Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-09-2017, 03:18 PM #1
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Default Biophosphates Drug Study

I started the drug study today for neridronic acid...a biophosphate that they are studying for treatment of CRPS. I believe there are several studies out there and some are for different biophosphates...but sure how much they differ from this one. I am officially the 156th person to participate in this particular study.

For the past month or so I have been taking Calcium/Vitamin D supplements for this study. I take two pills, twice a day. My vitamin D was low...so they high dosed me for 2 weeks on vitamin d to get it above 30 so I would qualify to participate in the study. I am supposed to take the Calcium/Vitamin D supplements twice daily for 14 months as part of the study.

Today was the first of four infusion treatments. I had to be fasting when I got there because they drew some blood right away. The infusion itself lasts 4 hours...there were several surveys I had to fill out first when I got there and they did 3 EKGs before the infusion along with taking vitals, and then did the same after the infusion was over.

So far...only side effects from the treatment are that I am tired and have a bad headache (and that could be because I got almost no sleep last night too). They keep saying flu like symptoms are pretty common though.

I brought an audio book with me and my cross stitch to keep me busy during the infusion and that went well. I had to set the stitching down a bunch of times because of the headache...but I was glad I had the audio book to listen to because I could just close my eyes for a few minutes and rest a bit before picking the stitching back up.

My left hand where they put the IV...that HURTS...like...hurts worse than IVs and blood draws normally hurt. I'm not sure why. When they took my blood pressure after the infusion was finished...I thought I was going to die from the pain in my hand (no joke...it felt like someone drove a spike through the hand).

All in all...today's visit lasted 6 hours. I go back Friday and they said it should be a little shorter because I won't have as many surveys and things to do next time. They did say that by the third treatment I should start seeing some positive effects from the drug but not to expect anything before then.

Will update Friday after my next treatment.
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Old 08-10-2017, 08:12 AM #2
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I started the drug study today for neridronic acid...a biophosphate that they are studying for treatment of CRPS. I believe there are several studies out there and some are for different biophosphates...but sure how much they differ from this one. I am officially the 156th person to participate in this particular study.

For the past month or so I have been taking Calcium/Vitamin D supplements for this study. I take two pills, twice a day. My vitamin D was low...so they high dosed me for 2 weeks on vitamin d to get it above 30 so I would qualify to participate in the study. I am supposed to take the Calcium/Vitamin D supplements twice daily for 14 months as part of the study.

Today was the first of four infusion treatments. I had to be fasting when I got there because they drew some blood right away. The infusion itself lasts 4 hours...there were several surveys I had to fill out first when I got there and they did 3 EKGs before the infusion along with taking vitals, and then did the same after the infusion was over.

So far...only side effects from the treatment are that I am tired and have a bad headache (and that could be because I got almost no sleep last night too). They keep saying flu like symptoms are pretty common though.

I brought an audio book with me and my cross stitch to keep me busy during the infusion and that went well. I had to set the stitching down a bunch of times because of the headache...but I was glad I had the audio book to listen to because I could just close my eyes for a few minutes and rest a bit before picking the stitching back up.

My left hand where they put the IV...that HURTS...like...hurts worse than IVs and blood draws normally hurt. I'm not sure why. When they took my blood pressure after the infusion was finished...I thought I was going to die from the pain in my hand (no joke...it felt like someone drove a spike through the hand).

All in all...today's visit lasted 6 hours. I go back Friday and they said it should be a little shorter because I won't have as many surveys and things to do next time. They did say that by the third treatment I should start seeing some positive effects from the drug but not to expect anything before then.

Will update Friday after my next treatment.
Flu-like symptoms are pretty common, but they can lessen those by slowing the drip on you. It takes 4H minimum or you'll have more issues to deal with!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-10-2017, 01:02 PM #3
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My thoughts and prayers are with you Catra! I hope you start to find some pain relief from this procedure soon. Hugs.
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Old 08-13-2017, 10:36 AM #4
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Hey Catra,

I hope you are feeling well during your study. Hugs and healing love are coming your way.

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Old 08-14-2017, 09:17 PM #5
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Thanks everyone!

I meant to update over the weekend...but I had my daughter all weekend without much help so I was just too tired to even get on the computer and my phone is a beast to try and post anything more than a short post from.

Friday things went pretty well (my second infusion). They put the IV higher up in my arm and that was MUCH better. I'm still having pain in my hand and a flare up there from the iv I had for the first infusion...but I think that's because (of course) I developed a blood clot in my hand from the iv. Sounds like it's harmless except that it will hurt for a while. They suggested warm compresses on it to help but it could take several weeks for that to resolve and stop hurting (fun). Side effects from infusion #2 were the same as the first...tired and headache. At the end of the infusion Friday my heart rate was between 108 and 113 (they took it three times and it went up each time). I told them it's because every time they use the blood pressure cuff the pain goes up and then so does my heart rate...but I'm not sure if they believe me. I was literally just laying in one place for the last 4 hours...the pain is what elevates my heart rate...it happens every time. But anyway...a pretty non-eventful treatment day. The only survey I had to do was to rate my pain in the last 24 hours. They also drew blood (they'll be doing this at the beginning of each infusion and then a couple days after the last one they draw blood again).

Today (Monday)...I had infusion #3. Today...was...torture. Started with the nurse drawing blood...and missing the vein on the first try. Not a HUGE deal...just hurt a little in my right arm. I've been having them do the IVs in my left arm because while both my arms/hands have RSD...the left shoulder is a HUGE mess since my fall off the ladder so I NEED my right arm to not have extra flare ups because without it I would be dead in the water. Anyway...they have a resident do the IV. The one who came in to do my IV...did NOT really know how to do an IV. First try and the vein blew (it happens)...but I knew he didn't know what he was doing because he was literally punching my arm to get veins to "pop"...everyone always says I have great veins so this has never happened to me. He was not even remotely gentle. He kept insisting he wanted to put the IV in my wrist...ummm...no. I have a huge flare up in my hand...I'm not letting you put a needle in my wrist. So he goes to the underside of my arm but complains that the vein is deep but he'll try...and try...and try...and try. 23 pokes later (I counted)...he had to go get help...but not before popping the needle off and leaving it next to me on the chair. Oh...and he just left me bleeding with no bandaids or anything...and I was seriously dripping blood. Honestly...it was SO bad...I was in agony...but it was also like this surreal comedy of errors and (I feel bad about this)...as soon as he was gone I busted out into tears and laughter both. Maybe the pain made me lose it...maybe it was either laugh it off or pass out from the pain...I don't know...but I lost it and was a mess of tears and laughter. They got a doctor from the surgical center to come and do the IV for me. The spent a while trying to find a vein that wasn't messed up on the left arm, used some special paste and heat to get the vein to pop...but no joke...I didn't even feel the IV go in when he did it. Of course...he almost killed me when he tied the tourniquet on...he did it SO tight and my arm is burning BAD up there with bone crushing pain...but at least he got the job done and we were able to move on. Needless to day...at this point I was at a 10/10 in pain in that arm and it's still that bad. I have a couple of lidocaine patches on the arm now and they sent me home with extra heat compresses (I kept them on during the whole infusion). Me thinks I won't be using the arm for a few days at least and I will probably have to let them do an iv in my right arm for the last infusion...as much as that now REALLY terrifies me...lol.

I felt more tired than usual during the infusion today and actually took a 15 minute nap...I'm guessing just because I was SO drained from the IV experience on top of everything else. Otherwise...everything went smoothly. My HR was 120 at the end of the treatment...but not surprised after all of the extra pain. Actually...I am a little surprised because I would have guessed it would be closer to 150 with the amount of pain I was in. EKGs were normal but did show the elevated heart rate.

They did tell me that some patients feel relief as soon as after the 3rd treatment (but with my flare up I'm not sure I'll be able to tell that soon)...but also that it can take up to 120 for the full effects of the treatment to be felt. Good to know.

Wednesday I go back for my 4th and final infusion...and then Friday I go in for a blood draw and EKG and a quick follow up. I'll let you guys know how it goes. Despite todays tragic comedy of the IV...this has not been a bad experience at all as far as treatments and side effects go. A couple of flare ups, being tired, and having a headache are not too bad at all. If I didn't have RSD in both arms...this whole process would be a lot easier I think.
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Old 08-15-2017, 11:53 AM #6
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OMG on the IV! I am so sorry!

That sounds just terrible. I cannot even imagine. I pray the next one is without incident.

It's ok to say up front that you need the best most experienced person. You can also ask that they use the "freezy" spray. Ethylene Glycol. It momentarily freezes the skin without damaging it and you can hardly feel a thing. The oral surgeon my son and I have both visited uses it and Wow was it a lot easier.

Maybe some Vit C to keep free radicals and resulting inflammation down?

I hope you heal up soon!
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Old 08-16-2017, 04:29 AM #7
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Originally Posted by catra121 View Post
Today (Monday)...I had infusion #3. Today...was...torture. Started with the nurse drawing blood...and missing the vein on the first try. Not a HUGE deal...just hurt a little in my right arm. I've been having them do the IVs in my left arm because while both my arms/hands have RSD...the left shoulder is a HUGE mess since my fall off the ladder so I NEED my right arm to not have extra flare ups because without it I would be dead in the water. Anyway...they have a resident do the IV. The one who came in to do my IV...did NOT really know how to do an IV. First try and the vein blew (it happens)...but I knew he didn't know what he was doing because he was literally punching my arm to get veins to "pop"...everyone always says I have great veins so this has never happened to me. He was not even remotely gentle. He kept insisting he wanted to put the IV in my wrist...ummm...no. I have a huge flare up in my hand...I'm not letting you put a needle in my wrist. So he goes to the underside of my arm but complains that the vein is deep but he'll try...and try...and try...and try. 23 pokes later (I counted)...he had to go get help...but not before popping the needle off and leaving it next to me on the chair. Oh...and he just left me bleeding with no bandaids or anything...and I was seriously dripping blood. Honestly...it was SO bad...I was in agony...but it was also like this surreal comedy of errors and (I feel bad about this)...as soon as he was gone I busted out into tears and laughter both. Maybe the pain made me lose it...maybe it was either laugh it off or pass out from the pain...I don't know...but I lost it and was a mess of tears and laughter. They got a doctor from the surgical center to come and do the IV for me. The spent a while trying to find a vein that wasn't messed up on the left arm, used some special paste and heat to get the vein to pop...but no joke...I didn't even feel the IV go in when he did it. Of course...he almost killed me when he tied the tourniquet on...he did it SO tight and my arm is burning BAD up there with bone crushing pain...but at least he got the job done and we were able to move on. Needless to day...at this point I was at a 10/10 in pain in that arm and it's still that bad. I have a couple of lidocaine patches on the arm now and they sent me home with extra heat compresses (I kept them on during the whole infusion). Me thinks I won't be using the arm for a few days at least and I will probably have to let them do an iv in my right arm for the last infusion...as much as that now REALLY terrifies me...lol.

I felt more tired than usual during the infusion today and actually took a 15 minute nap...I'm guessing just because I was SO drained from the IV experience on top of everything else. Otherwise...everything went smoothly. My HR was 120 at the end of the treatment...but not surprised after all of the extra pain. Actually...I am a little surprised because I would have guessed it would be closer to 150 with the amount of pain I was in. EKGs were normal but did show the elevated heart rate.

They did tell me that some patients feel relief as soon as after the 3rd treatment (but with my flare up I'm not sure I'll be able to tell that soon)...but also that it can take up to 120 for the full effects of the treatment to be felt. Good to know.

Wednesday I go back for my 4th and final infusion...and then Friday I go in for a blood draw and EKG and a quick follow up. I'll let you guys know how it goes. Despite todays tragic comedy of the IV...this has not been a bad experience at all as far as treatments and side effects go. A couple of flare ups, being tired, and having a headache are not too bad at all. If I didn't have RSD in both arms...this whole process would be a lot easier I think.
I can read he didn't know what he was doing - what a mess. Someone who has to try that often can't have gotten through nursery school!

Honestly!

I really feel for you. It's tough.

I have a worse right arm than left, so I typically get blood drawn on the left arm (the good arm).

Good luck. Hope you can finish your treatment soon, and I do hope you feel better because all the things you had to go through that could cause possible flare-ups and worsening... my gosh!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-18-2017, 01:14 PM #8
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Thanks everyone. I'm still dealing with a severe flare up in my left arm after the IV issues on Monday...and still in my left hand thanks to the IV the first day and the blood clot that's still there in my hand from it. Hard to tell if I have gotten any "relief" from the infusions so far because of the flare up. Once that settles down...then I think I will have a better idea.

I had my 4th (and last) infusion on Wednesday. I chose to have them do it in the left arm again because...well...if they messed up and I ended up with a flare up in my right arm too I would have been sunk. So while it was painful to do in the left...I think it was the right decision because the pain was already about as bad as it could be. The doctor who successfully got the IV in on Monday did it again for me on Wednesday...so at least it went in quickly on the first try. We kept heat packs on it during the whole treatment to help with the pain. The whole think Wednesday was pretty uneventful except that when they took the IV out it bled really badly...through the bandaid within a couple minutes. I did the usual surveys and blood draw at the start of the appointment, EKGs, and vitals...same as the first last 2 infusions.

Today (Friday), I went back to get blood drawn, vitals, and have EKGs...and had one survey to take about my pain levels. The flare up is probably skewing my survey results...but nothing I can do about that. It was a fast appointment...lasted only 20 minutes or so.

I go back for another follow up in a month. They said it can take 120 days for the full effects of the meds to take place...so I'll stay optimistic for some relief once the flare ups die down. Today is not really a good day...on top of the arm my leg pain is acting up and I'm shuffling around like a little old lady...lol.
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Old 08-18-2017, 04:50 PM #9
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Gosh Catra, that whole fiasco with the iv sounded horrific. I sure hope that your flare calms down and the study provides good results for you.
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Old 08-20-2017, 07:13 PM #10
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Hi, I have CRPS type 2 in my Lt arm that spread to my right arm and upper body. Injections, blood draws and all caused a terrible feeling of broken glass beneath my skin on my right arm. Now I do my best to limit all needle pokes to my lower extremities. It's risky as it's possible to spread this to my feet but so far no problems and I don't have to deal with the intense flare ups caused by needle pokes anyway.
I hope you feel better soon and have family/friends to support
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