Hello...Most of the time I only stalk on this forum, but I need help please. I was diagnosed in 2016 with PA, after having 6 loading doses I have been on 8 or 12 weekly jabs with my surgery. 6 months ago with help from this forum I started to (not self inject because a local retired nurrse does my jabs) every 4 weeks, intramuscularly. I feel that regime has helped with some of my symptoms, but I am struggling with my gut/trapped wind/ mood/energy/personality/ tolerance/balance. I have tremor which exacerbates everything. Help from the GP's has been non existant. Sometimes I want to shut everything out..sometimes scream help. Should I have jabs more often??? Do subcutaneouse work well? Any comments/advice would be so appreciated.....thank you.
Injections..........: Hello...Most of... - Pernicious Anaemi...
Injections..........
hello edueweed, yes subcutaneous is just as effective as intramuscular injections. Also one benefits from many more injection sites and smaller shorter needle. I self inject 3 x daily subcutaneously.
As you still have many symptoms it is likely that you need more frequent injections. It will depend on you and severity, type of symptoms and duration.
eg neurological symptoms, minimum 1 x alternative days is recommended.
I do not know your specific symptoms but you have PA and for long time, so EOD injections is a good place to start.
I hope that you can inject yourself as it will be much more convenient and easier to monitor and adjust injections to suit. I searched online and watched many videos to educate myself how to s.i
Best wishes x
Thank you so much Wheat for all of your information......I need to 'man up' and get on with it....X
I've done subcutaneous b12 injections for about 5 years now.Yes they work.
I have the b12 on prescription presently for 2 weekly injections.
I also have IM 6 weekly at the surgery.
No science behind this just darnt change anything .
.
I've only noticed IM goes into your system much quicker.
It's nevef lasted longer than sc unfortunately .
Sense wouid say it should.
Hi Edeuweed - just a word of caution - if you are injecting that frequently you need to make sure that you rotate the injection site to give the skin proper time to heal. There are established rotation patterns used by diabetics (in the past at least before everything moved to insulin pens). Generally they are based on having 9 rough sites. I am sure your nurse friend will be able to advise.
Hi,
Just wondered if you have recent results for folate and iron and vitamin D.
Forum members often report deficiencies in these as well as B12.
It's also quite common to have thyroid problems here. Have you had any thyroid tests?
Thyroid UK on HU is a good place to ask questions about thyroid.
PA is an autoimmune disease and having one autoimmune condition can increase the risk of developing others.
"but I am struggling with my gut/trapped wind/ "
Were you tested for coeliac disease?
Coeliac UK article on diagnosis
coeliac.org.uk/information-...
Some forum members report that a gluten free diet has helped them even if they don't have coeliac disease.
"Help from the GP's has been non existant. Sometimes I want to shut everything out..sometimes scream help"
Many of us will empathise with how you feel.
Have you considered joining PAS (Pernicious Anaemia Society)?
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
PAS members can access a members support line.
pernicious-anaemia-society....
PAS have support groups in UK (and some other countries).
These can be a good place to swap information.
pernicious-anaemia-society....
B12info.com has lots of useful info.
There's lots more info people can pass on so keep asking questions.
I'm not medically trained.
Thank you so much Sleepybunny.......sorry it's taken a few days to reply.....got overwhelmed!!!....Have't had any bloods done since April....so will look into that....also coeliac...Due to a gluten intolerance I have been both gluten free and vegetarian for about 3 years..........I am a member of the PAS.....I so appreciate your comments.....thank you again......X
I would try every other day for a few weeks and see if that causes improvements. If not, maybe get your doctor to look for another cause?
Thank you Hockey_player.........X
Hi edeuweed.
I had the exact same experiences and let it go on for years until I finally ordered everything to do injections myself at home but my husband made me promise to tell my GP before I started. I broke down in tears at that appointment and was finally able to get my ferritin checked. That came back low and so was prescribed iron water for two months and then again for two more months. It’s made a really huge difference for me. I finally am feeling more myself, happier and not feeling like I’m going to fall over when out for a walk.
If you haven’t had your’s check, please do. Good luck and feel better. 🙂
Hello and welcome! I inject IM and it’s really not as daunting as it seems, and as many point out in this form, they do fine self injecting SC. Monthly or every other week injections was not enough for me to fully recover or keep symptoms in remission. I needed weekly and right now I’m needing even more injections due to relapse caused by US shortage of hydroxo. Once symptoms resurface, it takes time to get back to where you were before. Still struggling with that now. Sounds like you just need a more aggressive injection schedule. Best of luck to you!
Thank you mog-woo...........Sorry to hear you've had a relapse......but thank you for the advice.........Like I siad to another member.......I'm going to have to 'man up'!!!! X
Me again... I think "man up" is an inaccurate analogy. You want to learn a new way of helping yourself that's unlike anything you have done before, and understandably comes with a little anxiety. And presumably you have a knowledgeable person whom you are comfortable with - the local nurse - to instruct and otherwise guide you, which will make learning the new process much easier for you, though, again, not without a bit of initial anxiety.
I inject every other day. Have been now for a few months. Still struggle with indigestion and tiredness. I’ve started taking some apple cider vinegar before meals in the hopes it will hope break it all down.
Thank you Gobbozoik.............I'm going to have to up my jabs.....I grow my own Kefir and take that night and morning and have just started a Viridian Digestive Aid (with BetaineHCL) before meals......... so we'll see if that helps the digestion.....if not I'll look at apple cider vinegar too..........This condition is challenging!!!! X
have you had your gallbladder out?
In addition to the other suggestions I would recommend getting a test for h-pylori for the gut issues. That causes trapped gas's, pain in the upper abdomen and constipation.
The suggestions for the other tests give are good too!!
And I also agree that you definitely would benefit with at least every other day (EOD) injections.
No I still have a gall bladder..........Have done a little research on h-pylori.....going to ask the GP for a test along with the other recommended tests..sounds like a possibility.......if so I hope I can help with something holistic.........Thank you so much B12Life X
NICE (National Institute of Health and Care Excellence) have some documents that mention H pylori.
Search online for "NICE H Pylori guideline" to find them.
Has your GP looked into whether some gut issues could be due to lack of stomach acid?
Low levels of stomach acid can be associated with PA (pernicious anaemia).
Unfortunately the symptoms of high levels of stomach acid and low levels of stomach acid are very similar.
It's not uncommon for forum members here to have been put on medication such as PPI drugs for high levels only to find out in later years that they actually have low levels.
Thank you again Sleepybunny......As ever it seems anything to do with this condition is complicated.........X
Hi Edeuweed,As others do, I'm on every other day. Daily if I'm feeling rough.
Do take B9 l-methylfolate of folonic acid, NOT folic acid, as it's an important co-factor, as well.
Do take extra methylated B vitamins. B6 is important as with B12 and B9 it functions in the liver to recycle proteins. Build up of homocysteine is not good.
Do eat oily fish as it contains the most directly digested form of fat to rebuild nerve and brain myelin. Nuts, olive oil and grass fed meat next best.
Do take extra vitamin D and its co-factors vitamin K and magnesium ( excuse for a long soak in an Epsom salt bath, I like lotion it helps with sleep too). No one in the west gets enough sunshine, to make enough vitamin D.
For trapped wind, move. Gentle daily walks. If it's bad, lie on your back, pull in your knees and hug them, rock from side to side and back and forth. Then lie on your tummy for a while, put a pillow underneath your tummy, lift your feet.
I bend, I fart these days!
Big hugs, keep going gently and keep smiling 🍀
Thank you so much for all of that information Oneash..........particularly like the bending and farting!!! At present I take a Viridian multi vitamin.........but will have a look at either a B complex or the B vits individually. I also take 2000 Vit D daily with K2 and use a magnesium spray at night......trying to keep a close eye on everything...so appreciate your comments....though some days the keeping smiling is a challenge........maybe that will improve with more frequent jabs!!!! Again....thank you X
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