Moderator: Steering Committee
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- Joined: 13 Apr 2011 17:01
My name's Nick and I'm a 48 y/o male living in East Sussex. I was diagnosed with MDS/RA/RCMD in July 2008 after getting a blood test at my wife's insistence as I was bruising like a peach, getting nose bleeds and felt knackered all the time. Being a typical bloke I put off three appointments as I was 'too busy'.
I'm being treated at Kings College hospital and Conquest hospital and was put on drug therapy (Eprex and GCSF) 9 months ago after fatigue and continuous infections started to impact on my quality of life. I will (probably) be having a BMT once the jabs stop working - I'm fortunate to have a sibling BM donor (sister) who has quoted me very reasonable rates for a couple of pints of stem cells!
It's been really useful to read the accounts of those of you who have already been through BMT and it's done a lot to demystify things for me in terms of timescales and what to expect.
Is there anybody else currently using (or who has used) Erythropoetin and GCSF? I'd like to hear if you had side effects with the GCSF and how long the therapy was effective for.
Regards all, Nick.
I have Posted on a similar topic but in ended up CMML folder (my ineptitude).
I am in MDS RCMD Group Diagnosed Intermediate 1. After suffering a Neutropenic Sepsis I was given Filigrastim and Aranesp (GCSF and EPO) I am now stabilised and have been on these drugs for a year with no side effects. I do feel aches in limbs at times but do not know if this is down to side effects.
I note you feel that the effects will start not to work and that you will need a BMT. My present Consultants act as if it will work for ever and have not planned ahead for this contingency.
Have you been told that BMT is the way forward or have you presumed that this is inevitable. In my case I am 69 years old and have no siblings.
i will keep self administering the injections and come to the next hurdle when I have to meet it.
- Posts: 1
- Joined: 17 Mar 2013 19:51
- Location: S E Essex
Under heamatology Basildon Hosp since 2010 for anemia . BM done May 2011 possible MDS but no confirmation , prescribed all the supplements but no improvement to hb 10.2 (lowest ). .Now on EPO and awaiting referral to kings .
- Posts: 630
- Joined: 01 Dec 2009 21:52
- Location: Essex
I don't think there is a "normal" dose as the clinician will decide for any individual how much is needed to get the red blood cell counts to a level where symptoms improve. It could be dangerous to raise the levels too high too quickly so I think they try to find a minimal level to give optimal results. As always, do try to discuss it with your doctors and raise any concerns you have. Also ring Sophie if you have any queries.
If you type EPO into the search box you will find more posts on this subject from MDS patients on this Forum.
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