An Injection a Day and the Doctors say Yay!
Not all of the telephone calls to the office are negative, and one such positive call was taken by me yesterday.
“My husband needs and injection every day to live a more or less normal life.
If he goes any longer than that his personality changes and he does nothing but sleep – he’s even been known to fall asleep in a restaurant”.
Now, you may think that this treatment, prescribed by the lady’s husband’s GP would gladden my heart. But I have heard so many stories where the patient is being prescribed more frequent injections than what is stated in the British National Formulary (BNF) only to have that treatment regimen stopped by another doctor or doctors, often at the same surgery. I pointed this out to the caller – that there was no guarantee that this treatment would carry on for ever, and that other GPs or Haematologists would often intervene and challenge the prescribing doctors practice.
“Oh we saw a Haematologist last week”.
‘Uh Oh!’ I thought.
“She was fully supportive of the GP”.
I couldn’t believe it.
“I’ll send you a copy of the letter from the Haematologist if you like”.
I replied that I would very much like. And here it is, in front of me on my computer screen. And it is fully supportive even telling the GP that there may be something more going on such as problems with B12 Metabolism and that she, the Haematologist, would be doing a literature search.
So, you see, it does happen, and this is a wonderful piece of evidence to present to the BNF when we come to give evidence that some doctors are prescribing more frequent injections than what is stated in the booklet. Oh! and there’s one other thing. The Haematologist asked the patient and his wife to ask me to contact her. And that I’ll be doing tomorrow.
Thanks for posting this Martyn. It gives me hope for the future. Does the Pernicious Anaemia Society have a ‘good doctors’ list?
We don’t have a ‘good doctors’ list. In fact, last week I got a really nasty email from a Haematologist who demanded that we remove him from our ‘list’. I had to tell him that that list was the product of a Facebook group. He apologised and I then sent him the Update for Medical Professionals which he assured me he would send to the GP co-ordinator for his region to disseminate among GPs. See – I never miss an opportunity!
It’s fantastic news for them!
I’m always chuffed to read these good news stories!
We simply dont have enough “good” gp’s!!
Thamk you for sharing Martyn
I’ll carry on always doing my own b12 injections. I’d be half dead otherwise. Now that says it all to me.
Your efforts are very much appreciated Martyn! Bit by bit you are breaking down the barriers of this illness. From Australia we thank you!
I did well on monthly/3 weekly injections for over 30 years.
Then I could not get cyano cobalamin in Australia, only hydroxocobalamin which does zero for our family. After eight months I was unable to walk, but three years later, after daily injections, my balance has improved, my central nervous symptoms have gone and I have gone from zero feeling in my limbs to around 60%. Still need a walker, still have chronic pain, but my Drs are supportive of daily njections.
Amazing news, I get my infections every 3 months and I am struggling every day to stay awake myself. I am currently awaiting more blood results. I am hoping they will do something for me as I can’t live like this with a toddler. Falling asleep all the time and being exhausted ! My doctor told me to wait 3 weeks for bloods as it might well be due to me just having a period of tiredness. I said that wasn’t the case because I only felt a little surge of energy when I was getting my injections every other day at the start ! Fingers crossed they do something for me. So glad your getting the help you need.
Dear Martyn ,
Thanks for passing on that piece of good news. You have achieved so much for us all . I know 100 % that P.A. patients will all get the treatment they need in the end , due in so much to your efforts. It might not happen in my life-time (I’m 79) But thank you so much . Also your wife, as it would be more difficult for you without her support.
I’m afraid not Gillian – not unless they request anything.