Pernicious Anemia why am I getting worse

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Hi, Thank you in advancesmile in short, I was diagnosed with pernicious anemia 2 years ago, after having complete shutdown, mostly effecting my limbs but somtimes face, numbness, vibrations, twitching, eventually jerking of my arms and legs to where I couldnt walk for more than 10 minutes, Im 35 lived in China at the time, they did every test, found out my grandma and 3 others in family had pa.  My b12 was 123 and my splene was very enlarged, that w fam history they started me on b 12 injections, over next year slowly got better, untill the point where most days I felt pretty normal, I started sublingual after 6 months 3 /500mg a day. Overall controlled. I just moved to Taiwan one month ago and found some sublinguals here, different brand, I had a complete crash after two weeks on them, as I couldnt find the methycolbal sublinguals I took in China I started on the methycolbal injections 500 mg once a day for a week then every few days, but I still feel terrible, my legs and arms are extremely weak, and I have a lot of the muscle twitching back in my face around my lips and numbness and tingling and vibrations in my limbs, extreme shortness of breath, not to mention Im very short w my family( I have two young sons n hubby) Also I am taking folic, 

 should I take more shots a day as my previous sublingual was 3 at 500 mg and the shot is only once at 500mg

Am I being impatient, maybe this is because I crashed

and also why do I need so much everyday is that normal? I cant even imagine having to wait 1 or 3 months for a shot, I wouldnt be able to walk. 

Thank you in advance for your thoughts, Also most of my research is just trying to look it up online since my Chinese is still very limited to comunicate with doctors here. 

Thank you

B

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19 Replies

  • Posted

    Hismile thank you for your help, I went to the doctor today and got blood tests as you suggested, so I will find out next week. 

    Thank you againsmile

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    • Posted

      Hi bonnie. I hope your on the mend. I to have pernicious anemia. Have been for more than 10 years. I am now 52. My b12 level was 107. My GP explained to get to this level of b12 it would have taken 10/15years. So I would have been in my early 25/30. In this time scale I had 3 children not knowing I had pernicious anemia. Makes good sence now the problems I had having them. Like you I still feel bad every day. Pain in my joints, head, pins and needles in my hands face and feet. Tighting of my fingers. Will it ever stop. I do hope your getting better. Amanda.
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    • Posted

      I had a partial gastrectomy at the age of 17 in 1959 due to a perforated peptic ulcer.

      However it was another 13 years in May 1972 before I was diagnosed with P.A. by which time I was a walking Zombie.

      Ironically diagnosis was probably delayed by a "failed" Schilling test in 1968,  

      The test involved being given a massive injection of B12 and drinking a glass of radioactive B12 and these doses may well have "enabled" me to "stagger" on an additional 4 years before an "unheard of" second Schilling test which produced the eventual P.A. diagnosis.

      It is only during the last six years that having joined the Pernicious Anaemia Society that I've learned just how ignorant I (and it seems many GPs) was about B12 deficiency and P.A.

      Should I have not been warned of this back in 1959 after my gastric surgery and given B12 injections instead of just being advised to “get a sedentary job”? 

      However, there is life after P.A. as I'm still "clivealive" aged 75 biggrin

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    • Posted

      Hi Clive. So glad you are still with us. At a good age of 75. Not sure in some cases that hospitals and doctors and nurses realy tell or send our info to the correct places. I had a full B/C taken 2 weeks ago. Just this min just been to have them done again as they just lost them. ? Thank the lord but so sorry for you I have not had surgery. But they are now finaly checking if I have Cealiac or Chrones. As I was told I was borderline more that 10years ago. Members of you family should be checked for this to. Just in case. Yours is prob down to your surery you had. Yes makes you think.
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    • Posted

      Hi Clive. I was taking Folate with my B12 for more than 12years. Moved house. Started at a new surgery. They have stopped my Folate. Said I should not have been taking it all this time. Said it was only ment to be give for a few months until the injections got into my system. Wonce again as you say?
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    • Posted

      hi amanda. hope you don't mind me getting in touch. just signed up to this site today.

      i'm 45 years of age and recently been diagnosed with PA. this was discovered after i suffered a myocarditis (a swelling of the heart) and spent 24 hours in the coronary care unit at my local hospital. was told this was a result of an allergic reaction to new medication i had been given for palindromic rhuamatoid arthritis which i've had for about 10 years.

      around the same time i was diagnosed with the arthritis i had a full thyroid removal. over time the arthritis has got worse, palindromic being greek for coming then coming back again, basically flare ups of my joints which can last for 24/36 hours and be very painful and also demoralising.

      the whole PA thing is all new to me and any advice or help you could give would be great. gordon.

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    • Posted

      I assume that you are being treated with B12 injections.  

      What country are you in and what is the frequency of the jabs?

      Also do you know what your Vitamin B9 (Folate or Folic Acid) level is as this is essential to process the B12 you are having injected.

      I am not a medically qualified person but one who has had P.A. for 45 years and I'm still "clivealive" at 75

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    • Posted

      hi. yeah i've had 5 injections over a two week period just before xmas and to get one every three months. to be honest not noticed any difference at all and if anything would say taken a backward step. i don't know my b9 level but will ask next week when back at the doctors.

      any advice on work? i'm an operational police officer. off sick just now still recovering from myocarditis but due back in two weeks.

      oh and i'm in Scotland.

      thanks. gordon

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    • Posted

      Well you've had the "loading doses" as they are called and when you say you've "not noticed any difference at all and if anything would say taken a backward step." it  is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to your nervous system.

      What neurological symptoms are you suffering?  If after the five injections you have no improvement then you should be being treated in accordance with the guidelines below - especially the highlighted paragraph - which indicates a frequency of "alternative days until there is no further improvement, then 1 mg every 2 months" not the 3 months which you mentioned.

      Treatment of cobalamin deficiency

      Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

      Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

      The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

      However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment".

      I am obviously not qualified to offer "any advice on work" but P.A. does cause a lowering of energy levels but I would have thought your heart problems would be more to bear in mind if your police works is stenuous or stressful.

      In my own case I was told to get a "sedentary" job (whatever that was) but that was by my surgeon who removed tho thirds of my stomach in 1959 when I was 17 following a perforated ulcer. At the time I was an apprentice electrician and of course ignored this advice and qualified. However couple of years after I began to feel exhausted sooner than a 23 year old should do and it got worse and worse. This led to my eventual diagnosis of Pernicious Anaemia in 1972 by which time I was a walking "zombie".

      We can store several years supply of B12 in our liver but like with a battery in needs to be recharged/replenished.  Stomach surgery is one of the causes of B12 Deficiency leading to P.A. so I was like a leaky bucket.

      P.A. will not prevent you working - I retrained as an accountant - a sedentary job.

      I wish you well, and please remember to ask your doctor about your folate level and frequency of injections - and eat your greens! biggrin

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  • Posted

    Hi Bonnie. Your B12 levels were prob very low. That is why you crashed. Your B12 and Folic will take sum time before it kicks in. After you are having them 3monthly. You should start to feel better. But 2 weeks before my injiection, and 2 weeks after I felt like I had been hit by a train. Every muscle and joints ached. After rec my first b12 more than 10years ago. I am still feeling tired. I have pins and needles in my hands face feet and my finger are hard to bend. Now they are doing full blood counts again for the 2 time in a month. Hope your starting to feel better. A
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    • Posted

      I too am having real problems with vitamin b12 deficiency diagnosed a month ago and had 6 starter injections but since then feel worse. My legs are like lead weights and my feet numb. Hands tingling and feel awful. Actually sat in doctors as I'm writing this. Have read that people with nerve problems should have continuos injections until improvement - hoping this will be the outcome as can't keep going like this!!!

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    • Posted

      I am not a medically trained person but from 44 years experience sadly Mable1964 what you are going through is quite common as the damage done to your system is being "repaired"

      The guidelines say:

      Treatment of cobalamin deficiency

      Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

      Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

      The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

      However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

      This is the treatment you should be getting and I wish you well for the future..

        

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    • Posted

      I'm in your boat but my dr's don't take b12 seriously and are suggesting I stop injections as my symptoms worsen. Hoping for answers for us both!

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    • Posted

      How far into your treatment are you Julie59341? Is your diagnosis B12 deficiency? How long have you been having the symptoms? Have you had your folate level checked as this is needed to help process the B12?

      I am not a medically trained person but it is often a case of things getting worse before they get better.  Are you showing an improvement to some of your symptoms and feeling worse with others?

      There is not an overnight magic cure and long term damage can mean a long time healing process.

      I wish you well

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    • Posted

      Good morning Mable. I do hope your feeling better. I felt the same as you when I was first given my b12 injections 15 yrs ago. I felt unwell for a least 5months until the b12 got into my system. But everys levels and times when we start to feel better after our injections are different. I feel unwell about 2weeks for my injection is due upto about 2weeks after then I am fine until the next injection. Up until just over 2 months ago. Woke up feeling like I did 15yrs ago before even starting the b12 injection. I was born in 1964. Back at the docs this morning. Will keep you posted. Thank you. Take care. Amanda.
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    • Posted

      Morning Angel - thanks for your reply. Lead in bed writing this as legs are throbbing today!! My daughter massaged then last night and oh boy it was painful!! I am at my wits end at the mo as don't seem to be getting anywhere at the Drs!! I just want to be me again - up until 2 mths ago I was doing Pilates, walking the dog and climbing hills!! Today I can hardly manage the stairs. Feeling very low X

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    • Posted

      Although it is difficult try not to stress too much as that uses up B12 uselessly.

      I an mot a medically qualified person but think of the damage to your nervous sytem like electrical cables with damaged insulation so that the current leaks away instead of lighting up the bulb - your brain.  The B12 is repairing those cables and all of a sudden your brain is receiving an overload of messages from places it had "forgotten" existed.

      Do you know what your Folate level is as this is essential to process the B12.

      I am so sorry you are hurting.

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