Hi I’m seeing my haematologist just before Christmas and am going to ask for shared care with Guys hospital. I just wondered how long it usually takes to hear from them.
I’m not a complex case but am interested in changing from hydroxycarbemide to Pegasus. I also feel my haematologist is too keen to keep platelets under 400 and wants me to take more hydroxycarbemide which I’m not happy about. Do Guys take on everyone who requests their input?
I would appreciate if I could hear of others experiences.
Thank you Irene
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My consultant is in touch with Claire Harrison and she basically has said the same as my own doctor.I have MF and MDS and difficult to prescribe drugs which will lower immune system as I have Bronchiectasis (which is never great). I am taking hydroxicarbimide 1 tablet 5 days a week and at last Platelets in the 400 sFor me I'm ok on it and wary to change to anagraide or interferon at moment.
Good luck....I'm sure you'll get there.Lynn.
PS.It took awhile for him to contact her as he wanted bone marrow biopsies but after 3 attempts couldn't get a decent one !.
Not sure how long it takes but I was referred by local Heam 2 weeks ago as I asked for a second opinion.I have ETjak2 and have had to stop HU due to allergic reaction.Have been offered choice of angralide or interferon but due to other autoimmune issues want some extra imput.Will also be having my first BMB
Seeing my current local Heam on 12 Dec so it's fingers crossed for Guys to be in touch by then( local Team thought that was poss)
There no harm in asking for the extra support go for it!!
morning I am ET jak 2 positive been on Hydroxycarbamide for nearly a year I had instant dizzy reaction like labyrinthitis which lasted months and treated with prochlorperazine. My haematologist said it was nothing to do with medication . I have constant fatigue which increased with increased dose . I suppose my question is what reaction did you have to Hydroxycarbamide. ?
It does deal well with my platelets and I am negotiating to reduce dose rather than keep putting dose up . I did have a second opinion at Guys who were brilliant but really handed me back . Saying they would do some things differently but respected their colleagues efforts .
I think I am coming to terms with condition I have it appears had for many years but didn’t know ,just had lots of random symptoms and was under lots of consultants
does anyone else feel that dealing with the change from feeling something is really quite wrong with you to finding there actually IS something wrong which will require not very nice medication for ever ..
is half the battle .
It is encouraging to hear on this site that many people are leading pretty full normal lives and I do write down the areas where I have improved. So working on some positivity
It does sound like shared care is a good balance good luck to all L
Hi TipseyI had severe itching,mouth ulcers,fatigue and then a plaque(spottie) rash covering too half of body and the in to hair line.I only took Hu for 6 weeks so 12'tablets.
I was initially referred by GP to my local hospital in Essex where the consultant diagnosed ET . He then immediately referred me to Guys. I had my initial consultation with Guys approx 4 weeks after & have been under them since {about 4 yrs now).
Thank you for your reply. My haematologist is at Colchester hospital. I do hope he is fine about me wanting shared care with Guys. Are you on Pegasys and how are you getting on.
Hi I’m on hydroxycarbemide 9 tablets a week but my haematologist wants to keep my platelets under 400 and probably will be increasing my dosage. I’m not happy about the amount of my hair thinning and worried about skin cancer as I did sunbathe a lot over the years.
I am interested in Peg . Am I right in thinking that you are still having hair problems on Peg?
Yes, (et Calr) my hair thinned but never got better when I changed to Peg. I had to ask for Peg and up until the change 17 hu and 9 anagrelide a week to keep under 420.
How long was it before Peg worked? Have you found anything to help with hair thinning? So many questions but I’m trying to find out everything I can. Thanks
A week 2 yrs later and I’m still extending time between each dose. Currently 90units every 25 day. I speak to my nurse on Wednesday I might try every 28 days
Hair- NOTHING, I’ve tried biotin minioxidil( regain) currently taking that and finistacide. Booked in for hair transplant for receding hair line and got rejected !!!
I requested a second opinion from Guys Hospital and my haematologist at Colchester was happy to make a referral. He said he often had contact with them
I am with Dr Campbell and once I had the second opinion continued with Colchester General as no differences in my treatment and more convenient. Although your consultant is different given he's part of the same team I wouldn't think it would be a problem . Let us know how you get on.
I contacted Claire Harrison myself via email when my platelet levels started to rise and I had to increase my hydroxy dose. All the usual side effects and the worst one for me was the hair thinning. I have a good haematologist but felt I would feel more at ease with a shared care arrangement with a MPN specialist. Claire Harrison replied the next day via email, she had contacted my consultant and between us all decided a move to Pegysus. She also felt running my platelets a little higher would be fine as I do not have any other significant medical problems and exercise regularly. We arranged a telephone appointment which put my mind at rest about a few issues that were concerning me. She pretty much left it open for me to contact her as and when I wish and also advised me that she frequently discusses patient care with my consultant. I have now been on Peg for 8 weeks, and reading the info it also causes hair loss (I am on both hydroxy and peg for now), know one mentioned this when I asked to change despite me telling them that the hair loss was my main concern. Anyway since being on peg I have become quite itchy and my dry eyes have become unbearable (I don't normally have any bother with them as I use drops daily). I have a review appointment next week so we will see what they say. Good luck.
Thank you for your reply as I’ve been wondering how you are getting on with Pegasys. Not good news about your itchy skin and dry eyes! You are on a small dose as well aren’t you? It’s all worrying. I know some people on this site have said their hair has recovered when changing to Pegasys and that could happen. I do hope it works for you. Please keep me posted. Irene
Hi Irene, yes just a small dose, 45 every two weeks but of course I am still taking ten hydroxy per week which I will wean off gradually, all that poison cannot be doing me much good. I have done some research regarding wigs, I pray to god I don't need to follow it up!
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