January 3, 2014 at 5:22 pm #633
Does anyone know anything about a relationship between cortisone shots and flaring of POTS? My POTS was slowly getting better where I was able to do more. I have been having a lot of ankle troubles and the specialist gave me a cortisone shot in each ankle. Now the POTS is ruling my life again. I am almost positive the cortisone caused the POTS to flare. Anyone k ow anything or the same thing happen to them?January 3, 2014 at 8:10 pm #4684BarbaraParticipant
I was recently given an overnight low dose of Dexamethasone (it’s a corticosteroid) and I felt terrible the next day, the endocrinologist was surprised that it had had that effect.
(UK)January 5, 2014 at 10:02 pm #4696
I heard this with another patient, and we were chatting about whether it was the condition that caused her to receive the steroid, or was it the steroid itself that caused the problems? I will tell you that I have chronic candida and chronically high antibody titers to CMV and EBV (viruses). I had a cortisone shot in my shoulder and I was sick for 6 weeks! I wonder if some of us have borderline immune function issues, and cortisone is too much for us, causing a surge in our infections (and an igniting of the inflammatory cascade) causing vascular damage and POTS flares. I kinda’ sorta’ think that is what happens to me! 😉 I’m curious, too, if others have experienced this… Thanks for bringing up the question! 😉January 8, 2014 at 8:03 pm #4708
Thank you both for responding!
I was doing quite a bit better after the zantac/zyterx and was to the point I could get to my home office upstairs without getting short of breath. About 2 days after the shots (1 in each ankle) my symptoms exploded. I don’t have the energy to even leave the house, let alone go upstairs to my office. My heart rate is erratic, I have constant headaches and nausea. I think I had mild POTS since I was 16 (now 46) but for the most part I was functioning fairly well. Then a couple of years ago I started getting a lot of injuries with ligament tears and ended up getting a lot of shots. I don’t remember the shots doing much then, but last Jan. I was getting a huge number of shots (2-3 every visit) due to a bad ankle injury that wasn’t healing. I am pretty sure that is where my decline began. By April I was incapacitated for the most part. I was just starting to get some semblance of a life back then a couple of weeks ago I got 2 shots and feel like my symptoms are out of control again. I will be weighing very heavily the pros and cons of corticosteroids next time. I think I would much rather deal with the pain.January 8, 2014 at 8:26 pm #4709
What do you mean by borderline immune problems? Is there a certain problem you were referring? Just trying to “connect my dots” 🙂
I have to admit I was wondering if the shot set off inflammation throughout my body because it seems I pain a lot more pain in other places like both shoulders, both hips, my neck and my thumbs. I am happy to report though that the pain in my ankles is much better though! Very strange.January 9, 2014 at 12:50 pm #4716
Borderline immune issues can mean a lot of things, but I hear about low NK cells and neutropenia, which can be a problem. I’m seeing an immunologist right now to see if I may have something weird causing my poor response to steroids. Sometimes I wonder if we suppress too much inflammation!Some inflammation is necessary for healing and creating scar tissue (fibrosis). But run-away inflammation is tissue damaging. It’s a fine line to walk! 😉February 4, 2014 at 12:06 am #4846dino68Participant
I do not tolerate the steroids either. The first time I took a steroid shot 20 years ago for allergies I felt great, helped all of my symptoms for a few months and then 4 months later I took the same medicine with same dose and ended up in the hospital with a major flare of the dysautonomia. Just last week I tried to take a steroid taper for dizziness and by the second day I was having vertigo so no more steroids for me.March 4, 2014 at 9:21 pm #4921BarbaraParticipant
Just come across another post, from Vincent on 10th Aug 2013, where he mentions that a shot of cortisone worsened some of his symptoms.March 28, 2014 at 4:03 am #4950SpacehoppaParticipant
I think I may have found my smoking gun guys, for why the prednisolone (steroids) I had been taking for the past ten years eventually made me much sicker and allergic neurologically….
“Mast cell analysis revealed that prednisolone produced a marked mastocytosis, with an approximate 10-fold increase in tissue mast cell numbers both in digits and knee tissue samples.”March 29, 2014 at 12:16 am #4951dino68Participant
That is interesting since I have had such a bad reaction to steroids the last few times I have tried to take them and the first time I took them I felt great. I do not know if I have MCAD but I do have POTS and EDS.March 29, 2014 at 7:23 pm #4952
I’ve had both good and bad reactions to steroids! I’ve had two steroid shots in my shoulder, and after the first one put me in bed for six weeks, I asked the doctor to “think low” for the dose on the next shot. He gave me the dose he would give a diabetic (low), and I did fine. I, too, have heard from others who were sickened by steroids, but many of us have primary or secondary Addisons disease REQUIRING steroids. Yikes. My gut feeling, after my experience with different dosages, is to stay as low as possible, but when you need it, you need it. I guess that is the case with most everything we take, isn’t it? 😉 I do not think I had a mast cell reaction to the steroid, though. I *think* it allowed those pesky viruses to rear their ugly heads again — and it probably didn’t help candida, either. Big hug…March 30, 2014 at 11:59 am #4955SpacehoppaParticipant
The reason I posted that – sorry it was so vague, I was in a rush that day – was because I have ED and rheumatoid arthritis and I have been taking steroids for the past ten years straight, both oral and injected.
At first I tolerated them okay, but within a short time, each time I took my steroids in the morning I would have an attack of extreme fatigue, joint inflammation worsening, brain fog, etc, so that I would be completely incapacitated and unable to leave the house. (This was especially true on days when estrogen is high in my cycle. I’ll post more about that another time.)
Eventually my reaction to steroids became more or anaphylactic when combined with high estrogen at ovulation and before my period. I twitched involuntarily, my tachycardia worsened, my head would drop onto my chest, I couldn’t speak for a few minutes and at my worst I was gasping for breath.
The last steroid injection I had about two years ago nearly finished me off. It gave me violent diarrhoea for two weeks and a tonne of extra pressure in my head (some of it pushing on the back of my eye alarmingly) and dementia like brain fog, arthritis flare and fatigue. Basically a degranulation attack.
I finally got to the point where even 1mg prednisolone would send me into shock, so I had to wean off them in the end. This was a problem as I had been taking them morning and night for 10 years, so I was very adrenally suppressed. The change that I made that finally enabled me to stop the steroids is to supplement a *lot* of bioidentical progesterone. By a lot I mean 100-300mg a day for a while – pregnancy amounts basically.
I had become terribly estrogen dominant and this lack of progesterone meant a lack of cortisol further down the line – as cortisol is made from progesterone.
Progesterone is a stress handling hormone (it makes us feel wonderfully serene during pregnancy, particularly when it is very dominant at the end). So progesterone takes on some of the functions of cortisol which meant I didn’t go into adrenal crisis every few minutes whilst weaning off them.
Anyhow, I always wondered *how* steroids made my illness worse and I think knowing that it was actually increasing mast cell populations in my joints and organs all that time really explains it for me. The steroids increased the mast cells, and my estrogen degranulated them (my main triggers are estrogen, bacterial endotoxin and histamine itself).
I would find that a steroid injection would trigger a huge mast cell degranulation at first, then work for a while, and then once it had worn off I would have a huge rebound flare of all symptoms – inflammatory and neurological. I believe this is because of the increased population of mast cells, coupled with the sudden withdrawal of immune suppression.
Once those mast cells had died off, you get back to an even keel again, but it usually takes 1-3 months. Sorry for the brain spill!
ruthApril 20, 2014 at 3:00 am #4985EDS99Participant
Interesting about cortisone. I could never get the benefit of inhaled steroids (nose or lung). They would help a little, then I would plateau and by day 9,10 or 11, I was sick with an infection. IV steroids made me a mad lady once…. And very ill… which caused them to be stopped. So let’s just say I do all I can to avoids steroids. 🙂
I did want to say something about candida. About 9 months after being treated for Mast Cell issues I started in with a nasty nasal passage problem. It’s gross but I need to describe it because everyone thinks it is just a runny nose. I had a drip that was like super glue….. Not kidding. It would harden painfully. And the nasal tissue was inflammed….I could feel the blood pulsing through the skin. Sometimes my nose was so sensitive, any touch to my nose would make me wince (or ‘yip’ like a dog in pain). My allergists tried to tell me it was allergies. Duh…had them all my life and they were NEVER like this. It wasn’t humidity, histamines, etc. it ruled that out by changing the environment or with meds. Saline washes did not work either.
Well, it is now gone and do you know what did it (this us directed towards you Diana). Berberine and heavy duty probiotics. I began to see that mega dosing pro-biotics before bed helped my nise somewhat. So that is when I treated myself with berberine. Within a few weeks it was all gone. PRAISE THE LORD!!!!!! I just could not stand my nose anymore!
I truly believe that I had a fungal issue. I also saw a skin issue clear up as well as the common candida issue we women have.
So that is it. Berberine…. besides having anti-fungal properties….. does wonderful things in the gut. It has been researched and is as effective as metformin…..and that’s just one thing. It is really nice for gap junctions.
But please do work with your MD and ALWAYS consider your other meds ….. and always buy quality. Consumer labs usually is a good source for recommendations on the quality of supplements .
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