Swelling: Has anyone else experienced... - Pernicious Anaemi...

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Swelling

Hipgnosis
Hipgnosis

Has anyone else experienced pain and swelling of the knees from injections? I was diagnosed in October but did not receive loading doses until I demanded them last month (June). Both my GP and neurologist are ignorant regarding B12/PA. It has been exhausting. I have not been able to ascertain whether this swelling is part of PA or an effect of the injections - or something else altogether. Any input, advice, info greatly appreciated. Thank you.

9 Replies
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Foggyme
FoggymeAdministrator

Hi Hipgnosis. This is not an easy to question to answer...whilst B12 injections can have some side effects, they are quite rare and are experienced by each individual differently (i.e. there's no common 'theme' - although eruption of acne (usually on the face) is on of the more common ones. Mild nausea or diarrhoea is another. Some (most) people get no side effects at all.

Another problem is that all the side effects listed on the patient information list for whatever B12 is used are also the symptoms of B12 deficiency. Once treatment with B12 injections commences, it's not unusual for symptoms to get worse, before they start to get better. So...great debate...are worsening symptoms due to the 'repair' effect that comes with treatment...or are they side effects to B12 injections?

It's not typical to get swelling in one location only - if it was a side effect of the injections, it would be more usual to have swelling and pain in other joints to. Likewise, I haven't heard of Pernicious Anaemia causing this type of problem with the knees (but can't rule out that it doesn’t exist).

One known side effect of B12 injections is that they can precipitate gout, so if a gout diagnosis is present, suspected, or perhaps undiagnosed, B12 has to be used with care (enough to control the symptoms of deficiency, but no more). (Gout is common in the toes but can occur in any joint or joints).

Another thing to consider: PA is an autoimmune condition and autoimmune conditions often occur in clusters, so it's possible (but not certain) that there is something else going...in the autoimmune department (i.e. rheumatoid arthritis etc)...or perhaps elsewhere.

So...think it's worth investigating the knee thing further...might be worth asking your GP to run an antibody panel. If any of the antibodies are raised, then referal to a rheumatologist for further investigation would be the norm (a rheumatologist can run more specific tests for a range of autoimmune conditions). Would also have expected your GP to do bloods for ESR, CPR and rheumatoid factor - to check level of inflammatory markers. Again, if raised, would require referral to a rheumatologist for further investigation.

And oh dear...it’s not unusual to hear of GPs and consultants who are ill informed about B12 deficiency/PA.

Here's a copy of the diagnostic and treatment guidelines that they should be following - so you know what they should be doing.

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BSH) Guidelines for the Diagnosis and Treatment of Folate Deficiencies)

Also worth noting that if you have neurological symptoms (and it sounds like you do because you've been referred to a neurologist), following the loading doses you should continue on every other day injections until no further improvement (many GPs and consultants do not know this).

Here's a link to the BNF - doctors prescribing guidelines - which details this treatment (third paragraph down - not many doctors read that far):

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Also - those with B12 deficiency / PA almost always have other absorption problems - worth asking GP to check ferritin (one marker of iron deficiency), Folate, and vitamin D levels. Some of the main 'culprits' and can make you feel very ill if too low in the reference range.

Finally, so sorry that you’ve been having so much trouble getting treatment. Disgraceful that you were not treated for PA and the B12 deficiency it causes immediately upon diagnosis - what should have happened. And well done for having the determination and courage to demand treatment.

PA and B12 deficiency can be very complex and it’s very difficult when seeing doctors who do not understand it (understatement). Most here find that becoming knowledgable and collecting appropriate evidence to share with their doctors helps. So, worth reading the second and third PAS pinned posts (to the right of this page when you log on or at the bottom if using a phone). Lots of information there that will help you.

And just a quick note - after B12 injections, serum B12 testing is no longer required. Serum B12 levels should be very high - sometimes off the top of the reference range - some doctors state that this is evidence of B12 toxicity (nonsense) and stop injections. Some state that this means you have enough B12 and don't need any more injections until B12 levels drop again. More nonsense. If this happens to you (and I sincerely hope it doesn’t), please post again for more advice and evidence to present to your GP.

The main thing to remember about B12 injections is that it's crucial to have injections at a frequency that gets and keeps you well - and this frequency is different for everyone (despite the one size fits all treatment regime currently prescribed in and by the BNF). If symptoms get better when you have a jab, return before the next jab, and then get better when you have the next jab, this is a sure indicator that you need more injections. The aim is to have injections often enough to stop symtpoms returning - something you can ask more questions about if you have issues.

Not forgetting that neurolgical symptoms require every other day injections until no further improvement 😉.

So, suggest you follow up the knee issue with your GP as unlikely to be a direct result of B12 deficiency or PA.

Good luck and post again if you need more help.

👍

fbirder
fbirder
in reply to Foggyme

Didn’t know about B12 and gout. I’ve just had my first attack of gout. Knocked out by three days of prednisone pills.

That’s my reading sorted tomorrow.

Foggyme
FoggymeAdministrator
in reply to fbirder

Grief fbirder....sorry to hear that. Gout is not good! Likewise steroids.

Mentioned in patient information leaflets and Mayo Clinic etc. but haven't been able to find much in the research department (just a quick trawl)...so be interested to hear if you manage to dig anything up.

Small mention here (but not referenced in research papers at end - unfortunately)

naturalmedicinejournal.com/...

Also some connection between diabetes / gout...but can't find research paper right now...will look for it if something you're interested in.

Happy reading and a large dose of pain relief...

fbirder
fbirder
in reply to Foggyme

Thanks.

I’d heard that the pain of gout was one of the worst. It was nothing compared to my occasional bouts of osteoarthritis. A few paracetamol lowered the pain to a decent level and two days of steroids removed the swelling.

Doc reckons dehydration due to the stupid weather may have kicked it off. And I checked on the genetics - I’m a prime candidate according to that.

Foggyme
FoggymeAdministrator
in reply to fbirder

Pleased that the pain and swelling are under control.

Don't know if you've heard of it but there's also something called pseudo gout...to do with a build up of calcium crystals in the joint rather than raised uric acid levels. Supposedly not quite as painful as gout.

Hipgnosis
Hipgnosis
in reply to Foggyme

Thank you for your in-depth and helpful reply. My blood tests can’t explain the inflammation and swelling. I’m starting to think it’s saphenous neuropathy. Of course my GP, internist, and neurologist have been completely useless. But the symptoms line up with everything I found in my research. Thankfully after a painful 3 month wait I am seeing a new MD next week. Fingers crossed she is more informed and helpful. Thanks to all for your replies. I need to scour PA medical texts to see if a link has been made to saphenous neuritis/neuropathy.

Marz
Marz
in reply to fbirder

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/117...

There is usually a link with endocrine disorders. If you do not approve of the Research Papers posted - there are plenty of others :-)

Foggyme
FoggymeAdministrator
in reply to Marz

Great papers. Thanks @Marz 👍

I’ve had only my keft knee swell up but never linked it to B12D or the injections before. For me it is like water on the knee and when swollen, it hurts to bend. Dr has not been able to determine a cause.

I thought it arose from always kneeling down on that knee or having that knee rest against the car door while driving here in the USA (left hand drive).

I got an elastic knee support and wore it until the swelling went down. Kind of like squeezing out the water. I also got knee pads for kneeking work in the garden. I also got a “dog bone” cushion to keep my knee off the car door while I drive. The dog bone shape is usually a neck support while traveling but works to stay on the knee/theigh as well.

The issue has returned twice in the last 3 years but is gone at the moment. I’ll pay closer attention to any link to the B12D from now on.

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