Reducing steroids

[AnnetteB]

How would you suggest reducing steroids from 15mg to 10mg? I have been on steroids for many years?

Many thanks

Annette

[piglette]

You could try 1mg reduction a month to see how you go.

[AnnetteB in reply to piglette]

Thanks will try that.

[piglette in reply to AnnetteB]

Good luck. Do you take your pred daily or every other day?

[AnnetteB in reply to piglette]

I take them every day.

xAnnette

[piglette in reply to AnnetteB]

Just interested as a friend with Myasthena Gravis takes his every other day.

[AnnetteB in reply to piglette]

How many are they on? I also take Azathioprine 50mg x 2 a day and Pyridostigmine 60mg x 3 a day.

In the past I have had IMMUNOGLOBULIN INFUSIONS and they dramatically strengthen me and I am Very concerned as my new Neurologist says these are now very restricted and he can only give them to really ill patients in hospital which really worries me as I can get very weak without them. Do you know anything about this and if they are available elsewhere?

Thanks

Annette

[piglette in reply to AnnetteB]

I think there is a problem with the immunoglobulin infusion at the moment because of Covid-19. I remember reading something. It should not be used on anyone with Covid-19, so that may be the risk they are worried about that you might also have the virus. I am surmising so I may be wrong.

[AnnetteB in reply to piglette]

Oh I realise one couldn’t have it now but I mean Ever. That is what is a bit depressing.

[piglette in reply to AnnetteB]

I think a lot depends on cost with the NHS, so hopefully they will change things after coronavirus.

[AnnetteB in reply to piglette]

Does hot weather affect you? I used to love the sun but I find it now doesn’t suit me at all.

[piglette in reply to AnnetteB]

I have never really been a sun worshipper.

[AnnetteB in reply to piglette]

But do you feel worse in hot weather?

[piglette in reply to AnnetteB]

No not really. Not that I have noticed.

[Goldyukr]

VERY slowly. I was more sensitive to reducing than most. I found this great online schedule of how to do it slowly. You go down 1 mg 1 day then go back up for 6. The next week you go down for 2 days then back up for 5 and so on until you can reduce 1 mg. It takes time but was so much better for me.

[AnnetteB in reply to Goldyukr]

Very many thanks. Did you do that even when reducing from 15? Or only when you are reducing below 10?

Do you ever have immunoglobulin transfusions? They make the Whole Difference to me. I have fairly recently been transferred to a new Neurologist at Charing X and he says they are very restricted and he will only give them to seriously ill people in hospital. When the virus is over I would like to know where else I could get one.

Annette

[Goldyukr in reply to AnnetteB]

Hi. Yes, I did start going down by 1 mg under 15 and then .5 under 10 but I’m super sensitive. No, I have no experience with immunoglobulin. Take care and hope it goes well.

[AnnetteB in reply to Goldyukr]

Many thanks. So at what stage did you start that regime you outlined?

[Goldyukr in reply to AnnetteB]

I was reducing from 25 to 20 at first and that I was able to do without the regimen. It started getting hard for me when I tried to get below 18. I did get down to 4.5 but had to go back to 7.5 because that caused my arthritis to flare too bad.

[AnnetteB in reply to Goldyukr]

Interesting. Thanks.

[AnnetteB in reply to AnnetteB]

Does Hot weather have a negative effect on you?

[Goldyukr in reply to AnnetteB]

Sorry i didn’t get a message about this for some reason. Yes the hot weather is terrible and I live in Florida.

[Clergyman in reply to Goldyukr]

Thanks for that. I've worked down from 50mg of Prednisolone to 4mg for GCA. But am feeling a bit 'not quite right' as I try stepping down the next level to 3mg. Can't quite put my finger on it. So I might try a version of your method.

[lighthousepoet]

We are all likely to be different when it comes to both tolerance of steroid treatment and how we reduce our dependence on it. It is how it manages our condition Myasthenia gravis that is the key to all this. What I am about to tell you , I would not recomend you try for yourelf , the dangers are self-evident. I had an underlying medical condition called Lyme disease that made this possible, therfore , perhaps these were/are unique circumstances. I stopped all MG medications suddenly and completely, the only side affect was diarrohea. I went from total dependence on prednisolone and mestinon to non dependence. I am now Asymptomatic and in complete remmision from MG. I might still have the antibodies but I no longer have the symptoms. No one in the medical profession can give me an answer as to why this has happened. I think it more than likely that my immunbe system is being suppressed by Lyme disease, therefore, I might not be producing antibodies

[AnnetteB in reply to lighthousepoet]

How extraordinary! No, I certainly wouldn’t try that although I hate being so reliant on all these pills.

[CDreamer in reply to lighthousepoet]

I think spontaneous remission has been noted medically and before medication ie: before 1970’s, one third of MG sufferers would go into spontaneous remission. But it can also return and this has happened to a few people I know after 20 years. I think it can worsen as we age.

I am currently medically stable with Mycophenolate and never taken steroids and self medicate Pyridostigamine - up to 8x60mg daily but currently down to 3.5.

[KellyHWallis]

I done mine successfully this way take 15 mg for six days 14 mg for one day 15 mg for five days 14 mg for one day 15 mg for four days 14 mg for one day 15 mg for three days 14mg for one day 15 mg for two days

14mg for one day 15 mg for one day 14 mg for two days 15 mg for one day 14 mg for three days and so on until you are fully on 14 takes about seven weeks but it worked for me and then so on until you get off of them which I have been off of steroids for two weeks now I was on them for 3 1/2 years

[AnnetteB]

Interesting. Many thanks.