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Experiences with
Vitamin B12 / Folic acid
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Alendronic Acid and Methotrexate
I've had PMR for about two years. All symptoms vanished completely as soon as I was put on Prednisolone (15mg per day), but I had a bad experience with trying to reduce, as advised by both GPs and my rheumatologist, by large cliff-edge steps--from 15mg to 12.5mg, then 10mg, all in a very few weeks.
I've had PMR for about two years. All symptoms vanished completely as soon as I was put on Prednisolone (15mg per day), but I had a bad experience with trying to reduce, as advised by both GPs and my rheumatologist, by large cliff-edge steps--from 15mg to 12.5mg, then 10mg, all in a very few weeks.
PressBarVet
in
PMRGCAuk
3 months ago
GP disagreement re levo. Plus wondering if FT3/TPO link to Pernicious anaemia B12 treatment?
Question re changing GP in same surgery and differing GP views. So sorry its a long one, added alot of health backstory incase its useful. I'm in the UK and was dx hypothyroid last year. Been titrating levo and got to about 1 this spring. Was doing OK, not brilliant and was certin I hahe Pernicious Anaemia
Question re changing GP in same surgery and differing GP views. So sorry its a long one, added alot of health backstory incase its useful. I'm in the UK and was dx hypothyroid last year. Been titrating levo and got to about 1 this spring. Was doing OK, not brilliant and was certin I hahe Pernicious Anaemia
Opal79
in
Thyroid UK
5 months ago
What level is normal after B12 injections
First post after being diagnosed with very low B12 (67). I am in the UK and had the course of six injections within two weeks 12 weeks ago. My level of B12 has just been tested and is 360 but I have no idea whether this would be normal at this stage? I am debating whether to have another injection or
First post after being diagnosed with very low B12 (67). I am in the UK and had the course of six injections within two weeks 12 weeks ago. My level of B12 has just been tested and is 360 but I have no idea whether this would be normal at this stage? I am debating whether to have another injection or
NeverSayDi
in
Pernicious Anaemia Society
5 months ago
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b12 and ferratin
hi all does anyone know if a ferratin level of 35 can have negative effects on my b12 injections. Doctors have told me it’s well with range(15-300). been feel terrible for 18 months and feels as if the b12 has stopped working. Thanks
hi all does anyone know if a ferratin level of 35 can have negative effects on my b12 injections. Doctors have told me it’s well with range(15-300). been feel terrible for 18 months and feels as if the b12 has stopped working. Thanks
Lee_maynard
in
Pernicious Anaemia Society
5 months ago
Alendronic acid
I’ve just achieved the slow taper down to 3mg and am feeling fine. But I’m just wondering about how long to stay on the AA for. (I’m taking into account the trauma of snapping a tooth off last night (a front one) when biting into a square of chocolate and not being able to see a dentist until Wednesday
I’ve just achieved the slow taper down to 3mg and am feeling fine. But I’m just wondering about how long to stay on the AA for. (I’m taking into account the trauma of snapping a tooth off last night (a front one) when biting into a square of chocolate and not being able to see a dentist until Wednesday
Doraflora
in
PMRGCAuk
3 months ago
Schilling Test -or something else ?
I recently found this out: Seventeen years ago, my cousin was found to have B12 deficiency. She would have been in her early 30s then - and was told that PA was unlikely at that young age. They tested her. From what she has told me, it sounds as if she was given the Schilling test - as she remembers
I recently found this out: Seventeen years ago, my cousin was found to have B12 deficiency. She would have been in her early 30s then - and was told that PA was unlikely at that young age. They tested her. From what she has told me, it sounds as if she was given the Schilling test - as she remembers
Cherylclaire
Forum Support
in
Pernicious Anaemia Society
5 months ago
PA and FND
Today I saw a neurologist for the first time , sadly not impressed and I am frustrated . I have already posted about my bad experience and lack of care from my Gp surgery, the same from my new surgery. I realised that my right hip was not working as it should, couldn't lift it off the bed or get it into
Today I saw a neurologist for the first time , sadly not impressed and I am frustrated . I have already posted about my bad experience and lack of care from my Gp surgery, the same from my new surgery. I realised that my right hip was not working as it should, couldn't lift it off the bed or get it into
purpleabc
in
Pernicious Anaemia Society
5 months ago
sublingual B12
if there is ever a problem getting my injectable B12 I was told sublingual B 12might be answer for me with my pernicious anemia. Anyone have any experience with using it as a backup
if there is ever a problem getting my injectable B12 I was told sublingual B 12might be answer for me with my pernicious anemia. Anyone have any experience with using it as a backup
CH52
in
Pernicious Anaemia Society
5 months ago
B12 deficiency and bronchitis
hi. I’m new to this and I’m hoping that someone can help me. Over four weeks ago. I had a serious flu that turned out to be bronchitis. I was sleeping 20 hours a day and was seriously fatigued. I wasn’t getting better so went to the GP who told me I had post viral fatigue and told me to rest but weeks
hi. I’m new to this and I’m hoping that someone can help me. Over four weeks ago. I had a serious flu that turned out to be bronchitis. I was sleeping 20 hours a day and was seriously fatigued. I wasn’t getting better so went to the GP who told me I had post viral fatigue and told me to rest but weeks
Hatwindowwindow4
in
Pernicious Anaemia Society
5 months ago
Injecting with out of date B12 ampules
I still have some B12 ampules left over after panic buying a lot during the pandemic. Are they still effective a year or two after their expiry date, if they have been kept in the unheated spare room all this time?
I still have some B12 ampules left over after panic buying a lot during the pandemic. Are they still effective a year or two after their expiry date, if they have been kept in the unheated spare room all this time?
Cetus
in
Pernicious Anaemia Society
5 months ago
Peripheral neuropathy
Hi to the CLL community , on cycle 8 of my V and O treatment and now on Venetoclax for the last 4 months. Have had the venetoclax reduced to 200mg for a few weeks to help with neutropenia, but over the last 3 weeks I have developed neuropathy particularly in my fingers which wakes me up at night as
Hi to the CLL community , on cycle 8 of my V and O treatment and now on Venetoclax for the last 4 months. Have had the venetoclax reduced to 200mg for a few weeks to help with neutropenia, but over the last 3 weeks I have developed neuropathy particularly in my fingers which wakes me up at night as
puppy43
in
CLL Support
5 months ago
INTRINSIC FACTOR ANTIBODY positive result
Does a positive INTRINSIC FACTOR ANTIBODY mean I have Pernicious Anemia? Does this mean I'm on B12 shots for life?
Does a positive INTRINSIC FACTOR ANTIBODY mean I have Pernicious Anemia? Does this mean I'm on B12 shots for life?
ReallyWondering
in
Pernicious Anaemia Society
5 months ago
Private testing for B12 and MMA (UK)
Looking for some pointers from others. I have felt unwell since Jan 23. URQ pain, malaise, tingling on chest and in thumbs and fingers, cold extremeties, chest pain, shortness of breath , distinct and new varicose veins in ankles. Also poor fat absorption. I had thought maybe liver. But ultrasound and
Looking for some pointers from others. I have felt unwell since Jan 23. URQ pain, malaise, tingling on chest and in thumbs and fingers, cold extremeties, chest pain, shortness of breath , distinct and new varicose veins in ankles. Also poor fat absorption. I had thought maybe liver. But ultrasound and
Shoe2
in
Pernicious Anaemia Society
5 months ago
Dizziness
Has anyone experienced dizziness in between having B12.. I’m having up to 15 episodes of light headiness dizziness a day now having B12 every 8 weeks had 8 days ago but still getting dizzy how long does it take to get into system… had blood test all came back normal I’m thinking it could be neurological
Has anyone experienced dizziness in between having B12.. I’m having up to 15 episodes of light headiness dizziness a day now having B12 every 8 weeks had 8 days ago but still getting dizzy how long does it take to get into system… had blood test all came back normal I’m thinking it could be neurological
Catsmud
in
Pernicious Anaemia Society
5 months ago
VIT B12 BINDING CAPACITY, UNSAT(TRANSCOBALAMIN) LOW 528 L
IT B12 BINDING CAPACITY, UNSAT(TRANSCOBALAMIN) LOW - 528 L Reference Range: 650-1340 pg/mL I finally have a result that proves my B12 Deficiency that I have indicated has been quite recovered on EOD Hydro IM. The issue is that it went on back order everywhere, and I have been to minimal IM of Methyl
IT B12 BINDING CAPACITY, UNSAT(TRANSCOBALAMIN) LOW - 528 L Reference Range: 650-1340 pg/mL I finally have a result that proves my B12 Deficiency that I have indicated has been quite recovered on EOD Hydro IM. The issue is that it went on back order everywhere, and I have been to minimal IM of Methyl
LeaKolo
in
Pernicious Anaemia Society
5 months ago
severe osteoporosis and op drugs
is there people on here with L5 t12 who don't take any op drugs and take the risks of fractures, when I was dx I was told I must have zoledronic acid infusion to help me followed by prolia, I thought I was doomed unless I had treatment, I asked for another dexa scan before my 2nd infusion on the 25th
is there people on here with L5 t12 who don't take any op drugs and take the risks of fractures, when I was dx I was told I must have zoledronic acid infusion to help me followed by prolia, I thought I was doomed unless I had treatment, I asked for another dexa scan before my 2nd infusion on the 25th
Radars
in
Bone Health and Osteoporosis UK
3 months ago
my story
I started on cobalamin injections pre Covid then when lockdown arrived was put on Tablet form which remained until last July when a retired Doctor in our practice noticed I’d been requesting to be given B12 injections once more. I’d gone for a different reason but I felt so well by next day it convinced
I started on cobalamin injections pre Covid then when lockdown arrived was put on Tablet form which remained until last July when a retired Doctor in our practice noticed I’d been requesting to be given B12 injections once more. I’d gone for a different reason but I felt so well by next day it convinced
Beadbuddy
in
Pernicious Anaemia Society
5 months ago
Update: Tooth Extraction delayed because of risks while on Alendronic Acid
my dentist now informs me that having digitised my tooth X-ray and reconsidered, it could be saved with root canal treatment by a specialist, cost £800 to £1000, starting with a consult of £100. Alternatively I could proceed with extraction, however he will not do it, he would refer me to an NHS hospital
my dentist now informs me that having digitised my tooth X-ray and reconsidered, it could be saved with root canal treatment by a specialist, cost £800 to £1000, starting with a consult of £100. Alternatively I could proceed with extraction, however he will not do it, he would refer me to an NHS hospital
Thiago1396
in
PMRGCAuk
3 months ago
Normal B12 levels?
63 yo female. Symptoms have been over a year of tingling/light pins and needles in feet, exhaustion, and memory issues, now lately ringing in ears, diagnosed with low B12 (63). Currently on weekly shots of Cyanocobalamin 1000 mcg/ml. After 6 weeks my B12 is at 537. What should it be? Also had a homocysteine
63 yo female. Symptoms have been over a year of tingling/light pins and needles in feet, exhaustion, and memory issues, now lately ringing in ears, diagnosed with low B12 (63). Currently on weekly shots of Cyanocobalamin 1000 mcg/ml. After 6 weeks my B12 is at 537. What should it be? Also had a homocysteine
ReallyWondering
in
Pernicious Anaemia Society
5 months ago
Could this be the beginning of something good for B12 in the UK ?
https://www.ukri.org/who-we-are/how-we-are-doing/research-outcomes-and-impact/bbsrc/better-b12-safer-and-sustainable-production/ Am imagining the day when we can purchase B12 phials in our local pharmacies ? Or will Big Pharma make a move ? Whilst living in Crete for 15 years I was able to buy 3 phials
https://www.ukri.org/who-we-are/how-we-are-doing/research-outcomes-and-impact/bbsrc/better-b12-safer-and-sustainable-production/ Am imagining the day when we can purchase B12 phials in our local pharmacies ? Or will Big Pharma make a move ? Whilst living in Crete for 15 years I was able to buy 3 phials
Marz
in
Pernicious Anaemia Society
5 months ago
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