Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
I was diagnosed with acromegaly in 1982, had the tumor surgically removed the same year at New York University Hospital. I have been on bromocriptine since that time. I have had MRI evaluations of the pituitary roughly every 5 years, glucose tolerance and all the typical blood testing roughly annually during checks by my endocrinologists. In 2012, I developed pain all over my body, hips, legs, knees, feet, with bad swelling with pain and stiffness in a knee, which would clear up after a week or two, then have a foot do the same thing. Saw arthritis specialist who ruled out rheumatoid and osteo arthritis, she said it was possible it could be from autoimmune causes. In November 2016, the condition seemed to come back on top of the fact that I also had severe lumbar spinal stenosis. I just had surgery in late March 2017 for the stenosis, but am also dealing with hip joint and knee pain that on one occasion was severe in both hips (I rated it a 9 on the typical 10 point pain index). I was given 10/325 percocets for the back surgery, and these had no effect on the hip and knee pain. However, keeping ice on the sites at least allowed me to get some sleep. Before the lumbar surgery, I went back to the artritis specialist, she again ruled out rheumatiod, osteo, and this time auto immune causes. She hd x-rays of th hip, knee and hand. These all showed healthy joints with no degeration. She suggested talking to my endocrinologist about it. My current endocrinologist thinks I may need to switch drugs. He ordered an MRI, that was just done yesterday, and blood tests, and told me to come back in 6 months. I called his office 2 days ago and told his nurse that 6 months was not going to work, and I need to see him as soon as he gets my blood and MRI results back. The pain is interfering with the back surgery recovery and I cannot see tolerating pain in the 5-6 range every night for 6 months. It is possible that the bromocriptine dosage was reduced too much and this lead to the initial pain from 2012. I don't know. Has anyone else experienced this? I have been free of symptoms since 1982 until 2012. I'm not sure what to do at this point. I increased the bromocriptine dosage to what is was prior to the reduction and so far there has been no improvement, but it has only been a week. What is causing the joint pain? Can the cause of the pain be resolved with a switch in medication? I am hoping that finding the correct dosage of the appropriate drug will stop future occurences of the artritic symptoms. Since there is no visible damage to my joints, I should be ok once this is resolved? Or am I looking at permanent disability due to this? |
More to your issue see what the Mri says. and all ways get a second opinion on it. I also have other medical issues but i can only deal with one at a time. It is stressful and depressing.
besides the usual meds for pain and inflammation (tylonol, advil etc) see how you react to a round of Prednizone or one like it.
for a cheep remedy try the spice Turmeric. It really works. you need to take some regular pepper with it. not a lot. it is a fairly mild spice. You can make it in to a tea or sprinkle it on your food. You can get it in a pill form so it can be easy to take.
perhaps you need to switch to a different medication but ground zero you need to see what your results are. you can sort of build up a resistance to a drug or your body can change its chemistry in a sense.
I don't if this helps but let me know what happens.
I feel for you.pain isn't cool.
It is rare to find others who have this disease and even harder to find physicians with a lot of experience with Acromegaly. I am new at this and not quite sure how it works...