Experiences with

Haemophilia

Hi ,for months now I have had this heamopilus influenzae bug bringing up green mucus ,my sputum tests say Doxycycline will kill it ,in the past four months I have taken three courses of two weeks Doxycycline, they didn't get rid of it ,I am on Doxycycline agian now ,I new after nine days that it wasn't

Leeches cannot be used in cases of physical weakness, haemophilia, or if the animal is taking Marcumar or Pradaxa. ASA can be stopped 3 days beforehand. I get the animals from a medical leech farm. After sucking, the animals are full for 1 year. They are only used once.

I have been on apixaban but was taken off them to do further blood tests. From the test they found that the bloods for factor 8 level was at 221. Does anyone understand what this means and had similar results and were you put on medication for this to stop the risk of blood clots?

At the point of diagnosis my consultant gave me a booklet from CLL Support outlining a list of additional vaccinations to have to avoid catching pneumonia, meningitis, haemophilia influenza and shingles. I think there is a similar list on this site somewhere.

Do you have any excess bleeding disorders like haemophilia? Both questions discount you from applying Shame as would have been good way to monitor antibodies after the vaccines but obviously most of us with MPN’s will be excluded Just wondering why the blood thing excludes us? Melanie

I have been desperate for some pain relief and despite Haemophilia the doctors have prescribed an Anti-inflammatory that at least takes the edge off. I am ginger and very fair skinned this is should half the redness of what I typically deal with.

It is only now sinking in that I carry PV gene, but also have haemophilia gene! One causing risk of clots, the other means my son is at risk of frequent bleeds. All quite bizarre. Still slightly reeling from diagnosis to be honest!

Recombinant factor VIIa for the prevention and treatment of bleeding in patients without haemophilia. Cochrane Database Syst Rev. 2012 Mar 14;(3):CD005011. doi: 10.1002/14651858.CD005011.pub4 Spyropoulos AC, Lipardi C, Xu J et al.

Also the doctor recommended prevnar against puenmococcus and haemophilia-B/Menigococcal vaccination. He wants my GP to arrange this. He is a CLL doctor. If you can throw any light on the above, I would be very grateful Thanks 😊

Hi I have Polycythaemia so am on here from time to time Just been told my two year old grandson has haemophilia! Tried to find a community on here but can’t locate one. Does anyone know if there is one? Thanks folks James

On the 24th April, in conjunction with The Haemophilia Society, the James Lind Alliance and a select group of health professionals, we launched a national appeal for patients with bleeding disorders to participate in a web based survey.

My doctors can't do much in terms of giving me pain relief either since I have haemophilia so I can't take ibuprofen or aspirin and my body is too used to paracetamol I haven't left my bed today. It hurts especially bad when I have major depressive days :/

On the 24th April, in conjunction with The Haemophilia Society, the James Lind Alliance and a select group of health professionals, we are launching a national appeal for patients with bleeding disorders to participate in a web based survey.

I asked my GP to refer me to London and with help from APS support group Kate i went to see Prof Beverley Hunt at the heamatology/haemophilia centre at St Thomas, who has dealt with me in a very professional way.

Is there a connection between itp and haemophilia? My sister and both her sons have haemophilia, my daughter has itp, is there a link or is this just an unfortunate coincidence?

THIS IS YOUR CHANCE TO HAVE YOUR SAY FOR RESEARCH On the 24th April, in conjunction with The Haemophilia Society, the James Lind Alliance and a select group of health professionals, we are launching a national appeal for patients with bleeding disorders to participate in a web based survey.

with numerous things , even spent a week in hospital due to stomach issues but never complained about 2 stone weight gain, sore joints , hair loss , very bad dry skin or tiredness I just thought it was me getting older, since then they found lots of fun things wrong with me ( nothing serious but haemophilia

Now I have morphed again, this time it's to the haemophilia clinic(what next), to find out what is involved in my new chapter. It seems similar to PV??? Having ET + com Willibrand has anyone had similar result/ treatment with this Morph!! RubyRuby is this similar to your experience ? Anyone else??

The next London support group meeting is being held from 5.30-6.30pm on Wednesday 30th April in the Haemophilia Unit on the first floor of the North Wing in St Thomas Hospital. Big thanks to Ann Sumra who voluntarily runs the group and Nurse Richard Glaves who organises the venue and topics.

The next meeting is to be held on April 30th from 5.30 to 6.30pm in the Haemophilia unit on the first floor of the North Wing in St Thomas Hospital.