Pernicious Anaemia and RA?

[ihearttc]

Apologies for the very long rambling post-just wondered if this sounded familiar to anyone?

I was diagnosed with Pernicious Aneamia 2.5 years ago after I very long battle with GP to take me seriously. I have B12 injections every 12 weeks and have been fine up until recently. About 5 months ago I started getting pain in my hands. Its like toothache if that makes sense and the joints of my fingers have been swelling up then going back down again.

I had my last B12 injection 4 weeks ago. Normally after I have it done I feel like a completely different women...not tired, clear headed and loads of energy. This time its like its made no difference at all. We went on holiday just after I had it done (to Middle East so was hot). While there I had no pain in my hands at all but my ankles were really painful. Its like I can't bend them and Im almost walking flat footed the whole time. Just before we were due to fly home both my ankles swelled up...and I mean absolutely ballooned. I couldn't get shoes on at all.

Got home and 2 days later they were still incredibly swollen so saw emergency doctor who prescribed prednisolone and Naproxen and said he thought it was an arthritic flare up and I need to see someone at hospital. My own GP has referred me to Rheumatology because of my hands anyway and Ive got an appointment in a months time.

Went back to GP last week because I feel awful. Every single part of my body aches. Im tired and its like my brain is all foggy...basically how I was before I started having the B12 injections. They've done blood tests but Im waiting for results but they wouldn't test my B12 levels as they said there is no way they'd be low after having the injections.

Im sick of feeling ill. Ive got 2 young children and I can't even walk them to the park anymore because my ankles hurt so much.

What blood tests have they done?

Hello. Sorry you are having don many problems.
Have they checked your vitamin d levels? That probably won't give your swollen joints which could be rheumatoid arthritis or something else. However, vit d blood test is expensive and GPs are reluctant to do the test. Have they referred you to a rheumatologist? I do hope you feel better soon. Best wishes.

Eldon-as far as I know they done a full blood count, thyroid, and checked my iron, ferritin and folate. I actually got the results yesterday and they are all ok.

Would lack of vitamin d fit in with my symptoms? Im not sure if they are all linked or like you say the swollen joints are something separate like RA.

Yes Ive been referred to rheumatology-my appointment is in a months time.

There are specific antibodies to look for with things like RA. Maybe your GP wants the specialist to run those tests?

No Ive already had those done...thats why she referred me to rheumatology. She did tell me what the results were but it made no sense (and I was in a complete daze) but it seemed to indicate something?

The blood tests they did this week were to check there was nothing else going on. She wondered if it was 2 separate things...the joint pain and then possibly either low ferritin or thyroid but its all came back normal.

Im assuming rheumatology will do a full check of everything but its just awful feeling like this in the meantime.

It must be terribly frustrating. I wonder if you can try any local measures for the joint swelling; maybe very gentle stretches or cold compresses to ease the pain? Assume your ferritin is ok now (re tiredness)? I often have very low ferritin but still within the normal range (normal is anything from 10 or 20 to 300) so I sometimes take iron intermittently. But I suppose you would want to know where to are I. Those terms before taking extra supplements. Is the Naptoxen agreeing with you?

No its not at all...its making me feel really sick so I haven't been taking it. Im usually fine with any other painkiller but those are awful.

Im just sort of taking each day as it comes now until I have the hospital appointment. GP has been sympathetic but I get the impression she doesn't quite know what to do with me.

Are you taking something like omeprazole to help protect your stomach? Is ibuprofen not effective enough for your pain? You can get omeprazole over the counter in a lower dose or your GP could prescribe some.