Treatment Confusion Need Help

[Purplegirl2]

Hi everyone,

I am 20F, been receiving b12 injections for the past year. I get them weekly at my neurology clinic. I moved to university and I live there for this school year. I am requesting my Drs allow me to receive b12 injections at school. Both my GP and my neurologist agree that I should continue with the injections, however, they disagree on how often I should get them.

My GP: said to just get 1 shot every 3 months or so. I don’t agree with this option, because even on once monthly I saw little improvement.

My neurologist: had me do once weekly after I convinced him to do so. Had me do that for a limited time (2 months). Now I don’t know what he will have me do but he was not interested in keeping up with the once weekly shots.

I still don’t know if I truly have PA or not. I did the tests. I don’t have any way to know for certain but my GP seemed to think that I most likely have it.

My neurologist wants me to transition to oral b12 even though I told him that oral b12 didn’t help me.

Should I argue for once weekly b12 injections indefinitely? Is once a month really appropriate? I feel so lost. What do I do if my Drs insist on monthly or every few months? I cannot self inject at school. Lastly, how can I determine how often I actually need b12 injected?

[Nackapan]

You have enough to keep you as well as possible.You coujd try a longer gap. 10 dats 2 weeks? but note when tiyr symltons return.

Do you stay well on weekly injections ?

If so try and stay on that regime

It is possible to self inject wherever you are .

It was a neurologist that sanctioned my 2 weekly b12 injections to be self injected.

The Gp had opposition from peers but had no other answers.

I trued a few times to go 3 weeks and it just set me back

I self inject weekly subcutaneously

.

Have an IM one at the surgery

I got the neurologist to write to the Gp.

write in perhaps?

State how your symptoms return and when.

State you have tried oral b12 and it did nothing for you

Ask if anything else causing your symptoms??

If you use the search you will see many replies and links.

I hope you get it sorted.

[Purplegirl2 in reply to Nackapan]

Thank you. I would self-inject but I live in a dormitory and I don’t think that would be allowed. I’d probably need to go to the health center to get any injections.

I am doing well on the weekly injections. I might try a longer gap. I still don’t know if my number is in the ideal range yet (my neurologist wanted at least 600 and above for ideal brain function, and my levels were 200 about 3 months ago). It took me much longer to raise my levels on once monthly injections than I expect it will for weekly. (In 6 months of monthly it only raised by about 150) I don’t know for sure if I’m at the point of doing maintenance doses or if loading doses are still necessary.

[Nackapan in reply to Purplegirl2]

Best not to go by numbers once levels are up. Mine was tested with folate as I wanted folate done .

B12 level was ignored at over 1.500

[27Protons in reply to Purplegirl2]

"I would self-inject but I live in a dormitory and I don’t think that would be allowed."

Nonsense, it would be none of their business if self-inject (as long as you use some common sense e.g you store & dispose of the syringes properly) especially if it was prescribed by a doctor and it probably come under disability discrimination legislation if they did. Are there any type 1 diabetes in this dormitory as I suspect many people here like diabetics give themself subcutaneous injection?

[Cherylclaire Forum Support]

A lot of GPs and nurses will push for an injection every three months because that is what they were told in training. But even the NICE guidelines were changed in 2014 to every 2-3 months - which looks to me like a recognition that we are all (slightly) different or an admission that the last reduction went a bit too far. The truth is that these are guidelines and a GP can use his/her evaluating skills to find a regime that will be of more use than just preventing you from getting worse (practice protocol permitting). My cousin for instance has an injection every 6 weeks, and this has worked for her -and her GP- for years.

Ideally, the injection should pre-empt a return of symptoms, but that means first getting to a stage where your symptoms have been eliminated. This is the point of the loading dose (generally 6 injections in a short space of time) and then onto the maintenance dose, which supposedly maintains the level of health you have now attained. So perhaps if you have not yet reached a stage that is worth maintaining, it could be argued that you need more loading injections. And you would truly have to argue for that - unless you have neurological symptoms as nerves would obviously take longer than that to repair.

The standard treatment for those with non-dietary B12 deficiency who have neurological symptoms is to continue injections at an every other day frequency until no more improvement can be had - usually with an appointment to discuss progress at around three weeks.

[ note: not to be confused with "until the nurses start complaining", or "to be stopped at 3 weeks because a) it is working or b) it is not working" ]

Since the neurologist is involved in treatment, I am assuming you do have neurological symptoms.

Whether you have PA or not is quite difficult to determine as the usual test used cannot rule out a PA diagnosis if a negative result ensues. The intrinsic factor antibody test (IFab) can produce a negative result for 40-60% of those with PA - and not all GPs are aware of this- so one negative result although proving nothing where PA is concerned, has been used to deny people injections. It is a gamble and potentially another fight which can be very draining (wasting valuable energy resources). The medical guidelines even refer to a PA (IFab neg) diagnosis.

Perhaps the best way for you to demonstrate what frequency you need to remain as well as you can get is to keep a daily chart of symptoms - list symptoms, list dates, mark in when symptoms occur, mark in when an injection was administered. Hopefully a pattern will emerge which will answer your question regarding frequency: look for when symptoms begin to reappear -then try to get the neurologist or GP to see the sense of trialling a frequency that would prevent this deterioration from happening (no need to keep getting regularly worse each time). Then all they have to do is see that it works and continues to do so: monitoring your condition.

They might also want to check your folate, ferritin and vitamin d levels for signs of deficiency. These are the most likely additional obstacles to regaining a life !

If your neurologist has been giving you weekly injections for the past year, that is definitely the person I would discuss this plan with ! Well done for that.

[Purplegirl2 in reply to Cherylclaire]

Thank you for your thorough response! I truly appreciate it.

[VellBlue]

Hi Purplegirl,

How did you get on? Did your neurologist and doctor okay the frequent injections? I am in something of a similar situation, so would.be good to know. 😊🌼

[Purplegirl2 in reply to VellBlue]

Unfortunately, no. Since I live out of state I can’t make an appt with my neurologist (and they don’t take me seriously anyway) so my mom is planning to meet with my Dr and insist on the weekly, but hasn’t been able to happen yet. My depression symptoms started getting worse just as my b12 shots were less frequent and I think the 2 are related. I still don’t know if what I have is PA or a side effect of an important med I’m on (even with months of weekly doses I’m barely where I want to be, and once I stop weekly my levels drop). I’m so sorry you are dealing with this too. But don’t give up, it is always worth making a stink if it means you might get the help you need.

[VellBlue in reply to Purplegirl2]

Thanks for getting back, and take care. I hope your mum is able to sort it out, you should be enjoying your studies and student life without having to struggle with a depleted body. X

I've found some sublingual Hydroxocobalamin B12 tablets online, which I am going to try. The ones I found are made by Swanson, but no doubt there are other brands as well. Some people say they find sublinguals helpful, so worth a try!

[Purplegirl2 in reply to VellBlue]

Good luck with sublinguals!