I have a form of Myelodysplastic syndrome (MDS), refractory anaemia due to ringed sideroblasts (RARS). Regular red cell transfusions keep my Hb levels around 60-90g (140-160 is the healthy range). The main annoyance to me is the relentless feeling of lethargy and tiredness. There seems to be nothing the NHS can or will do to help me overcome that. However, I managed to blag some modafinal from an online pharmacy and found it works pretty well. The downside it is only prescribed for narcolepsy in the UK, and also for shift workers in the US. My night-time sleep actually improves.
I should emphasis that I’m not suggesting that others should follow my example without guidance from their consultant, but to point out there are other medicines that could address these symptoms.
Hi @Orm, thank you for your post and I’m so sorry to hear of the tiredness you’ve been dealing with. We appreciate this can be a common and difficult symptom to manage. If you’d like a bit of support or would find it helpful to talk things over, please don’t hesitate to reach out to our Support Team on 0808 2080 888.
May I ask whether you’ve let your healthcare team know you’ve started the modafinil? We’d strongly encourage you to do so, if you haven’t already, as it’s so important for them to be aware of all medications you are taking.
As you’ve mentioned, we do advise people have a discussion with their teams before trying something new, be that a medication or supplement, to make sure it’s safe and won’t interfere with, for example, any treatment you’re having.
In case it’s useful at all, I thought I’d share our webpages on the topic of fatigue- Blood cancer and fatigue | Blood Cancer UK. I do appreciate that you may well have tried some of these suggestions already, but I hope that some might be helpful to you.
I would be interested in knowing exactly what you mean by ‘blag’ in your blog.
I would also like to echo @TanyaBloodCancerUK post, personally (I am not medically trained) I think my NHS team need to know my whole medical history and they need to know exactly what medications I am on so they can treat me with in the best way.
Sometimes I have to remind them as I am under more than one department at my hospital.
Look after yourself
I did mention it to one of the consultants, half expecting to be admonished, but she said it said it only affects the serotonin receptors so should not be a problem. I take the smallest working dose only when it’s important to me, usually once or twice a week. I say blag because I pretended to have mild narcolepsy, which is not quite true. However, the uk online pharmacies are no longer allowed to dispense modafinal, so they have become a precious resource that I use sparingly.
Thanks for your honest response @Orm
Look after yourself