An introduction.: Thank you for my... - Pernicious Anaemi...

Pernicious Anaemia Society

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An introduction.

Twaddletop profile image
22 Replies

Thank you for my addition to the group. I live with PsA, PA and Osteoporosis. I am in my 60’s and am blessed with beautiful Grandchildren. It is to spend time with them I feel moved to explore any and every angle of living as well as I possibly can.

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Twaddletop profile image
Twaddletop
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22 Replies
Nackapan profile image
Nackapan

Welcome. We try and help each other as much as possible.

Welcome Twaddletop and I hope you find any answers and support you need here,they’re a lovely kind bunch of people so feel free to join in.xx

Twaddletop profile image
Twaddletop in reply to

Thank you

Seth12345 profile image
Seth12345

Welcome. I'm new here and it is an AMAZING group of friendly and supportive people

Twaddletop profile image
Twaddletop in reply toSeth12345

Good to know Seth x

wedgewood profile image
wedgewood

You will love this forum . . Always someone to help . Welcome indeed . 👍

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum, I'm sure you'll find lots of support here.

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

If you're in UK, please be aware that NHS B12 treatment may be impacted by pandemic.

Some forum members have had B12 injections stopped/delayed or swapped to oral tablets.

If this happens to you, come back to the forum for support.

I left a long reply in this next thread with info on impact of pandemic on treatment

healthunlocked.com/pasoc/po.....

I am not medically trained.

Cherylclaire profile image
CherylclaireForum Support

Good to meet you.

The people here are great for a morale boost, an answer to a question (even if you think it's a stupid one), advice on what to ask GP/ consultant for, congratulations and commiserations, a laugh or two - and above all, kindness.

(Not yet sure what PsA is, so off to look it up.)

Twaddletop profile image
Twaddletop in reply toCherylclaire

Thank you Cheryl. PsA is psoriatic arthritis which is a blight on all its sufferers lives x

Cherylclaire profile image
CherylclaireForum Support in reply toTwaddletop

Thanks for that- like I said : ask even if you think it's a stupid question. Psoriasis runs in my family, so I should've known this. Good to learn.

Twaddletop profile image
Twaddletop in reply toCherylclaire

I don’t think there is such a thing as a stupid question. The only way to learn is to ask and with auto immune problems knowledge is power x

Rubyroo10 profile image
Rubyroo10 in reply toTwaddletop

My daughter had this and is now on methotrexate not sure of the spelling . .it is a chemo drug..She was covered in psoriasis from head to toe then went into her joints affecting. Mobility x

Twaddletop profile image
Twaddletop in reply toRubyroo10

I feel so sad when I see youngsters at the rheumatologists clinics. Kids should not have to suffer like that. I hope Mtx helps your daughter.

Rubyroo10 profile image
Rubyroo10 in reply toTwaddletop

Thank you it does help very much. Obviously some side eeffects but worth it as all the psoriasis has gone

Kazania profile image
Kazania

Hello, you will find everyone very knowledgeable and helpful. They have certainly given me lots of help and information. Good health.

Twaddletop profile image
Twaddletop in reply toKazania

Thank you very much. I spoke to my GP this morning and I’m getting a B12 jab this afternoon. I ask them to check the latest guidelines, they did, then agreed to see me. My PsA is not under control. Seckimumab is keeping my skin clear but is having no effect on my joints whatsoever. God only knows when anyone will get to see a rheumatologist x

Kazania profile image
Kazania in reply toTwaddletop

Well you are very fortunate in your GP you will see from other posts that a lot of surgeries are refusing injections and insistjng that tablets are fine, which they are not. Keep well😄

Twaddletop profile image
Twaddletop in reply toKazania

I know and I’m grateful to them. I had asked them to read the latest guidelines which sat that PA patients suffering from neurological symptoms should be given B12 injections. I was also able to point out that an imbalance of B12 could cause a flare in PsA. I don’t normally challenge my GP but I’ve been feeling really bad.

I just had this conversation with a family member this week. I said I’d bet my socks that he has b12 deficiency and that the PsA was as a result of that not vice versa.Be interesting to see if the b12 does get your PsA under control as you say will you update and let us know then we can maybe help point someone else in the right direction.,good luck and take care and well done re your b12 xx

Twaddletop profile image
Twaddletop in reply to

Thank you x

Twaddletop profile image
Twaddletop in reply to

Just thought about what you said. I think I had not long had a Schilling test done and had started on B12 when the signs of PsA started. Thickening toenails, psoriasis in my ears, strange bumps on my fingernails etc etc. It was years before I was given the PsA answer. I guess in my case, it was a wee bit harder to spot some of the damage as I have had osteoarthritis since my twenties. I would not like anyone to go through the years of d irreversible damage done to.my hands, feet and spine whilst waiting

in reply toTwaddletop

That’s sad for you things like this really dictate how we live our lives ,in my family members case they are walking around in constant pain with their joints and as you say the skin issues everywhere but I’m convinced if they had b12 checked properly and started the injections it would change and improve the PsA and of course their quality of life ,but! Sadly,you can take a horse to water and all that,all we can do is pass on our knowledge in the hope it will help but we can’t ram it down their throats can we.take care x

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