Newbie...

[Hobbs1980]

Hi guys I’m very new to this I was only diagnosed yesterday with PA so iv not quiet had chance to diagnose it all, iv just been told I need to go to the doctors three times a week for injections, I start my first one on Monday. Iv read that some people are self injecting can I ask please at what stage your able to start doing it your self and is this something you have to do daily? Thank you!

[fbirder]

First of all - what are your symptoms?

If you have neurological symptoms (especially pins and needles in your hands/feet) then you should be having three injections a week until your symptoms are no longer improving. Then every two months.

If you do not then you're supposed to have three a week for two weeks, then one every two to three months.

Some people do OK on that frequency of injections. Some people do not. They have their symptoms return before the next injection is due. If that happens you can try asking for more frequent injections. Some sensible doctors will be OK with that. Others are not.

If you're unlucky enough to reach that point then you need to put up with the symptoms or take your health into your own hands and inject yourself. How often varies. Some are fine with once a month, others need it every day. The only way to tell is to try it.

[Hobbs1980 in reply to fbirder]

Hi thanks so much for the reply, my symptoms are pins and needles in my hands and feet, shortness of breath, chronic fatigue and my body aches all over. Iv been booked in for three times a week starting Monday but I was unsure how long this had to continue for and if there was ongoing treatment after this but you’ve answered most of questions now thank you !

[fbirder in reply to Hobbs1980]

Your doctor may not be aware that there are different regimens for those with neurological symptoms. The guidelines for prescribing are in the British National Formulary. Your doc will have an online version of the BNF. Here is the entry for hydroxocobalamin.

bnf.nice.org.uk/drug/hydrox...

[Bellabab]

Just to add that it sometimes takes many months of injecting every other day for all symptoms to stop improving. Also many symptoms did not become clear to me until they had ended. For example my fingers and toes are lovely and straight now yet they were hammer shaped before.

[Hobbs1980 in reply to Bellabab]

Thank you for your reply.. can I ask before you started your injections did you struggle with shortness of breath? It’s one of the symptoms that’s really worrying me as I keep struggling to breath I’m hoping this will improve!

[Bellabab in reply to Hobbs1980]

Yes and it has improved a lot.

[Hobbs1980 in reply to Bellabab]

Great that’s reassuring thank you

[JohnnyConger]

I finished my 6 loading shots 3 weeks ago, my recovery was rapid I felt better after the 1st shot, I got even better over the 2 weeks I had them, when I say better I mean I felt normal again I had forgotten how that felt, I followed fbirders advise on buying B12 from Germany & his advice on what needles to buy, I plan on giving myself an injection every 2 weeks, last Saturday was my 1st attempt it freaked me out a bit but I will get used to it, I know I cannot rely on the Docs and would rather be in control myself, everything is better now although I still am waiting to have an op for a hernia which is messing my guts up. Glad I found this place. Good Luck Mate.

[Hobbs1980 in reply to JohnnyConger]

Hi Johnny can I ask where you found the information to buy the b12 from Germany ? I’m thinking this is something I may need tk eventually do

[JohnnyConger in reply to Hobbs1980]

There you go mate & the vid I watched, thats how I did it.

healthunlocked.com/pasoc/po....

youtube.com/watch?v=ie-LETl...(Not working as expected?)

[Hobbs1980 in reply to JohnnyConger]

Thanks so much !!!