ramakentesh Posted January 12, 2012 Report Share Posted January 12, 2012 Just curious - over the years people have told me that they have had a significant improvement while on Prednisone - usually for another co-existent condition.Anyone noticed this?? Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 12, 2012 Report Share Posted January 12, 2012 I've done a Medrol (prednisone) burst twice this (past) year. One time for a 6 day migraine that had also caused a flare of dysauto symptoms. It was an overnight miracle drug, literally. Couldn't believe the difference between one day and the next. (Could barely walk across my room one day because I was so SOB, weak, shaking, etc) and was able to work a 9 hour day the next day.Did another one in the fall after a 2 month relapse of symptoms. It was not nearly the overnight miracle drug it was the first time, but maybe because I'd been in a flare for a lot longer? Anyway, it definitely helped but much slower and then I think I really overdid it about 2 weeks later and had another big flare.My neuro thinks the fact that it's been helpful provides more evidence to the whole "autoimmune" argument but since my other autoimmune factors are normal it's hard for him to prove that. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 12, 2012 Report Share Posted January 12, 2012 I have taken methylprednisolone and oral predinsone packs over the years. It seemed that when i took it after what i now know was a pots flare up 3 years ago it helped. But now that i know what i have, it was probably more likely the urinary retention i.e. bloating that steriods cause that helped and not the actual steroid itself (thus flornief is probably more effective). The flare up that i am currently on began on october of 2010 and was the reason i was finally diagnosed. Since this time i have had two oral prednisone steroid packs. And also was given three bags of intravenous methylprednisolone. The intravenous doses were given in june and they made me much worse. However, i have noticed that my activity capabilites have been improving slowly, so don't know if its related to the steriods or just a good couple of weeks. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 12, 2012 Report Share Posted January 12, 2012 They gave me burst of energy I havent had in years... but I notice if I take it for more then 10 days I crash very bad. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 12, 2012 Report Share Posted January 12, 2012 My POTS started ON steroids. I'm trying to slowly taper off steroids now. I'll let you know if it gets worse. It's been a real struggle Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2012 Report Share Posted January 12, 2012 I'm starting the 3rd day of the medrol pack. So far, I don't hurt so bad and I can stay standing for longer. I do however, HAVE a headache on them. I also seem to be having a sort of sinus thing happening with conjestion. Did this happen with any others on it? Doctor thinks my autoimmune issues have thrown me into a flare and I was almost in the desperate stage. So, decided to give it a try. Hoping that it will help in the long run. Can't say that it's been a miracle - but, hoping that things will improve. I have started getting the puffy, fluid face already. I'm super sensitive to meds, so we will see what happens. I'm also having a very red face and it's hot to the touch. Is this a normal response?Issie Quote Link to comment Share on other sites More sharing options...
kluesyk Posted January 12, 2012 Report Share Posted January 12, 2012 I am greatly improved after a steriod shot. It is like night and day. I suspect I have an autoimmune cause for my POTS just not figured it out yet.I already take a high dose 40mg of hydrocortisone to replace the missing due to Adrenal failure, but I still require more (1mg of Medrol-longer acting) to remain stable and not have an adrenal crisis. The only time I feel somewhat normal is after a steriod shot of kenalog/celestone....usually will give me 2 1/2 weeks, but unfortunately I can't do that very often due to side effects. Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2012 Report Share Posted January 12, 2012 I wonder if that's what's got me in the crash. I had been having kenalog injections into alopecia spot and this is the first month after 5 that I haven't had it. Hum? Now you got me thinking. I don't think it was very potent though - he said it wasn't more than what our bodies daily produce. So, that's probably not it. It did however, start my hair to growing back in - from no hair at all, 3 inch spot, to the prettiest white hair you've ever seen. They said it is probably white due to my vitiligo and there is a connection between vitiligo and alopecia and both are autoimmune related. Both of these things attack the pigment color of the skin and hair.Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 12, 2012 Report Share Posted January 12, 2012 A prednisone shot, given while on vacation, gave my son tremendous relief. He was having severe chest and back pain, worst of his life, and the shot calmed everything down within 30 minutes.Christy Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 12, 2012 Report Share Posted January 12, 2012 It helped my dizziness/eye focus problems, but shortly after being on it, heart symptoms started so I was afraid to continue. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 12, 2012 Report Share Posted January 12, 2012 When this all started (and before we knew anyhting about POTS) I was given 4 wks of prednisone for severe tendonitis that had developed in both of my hands and shoulders plus they thought it would help my unexplained pain in all of my joints. I was in really bad shape back then and I know that I had tremendous relief. But, I can't say for sure that my "POTS symptoms" were helped or not. I was in soooo much pain in every joint in my body that getting relief from the pain seemed like a miracle. I definitely was still sick in other ways especially my GI issues which were in a constant flare back then. I know none of my symptoms felt worse on them. Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2012 Report Share Posted January 12, 2012 Well, day three of the steroids and I don't feel so hot. I'm more tired than ever and my heart rate is up more. My blood pressure is staying more stable - not so drastic swings - but still very high. I know, it's not helping my POTS stuff - but maybe it's helping the autoimmune stuff. I have started on the taper down and have to finish it. So, we'll see what the results are. Right now, not thinking I'd do this again.Issie Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 13, 2012 Report Share Posted January 13, 2012 TREMENDOUS relief. Shots make me feel like Super Woman When my MCAD was really bad, I was repeatedly put on the short term prednisone packs that wean you down. They always helped...at first. Then I started to feel really bad...couldn't sleep, sweated a lot, felt like the manic side of a bi-polar swing, etc. Also, no matter how carefully I was weaned down the end was poo. I felt awful Quote Link to comment Share on other sites More sharing options...
jangle Posted January 13, 2012 Report Share Posted January 13, 2012 I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less.I'm sorry . . . .WHAT???? Can you explain this a little better.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 I agree that it is likely autoimmune:It waxes and wanes (like most autoimmune illnesses)it is worsened by stress (like autoimmunity)It has a higher portion of female sufferers (like MOST autoimmune illnesses)The onset is often abrupt and after a stressore (like most autoimmune illnesses)The onset can occur post child birth (again, like most autoimmune illnesses)Mys. Gravis gets worse at night apparently, as does my AS at times. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 13, 2012 Report Share Posted January 13, 2012 I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less.I'm sorry . . . .WHAT???? Can you explain this a little better.IssieCertainly!I read a study that showed people with POTS are worse in the morning and better off at night.http://www.ncbi.nlm....pubmed/21751966I feel much better now than I did this morning.I can't remember where I read about sunlight and autoimmune disorders. I do remember that sunlight can bring on autoimmune symptoms in certain conditions.Because POTS also is made worse in daylight hours I speculate that this is happening because it is being caused by one of the autoimmune disorders that's sensitive to daylight.EDIT: rama also listed trends that suggest autoimmune as well.All these things taken together strongly suggest an autoimmune involvement. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Thanks Jangle for the explanation . . . I've never heard that about the night thing and autoimmune. Interesting. I know, I can't sleep at night and have a burst of energy around 9:00 and can't go to bed until around 3:00. May be something to it. I do feel better at night. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 check this out - i developed POTS on 20 October 2003. I developed Ank Spond within 4 weeks. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 13, 2012 Report Share Posted January 13, 2012 The reason I started my ANA thread a while ago was I was trying to see if there was some sort of consistent autoimmune condition in us.From the informal survey it seemed the majority had a speckled ANA pattern, although some were negative and some had different patterns.Perhaps there's a specific auto-antibody that targets our autonomic nervous system. They find it, find a cure for it, badda bing badda boom we're cured! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 They have found autoantibodies against acetylcholine muscarinic or receptors in the autonomic ganglia in a small percentage of POTS patients.For a while they were looking for autoantibodies against NET protein as well because many POTSies have reduced NE reuptake and some have reduced peripheral NET in their forearm veins and in their heart.Other potential autoantibodies that were being investigated were against beta 2 receptors, beta 1 receptors (which were found in a small portion of patients - data yet to be published) and perhaps angiotensin AT-1 and alpha a1.Autoantibodies can activate, destroy or block receptors and in some conditions there has been great success with treatments that reduce antibodies such as IVIG and in medications that suppress the immune system.A simple and often overlooked way to ascertain whether an autoimmune process is present is plasma exchange. before they found the antibodies involved in MG they stuck a patient's plasma into some poor rabbits and gave them all MG. Alternatively some conditions are presumed to be autoimmune based on responses to medications like TNF alpha blockers (for innate immune cytokine disregulation) or perhaps CFS with the positive results from Ritiximab. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 13, 2012 Report Share Posted January 13, 2012 With hyperadrenergic POTS, even very short-term steroid use has always made my cardiac symptoms worse.Since developing MCAD, I've had trouble tolerating even the tapered pack (took it for 2 days, and then doc told me it was OK to quit the taper because I seemed to be reacting to it).And my POTS symptoms have always been worse at night than in the day - - remember, POTS isn't a single entity, but rather a symptom of multiple underlying causes. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 Some doctors dont actually accept hyperadrenergic POTS as a separate delineation. Perhaps a better way to catagorise POTS is by peripheral blood flow or reflex versus autonomic tachycardia. But there seems to be consensus from most research groups that there are potentially many etiologies that can cause POTS. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Carol, commented on your statement in another post - brain fog tonight - yeah, this steroid thing has not been good for me. Having palpatations right now and have the shakes and a dizziness, naseau and my face is blood red and swollen. Not liking it. There has to be another way to treat autoimmune things. This is not for me. Can't wait to be done with this taper. Not something I plan to do again. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted January 13, 2012 Report Share Posted January 13, 2012 I do terrible on the steriod pack...can't take prednisone at all, (I can tolerate a small amount of medrol-it bypasses the liver) but strangely I do amazingly well on a kenalog/celestone shot in my hip. I definately think my POTS is tied to autoimmunity. Esp since 20 years ago I had a three year episode of high ANA, sed rate and was diagnosed with mixed connective tissue disease(current ANA is neg now) and also currently have autoimmune antibodies to my thyroid, too. Just my opinion due to the amazing relief for 2 1/2 weeks after the shot. I just need to figure out a way to regulate my crazy immune system without the steriod shot.....I know eventually the side effects will be worse. Quote Link to comment Share on other sites More sharing options...
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