[hollyhocks]

Hi Charlie, it was really good to hear from you, but not so good to hear that you are having such a difficult time with your health at the moment. I do hope things improve for you before too long, such difficult & complex conditions to have to cope with.

Reading through your previous post I can see that your MDS RARS was diagnosed not long after your HH diagnosis. Poor you, your bone marrow would have found it impossible to keep up with the regular therapeutic phlebotomy. I think I have been more fortunate in that there was a six year gap between HH diagnosis & MDS diagnosis. So following regular phlebotomy, my ferretin level had been stabilised between 20-50 at that time. Although I had had episodes of low blood counts during that time, I only needed transfusions following Surgery for breast cancer & hip replacement. The low blood counts were not investigated until picked up by my GP in 2010 & I was referred to Haematologist for BMB.

No one was quite sure how to treat me at the that time, phlebotomy was considered to be unwise, as a consequence, I developed iron overload. As I became increasingly unwell I was referred to a Specialist Centre in London, treated with Exjade (Deferasirox) & phlebotomy. Like you I had a bad reaction to the iron chelation treatment & ended up in hospital with Acute Renal Failure & Hepatitis.

Currently, I am reasonably well & my blood counts reasonable, my ferretin levels are kept low with therapeutic phlebotomy as & when required. I have requested that only 250 ml of blood is taken off each time as I am so unwell afterwards.

I was considered not suitable to be included in the Luspatercept trial, but like you I have heard that it is showing great promise in treating MDS RARS. As I am 72 & have additional health problems I have been told that a Transplant is not an option. I continue on ‘Watch & Wait’ & try to keep as well as possible whilst maintaining a positive attitude, difficult at times, but I am a private person & do not share my problems with many people.

This is the web address for the UK MDS Patient Support Group, you may find some useful information on there. There is also Closed Group on their Facebook page with a membership of around 600 people, many from around the world. It’s quite an active group, very supportive, lots of postings. I have found it useful in getting a better understanding of MDS, treatment options & effect. As yet I have not met anyone on there with HH & MDS RARS!

https://mdspatientsupport.org.uk

Take care of yourself Charlie & keep strong, as you say it is a very difficult balancing act & full of complications.

Best wishes Heather (Hollyhocks)

[hollyhocks]

Hi Charlie! I also have Hereditary Haemochromatosis(HH) with MDS RARS so was very interested to read your post when researching the topic on line. I am 71, I live in the UK and was diagnosed with HH in 2004. Weekly venesection for 18 months reduced my serum ferretin levels to the recommended 20-50 ug/L During this time my blood counts were low & my Haematologist recommended a bone marrow biopsy, I decided not to go ahead with it as my husband had just been diagnosed with prostate cancer & I thought I had enough on my plate at the time. My husbands surgery went well and he made a good recovery & my serum ferretin remained stable with intermittent venesection. In 2010 we moved to a new area so had a change of Hospital & doctor, a routine blood test showed that my blood count was low and a bone marrow biopsy showed that I had MDS RARS. I was the first patient that the hospital had had with the two conditions, the haematologists thought it was too ‘risky’ for me to have venesection so my serum ferretin was allowed to rise & I became very unwell with iron overload & developed Porphyria Cutanea Tarda as a result. I was eventually referred to Kings College Hospital in London, a centre of excellence for MDS, I was given high doses of Deferoxin (chelation therapy) and venesection to reduce my iron load, I developed Acute Kidney Injury (AKI) & Acute Hepatitis & was hospitalised for some time. I had remained iron deplete for the past 18 months & have not required venesection during that time, my blood counts have been reasonable & have not needed transfusing. I have had a couple of infections needing antibiotics this year and I am experiencing frequent & prolonged episodes of fatigue. My last serum Ferretin was above 50 so will need venesection before too long. The medical team are not quite sure how they are going to manage my condition long term as non of the current treatments or even drug trials seem suitable, I am just told ‘it is complicated’!! I did read something on the internet that suggested that the combination on Hereditary Haemochromatosis & MDS RARS did afford some protection so I am hoping that is the case. I belong to the UK MDS Support Group & as yet have not had contact with anyone else with HH & MDS RARS. I would be really interested to hear about your experience, treatment etc Charlie. Thank you so much for reading this if you managed to get to the end! Best wishes Heather

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