Paget's Association

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Hello, my name is Marie , I am new to this. (80 years of age)

I have recently been told that I have Paget's Disease.

To be honest I did not even know that there was such a disease.

I have on the 25 July/17 had an infusion of Zoledronic Acid.

Can any one tell me of any side effects, I did not think to ask the Dr

at the time it was suggested that I have the infusion.

To be honest I have not felt at all well since I had the infusion,

after the 3 days of flu like symptoms, I expected to feel the same as before

but unfortunately that is not the case.

Can anyone tell me the side effects and do they get better?

Any help would be appreciated.

Marie B.

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Hi Marie, Flu-like symptoms are not unusual and in some cases can last longer than a couple of days. You should start to feel better soon. If you'd like to email the Paget's Association's Helpline I can answer your question more fully: helpline@paget.org.uk

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Hello,

Thank you.

Unfortunately I do not feel that great, defiantly feel more pain.

The Dr has instructed me to drink one pint of milk each day plus a yogurt.

Also to take 3 Calcium tablets per day, I am taking Pro D 400 iu capsules

as well. My question is, will this be permanent ?

I have been doing this for a month now and have an appointment to see the Dr again early Nov the first to be exact.

While I do not mind the milk intake etc. I do find that I feel very bloated all the time, not good.

Well that's enough of my moaning, any information on the above would be good.

Many Thank,

Marie.

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Good Morning Reddon, Thank you for your e mail.

Unfortunately I have already had the Zoledronic Acid treatment, and the way I am feeling now I think you could well be right in your comments. I have much more pain than before, my own fault, but, when I saw the Dr at the Nuffield Hospital after a load of questions he suddenly asked if I would like the treatment there and then. I should have said no and done some research, what an idiot! there you are.

Any way thank you for your e mail, take care.

Marie B.

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I have had several infusions with no longterm side-effects, I had some pain at the point of the disease, in my case the sternum, it lasted about 2 days, I was told that this is a sign that the treatment has reached the spot, I hope this helps, and I hope your pain goes away very soon.

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A very silly response, this kind of nonsense helps nobody.

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Hello Pantoe. Has the silly response been deleted. I can’t see what you’re referring to, so I hope it has if it was nonsense that might frighten people 👍🏼

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I can't find it but could be there, it was just a load of nonsense about not taking any kind of chemicals, claiming they are the problem etc, the usual hippy rubbish lol.

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Hi Marie, how long after the infusion before you had symptoms? And where is you pagets?

I had the infusion on Tuesday, and not feeling to good either. Are you taking paracetamol or something else,

I deliberated over having it for Two years, but there's no alternative. At present regretting it but

Hope we've made the right decision in the long run!

Best wishes Freda.

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Hello Freda,

Nice to get your letter.

I am so sorry to read that you are not feeling so good.

I can only tell you what I saw on the x ray as to where the pagets is, it looked to be in quite a large area around my shoulder blades and down my spine. I do not wish to say to much as I realize we are all different and possibly have different after effects. As yet things have not changed very much at all, and I have been getting much more pain apart from feeling so tired and generally under the weather as they say. What I hope for each day is that I start feeling better, as yet that hasn't happened. I feel much worse than before I had the treatment, sorry!

I know that we cant turn the clock back if we could I would not have had the treatment, but as I said that's just me, I am sure there are people that have the treatment and feel much better.

As I said I just hope that things will change I must believe that to keep myself going and also to keep looking after my husband who needs a lot of care, which right now I find really hard.

I have to go back to the Hospital November 1st so fingers crossed things should be feeling much better by then.

Hope this has not made you feel down I am sure that we shall both get there in the end, it's just taking longer than expected.

Take care Freda, hope you start feeling better very soon, keep in touch?

Best Wishes,

Marie.

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Contact the pagets help line ,and do join the pagets association they are really helpful. You can speak to others with the disease

Lancashire. Las

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