Kris4444 Posted January 5, 2016 Report Share Posted January 5, 2016 Hi,I was recently diagnosed with a double whammy of lupus and autoimmune hepatitis and put on high doses of prednisone. They started me on 40 mgs and I'm currently on 30 mgs. I'm having what my doctor says are "normal" side effects, shaking, sweating, muscle spasms in my hands that curl my fingers into my palms. When I exercise, even lightly, I get terrible vertigo/dizziness which make me feel like what is happening is surreal. I sweat through my clothes from light exercise and become very flushed. My blood pressure has been high 156/106 but no one seems concerned. I have insomnia. This just really *****.Is there anything I can do to counter these symptoms? My doctor has told me that I will just have to live with them and as we continue to lower my dose of prednisone, hopefully they will get better. The problem is that they plan to have me on the pred for a long time and take their time weaning me off of it and onto Imuran. I don't know much about Imuran either so if anyone has experienced taking this drug I'd love to hear how it worked for you.Thanks!-Kris Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 5, 2016 Report Share Posted January 5, 2016 Your fingers curling up into your hands sound like a carpopedal spasm to me. Usually that is from low calcium. Maybe try upping your calcium to see if that helps that symptom?? I can't imagine why they are not concerned with your blood pressure! Do you have another doctor you can ask?I HATE steroids, and most likely would have all those symptoms, too! I haven't taken them in about 15 years because of the adverse reactions I get. I hope it goes away quickly for you! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 5, 2016 Author Report Share Posted January 5, 2016 I've had spasms in my feet and legs before but never my hands. It's definitely from the pred. I've read low potassium can cause that too. I know they recently ran a panel to check vitamin D. Not sure if they checked calcium or potassium, it hasn't come back yet.I need to call my primary doctor to discuss the blood pressure. Quote Link to comment Share on other sites More sharing options...
Faye Posted January 6, 2016 Report Share Posted January 6, 2016 Before being diagnosed with POTS, I was on like 20mg, no idea what my pressure was, about a year ago, and my heart rate laying flat was 130, felt dizzy, couldn't take it went to ER, and they said prednisone my body can not tolerate it and that was two days into taking it... The pressure and your hands, sounds like your body is not liking it, I hope you can get a second opinion...and get to feeling better... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 6, 2016 Author Report Share Posted January 6, 2016 My doctor told me that these are pretty typical side effects to prednisone. He also said my dysautonomia symptoms would get worse. I have no choice but to take the drug for now. Waiting on a genetic test to come back that will give me to ok to start the Imuran. Once on that I will be able to start weaning off the pred. I will know more tomorrow after my doctors appointment. Quote Link to comment Share on other sites More sharing options...
corina Posted January 6, 2016 Report Share Posted January 6, 2016 Sending good thoughts Kris! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 7, 2016 Author Report Share Posted January 7, 2016 Thanks Corina! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 7, 2016 Report Share Posted January 7, 2016 Sorry KrisHope you can come off of it soon. Tyler's doctor tried him on a low dosage 2 years ago and it was horrible. Symptoms were so much worse. I have heard of the other medication but don't know anything about it. Have you tried the Low Dose Naltrexone? It helps with RA, fibromyalgia and symptoms of other autoimmune disease. It does not suppress your immune system. Tyler is on this and all his chroinc pain and headache is gone. I went on it a few months ago for pain issues and found out that I had fibromyalgia with a high ANA. It's help me with pain issues. Don't know if LDN would help but thought I would mention it to you. BTW the LDN has not lower or affected Tyler blood pressures. In fact his blood pressures seem to be more stable since he started this medication. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 10, 2016 Author Report Share Posted January 10, 2016 I haven't heard of that drug looneymom. I will ask my doctor about it. They are starting me on Imuran on Monday and then we get to start weaning down on the pred again. I'm a little nervous about starting another med that suppresses the immune system but I guess I don't really have a choice with all that is going on right now. I'm glad you guys found something that has helped! Quote Link to comment Share on other sites More sharing options...
DottyB53 Posted January 10, 2016 Report Share Posted January 10, 2016 Hi Kris, I have had POTs forever, been a longtime member but seldom visit here any more. I aquired an autoimmune disorder almost three years ago have been taking prednisone almost that long at low doses. All I can can is that it's awful, it makes autonomic symptoms worse. I was also told by one of the experts office that autoimmune disorders will make pots worse, and believe me that is the case. I stand and my legs are so weak standing in line............ugh. I feel you pain but have no answers.Dotty Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 10, 2016 Author Report Share Posted January 10, 2016 Thanks Dotty. I hate the shaking/tremors. I get very sweaty and flushed and simple things like making dinner now exhaust me. I'm looking forward to getting of this drug. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 10, 2016 Report Share Posted January 10, 2016 KrisNot all doctors know about Low Dose Naltrexone. If you are interested in trying this medication, I would recommend that you call your local compounding pharamcy and find out what doctors will prescribe it. It will regulate your immune system. There is an article online in PDF form called Low Dose Naltrexone for Normalizing Immune System written by Bernard Bihari MD. He was the first doctor to discover the benefits of this medication and use it with patients that had different autoimmune diseases. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 10, 2016 Author Report Share Posted January 10, 2016 Thanks looneymom but I don't see a link. Quote Link to comment Share on other sites More sharing options...
DottyB53 Posted January 12, 2016 Report Share Posted January 12, 2016 Since being on low dose prednisone when I stand I can't stay still. I have to move to remain upright. Anyone with any thoughts on this one?Thanks! Quote Link to comment Share on other sites More sharing options...
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