Hello I am Marieeve

[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 Pagets? We can all be wise after, if I had a choice now I would NEVER have this treatment. Any one out there think about it very hard and long, and, do some research before saying, Yes!

[Krispet]

Hi Marieeve.

Is your pain in your area with paget or is it chest pain like.

[marieeve in reply to Krispet]

Hello Krispet,

My pain is from my neck and all over my shoulder area, down to my waist.

I do have Oramorph, which I can take every 6 hour, but it is not the answer to the problem, Pagets.. Reduces it to a dull ache, and feeling very tired.

Thank you for getting in touch.

Marieeve

[Lancashirelass07 in reply to marieeve]

Hi marieeve

I could say snap ,since my infusion in sept last, I too have aches and pains from my neck all down my spine.

I am so miserable with it ,due to have a six month check next month. I don't know what I'll do it they recommend another infusionI can't stand for long have to keep sitting down. Really fed up.

Family have no idea , they think Iam always moaning. Probably am. I try to keep going ,but worried constantly. How about you?

Cheers lancashirelass07

[marieeve in reply to Lancashirelass07]

Hello there,

I am so sorry to hear that you are feeling so ill, and, I know just what you are going through. To be honest I thought it was just me.

I am so relieved to read your e mail, I to get the same , can't stand long and need to sit down. Its unbelievable, I find everything such an effort. My pain is from the waist up and goes up the right side of my jaw, its really so miserable.

I have missed 2 appointments to go back to the hospital, just felt so ill, have another one due at the end of June, we shall see.

To be honest I have made some wrong decisions in my past, but, having that infusion was the biggest mistake of my life.

I try to keep normal for my husbands sake as I am his carer, but it is such an effort. He does comment that I am quiet, but, I just do not feel like talking, that's how it is.

I am sorry to poor it out on you, it is so good to know that it is not just me. I will shut up

Yes, I worry just the same as you, its not just you, any time you want to talk to me I am here for you, take care and everything crossed that things will get better SOON.

To Better Days, Marieeve x.

[Pantoe]

This is one for the experts, I can only say that when I had the infusion they told me it could give pain in the affected area for a time and this could be a good sign as it means it has hit the spot, but that is quite a long time to feel such discomfort, see your experts ASAP.

Good luck.....

[marieeve in reply to Pantoe]

Pantoe,

Thank you,.

Marieeve.

[fussydi]

I had an Zoledronic Acid IV in Jan. 2018, had flu like symptoms for 3 days...now have skull and neck pain radiating down my shoulders. The original diagnosis was Paget's of the right illian hip bone...a 9 cm lesion.....now three months later, MRI's show several lesions along my thorax and lumbar spine. The doctor said need bone biopsy to tell whether, malignant, benign, or Paget's. I'm not going to do this. My bone biopsy on my hip bone was horrendous and so tired of all this pain and contradiction of what this disease is and treatment.

[Krispet in reply to fussydi]

Hallo fussydi.

Did you MRI shows changes in your neck too?

[Pantoe]

You are having a very tough time there, I can't add very much other than to say I'm sure that all here are with you and hope for the very best.

[marieeve in reply to Pantoe]

Hello there,

Thank you, your email means a great deal to me.

Sorry this is so brief, again Thank you.

Marie