Pernicious Anaemia Society

First use of the patches ☺

So pleased with the patches. Put my first one on yesterday and it comes off now after 24 hours. The difference it has made is astonishing. I only bought a 6 week supply to begin with ( 1 a week ) and now definitely be ordering more before they run out. This proves that everyone I have spoken to at our Health Centre hasn't got a clue about the way PA works. I was really desperate. Thanking the Lord for these patches . Also so grateful for the information here and for the way we can share our experiences with each other. The patches are called Vie Patch and are available on Amazon. Will keep you informed as I go along with them. All the best everyone

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That's good to read Margaret-S

Did you get your Folate checked?

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Not yet Clive. Seeing medicine reviews man on Tuesday. Will see what he says.

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Glad they seem to be working for you. They were the only brand that seemed to make a difference for me.

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Lisahelen, it's great to get some relief isn't it? Hope it keeps on .

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hi. If its the same ones I use, there's folic acid in them too, so too late to get that level checked now you're supplementing. They helped me too.

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I have been on the patches for some time - but find that the effect does not last the week. I usually either supplement with Living Nutritional's B-12 patch with added folic acid or put on another Vie patch after about 5 days. You may find that one a week is enough for you though.

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Was wondering about that Pixie. Glad to know that you have tried them too. Will see what like I am in a few days. All the best ☺

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Hope you continue to improve Margaret good luck with the patches

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Thankyou Pitney. So glad to feel a bit better.

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Thanks for the feedback on the patches Margaret-S.

One question I have for patch users though. Whenever I've taken high-dose sublinguals I've always found that I have to avoid taking them too late in the day or they affect my ability to sleep. Patches are presumably drip feeding you B12 constantly (including during the night), so have you found that they cause any problems with sleep patterns at all?

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Hi Bebster . Didn't seem to have any problems but then my sleep patterns can be quite erratic at the best of times. Took patch off yesterday and still feel like a new woman today. Especially mentally. No depression etc. Actually felt like getting out of bed these 2 mornings.

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Cool. It sounds like they're working for you, I hope that they continue to do so.

I'm currently on a sublingual regime (plus 3 monthly injections...sigh) and the jury is still out on those tbh. I'm mentally acknowledging that I may have to go down the self-injection route in the new year, but want to explore all of my options. I hadn't really considered patches until now but it is another avenue to explore.

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Hi Margaret

I’m so glad the patches are helping you, I’ve ordered some I’m just waiting for them to arrive!

I think its always worth giving these things a try as any improvement is a plus.

I do have injections every 4wks at my GP surgery (I know I’m lucky in that respect) but it’s just not enough.

Fingers crossed for you.

Karen 👍xx

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Thankyou Karen. It's great you have a GP who will give you the injections more frequently. Wish you all the best with the patches. Please let us know how you get on xx

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Hi Margaret

My patches have arrived, I have put one on now, I will let you know how I get on.xx

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Really hope they work. You should know very quickly. Xx

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I was using the patches whilst on 3 monthly injections. I then got monthly injections which helped a little then went downhill again. I've cut out gluten in the last 3 months and cant believe how good I feel and am now stretching out my injections - I'm now on 6 weekly (will do that for 3 months and reassess). It was my husband who researched and found gluten intolerance (not allergy) shows similar symptoms to b12 deficiency.

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That is very interesting softpaws. May just try that too. It is something that I have occasionly thought about. All the best.

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if you're trying anything new, try one nee thing at a time. Also, it took about 2 weeks after going gluten free to see a tea difference then I improved after that. Best of luck.

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Thankyou softpaws. The way things are just now with my family around more coming to Christmas I rather fear that my will power would be severely tested. Love mince pies😀 Will try after that although what I have tasted before wasn't particularly good to taste but need to persevere.🙄

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love cake from Iceland (and others) do a good mince pie. I struggle with the gf bread as I think its more of a cakey texture. Happy Christmas. 😊

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Will look out for that . Thankyou for the info. A very happy Christmas to you too xx

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Hi Margaret-S

I love the patches too, they're great!

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Hi terrybraden..so good to hear that you get help from them. I know that I was getting pretty desperate as the doctors I was seeing were so terribly unhelpful and lacking in both understanding and compassion and hadn't the least intention of looking more into the heaps of information that is now available. Here's to a happy Christmas and a healthier New Year to everyone. 🤗🎄

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Hi Margaret-S

I don't know if they study nutrition. I think as a GP, in their training, nutrition is a small part of their curriculum. Don't quote me on that, I haven't studied medicine. This is, I guess, why the lack of understanding and compassion.

I am gluten free as well, as I saw a naturopath and had myself tested to just see what exactly I was reacting to. (it was gluten, and dust). IgA and IgE I have problems with absorption, plus the medication I take for something else, from the research I have done, can make if hard for your body to absorb B12.

The patches work well for those of us who have absorption problems, so I'm glad they work for you. I feel energized as soon as I put them on. I use more than one, sometimes, as my body knows I need, I put on more. It depends on you.

I have been having sleeping problems, so I am glad someone suggested that the patches might be the problem here. So, I'm going to try putting them on first thing in the morning when I get up and taking them off no later than 3:00 in the afternoon.

I sure love the feedback I get here too. I have learned so much. Thanks for responding to me.

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Thankyou for your very interesting and helpful reply. I have been quite busy today going to town getting last minute gifts and I have had to put a patch on now. Was feeling a bit rotten. Last Thursday night there didn't seem to be any problems with sleep that I noticed but often my sleep is a bit erratic anyway. Anxiety is a problem quite often which makes things difficult too. Take care terrybraden and try to get good rest. I found out about 3 weeks ago that the more active we are the more B12 our body uses and that's why we need more which makes sense.

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Hi Margaret-S

How is your circadian rhythm? Do you practice sleep hygiene. Do you know what these are? I used to be a "night owl". I would go to bed late 10:30 pm or so and I couldn't drag myself out of bed until 10:00 am. I never felt refreshed. These days, I'm out of bed at anywhere between 6:00 am or 7:00 am and by 9:15 in the evening I'm ready for sleep and its getting better. (still dealing with the hormonal thing, night sweats. I'm taking care of that too, which is a whole other story)

Since the energy I get from the B12, my change in diet, plus I exercise more in the open air, I feel so much better.

I don't know what your lifestyle is like, but dealing with the deficiency has been the first step on the road to recovery for me.

I have problems with anxiety myself and am told I need to exercise help relieve it. Keep doing what you're doing and I hope all goes well.

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