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GailW

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GailW
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  • Hi everyone I thought I would update on the shingrix vaccine and other issues. He has had his second dose of Shingrix today. No after effects from the first. It is in very limited expensive supply and the GP practice have to order it specially. You have to make sure they understand! He has now managed to stop steroids and…
  • Hi everyone, I am so sorry not to have replied but had not seen your latest comments. He has been on Ruxolitinib for 9 weeks. No issues until now when his haemaglobin has dropped to 94 and haematocrit today 29. This is borderline to be able to continue his ECP!. RBC only 3.15 previously fine. This may be due to Ruxolitinib…
    in Ruxolitinib Comment by GailW July 2022
  • Thanks so much everyone. Just had a face to face consult with the team. He has so much going on at the present so not to have shingles vax now and he is on Aciclovir anyway. Not sure what the Aciclovir reduction protocols are when the time comes! Ruxolitinib is on hold now. Thank you Claire I will ring as he has a couple…
  • Thanks Steve Yes beginning to feel a bit weary!! But on we go trying to be positive! All the best Gail
  • Hi Steve Many thanks for this. Will read tomorrow. He has so many issues that we are not sure which are GvHD or not. Yes ECP is costing that sort of money which he is very sensitive about using it up!! We have felt it helped the dreadful oral GvHD but when that abated scleroderma arrived! All very difficult. Would love to…
  • Hi Steve & Tom, I have just seen that I never responded to your helpful,kind replies, remiss and rude of me, my apologies!!! We decided to defer the MMR due to immunosuppression ongoing. I have responded to Steves query re ECP in my recent shingles post. Checking antibodies will be requested when the time comes to reassess…
  • Hi many thanks for replies. Yes it has been a long haul with one condition developing after another. As soon as one issue abates another rapidly rears its head !! Firstly re shingles: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1014037/Shingles_HCP_guidance.pdf I have…
  • Hi Steve, I have only just seen this thread but thought the info may Still be helpful to you or to others. My husband has been on fortnightly ECP for 3 years. A few months ago he became even more breathless and found to have anaemia and low iron stores. Previously he had very high blood stores due to several blood…