Prednisolone advice
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Hi
I was put on prednisolone for brain inflammation due to a probable autoimmune disorder. In January I left hospital with a plan of 40mg a day tapering 5mg a day until 20mg. At 20mg I stayed until I had a review with neurologist on 23rd Feb.. They come up with a plan to drop 5mg a month until off. 15mg went fine. I dropped to 10mg on 21st march. Went OK .. Last week I left the house not realising I only had 5mg on me. I took that and planned on having the other when I got home but by this time it was 8hrs later and I felt awful. 5 days later I'm still recovering with severe fatigue being the main issue. I've taken the pred as normal for the last 5 days and although I have improved Ive gone from moderately active to almost being able to for nothing. Am I tapering too fast? Is dropping from 10to5 in 3 weeks and the 5-0 a month after doable. I'm desperate to get off them because they are affecting my daily life. I've been lucky in that my only side effects have been brain fog, short term memory loss and fatigue. All of which have got a fair bit worse since the mishap with the one day of taking half the dose late. Apologies for the long post and I hope it make sense.
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paul18501
Posted
EileenH paul18501
Posted
At 10mg you SHOULDN'T have an adrenal insufficiency problem. However - what you describe is very typical of steroid withdrawal rheumatism and that tends to appear as soon as you cut the dose your body expects. I am a bit surprised you haven't recovered better having gone back to 10mg.
On the other hand - what sort of autoimmune disorder? (I don't need to know, just airing the question). Most a/i disorders are chronic and if they are causing inflammation of any sort that is an on-going problem. Possibly, although the initial pred dose removed all the inflammation that was being created, you have gone to slightly too low a dose to keep it suppressed and it is starting to have an effect again, the mistake with the dose let it flare more. Fatigue and brain fog/memory issues are absolutely typical of very many a/i disorders - and the pred doesn't change the real underlying disorder, it just manages the symptoms until the a/i burns out and goes into remission (if it is going to). It might not be the medication, it may be the illness.
And I DO think that reducing in 5mg steps all the way to zero can be a bit fast for comfort after 3 months at high doses. Three months at above 10mg will have reduced adrenal function and in some people it is a slower to settle than others. 2.5mg at a time would be better in terms of comfort perhaps and theoretically would be fine for most people. But everyone is different - and maybe it is too much for you.
What I really DO think is essential is a report to your neurology team and see what they say.
paul18501 EileenH
Posted
Hi EileenH
Thank you for the reply.. Their rough route for the autoimmune disorder is MS or neurosarcoids .. But all tests are coming back negative. I only developed the brain fog and fatigue after starting the pred. Before this I spent 2 months in hospital without it and my brain functioned perfectly. I felt completely normal. I just couldn't talk due to a paralysed tongue. This started to improve before I took the pred. I think the pred was given as a precaution but its caused me more issues than its solved. I feel a little better again today so I'm starting to stabilize. I think I will do as you suggest and go down in 2.5mg increments. Maybe over 3 week drops.. I'm being a little impatient I know but I just want to get off. I'm seeing my neuro before my next drop so I will discuss my plan with them. At what level should my adrenal glands start picking up again?
EileenH paul18501
Posted
Once you get to about 7.5mg pred the body has to start topping up - it tends to swing about a bit, it is a very complex feedback set-up and poking at one bit upsets the balance of another so it may take a few months. Or it may happen just like that and you have no problems at all.
Every time you change the dose all the way through pred it messes a lot of things up and many patients can take 2 or 3 weeks to settle again, some even longer, especially with biggish steps down. So if you are reducing every few weeks you never settle before you poke the set-up again and so you always feel rubbish. Top experts in tapering say the change in dose shouldn't be more than 10% of the current dose for comfort - but that does slow the process down obviously.
Do let us know how you get on - and all the best. A diagnosis is a positive in many ways - at least then they know what they are dealing with and there may be a good management, even treatment, available.
paul18501 EileenH
Posted
Thank you so much Eileen. The information you have give is very valuable. I will try the faster (if a bit silly) route. I'm prepared to go through the rough stuff just to try and feel normal again. If my condition flares up then I will just have to cross that bridge at the time. I will update my progress as I go along. Again thank you for you're input.
Guest paul18501
Posted
Wondering if they have found a cause to your symptoms yet? If not what are your symptoms if you don't mind me asking?
paul18501 Guest
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Hi K.. My original symptoms were facial paralysis on my right side and slurred speech. Both just came on. I was admitted to hospital for 11 days and made a 95% recovery. I was given a 5 day 25mg dose of pred and sent home with no diagnosis due to lack of evidence. 1 week later symptoms returned but the facial paralysis switched side and my tongue paralysis a lot worse and on this occasion I could no speak at all. I spent all of December and half of January on the neurology ward in Cardiff university hospital. Loads of tests were done and all cone back negative. Inflammation on my brain was found but not the cause and they still don't know now. I've been out since January 14th. Whilst in hospital my brain function was perfect and reacted normal I just couldn't talk. That facial paralysis went after a few weeks of me being in hospital. My tongue is still pretty bad but I can communicate relatively well now. I've been on pred since and my opinion is its causing me more problems than my original problems. Really bad fatigue, short term memory loss and bad brain fog which has slowed my thought process. I was recovering before I took pred so I'm not sure if its actually assisted me or caused more problems.. As for a diagnosis they still have no idea but are investigating MS and neurosarcoinds. I have an appointment with neurologist on the 25th and I'm hoping to learn a little more then. Sorry for such a long post
Guest paul18501
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paul18501 Guest
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Guest paul18501
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I had to have a visual contrast test, a nose swab to test for Marcons and they went over a symptom checklist. Once I failed those they did a genetic test to see if I have the gene for it and bloodwork checking my cortisol levels, mmp-9 ca3, ca4, among others. Depending on the cause they may start with 4-6 wks of antibiotics. I did not need to so I was started on Welchol which is a cholesterol med but they use it to bind to the toxins in the body to remove them. I am still on this step. People with CIRS their bodies are not able to remove the toxins like other peoples bodies would so they circulate causing us to be sick most of the time. I was told not to take steroids. I then start a nasal spray in one month. not sure of the meds after that. Not all docs are familiar with CIRS or Biotoxin illness but it does effect 24% of the population and can be tricky to find. Most people with it will fail the visual contrast test. If you google biotoxin illness and look for a website called survivingmold by dr. ritchie shoemaker there should be a list of symptoms in different clusters.If you follow the guide it should give you a pretty good idea if this may be the cause of your problems. Hope this helps.