Patient Comments: Paget's Disease - Treatment

Question:

Please describe the treatment you received for Paget's disease. Submit Your Comment

Comment from: Zee, 45-54 Male (Patient) Published: January 17

I was diagnosed with Paget's when I was 40 and I'm 52 right now. I started using Actonel on a daily basis until last year when my doctor suggested to switch to the infusion, and it's been 5 month since. I used it and I already did 3 tests after the infusion and I'm really satisfied with the result as my alkaline level is maintained at the normal level so far. But I still have hip pain which prevents me from normal sleep, sitting, and long walking.

Comment from: Can you believe this, 55-64 Female (Patient) Published: July 27

I am a 59 year old female. I was diagnosed with Paget's disease when I was in my late 20s. My alkaline phosphatase was in the 500 range. I had an older sister that was also diagnosed young. It is funny that the first thing a doctor says is to stop drinking. Well, they put me on Fosamax daily and I had to stop because I had GERD and it wasn't helping. They put me on a 3 day four hour drink with pamidronate, now they put me on a 15 minute drip, Reclast. This helps lower my alkaline, but it does creep up again. When it goes over 200 they schedule the IV again. I have it in my skull, my left femur, for which they just put a rod in, it was bowing and compromised. I have it is my right him, upper Iliac and right hip. I have it in my spine. But due to a herniated disk, I now have scoliosis. I have headaches every day, ringing in my ears and sore throats all the time. I have leg pain and groin pain and nothing is helping. I will need to retire soon because it is just too much to handle. I currently use a cane due to the recent surgery and vertigo. I've reached out the Paget's Foundation for guidance; they are the ones that directed me to which doctors I need to see. Through each doctor I was able to find other doctors for answers. I have had a ton of MRIs, CTs, and body scans and x-rays throughout the years. Not looking forward to what comes next.

Comment from: Bob Mazza, 65-74 Male (Patient) Published: January 10

I am looking for information about possible stem cell therapy for treatment of Paget's disease. I was first diagnosed in 1986 at age 36 on the occasion of a painful pulled inner thigh muscle and getting an x-ray. It got steadily worse but I was still able to make it to age 59 before it affected my ability to perform my job as a builder. So since then I have been working on home projects and helping friends. No more climbing or roofing. I'm very slow moving. Tripping and falling is a constant problem.

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