Oral steroids made my symptoms much better

[Sarah Tee]

About a month ago, I was prescribed a short course of oral steroids (prednisolone) to put a stop to some bad allergic itching (just the "normal" kind, I don't have MCAS).

My orthostatic intolerance symptoms greatly improved. For example, I was able to stand and wait for several minutes outside a cafe, something I could never normally do. I also felt close to normal energy and went for a walk around the lake near my doctor's and could have kept going if my companion hadn't got tired.

I did have some side effects, but they were minor compared to how much better I felt without my OI symptoms.

At times during the day I felt completely normal for an hour or so, both while taking the steroids and in the weeks following. This was a very odd feeling for me. It was like a scratchy radio had suddenly been tuned to the right frequency, but that radio was my brain!

I often feel better late at night, but have felt unwell during the day for almost two decades, so this was very unusual.

I also had a previous experience having my symptoms resolve when taking hydrocortisone (although in that case the side effects were horrible).

New specialist refuses to comment except to say he wants to test my cortisol levels again, and do another synacthen test, which I refused because I've already been tested every which way for adrenal problems, nothing abnormal ever found.

I am now sure it is not just "anyone with fatigue might feel better on steroids" because it was very specific to my OI symptoms. It wasn't like when I tried stimulant medication, which felt more general.

Specialist reluctantly agreed to run auto-immune panel, although it's probably pretty basic. Am not having it done yet because I am sure the steroids could affect the results.

All very mysterious and frustrating and I just wanted to get it off my chest.

I really feel this must point to auto-immune involvement, especially as the positive effects have lingered after I finished the course (five days).

What does everyone think?

 

(I am diagnosed with "chronic OI", basically POTS without the T. Main symptoms are presyncope, fatigue, horrible drained feeling in face and head, and heat intolerance. 18 years' duration. Symptoms initially morning only, but gradually extending to longer and longer until now they last from morning until about 11pm each day. No lifestyle modifications or medications have worked so far. Running out of options.)

[MikeO]

1 hour ago, Sarah Tee said:

My orthostatic intolerance symptoms greatly improved. For example, I was able to stand and wait for several minutes outside a cafe, something I could never normally do. I also felt close to normal energy and went for a walk around the lake near my doctor's and could have kept going if my companion hadn't got tired.

I did have some side effects, but they were minor compared to how much better I felt without my OI symptoms.

At times during the day I felt completely normal for an hour or so, both while taking the steroids and in the weeks following. This was a very odd feeling for me. It was like a scratchy radio had suddenly been tuned to the right frequency, but that radio was my brain!

My understanding is that prednisone causes the body to retain fluid which raises blood pressure (sure the extra blood volume helps with OI). just a bit ago i went on the steroid and did see a noticeable increase in pressures. I did have to stop because of complications, but like you noted i did feel a boost in energy.

I am sorry you still have not found any treatment that helps with symptoms. Have you tried Midodrine? 

[Sarah Tee]

11 hours ago, MikeO said:

My understanding is that prednisone causes the body to retain fluid which raises blood pressure (sure the extra blood volume helps with OI). just a bit ago i went on the steroid and did see a noticeable increase in pressures. I did have to stop because of complications, but like you noted i did feel a boost in energy.

I am sorry you still have not found any treatment that helps with symptoms. Have you tried Midodrine? 

Yes, I thought that too about volume expansion. However, I checked and found out that corticosteroids such as prednisolone only have a small effect on blood volume compared to fludrocortisone. (Someone on another forum directed me to a chart that showed the various actions.) I have tried fludrocortisone very thoroughly twice with no improvement in my symptoms.

I have tried midodrine and it didn't help, unfortunately. I did get the goose bumps though :-)

Basically, I have now tried every drug that specialists here (Australia) will let me have and nothing has worked. I have also tried every non-drug intervention.

I am waiting to try IV saline, but, given that I haven't responded to any other volume expansion measures, I am not holding my breath.

It is odd that the only thing that has helped me is steroids for an allergy (and I don't have MCAS, just your common or garden allergies).

My GP thought it was interesting, but the specialist didn't.

Anyway, thanks for listening! It is hard trying to work out these things on one's own. I wish I could fly to the US and see one of the "top guys". Have got my lotto ticket in for next week ...

[Sarah Tee]

29 minutes ago, DysautonmiaMatt said:

Ask your doctor for a multi-sample saliva cortisol test over 24 hours which you do at home.  There is also a test that includes cortisol sampling but also includes other hormones - Dutch Urine. Your cortisol levels naturally could be higher late in the day or at night and could correspond to the way you feel.  An AM serum cortisol test will not reveal this info. Also advisable to get CBG/Transcortin tested along with serum cortisol.

What dose of Cortef were you taking at the time?  According to my Endo full replacement doses range from 10mg to 30mg, men needing more and should be paired with = mg amount of DHEA. Cortef is the bio-identical hormone for cortisol where Pred is a drug.  IF your dose was too high you will get side effects which could include sympathetic nervous system activation.  Has your aldosterone and renin ever been tested? 

Cortisol has been a dead end for me. I have been tested every which way for years and am always in the middle of the reference range.

Is Cortef hydrocortisone? It wasn't a replacement dose, because I've been shown not to be deficient. It was only a small dose, less than 10mg. The endocrinologist who gave it to me was unable to explain why he had done so, despite me asking him repeatedly, and I've come to believe it was a negligent action because of my normal test results and his lack of clarity. Anyway, I won't be taking it ever again!

I now have an excellent endocrinologist and she is satisfied nothing is wrong adrenal wise or in other endocrine areas. I trust her completely.

I just don't think the benefits I happen to get from corticosteroids are related to cortisol.

For example, it is now five weeks since I took the short course of oral prednisolone, and my symptoms are still improved from my usual baseline. But people with cortisol insufficiency have to replace every day, because cortisol gets broken down/used up by the body. It just doesn't fit.

I will ask for aldosterone and renin testing. I did ask a while ago but it never happened.

I am having a bit of a hard time with my new specialist. He ordered a bunch of tests without talking to me about them at the appointment. Many of them I had already had recently and multiple times over; others turned out to be useless because he didn't tell me what they were for.

Thanks for listening - this is all rather lonely and frustrating for me.

[Sarah Tee]

Just wanted to add that I have slightly high blood pressure, although only in the past five years, and my symptoms have been around for 18 years.

I don't get low blood pressure, even when I have presyncope or take an active stand test.

Also, the prednisolone did not appear to increase my blood pressure.

It did however let me feel well enough to go out ... to the dentist. Sigh. Wish I could have done something more exciting on my little "symptom holiday", but I didn't know for sure it was going to happen.

[Pistol]

18 minutes ago, Sarah Tee said:

It did however let me feel well enough to go out ... to the dentist. Sigh. Wish I could have done something more exciting on my little "symptom holiday", but I didn't know for sure it was going to happen.

I soooo can relate! I am sorry you are having no success with meds so far. This happened to me as well, but I am much more stable since receiving IV fluids twice a week. 

 

[Sarah Tee]

Thanks, @Pistol. My GP may be persuaded to let me take it for a week once a month, or once in three months. I don't know. She talked about how she looks after patients with severe asthma who take steroids on that kind of schedule.

Thanks for the info from the talk.

I will ask about vasopressin.

[Sarah Tee]

Thinking aloud a bit ...

Just searched to see whether corticosteroids have vaso dilatory or constrictive action, and there seem to be mentions either way, as well as references to inflammation, cytokines, peripheral vasoconstriction and vascular tone. Interesting, but well beyond my reading level.

But again, I can't see this effect lingering on after you have stopped taking them, unless there's also dampening of the auto-immune system involved. Sure, why not. We know that autonomic conditions are complicated.

[Sarah Tee]

1 hour ago, Pistol said:

I am much more stable since receiving IV fluids twice a week.

I am so glad to hear that.

I have been helping with a petition to improve access to IV fluids for dysautonomia patients in Australia because the situation is so confusing here - even when your specialist has ordered treatment it can be impossible to access.

My new chap seemed to think there would be no problem with me getting fluids at his old hospital, and told me at the last appt that it was all organised. I phoned the day unit today, and, sadly, it is not all organised 😞

The people I spoke to were very nice, and they are going to phone him, but I think he may have been a bit naive about how hard it is going to be.

[Pistol]

7 hours ago, Sarah Tee said:

I have been helping with a petition to improve access to IV fluids for dysautonomia patients in Australia because the situation is so confusing here - even when your specialist has ordered treatment it can be impossible to access.

Yes, I have signed that petition 😃!

[Sarah Tee]

So, I had a long talk to my endocrinologist about this situation. She has tested me pretty thoroughly in the past to see whether there was anything endocrine going on (before I got my dysautonomia diagnosis) and has treated me for 20 years for a minor unconnected endocrine condition. So she knows me pretty well and we have a good relationship.

She agreed that as the steroids produced a lingering positive effect it was worth considering an inflammatory/auto-immune angle. Her suggestion was to see a rheumatologist.

She also said that if my condition does have an auto-immune component, I would be much better off getting that identified and then taking a specific medication for that condition (if one is available) than taking steroids. She explained that often there are medications that are more specific and have less long-terms risks than steroids.

Her suggestion was to see a rheumatologist.

I agree with her that this is a good idea but I am not sure I want to get on another medical merry-go-round. The wait to see a rheumatologist could be long, I will have to travel two hours plus for my initial in-person appointment, and I may strike someone who has no interest in investigating. And even if they investigate I suspect they won't find anything. Whatever it is is just not really making itself felt generally yet, or is too specific to dysautonomia to be tested for for another however many years until they get that sorted out.

I was just looking through the reviews for rheumatologists in Melbourne and it was exhausting.

I think I will go on Facebook and ask on the Australian dysautonomia support group.

Can't quite remember why I started this post ... I think my point is that trying to find another specialist is exhausting and may be a waste of time but there is no way of knowing beforehand, which is annoying, and you all know this already!

...

Oh, but I think I'll ask for Sjogren's blood testing, because I suspect my mum had Sjogren's and it's worth a try.

[MikeO]

2 hours ago, Sarah Tee said:

I agree with her that this is a good idea but I am not sure I want to get on another medical merry-go-round.

Totally agree. I have been down the rabbit hole so many time just to come up empty. I just parted ways with my faint team as they were only focused on Cardio causes for falling and syncope even though they are supposedly aware of neuro issues and metabolism disorders that can cause the same problems i have. (((Grrr))) and then when the CGM and finger pricks showed my blood sugar was dropping really low 20-40 they became snotty about what was found.

At least now i have a plausible root to some of my episodes albeit not for my orthostatics but the pyridostigmine seems to help with this.

I do see my PCP in March and will ask him for some well placed blood tests.

 

 

[Sarah Tee]

@MikeO, I'm sorry to hear that. You would expect a faint team to cover all types and causes of fainting. Also, anyone medical should be interested and engaged when relevant new information comes up, not annoyed!

I hope your PCP will be more helpful.

[Sarah Tee]

Oh my goodness, have I just discovered something?

Quote

Prednisone decreases inflammation via suppression of the migration of polymorphonuclear leukocytes and reversing increased capillary permeability.

(emphasis added by me)

https://www.ncbi.nlm.nih.gov/books/NBK534809/

Does the prednisolone I took make me feel better because I am losing less fluid from my blood? (In another thread, I described how I responded to albumin infusions; hypothesis is that the albumin, which comes suspended in a liquid, allows my body to hold onto that extra liquid.)

(Prednisolone and prednisone end up the same in the body, if I have it right, with prednisone being converted to prednisolone.)

Have to read this article this evening when my brain is working better!

[MikeO]

13 hours ago, Sarah Tee said:

Oh my goodness, have I just discovered something?

(emphasis added by me)

https://www.ncbi.nlm.nih.gov/books/NBK534809/

Does the prednisolone I took make me feel better because I am losing less fluid from my blood? (In another thread, I described how I responded to albumin infusions; hypothesis is that the albumin, which comes suspended in a liquid, allows my body to hold onto that extra liquid.)

(Prednisolone and prednisone end up the same in the body, if I have it right, with prednisone being converted to prednisolone.)

Have to read this article this evening when my brain is working better!

I know when i have taken prednisone in the past my blood pressure went up noticeably. Not sure if this help but was my observation.

[MikeO]

16 hours ago, Sarah Tee said:

@MikeO, I'm sorry to hear that. You would expect a faint team to cover all types and causes of fainting. Also, anyone medical should be interested and engaged when relevant new information comes up, not annoyed!

I hope your PCP will be more helpful.

This has been annoying for me for sure. Should have had a clue that the faint and fall clinic was not working out is when i had a serious syncope event last January and ended bleeding out on the basement floor (@Pistol should remember this one).. One would think more testing would have been indicated but they chose not to do anything.

So far i have gotten a handle on my orthostatics thanks to the help from the folks at Dinet but syncope still had eluded me as to why. Finding recently that i get hypoglycemic (and at times is very low) for me is a plausible reason for my episodes.

My PCP has been great and to be honest i think he was relying on the faint clinic to handle my syncope issues. I am sure we will have something to talk about in March.

My Cardiologists nurse probably said it right is that the faint clinic left me with more questions than answers.

I did leave almost 2 yrs (frequent notes) on MyChart sure someone at some point will be interested.   

[Birdlady]

I personally would think it is alleviating inflammation in the body. Just my opinion of course.  Long term steroids are not good though. They do a lot of harm with glucose levels, bone health and immune function. 

[Garden Gal]

Well i can relate on multiple levels. Except for I have been able to have some help with meds. I'm so sorry you have not.

I as well feel notably better on prednisone and have wondered at the specifics of that. i have an ongoing interest in vascular permeability kuz it sure seems to be a key in what's going on, so that article is of interest to me.  Specifically I suspect that vascular inflammation due to autoimmune hypersensitivity causing vascular permeability may be key to so very many symptoms categorized under dysautonomia. Could it be that the same underlying autoimmune hypersensitivity is effecting both neurology causing dis-regulation AND vascular inflammatory problems compounding the issue? And in my case I suspect that the immune hypersensitivity is not an autoimmune disorder per say, but a result of the many diet and environmental factors that are a reality in today's world... Those are my musings. Would love to hear more of your thoughts on that if they are along the lines of your reality.

Aaaaanyway, I digress. I don't know if it would be helpful, but I thought I'd mention this: I have chronic sinus problems. I think some is infections, and some likely vascular permeability touched on above... But about 8 months ago my ENT started me on Azelastine. I feel like I do when I'm on Prednisone! Without the negative agitation, etc. It's like the pressure, brain fog, out of it etc is just improved. Maybe i'm just on a good run on the health front, that happens sometimes, but I suspect the Azelastine has a big part in it. I could take Fluticasone nasal spray because it messed with my heart rhythm.... but this seems to be working for me. In the US it's over the counter, so I just thought I'd throw it out there in case it made a difference for you. I'm on a cocktail of other meds that have been of great help to me, this one seemed related to whatever happens in my body when I'm on prednisone.

Best of luck, GardenGal

[Sarah Tee]

@Garden Gal, I’m so sorry, I didn’t see your response until just now. Funnily enough, I have come to the same idea about vascular permeability and inflammation.

I have ulcerative colitis, which is widely suspected to have an auto component, although nobody has managed to prove it yet. And having one condition in that area makes it likely to have more.

I will have a look at Azelastine. I have allergic rhinitis and have tried quite a few things for it and can’t quite remember them all! It seems to be by prescription here in Australia, but I am sure my GP will let me try it as my allergies are bad at the moment.

Thank you for your thoughts and suggestions.

[Sarah Tee]

@Birdlady, I’m sorry, I didn’t see your response until just now. In the meantime I have come to the conclusion that inflammation (and possibly vascular permeability and low blood volume caused by it) are at work.

I have been pondering what to do. I do not want to take steroids long term at this point because the risks and side effects outweigh the benefits.

One thought I have had is asking to take them for a shorter period in the hope of putting myself into some kind of remission. I did notice that, after the week of taking prednisolone, the reduction in my OI symptoms persisted for several months. I gradually got worse again until finally returning to my usual state of unwellness about three months later.

I am going to talk it all over with my specialist and GP at the end of this month.

[RecipeForDisaster]

I’m inadvertently trying this now - I have aseptic meningitis from IVIG, and was prescribed oral steroids for it (plus the IV pretreatment I always get). We’ll see what it helps! I’m starting with 10mg prednisone, which is probably not enough. I can take 20mg.

[Pistol]

@Garden Gal @Sarah Tee Regarding vascualr permeability affected by high inflammation markers: In September I was hospitalized with COVID with high inflammation markers and was placed on oral steroids. When I stopped the steroids I developed extreme swelling and pain in my ankles that was determined to be responsive arthritis. Then I developed sepsis and my inflammation markers shot up through the roof. The swelling in the legs went down after the sepsis was fixed with antibiotics but then I developed a rare autoimmune vasculitis in my legs that looked like fire ants had eaten my legs. I was under the care of a rheumatologist who eventually was able to treat the infections and then the inflammation slowly dissappeared. So - yes, inflammation definitely has an effect on vascualr permeability!

[Jyoti]

5 hours ago, RecipeForDisaster said:

I’m inadvertently trying this now - I have aseptic meningitis from IVIG

That sucks!   I mean...I hope the prednisone makes a difference and the meningitis is very quick to exit.  My goodness---take good care.

I was thinking about both the anti-inflammatory and vascular-tightening effects of steroids and thought I'd see if there was anything out there without the same side effects that might accomplish something similar.  I found this --think I will do some more exploring.  It is just too impossible to consider that there is something that improves things dramatically and yet can't be taken advantage of.  I will post if I decide to try this combo.

Looks like the CE (one component of the above described cocktail) is amazing.  It seems to do everything; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116297/   But guess what?  It could build up toxicity if taken for more than six weeks straight.  So.... same kind of problem.  I'm not defeated, though.  There's got to be something!

[RecipeForDisaster]

7 hours ago, Jyoti said:

That sucks!   I mean...I hope the prednisone makes a difference and the meningitis is very quick to exit.  My goodness---take good care.

I was thinking about both the anti-inflammatory and vascular-tightening effects of steroids and thought I'd see if there was anything out there without the same side effects that might accomplish something similar.  I found this --think I will do some more exploring.  It is just too impossible to consider that there is something that improves things dramatically and yet can't be taken advantage of.  I will post if I decide to try this combo.

Looks like the CE (one component of the above described cocktail) is amazing.  It seems to do everything; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116297/   But guess what?  It could build up toxicity if taken for more than six weeks straight.  So.... same kind of problem.  I'm not defeated, though.  There's got to be something!

My neurologist cheerfully told me "you’ll get aseptic meningitis every time now". I thought we had a regimen figured out (first time with this product, with a rest day between treatment day, tons of hydration, and still with IV premeds), but this time, it just hit me a little later and maybe a bit less badly. I haven’t tried oral steroids for it before, but the longest it’s lasted without them has been a week. 
 

I think my dysautonomia/low BP feels better, but I’m so sleep deprived (up since 2:30am), it’s hard to tell. Hopefully tomorrow will be a clearer day. If it does work, good luck to me convincing people I need steroids for this! 

 

That is a very interesting herb. I think I researched it before. I hope it’s the magic bullet we are hoping for!

[Garden Gal]

On 2/12/2023 at 1:21 AM, Pistol said:

@Garden Gal @Sarah Tee Regarding vascualr permeability affected by high inflammation markers: In September I was hospitalized with COVID with high inflammation markers and was placed on oral steroids. When I stopped the steroids I developed extreme swelling and pain in my ankles that was determined to be responsive arthritis. Then I developed sepsis and my inflammation markers shot up through the roof. The swelling in the legs went down after the sepsis was fixed with antibiotics but then I developed a rare autoimmune vasculitis in my legs that looked like fire ants had eaten my legs. I was under the care of a rheumatologist who eventually was able to treat the infections and then the inflammation slowly dissappeared. So - yes, inflammation definitely has an effect on vascualr permeability!

O my goodness Pistol! What a ride! I'm so sorry