Posts - Paget’s Support | HealthUnlocked

Paget’s Support

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Pamidronate infusion long term side effects

I had 2 infusions of pamidronate over 2 days in Aug 2019 for a stiff knee and Fibrous Dysplasia. I was told it would help strengthen my knee, the Fibrous...

I had 2 infusions of pamidronate over 2 days in Aug 2019 for a stiff knee and Fi...

•3 years ago

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Wrong post

Sorry Have written in Paget's post would have been PMR THATS HOW ANXIOUS I AM FEELING.

Sorry Have written in Paget's post would have been PMR THATS HOW ANXIOUS I AM F...

Lancashirelass07

•5 years ago

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Awful night

Waken at 2 sweating dripping wet ,head felt numb , pins and needles ,started panicking And took tablets 15mg then ,didn't sleep but wondering if this is...

Waken at 2 sweating dripping wet ,head felt numb , pins and needles ,started pan...

Lancashirelass07

•5 years ago

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Are all the Paget's Diseases connected???

Hi, my apologies in advance if this is a profoundly stupid question but I've been searching for an answer to it on the web for 3 days now, without success, so...

Hi, my apologies in advance if this is a profoundly stupid question but I've bee...

•5 years ago

Community Guidelines

Welcome to the Paget's Support Community for support of Paget's disease! We’re very glad you have chosen to be a part of our community. The Paget's Support...

Welcome to the Paget's Support Community for support of Paget's disease! We’r...

HealthUnlocked•5 years ago

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Updates to this community

We want to let you know that as of next week, Paget's Association will no longer be moderating this community. Over the past few years, Paget's Association has...

We want to let you know that as of next week, Paget's Association will no longer...

HealthUnlocked•5 years ago

Trying to figure it out

Hi Everyone, I'm Hannah, I'm undergoing investigation to find out what's going on but I suspect something autoimmune/connective tissue as I've had a million...

Hi Everyone, I'm Hannah, I'm undergoing investigation to find out what's going ...

•5 years ago

U.S. Paget’s Disease patient - new member

Hello All, I was diagnosed with PD of the right knee and femur at age 49. It seems to recur every four years and is back again for the 5th time. I’m always...

Hello All, I was diagnosed with PD of the right knee and femur at age 49. It see...

•5 years ago

Pagets With MGUS, What I should know about it,

I would be pleased for any information on this , As have been treated before with pamidronate and then zoledrate acid, for pagets...Does also affect the Mgus...

I would be pleased for any information on this , As have been treated before wit...

•5 years ago

Paget's Disease Information Meeting - live online 14:00hrs (UK time), Fri 11th Jan 2019

Brandon Lewis, MP for Great Yarmouth, where Sir James Paget was born and where we will be holding a Paget's Information Event and Webinar on Friday 11th Jan,...

Brandon Lewis, MP for Great Yarmouth, where Sir James Paget was born and where w...

•5 years ago

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Can you lose the efficiency of bisphosphonates with time? Can the body get used to them after many uses and then not getting help from them?

This question is for the administration. I have been using bisphosphonates orally every 4 years ( that would be 5-6 times during 20 years) and after that 5...

This question is for the administration. I have been using bisphosphonates orall...

•5 years ago

I would like to know if there is anybody with PDB from Canada. Toronto maybe?

I am 62 years old and having PDB since I was 35.

I am 62 years old and having PDB since I was 35.

•5 years ago

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Come to a Paget's meeting or listen online

On the first International Paget's Awareness Day, 11th January 2019, you can join a free Information Meeting in Edinburgh, Manchester, Salford or Great...

On the first International Paget's Awareness Day, 11th January 2019, you can joi...

•5 years ago

Appropriate use of this forum

This is a post from the admin: - Please would all users of this forum refrain from arguing or upsetting each other on this forum. If this forum is not helpful...

This is a post from the admin: - Please would all users of this forum refrain fr...

•5 years ago

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Hereditary links?

Hi, I'm new here and I've been exploring my family tree which has given me a couple of things which I hope somebody here can help with - apologies in advance...

Hi, I'm new here and I've been exploring my family tree which has given me a cou...

CuriousResearcher

•5 years ago

Hyperparathyrodism

have been diagnosed with Hyperparathyrodism and now wondering if this caused the pagets disease. I feel like the docs have not been very helpful and would like...

have been diagnosed with Hyperparathyrodism and now wondering if this caused the...

TSanders02251960

•5 years ago

The 1st Ever Paget's Day!

The first ever Paget's Awareness Day is taking place on the 11th January 2019! Take part by entering our competition or by wearing Blue and green (the colours...

The first ever Paget's Awareness Day is taking place on the 11th January 2019! T...

•5 years ago

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infusion

Would you suggest taking the infusion for the paget’s disease ?

Would you suggest taking the infusion for the paget’s disease ?

•6 years ago

No help from gp

Hi I’m new to this in 2009 the hospital thought I had Paget’s disease of the bone in my right leg which was not diagnosed properly until 2017 I know nothing of...

Hi I’m new to this in 2009 the hospital thought I had Paget’s disease of the bon...

•6 years ago

Do you need Support?

Do you need information, support or advice regarding Paget’s Disease? The Paget's Association can help. Please email helpline@paget.org.uk

Do you need information, support or advice regarding Paget’s Disease? The Paget'...

•6 years ago

Raging panic.

Iam going for a stress angiogram next week. Am very worried , any advice. Have had pains in between shoulder blades and breathless when mowing the lawn, for a...

Iam going for a stress angiogram next week. Am very worried , any advice. Have h...

Lancashirelass07

•6 years ago

ECG STRESS TEST

Have just been told by my GP. That I need a stress ECG test. Am now worried about it .any one had one? Think I may have angina. What happens if they find...

Have just been told by my GP. That I need a stress ECG test. Am now worried abou...

Lancashirelass07

•6 years ago

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pagets

i have just been told that i have pagets of the bone. Started i guess from the car accident when, i had my femur, smashed up at 16, im not 68 and they have...

i have just been told that i have pagets of the bone. Started i guess from the c...

•6 years ago

Resently diagnosed with PD in skull

Hi. In january I was diagnosed with PD in skull. I am 45 years old. Had zolodronic infusion 2 Month ago and still feels a strange feeling in my when I try to...

Hi. In january I was diagnosed with PD in skull. I am 45 years old. Had zolodro...

•6 years ago

Paget's since 2004

I have probably had Paget's in my right femur since 2004 but went undiagnosed until 2010 when it was found by chance on an Xray taken of my lower back, which...

I have probably had Paget's in my right femur since 2004 but went undiagnosed un...

•6 years ago

Paget's Disease

Are there any local support groups near Riverside, CA 92504 for Paget's Disease of the bone. ty

Are there any local support groups near Riverside, CA 92504 for Paget's Disease ...

•6 years ago

Hello I am Marieeve

I had Zoledronic Acid infusion, 25 July/17. I have not felt well ever since. At the moment I am getting very bad back pain from the waist up. is this due to...

I had Zoledronic Acid infusion, 25 July/17. I have not felt well ever since. At ...

•6 years ago

My ten year fight with Paget's

It's a first post for me. I have Paget's in my right femur with the complication of micro stress fractures. The consultant at the time recommended no...

It's a first post for me. I have Paget's in my right femur with the complication...

•6 years ago

Christmas

Happy Christmas all : )

Happy Christmas all : )

•6 years ago

The reclast has helped me

Since the infusion on Nov 2nd I have been feeling better, yes I can tell where the pain is in my body but I am not getting the full force of the pain.

Since the infusion on Nov 2nd I have been feeling better, yes I can tell where t...

TSanders02251960

•6 years ago

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