Saturday, May 28, 2011

Oops!

evil doctor
picture by ictioscopio

Some of you know that I have CFS and have done for a few years now. I've not found much that helps: meditation and pacing plus "nutritional support" stopped the downward slide, but what helped most was vitamin B12 injections. They were recommended by an NHS consultant and given to me by my GP.

Today I received a letter telling me that my B12 injections would stop forthwith, and my son and his wife have five more weeks then theirs will stop. Apparently, using B12 for CFS is against the NICE guidelines and my GP surgery won't do it. Nothing to do with budget cuts, obviously.

I've been feeling better these last few weeks since I did the Lightning Process and was wondering about reducing the injections then tailing them off but I can't believe that stopping them this suddenly is anything but countertherapeutic. I worry for my son, who is very poorly indeed with CFS and is mostly housebound. Oh dear.

So, now I'm off to find out who can help: PALS, an ombudsman, CAB, the prime minister. Or maybe I can go private. I really didn't need this.

27 COMMENTS:

Jayne said...

Oh no. I really hope you find someone who can help you.

Quirky Jessi said...

Ugh, that really sucks. If it's helping, they really shouldn't cut it out like that, sigh. Hopefully you figure out something to do. :(

fairyhedgehog said...

Jayne, thank you!

Jessi, I agree that it sucks!

I'm drafting an email now to our local Patient Advisory and Liaison Service to see if they can help.

jjdebenedictis said...

Oh, no--that's really dreadful. Here's hoping you can find a solution. Feel free to vent or to ask for help if there's anything we can do.

Simon Kewin said...

That's not good at all. Is it time to contact your MP? Hope it gets sorted out soon.

Old Kitty said...

Oh fairyhedgehog! How callous. I'm so sorry. Is there a CFS help group or something similar who may help? I just googled cfs helpgroups:

http://www.chronicfatiguesyndrome.me.uk/support-groups.html

I'm trying to find the NICE guidelines that state this too - the NICE website should have their guidelines published in full. I don't know how it would help though.

http://www.nice.org.uk/#

I'm hoping maybe the guidelines maybe read differently!

Good luck fairyhedgehog!! Don't give up whatever you do!! Take care
x

Sarah Laurenson said...

Good healthcare can be very diffcult to get sometimes. And it really makes me wonder when each new study makes the study before it irrelevant.

They just now came out and said raising your good cholesterol doesn't help stop heart disease and it may actually cause strokes. So all those who have been following medical advice to raise their good cholesterol may need to rethink what they're doing.

But is the new study right and the old one wrong?

People are not made with cookie cutters. We react diferently to different medications and we should be treated by what works for us as individuals.

Sources of B12

I don't know if you have Emergen-C available there. I drink it once a day and it helps keep my B12 levels nice and high. Being vegan, I don't get much, if any, B12 from my diet. It's not going to be as good as the shot, of course.

Phoenix Sullivan said...

I know some people have absorption issues with B12; however, the sublingual version should do well if you're one of those folk. Sublingual B12 shouldn't cost much, but the trick is whether you can get it in the UK without a prescription - or if you have friends who can port it in for you if it is prescription-only there.

The nice thing about the sublingual version is that you can dose up or taper off as your body demands. And you don't need a huge bolus at once. You can manage your levels much more consistently.

fairyhedgehog said...

jj, thank you! I hope I won't need to take you up on that but if I do...

Simon, I'm keeping that as an option.

Kitty, thanks for the links! Sadly, NICE don't support the use of B12 for CFS because there's no research been completed on its use. My having it would count as part of the research if they'd let me have it!

Sarah, thanks for your help and support and the links. Somehow the amount of B12 in injections is much higher than you could get from ingesting it.

Phoenix, I can get hold of sublingual B12 but I haven't found it very effective. I'm going to look at whether I can get the injections privately, if not for me then at least for my son.

The issue isn't one of B12 deficiency, it's that B12 in massive doses does relieve the symptoms of CFS.

Thank everyone for your support!

Whirlochre said...

Any cuts or curtailments of this kind are always hard to deal with because you go instantly from one way of being to another with little transition.

However, since this is a development unlikely to affect solely you and yours, there must be large numbers of people across the UK now faced with a similar dilemma. Wherever you now try to present your case, you won't be alone, and I suspect some of these people will have useful info if you linkydinkydink.

Meanwhile — look after yourself.

fairyhedgehog said...

Thanks, Whirl. I hadn't looked at it like that and it does help.

Richard N said...

The research suggests that injectable b12 isn't the best way of giving it... the oral route gives better results with less complications:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1742688/pdf/v079p00218.pdf

fairyhedgehog said...

Richard, that's interesting! I wonder if it works for CFS where you're getting amounts far in excess of "normal" rates.

Phoenix Sullivan said...

Even if it helps simply because you think it helps, it shouldn't be denied. Grrr.

So another option is giving the injections yourself if you can get the injectable form there (or nearby).

Three options for that option: one is, of course, the Internet to see if there are any sources for non-prescription procurement.

The second, depending on how you feel about such things, is to go to a feed store in a rural area that sells only livestock products (preferably not a chain store because the selection at the indies, especially for quasi-regulated drugs, is usually a lot better). It's amazing the variety of drugs they have available -- ESPECIALLY injectables -- as well as the syringes and needle sizes to deliver them. And generally the costs are ridiculously reasonable. For instance, even at a chain store here in the States, I can pick up a 100 cc bottle of injectable penicillin for the price of a paperback. I used to do drug ordering a generation ago for the vet clinic where I worked, and I can tell you B12 by the bottle is pretty cheap if you buy it through a vet supply company; only a little more expensive from a human supply co.

The third option is if you can get a prescription from your doctor. Even if s/he can't be reimbursed for ADMINISTERING the shots, then s/he could no doubt write a prescription and you could EASILY order B12 injectable online through a human med supply company. Waaaay cheaper than going to a private doctor for them, especially if you buy in bulk.

The question, of course, is can you buck up and give you and your son the shots yourself? Or give the shots to your son and have your hubby give them to you? (I bet the answer is YES!)

fairyhedgehog said...

Phoenix, that all sounds amazing but I' not sure it works the same way over here! We're regulated up to the eyeballs and the Dr is no way going to give me a prescription. My fall back position is to go private, or to get a prescription from a Dr in Wales (Dr Myhill, if she's still doing that) and getting a local private hospital to do the injections. I'm sure there's a way round this I just haven't found it yet.

There is research going on to find out how effective B12 is but until it's completed we only have anecdotal evidence. But it works for me and that's good enough for me!

Sarah Laurenson said...

I stab my wife once a week and I used to be needle-phobic. Lucky for her (and me), I've had practice on my old cats who needed fluids regularly. I've gotten better at doing it, too. (She's very grateful for that.)

fairyhedgehog said...

Sarah, I don't think I'd better practise on the cats when they don't need it! Seriously, self-injection is an option, but B12 is a rather painful injection (the nurses at our surgery don't like doing it for that reason) so it would take some doing.

Phoenix Sullivan said...

OK, so I had a look and I see that you can get vet grade B12 shipped from a UK vet pharmacy to sites in the UK. It looks like it might be half-strength what I found, but that just means doubling the dose. Could be a more extensive search will turn up a different brand that has 1000mcg/ml.

Here's the catch: You don't need a prescription, but you do need to enter info about the animal you're treating. Are you willing to call your son a young horse? :o) I'd go with horse about 6 years old if you are. Many horse owners live in town and board their horses elsewhere, so a suburban address won't raise eyebrows.

http://www.valleyanimalsupplies.co.uk/norbrook-intravit-b12-injection-100ml-1918-p.asp

http://www.hyperdrug.co.uk/Intravit-B12-Injection-100ml/productinfo/INTRA100/

Here's the mfr's site:

http://www.norbrook.co.uk/Products/ProductData.cfm/product_Key/383/CatKey/1/Section/Veterinary_Products/

fairyhedgehog said...

That's very ingenious of you Phoenix! Thanks for all the links. I'll have to look into that!

Kevin Musgrove said...

Oh hell...

Best of luck chasing the medics.

fairyhedgehog said...

Thanks, Kevin. "Oh hell" just about sums it up!

Mother (Re)produces. said...

I'm so sorry you have to deal with this, Prickles. That seems a bit radical!

fairyhedgehog said...

Thanks, M(R)p. Radical is a good word for it!

Sylvia said...

Oh no! I hope you do find a solution for both of you. :(

fairyhedgehog said...

Thanks, Sylvia!

stacy said...

Ugh. I'm so sorry, Fairy. Let me know if there's anything I can do to help . . .

fairyhedgehog said...

Thanks, stacy, you're a dear!

A friend who is a qualified doctor suggested approaching my Member of Parliament and suggesting a compromise position where I pay for the B12 but the local surgery inject it. It's worth a try.

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