Joint pain with pa

[nateoliver]

I have been diagnosed with pa several months ago and have been receiving b12 injections monthly. I have been having shoulder, fingers and toe joint pain I know it sounds strange. The pain in my hands are the worst I can't open bottles or squeeze shampoo, sauce bottle etc. I'm finding it frustrating this pain comes on suddenly for no reason. I find after my b12 shots it's not to bad. Is anyone else having this same problem I'm just worried it will get worse or there is something else wrong! Any help would be great!

[MariLiz]

Hi nateoliver,

I also have severe joint pain, mine is always worse when I first wake up. Sometimes it can be my hands or feet that hurt most.

Today I've hobbled around most of the day with a really painful foot. I've been sent to a rheumatologist, and told I have fibromyalgia as well as all the other ailments! Still not sure myself, as so many symptoms are the same as low B12.

MariLiz

[Hidden]

It is not uncommon to have more than one autoimmune condition, so having PA can mean you also may now have RA, but it does not mean that you have to have more than one. I also find B12 jabs help with joint pain (inflamed hip joints in my case).

[nateoliver in reply to Hidden]

Thanks guys pa is such a frustrating disease. I feel like a hypochondriac. So many bizarre things happening I don't even know my own body I'm so glad that there is this group that can help with questions. I'm having monthly injections for 3 months then on 3 monthly do u think this is enough my b12 wasn't very low to start with but still had so many of the symptoms. Sorry for the rave!!!!!

[Hidden in reply to nateoliver]

You are not getting conventional treatment, but its up to your GP to decide what treatment you need, you can only question him her why he she is not following BNF guidelines, and ask if your symptoms are neurological and if you why you are not getting the recommended treatment. Taking into account that serum B12 test is not terribly accurate indicator of a possible B12 def and other tests such as active B12 and MMA were not done.

See:

patient.co.uk/doctor/pernic...

Management[2]

•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.

•Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Care Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[4] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.

•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]

I hope this helps,

Kind regards,

Marre.

[Gambit62 Administrator]

A lot of people experience returning symptoms well before maintenance shots are 'due'. It isn't a one size fits all condition and its a bit tragic that the guidelines on treatment don't acknowledge this - beyond recommending referral in cases where symptoms return (though general reaction is to assume it's all in your mind).

I don't get the sort of joint pain that you mention but over the last 6 months I would have to say that, from supplementing for myself and playing around with levels, I seem to need about 3mg a day (as opposed to 1mg every 2-3 months) to keep all the symptoms properly in control and in the background. Use a nasal spray for most of that.