat]

2.5mg is a very small dose. I am on 1000 mg a day. I have never heard of anyone on such a small dose but if it’s working then that’s good

[Iwillwin123]

Thankyou for pointing that out .

Actually I have made a mistake in stating doses . Very Important to correct it

I am on a 500 mg Hydroxyurea once a day

AND

On 2.5 mg prednisolone once a day for my Giant Cell Arteritis parallel condition with the PV .

I have tapered pred down from 60 mg now to 2.5 mg over two years . It was a hellish journey but resolutely walked the path with the two monsters .