treatment for Pagets?

[london1234]

Having read the comments on treatment for Pagets with Zoledronic Acid, I am not convinced that any- one knows of a treatment--it seems to be at the experimental stage-and I would appreciate comments from Edinburgh University where they are studying the subject--in the meantime I will take 70 mg Aspirin

[Hidden]

Zoledronate has been repeatedly shown to give excellent control of overactive bone cells in Paget's Disease of Bone and is also effective for pain arising directly from the condition. There is a wealth of evidence to show its benefits. All drugs have risks and it is the minority of patients who suffer from side-effects of treatment. It would be good to hear, via this forum, from the majority who have a positive experience of treatment. We draw your attention to the following paper published in the Journal of Bone Mineral Research: A Single Infusion of Zoledronic Acid Produces Sustained Remissions in Paget Disease: Data to 6.5 Years. Ian R Reid, Kenneth Lyles, Guoqin Su, Jacques P Brown, John P Walsh, Javier del Pino-Montes, Paul D Miller, William D Fraser, Susan Cafoncelli, Christina Bucci-Rechtweg, David J Hosking (2012) Sep; 26(9):2261-70.

[london1234 in reply to Hidden]

I wish knew someone who is prepared to examine my skull for Pagets since I am told that the blood test and X ray are negative by Prof Fraser

[Hidden in reply to london1234]

Have you received a diagnosis yet?

i have had a scan of my head and was told it was normal-but my skull is enlarged and finally a GP acknowledged that but not other facial bone/feature changes.the pain i get in my skull bone has laways been classed as "a headache!".

Also said my blood test for it was normal but i have not had a blood test specifically for Pagets,My physio seemed to think the growth of my clavicle was Pagets.

[Mandy5 in reply to Hidden]

Hello rainbow. Have you got any further? Could you ask your GP to refer you to one of the hospitals that is a Pagets Centre of Excellence about this. If you can see facial bone changes and the physio can see changes to your sternum, an expert review of a plain x-ray or scan should be able to rule out or confirm Pagets.

[Hidden in reply to Mandy5]

hi Mandy5

not yer.still suffering head(bone)pain .i can feel more deformity to my skull/cheek and jawbones.seeing GP tomorrow.

[london1234 in reply to Hidden]

Hi,--try not eating cheese.

[Hidden in reply to london1234]

where does cheese or any food come into this??

[london1234 in reply to Hidden]

I have not suffered so much pain in the night since I have stopped eating cheese.

[Hidden in reply to london1234]

i rarely eat cheese-only eat anything in moderation -apart from a bit of chocolate most days.i can only eat certain foods that dont exacerbate my abdomen/abdominal conditions

[emerich in reply to Hidden]

Chocolate is a known trigger for migraines for many people, maybe give it a miss for a while and see if there's any improvement.

[london1234 in reply to emerich]

Thank you emerich--I love dark chocolate but it could be the trigger for Pagets too

[emerich in reply to london1234]

Really? I had no idea it could be triggered by foods, thought it was to do with bone regeneration cells. I love milk chocolate!

[Pantoe in reply to emerich]

It is not anything to do with any foods.

[london1234 in reply to emerich]

I have been prescribed vit D tablets but I have tried cheese instead to keep calcium level up---seems to work this time.

[Pantoe in reply to london1234]

Pagets is nothing to do with food.

[Pantoe in reply to london1234]

More a case of getting better sleep, nothing to do with Pagets I would think.

[Mandy5 in reply to Hidden]

Hope your GP appointment went well yesterday. I’ve seen some of your other posts now - with the photos. Obviously something is causing your terrible headaches but I hope for you that it isn’t Pagets. You look normal to me for a lady in her 50s (if more youthful than many) but you do look unhappy, which is not surprising if you are in pain and worrying. A liver function blood test (LFT) would show raised ALPs (normally a red flag for Pagets) and the scan of your head should have shown the marbling in thickened bone if you had Pagets.

I get migraines, which have been crippling in the past but are now much better as I’m prescribed Sumatriptan (Imigran). I only tell you to reassure you that there are treatments out there for horrible headaches if caused by other things. I really hope they get to the bottom of your pain and can find a treatment to help you

[jimmym]

Hi i take Amytripoline 10g for my pagettes along with Solpadol the pain is not as sore as it was but the Amytripoline makes me very tired i was told not to try the Zoledronate Acid so i have stayed clear of it <><><>

[london1234 in reply to jimmym]

Thanks for your e mail.I wonder why you were advised against Zoledronic acid ?

[Pantoe]

I think you could regret that decision, Aspirin is a well known risk, the Zoledronic Acid treatment did the job for me.

[london1234 in reply to Pantoe]

Thank you for your advice

[london1234 in reply to london1234]

Were you given the treatment by your Doctor or a Specialist?

[Pantoe in reply to london1234]

My Specialist, I have had to have 3 infusions over 2 years, the problem is now showing as near gone in the latest nuclear scan, it did reoccur after the first go so that's why I had the other 2, I had little pain, just a throbbing in the area for one day after the first infusion, she told me that is a sign that it's working and has reached the spot, however, I only have it in my sternum, a relatively small area.

[TSanders02251960]

I will be having a test next month that hopefully will show I am in remission. Fingers crossed. Since the infusion I have been told my heart rate is lower, but that is not a bad trade off for having the pain and the fatigue so much better. Of course with the winter my arthritis has been better, as well. I can tell its there but I am not getting the full force of it. Again fingers crossed