How long does it take to feel 100%

[CW12]

A simple yet complicated question. How long should it take to feel normal again? I started treatment in August once a month ... one September, one October. I then move to 2x a month in October-December. 7 injections total. Never had loading shots. Meeting my dr Tuesday to beg for b12. Ive had an MRI, lots of blood work . It makes me nervous to not be feeling better. Weakness, restless leg. Twitching . Symptoms improve a bit then come back and it’s frustrating. I know from the intelligent people in this forum that I’m most likely not getting enough b12. Trying to gage what is normal . Going to the dr Tuesday to beg for more b12. I’m armed with a notebook of info for them.

[Litatamon]

It varies. Many things changed for me immediately. And I do mean immediately. But some things linger. And some issues have improved two months in.

Someone much more aware than me will come on with advice the possibility of going back to loading. Any pitfalls, danger and/or simple awareness of the statistics.

But just wanted to share that my doctor did not believe in aggressive loading. She let me do it but added "It won't make a difference". She also did not base going forward on symptoms. I have believed in both looking back (I self-inject now and literally went back to loading per se as I had neurological symptoms and learned about the UK protocol here - so thankful). I don't have absolute proof of course. But I have at least twenty symptoms that have vanished (a few that haven't yet).

I was not going to put my health in someone else's hands that didn't share my well-researched belief/trusting my own body. I remember saying to myself it is not her life or her health if she is wrong, it is mine. And I had read enough to know that time was of the essence. And that some of us miss a window. It is heartbreaking.

I also wanted to share that in the book Could It Be B12? there was a story of a man named David. He was someone where they took him off b12 shots because he was in the normal range. And he went through this and that - psychiatric hospital/misdiagnosis etc.

When he finally got things in order he went back to loading (this is years in between). And a pretty aggressive one at that. It was either every day or every other day for many months (3? ). He regained pretty well everything.

I have no clue what is best going forward for you. But there are some stories of people being successful going back to loading doses, if they feel it was missed.

All the best to you.

[CW12 in reply to Litatamon]

This is very helpful. I am going to bring a lot of these points up when I go to the doctor Tuesday.

[Nackapan in reply to CW12]

I HD 6 loading g doses. Very ill before and during. I was supposed to wait 3 Months ti the next injection. I read and learnt from here. I went back on every other day after a 6 week break . During that break I was taking b13 sublinguals and tablets to no avail. It was only when I was into my 3rd or 4th week back on every other day progress was Made.

Do check out vit D folate iron ferritin ans anything else. I've still a long way to go but in a much better place thsn this time last year.

It is early days and it does take time. A roller coaster . Depends on how low your b12 was at the start. How long you were defficient.

Go by your symptoms . If you are suffering alot of neurological symptoms , start again on loading as per bnf guidelines.

You know your own body.

Do try and Pace too if you are able to get out and about.

Take care

[YogiGreg]

Hi CW12

Difficult question to answer as everyone will have a different story and timeline for recovery.

Personally I'm 9 months in from initial loading doses and still recovering though much better. The outstanding symptoms to be resolved currently are tinnitus and anxiety, but even then they come and go depending on when when I'm under stress and no longer permanently there or easier to manage then a few months back. It really is a very individual journey and a question that won't have standard answer. The first 4 months were unpleasant as most (and some new) symptoms got worse before getting better, then after about the 5th month started to experience small periods of feeling good before taking a few steps back, and then getting better again, and so on.

Wishing you all the best

Greg

[CW12 in reply to YogiGreg]

Thank you for sharing... very helpful

[Spain65]

You should have had a TBC (total blood count) to see what your B12 level is in the first place, and if it is very low they do loading doses. To me this does not sound like normal GP practice in UK....they normally follow strict guidelines with regards to PA.

[CW12 in reply to Spain65]

My level was 230 initially. I live in the States. You are absolutely right . I wish they followed UK guidelines. I am working on it. Constantly bringing them literature.

[Spain65]

Apologies I thought you re in the UK. A level of 230 is not very low, mine was only 72 when tested . I hope you get the help you need.

[CW12]

Most members are from the UK so I can see why you would assume.. no worries. My level was 230 with neurological symptoms. This is why I feel I needed loading doses. I see a hematologist tomorrow and with revisit that option... hopefully.

[Leils]

I felt normal again after loading. But it only lasted 4 weeks and I got rapidly worse again.

I now am on alternate days at home. Doubt you'd get a doctor to agree to that.

I've had improvement in lots of things but not fixed yet and it has been 3 months ish.

[Cherylclaire Forum Support in reply to Leils]

Keep going, Leils -

I didn't feel anything after loading, then 1 every 3 months made me deteriorate rapidly, so was put back onto loading: 2 a week for 6 months, which started to improve symptoms but then after 6 months went a bit downhill . It was reduced to 1 a month while waiting to see a haematologist - who then decided that I should not be on more than 1 injection every 2 months "as per guidelines" .

Already knew the result of that as a frequency so at this point, I decided to self-inject - every other day until no more improvement can be had : My interpretation of the guidelines. Still kept the 1 every 2 months NHS one until recently, when another GP had that stopped- price of honesty sometimes !

It works, very very slowly, and there are "blips" but I am now never so exhausted that I need a midday nap, which was a necessary part of my daily routine at one point. Can't say I've ever got back to 100% - but giving up is not an option. After 15 months off sick, I returned to my job part-time (I no longer say "on a phased return").

CW12 - none of the above is usual but demonstrates just how different our experiences can be.

My GP giving me 6 months of 2-a-week injections is particularly rare:

She diagnosed me with B12 deficiency then with functional B12 deficiency, which is when you have a lot of B12 in your blood, but it is not working at cell level. This was confirmed by the laboratory because of my raised MMA level (once any renal problems were ruled out). The only research paper that I have been able to find on this, by Talbot and Turner in 2009 I think, recommended "frequent injections". Vague advice, but I'm clinging on to it !

[Leils in reply to Cherylclaire]

Thank you. You give such good replies. I know it isn't a quick fix.

I'm wondering if I can go back to work next year perhaps 2 days a week.

[Cherylclaire Forum Support in reply to Leils]

After 15 completely unemployable months, I managed to go back to work 1 day a week. then 2 days a year later. I think more than 2 days would now be difficult for me, but this might be because the 2 days are consecutive. Difficult, not exhausting though.

I kept my employers informed and updated about treatment decisions, tests, GP's and consultants' appointments, and how I was doing. I took in my doctor's certificates and gave them copies of my appointment letters. Employers also know that I self-inject. It wasn't easy, going back, but I think being honest all the way along made it easier. Depends on who you work for. I was lucky.

Keep in touch with your employers and see how it goes. Concentrate on getting yourself well.

[clivealive Forum Support]

Hi CW12

Please also check to have your Folate (B9) level checked.

Do you have any idea why you became low in B12?

Are you being injected with cyamocobamalin or hydroxocobamalin?

I am not a medically trained person.

I wish you well

[CW12 in reply to clivealive]

My folate was high... from supplementing. Not sure why I am low. I have Hashimotos. I’m getting cyamocobamalin.

[clivealive Forum Support in reply to CW12]

Having Hashimoto's puts you at risk of developing a Vitamin B12 deficiency and may be the cause.

Injections of cyanocobamalin (in the UK) were usually prescribed for every four weeks.

For my P.A. (which is just another cause of B12 deficiency) I have been having them every month for over 47 years and am on them for life.

[CW12 in reply to clivealive]

I was thinking Hashimotos was the cause. Do you know why it causes low b12? My IFAB was negative

[MoKayD]

For the first year of B12 treatment my health was up and down. Now I'm coming up to my second year anniversary of treatment and I can honestly say I feel great. I know my body and I know when to get my shots to keep my health on an even keel. It took about a year to get to this point. I felt better after my first shot but it took a year to feel good consistently. BTW, I still have a tiny bit of numbness in my toes but the nerves in my toes seem to still be reactivating, albeit very slowly.

[Litatamon in reply to MoKayD]

"Now I'm coming up to my second year anniversary of treatment and I can honestly say I feel great."

How wonderful to hear. And thank you for sharing this with us all.

[CW12 in reply to Litatamon]

Glad you are feeling better!!! It takes much longer to heal than I knew.

[CW12 in reply to MoKayD]

Thank you for sharing. So glad you are feeling well!!!

[Frankieluca]

I was diagnosed with PA after a few years of feeling unwell. Had loading doses over a period of a couple of weeks then onto 12 weekly shots. I can honestly say I think it took me about 4 years to start to feel back to myself, Saying that I still have the odd occasion where I feel that symptoms are returning, but usually after my shot I feel better. Sorry to sound negative but this is a complex condition that I don’t think doctors fully understand. Just keep asking questions and tell them how you’re feeling.