Done it again Will I ever Learn. : Tried it again... - PMRGCAuk

PMRGCAuk
9,441 members β€’ 16,618 posts

Done it again Will I ever Learn.

Tried it again following doctors order. Took 5mg coming down from 10 mg pred. By 10.15 pm could stand it know longer. Took the othe 5 mg.

If I listed all the pains etc would sound bazar.

My reason was I am Convinced when I get down to 5 all the GCA Symptoms will return. So I could convince the doctor

But I bottled out. As I felt so dreadful. But what bugs me if I do convince them I will be waiting months to see a Rumi.

It's crazy. I feel all the pred is doing is masking the symptoms.

29 Replies
oldest β€’ newest

I don't have GCA (only PMR) so I don't feel qualified to give advice based on my experience. But I can say "Hang in there my friend and listen to your body. Do not give up the good fight. Be authentic and direct with your physicians. And... sometimes masking symptoms is what gets us by in life while the disease takes its own sweet time to heal. But others will be along soon to give more immediate and pertinent assistance.

4 likes
Reply

Pred doesn't cure the underlying disease, which eventually will go away on its own, but it does calm the inflammation which gives us PMR pain or GCA symptoms, and this is useful and important.

7 likes
Reply

Hello, to go to your last comment first, your Pred IS only masking the symptoms, it isn't a cure. It supesses crippling inflammation while your body hopefully goes into remission and stops being in an inflammatory state all by itself. For many this also means changing their way of life (usually pacing themselves) to make it easier for the body to restore itself and stay healthy or adapt to having to live with it.

If you've been on Pred for 6 years, a jump from 10 to 5mg which is a 50% drop seems crazy fast, judging by reactions people report on here. I expect your poor sleepy adrenal glands get a slap in the face with a wet fish then can't get up to speed quickly enough. I've got GCA only and I notice a 5% drop and have withdrawal to varying degrees rather than a flare, every time. I now do half that and don't feel I've been run over by my medical notes in a wheelbarrow. So my drop from 18 last week was 0.5mg to 17.5mg and I've not been on the rollercoaster at all. Keeps me on Pred for longer but I'm playing the long game so I don't keep bouncing up again. Not looking forward to seeing my Rheumy next week as I'm 'supposed' to be on 9 mg by now.

I'm sure other 'old' hands will reply when Europe wakes up. I'm just up because for some unknown reason my body decided 5am was good enough. I'm keeping the dog company downstairs doing this.

14 likes
Reply

Yes, this old hand has finally surfaced...............:) is that a smile?

I am assuming you have been diagnosed with both PMR & GCA? If not please let us know, when diagnosed and with what?.

It is not really a long game if you do it in a steady reduction pattern.

Leading Medical personnel have said 'no more than 10% at a time'.

There are two reductions plans, available free of charge - email pmrgcafightersne@g.mail.com - subject heading Reduction Plans.

There is also a thread on here with Apps to choose from as well.

The final thing is that once down to 7.5mg and below, a referral to an Endocrinologist is a good idea, the short test (ACTH) will tell you how your adrenals are doing, are they starting to wake up have they woken up and are they yet up to speed.

Reply

Thanks for all that good advice

Unfortunately it's not getting a plan that's the problem it's getting my bloody doctors.

To agree.

But I'm not trying there stupid

Plans no longer.

It is manly down to them I have been on pred as long as this. Over 6 years and all the time trying to get me off too fast. Now all I get from them is "you want be happy when your bones are crumbling. Or you get Diabetes."

Personally I think I would have got diabetes by now if I was going to after over 6 years.

They can't even tell me how long I have been on. 😀

Was diagnosed with pmra 6 ish

Years ago

But now I feeli have GCA

As I had all the symptoms but panicked upped me dose to 30 got rid of symptoms by the time I went to doctor 😲

Convinced them to see a damd Rumi am because there were nowt showing dismist me

But I am not convinced at all

Thanks

It's a battle

All the Best with yours πŸ€πŸ€

Reply

Hang in there. I am reducing 1gm per month, and when this happens, for a few days after it seems like the crap has returned. Doctors told me to expect this and not to worry. And they are right. It settles once the body has adjusted.

2 likes
Reply

Think I'll do mi best to get on 1 per month.

Thanks.

Reply

Not quite there yet - on 6 per day. Next month, 5.

2 likes
Reply

6 months. 😱 My doc expected me to go from 5 in 2 weeks. . πŸ˜±πŸ˜•πŸ€‘

1 like
Reply

Poor you. Of course it's only masking the symptoms by damping down the inflammation but it's that what is keeping you alive. I have GCA and the worse advice I was ever given by the Rheumatologist who told me very confidently that " in two years you will be cured". Equally confident, I was the perfect patient and reduced as directed which was once I had got to 10 mgms, to one a month. I got to 3mgms then flared. Three and a half years later I am slow reducing to 4 and a half. I don't want to do this as like you I am impatient to get off altogether. I have skin like a snake, bruise if I bang into anything, had two huge cataracts that have now been successfully removed, lost a tooth and I won't tell you about my bladder. Now I know I have to listen to my body, my CRP is 3 which is the slowest its ever been and apart from being a bit mad, I am symptom free.

Hang in there my friend, we will get there, don't be bullied by anyone, including yourself. We will get there.

7 likes
Reply

Great advice! This illness makes us all a bit mad! I have lost my filter, can't talk if I'm in PMR fatigue, and only do what brings me joy!

5 likes
Reply

They probably don't, just worry about the side effects which they know about but not the benefits and that every patient will is different. My GP husband had learned so much from me and tells his Partners, You know your body and you can manage it. Just smile.

Reply

Sorry, this was meant for Ronny. Totally lost my filter

1 like
Reply

Thank you for that Edith.

I am convinced my doctor thinks I want to stay on pred for fun. 😀

I hope you are like me with scarcely any side effects of pred.

All the best with your Battle. πŸ€πŸ€

I am convinced my doctors would be quite happy for me to come off pred And Suffer. 😲😰

Reply

See my reply to Ronny in error

Reply

Thanks Edith you get there in the end easy don on here.

That's another good quote to tell the doc

No one knows my body as I do. 😀

Reply

Hi ronzy, I can relate to your frustration, though I "only" have pmr. It seems that often it's the medics' sense of urgency that presses us to reduce quickly, but of course it's tempting anyway as success is a sign that the illness is receding. But I've come to accept that this illness has a mind of its own and will come and go as it pleases. Doesn't mean that I can't do anything to help, eg with exercise, diet and pacing; but ultimately the pmr will go when it's ready to go.

Acceptance and pacing have been the main things that have helped me, I think. Acceptance that the pmr is not entirely within my (or my doctor's) control has helped to take away the stress and anxiety, which can only be good. Part of this is getting rid of the feeling that one has to please one's doctor by being a good patient.

Hope you manage to get back on an even keel soon.

2 likes
Reply

Thanks. Al tell em. And give em what for. 😀

They can't bully me no longer I've tried there stupid idea s

3 likes
Reply

Dear Ronzy,

I don't usually reply knowing the very knowledgeable ones will do it anyway, but a drop of 5mgs is far too high in one go. What on earth was your Doctor thinking about.

Only had GCA 3.5years-but I convinced my Rheumatologist that dropping half a milligram a month was sufficient for me and when I got down to 3.5mgs on 22/07/17 I had a montster flare which I've still got. My GP is a very clued up one and she agreed to let me put my Pred back to 10mgs a day, and if Rheumy doesn't like it tough. I'm staying at 10 until I feel half human again. Depending how the liver condition presently under investigation pans out I may use that as a reason to stay on a high dose for a lot longer. I've got osteoporosis compliments of Klinefelters Syndrome and high dose steroids already so I can't get it again just have to live with the degree I've got. Your never know the liver may need to be treated with steroids as Janet's was (dear departed wife).

I suggest you stay on 10 until your symptoms have gone and then try again, but only when you feel able. Hope you feel better soon.

Regards

Colin

2 likes
Reply

Thanks for that πŸ˜‰

It strange you should mention liver as I have problems with that

Sones & narrowing of the bile duct. And last night I was getting pains. I know liver pains well.A very sickly pain sometimes back &front.Mmm πŸ€”

It's a battle.

All the best yours. πŸ€πŸ€

1 like
Reply

But ronzy - NO-ONE would be able to reduce from 10 to 5 after a long time on pred. Yes, you can do it when you have only been on 10mg for a couple of weeks, I've done it. But not after the time you've been on steroids. One mg at time...

3 likes
Reply

Mmmm I definitely know now I did it manly as I know all my Symptoms will come back.

Then I could produce them at the doctors.

But by 10 pm I had had inuff 😩

So had the other 5.

Then back to 10 in morning

I am going to the doctor next week to give him a πŸš€ ing 😲

I shall tell him straight it is manly

Down to them I have been on pred all this time.

"Because you are treating me all wrong

I have come down many times

And what happens I have a bad flare and why?

Because you are trying to bring

Me down at this ridiculous pace

And I am not putting up with it know more."😀

The last time I whent down to 5

I ended up in A&E.

Should I say 1 per month or 2 months?

Thanks 🌹

Reply

Start with 1mg per month - if that works, that's fine. If not ask to do 1/2mg every 2 weeks - if that works, fine. Then if you need to, 1/2mg per month.

1 like
Reply

Sound good to me. I'll tell them that is want to do.

Watch this space.😲

Have you ever herd of people on this alternate idea ?

Like drop to 5 and next day back to 10. 😲

My doctors seems obsessed with it. Don't know where it comes from. 😳

Thanks.

Thinking of changing my name to Sodemall. πŸ˜‚

1 like
Reply

Nobody should be dropping by 50%. Even at much lower doses we try to drop much more slowly. This why below 10 mg the dead slow nearly stop plan is so useful. There's another one too, tortoise and hare, but I don't know its details. As PMRpro has said, it isn't slow if it works.

Reply

I've come across doctors who want to do it - they think it softens the drops a bit. What it actually does is confuse your body even more and it has to adjust to a new much lower dose every other day.

My response would be "You try it if you want to. But I forgot, YOU aren't taking pred are you?"

2 likes
Reply

Yet another card to play. πŸ‘πŸ‘

Reply

That's what I have to do. And doing it. A bit of crap for a few days till things settle. Wonderful to see improvements (even the curly hair is an improvement).

Reply

As PMRpro 🌹 has said ", it isn't slow if it works."

RVery wise words one to quote to my doctor. πŸ‘πŸ‘

Reply

You may also like...