[billycalexander]

The threads I've reviewed on this site about bisphosphonates aren't active anymore that I can see, so I thought I would revive the bisphosphonate discussion and see if we can get any updates from those who have used it in the past regarding their now "medium term" usage/experience. For that matter, anyone with recent short term use can post too! I'm not sure we have truly long term usage yet as the meds are fairly new at least in the CRPS world.

Billy

[cdwall]

I had it this past May 12-14. Three days of 30 mg per day of Pamidronate infusions. I have to go somewhere right now but will report back later.

[cdwall]

OK. I can write now. It's now been 52 days since I started the first infusion. When I had these infusions I was already 15 months into the disease with a lot of body involvement. In the best study, the one from Italy, the results were brilliant but the subjects all had the disease 0-4 months and probably had more localized disease than me. Before I had the infusions, I read all the studies on bisphosphonates used for CRPS and even people with long standing disease and more involvement seemed to benefit from the treatment at least a little. Results varied. There didn't seem to be any predicting factors as to who would do well and who wouldn't do as well. I think with more time and well controlled studies, these factors will out themselves. But it seemed to help everybody so I had no doubts it would be worth it.

As for me, after the initial expected week or so of adverse effects during and after the infusions, for me mostly GI problems -- severe heartburn and indigestion, and cramping as the drug pulls calcium from your blood back into your bone to rebuild bone, I quickly got better than I was before. I was at a point before the infusions where I was going to need someone to come live here with me because I couldn't handle driving and had bad problems with weakness, unsteadiness and falling and such. People were having to come in and help me and I was becoming less able to care for myself. I'm clearly doing much much better now. I've done some normal things I hadn't been able to do in many months. Things like go out of town for a weekend. I don't have the severe bone pain or the constant muscle spasms and charlie horse type cramps I was having. The parts that haven't gotten better include the severe edema in my right leg that goes from my foot all the way up to my upper hip and part of my abdomen. That was kind of disappointing. Also, I most likely have POTS and while I have not been as weak, unsteady and falling, my BP and pulse continue to be abnormal. I also continue to have migraines nearly every day. I still have some burning pain in my legs and arms but not horrible pain. It definitely improved the worst of the pain.

So I would say I fit in the category of someone it helped but not as dramatically as the participants from study from Italy. My three phase bone scan showed a lot of abnormal bone changes and I had gotten osteoporosis so I hope at the very least that has been helped significantly. Knowing what I know now, I would definitely choose to do it again.

I hope this helps. Has anybody else had these infusions? If so, I'm eager to hear your experience. I will also be happy to answer any questions anybody might have about my experience.

Denise

[Lottie]

Thank you for this very interesting update..So, am I correct that you were being treated for osteoporosis related to CRPS? Not treated for CRPS in general?

I had a osteoporosis "specialist" tell me there is no correlation between osteoporosis and CRPS.,.......so much for her!

I wish for you continued improvement. ~lottie

[cdwall]

Originally Posted by Lottie

Thank you for this very interesting update..So, am I correct that you were being treated for osteoporosis related to CRPS? Not treated for CRPS in general?

I had a osteoporosis "specialist" tell me there is no correlation between osteoporosis and CRPS.,.......so much for her!

I wish for you continued improvement. ~lottie

Hi Dottie, Thanks. No, I was being treated for CRPS type 1 in general. I hope it helped the osteoporosis as a side benefit but bisphosphonate infusions are an experimental treatment for CRPS that has shown promise. This is a much higher dose than what would be used to treat osteoporosis. It's a similar protocol to what is used to treat Paget's disease.

[billycalexander]

Cdwall,

Have your head he's seemed more pronounced after the pamidronate?

Billy

[cdwall]

Originally Posted by billycalexander

Cdwall,

Have your head he's seemed more pronounced after the pamidronate?

Billy

Billy, I don't understand what you're asking?

[billycalexander]

sorry,
Trying to see if the bisphosphonates made headaches come out or any worse.


Billy

[cdwall]

Originally Posted by billycalexander

sorry,
Trying to see if the bisphosphonates made headaches come out or any worse.


Billy

No the headaches aren't worse. I started on 2400 mg/day of gabapenten not long after and that can help with migraines. They have decreased at least in severity if not frequency. I expect it's from that rather than the bisphosphonate treatment.