F
flutterbee
Guest
So, I've been thinking about this for some time. I know we aren't doctors and can't diagnose, but there is a wealth of knowledge and experience on this board and I want to get your thoughts.
As you know, we are still struggling to come up with a diagnosis. I don't seem to fit any one thing - rather have bits and pieces of various disorders - mostly of the autoimmune type.
I've had the lower back pain and right hip issues since childhood. I had some issues with my right hand and arm - with weakness - but it was much, much more subtle - no visible swelling - and it took a lot more than it does now for it to happen. I did have some significant muscle weakness in my legs before, but that could also be explained by the heart disease. Everything else has come on since after the heart attack and angioplasty.
Immediately following the angioplasty, I was started on the blood thinner Plavix. I started having an allergic reaction almost right away, but it started subtle and wasn't recognized. It started as an itch in the middle of my spine. It progressed to the hives, itching and swelling and the restless leg type symptoms with the back arching. I never had that until the Plavix. I also bled profusely on the Plavix. You bleed easier on blood thinners, but this was above and beyond. I would bleed through my clothes without even knowing I was injured. I still bleed easier - though not near as extreme. The purpura that I sometimes get when I scratch an itch is something else I never got before the Plavix.
Because the cardiologists I had at that time wouldn't take me off the Plavix, this reaction went on from mid-March until the end of April. I had to be on a blood thinner with 4 stents. They scared me into taking them. By the time I was off of them, my doctor at that time said the reaction went systemic. It took 3 steroid tapers to finally squash the reaction. 2 of them were after the drug was stopped.
Now, I did have the hemorrhage following angioplasty and I wasn't on Plavix then, but had been given Heparin.
Blood thinners can have some pretty scary adverse reactions that involve platelets that can be potentially life threatening. I didn't have that. My point in bringing that up is that it's not a benign drug. As with any drug, there are risks.
So, all of my other symptoms have come on since then. Previous symptoms are much, much worse. I would say at least 20 times worse. The restless leg and back arching thing has not gone away. I still get itchy from time to time. I've managed to take some skin off between my first and second knuckles on my right hand this evening from itching.
There is a thing called drug-induced lupus, but after the drug is stopped usually the lupus goes away.
I'm wondering if having this reaction for so long has caused a previous disposition to go haywire. If it caused my immune system or endocrine system to go haywire. And if so, can anything be done other than treat the symptoms? Just thoughts...
I just don't think it's a coincidence that things have happened the way they have. My issues before (other than the heart disease) have never been this debilitating and were only sometimes limiting.
I haven't been able to find much in terms of information. I've talked to my GP briefly about this and she didn't say much. I am going to talk to the rheumy about it at my next appointment.
If anyone has any thoughts on this, I'd be happy to hear them. Like I said, I am going to talk to the rheumy about this. But there is so much experience and knowledge on this board that I thought it would be nice to get some lay-person feedback.
TIA
As you know, we are still struggling to come up with a diagnosis. I don't seem to fit any one thing - rather have bits and pieces of various disorders - mostly of the autoimmune type.
I've had the lower back pain and right hip issues since childhood. I had some issues with my right hand and arm - with weakness - but it was much, much more subtle - no visible swelling - and it took a lot more than it does now for it to happen. I did have some significant muscle weakness in my legs before, but that could also be explained by the heart disease. Everything else has come on since after the heart attack and angioplasty.
Immediately following the angioplasty, I was started on the blood thinner Plavix. I started having an allergic reaction almost right away, but it started subtle and wasn't recognized. It started as an itch in the middle of my spine. It progressed to the hives, itching and swelling and the restless leg type symptoms with the back arching. I never had that until the Plavix. I also bled profusely on the Plavix. You bleed easier on blood thinners, but this was above and beyond. I would bleed through my clothes without even knowing I was injured. I still bleed easier - though not near as extreme. The purpura that I sometimes get when I scratch an itch is something else I never got before the Plavix.
Because the cardiologists I had at that time wouldn't take me off the Plavix, this reaction went on from mid-March until the end of April. I had to be on a blood thinner with 4 stents. They scared me into taking them. By the time I was off of them, my doctor at that time said the reaction went systemic. It took 3 steroid tapers to finally squash the reaction. 2 of them were after the drug was stopped.
Now, I did have the hemorrhage following angioplasty and I wasn't on Plavix then, but had been given Heparin.
Blood thinners can have some pretty scary adverse reactions that involve platelets that can be potentially life threatening. I didn't have that. My point in bringing that up is that it's not a benign drug. As with any drug, there are risks.
So, all of my other symptoms have come on since then. Previous symptoms are much, much worse. I would say at least 20 times worse. The restless leg and back arching thing has not gone away. I still get itchy from time to time. I've managed to take some skin off between my first and second knuckles on my right hand this evening from itching.
There is a thing called drug-induced lupus, but after the drug is stopped usually the lupus goes away.
I'm wondering if having this reaction for so long has caused a previous disposition to go haywire. If it caused my immune system or endocrine system to go haywire. And if so, can anything be done other than treat the symptoms? Just thoughts...
I just don't think it's a coincidence that things have happened the way they have. My issues before (other than the heart disease) have never been this debilitating and were only sometimes limiting.
I haven't been able to find much in terms of information. I've talked to my GP briefly about this and she didn't say much. I am going to talk to the rheumy about it at my next appointment.
If anyone has any thoughts on this, I'd be happy to hear them. Like I said, I am going to talk to the rheumy about this. But there is so much experience and knowledge on this board that I thought it would be nice to get some lay-person feedback.
TIA