Zero day prednisolone and goodbye GCA: Happy to... - PMRGCAuk

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Zero day prednisolone and goodbye GCA

DevonMichael profile image
38 Replies

Happy to report that my plan of reducing prednisolone over 15 monthly reductions has gone to plan! Tapered from 40mg June 2016 to zero today.

This is my first day medication free (of prednisolone and its associated team , omeprazole, calcium and aspirin).

From previous postings I understand my good fortune, may be attributed in part, to gender (and of course I do not have PMR).

However I feel a great sense of freedom and wanted to share this for others treading the same GCA path.

I hope to return in 3 months and report that I continue to be flare up free and in the meantime, send good wishes, to all those seeking the zero destination!

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DevonMichael
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38 Replies
PMRpro profile image
PMRproAmbassador

Fingers crossed it all works out! All the best.

Have you just stopped the omeprazole cold turkey? You shouldn't - it needs to be tapered too because there is a risk of rebound acid production. Just a warning...

Jackymitchell profile image
Jackymitchell in reply to PMRpro

Hi wonder if you can give me some help I was diagnosed with exhma years it’s allcways been ok up until 2 weeks ago when I developed a cough and struggling to breathe tightness in chest so went doctors was given steroids and antibiotics but still don’t fell well so to day spoke to a ashma specialist nurse she sent me straight to hospital at the hospital I was another blue pump to take 2 puts 2 times a day and the brown pump 2 in the morning and 2 in the evening and another dose of prednisone and told if no improvement then to come back and be admitted I am really scared and worried as I have never been this sick before please give me some advice thanks Jacky Mitchell

PMRpro profile image
PMRproAmbassador in reply to Jackymitchell

I'm sorry - I really don't know a lot about asthma despite half my family having it. What I do know is that a few days in hospital while they get the attack under control and adjust meds is often what is needed. If what you are taking isn't doing the job - you need something different. Prevention is far far better than needing to be rushed to hospital as an emergency - being admitted takes the rushing out and allows them to go about it more easily.

Don't be scared - take advantage of getting things sorted properly. And don't be in denial about things - because asthma can change very quickly as I'm sure you know.

Jackymitchell profile image
Jackymitchell in reply to PMRpro

Thank you

PMRpro profile image
PMRproAmbassador in reply to Jackymitchell

By the way - my granddaughter had very bad brittle asthma. It has almost gone since she became vegan - just been talking to her on FB so I thought I'd mention it to you.

Jackymitchell profile image
Jackymitchell in reply to PMRpro

I can see your message it’s blank thank for getting back to me

PMRpro profile image
PMRproAmbassador in reply to Jackymitchell

By the way - my granddaughter had very bad brittle asthma. It has almost gone since she became vegan - just been talking to her on FB so I thought I'd mention it to you.

Hope this one works!

Jackymitchell profile image
Jackymitchell in reply to PMRpro

Sorry still can’t see it I can only see the first message you sent me

Jackymitchell profile image
Jackymitchell in reply to PMRpro

I’ve just had to call the emergency people out they sent me out an ambulance they did some tests on me my pulse is low so my heart rate but he said that’s what he would expect as I am fighting an infection I am going to go back to doctors Monday as I am know shaking I didn’t go with them as they told me I be sitting in a&E all night as Saturday there busy night

PMRpro profile image
PMRproAmbassador in reply to Jackymitchell

As long as you have been checked - but don't be afraid to call them again if you need to.

Jackymitchell profile image
Jackymitchell in reply to PMRpro

Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Well done, but like PMRPro a bit surprised you've stopped all other tablets in one fell swoop.

Do hope your GCA is gone gone, but don't get carried away, you still need to be a little cautious. The after effects of Pred do still hang about for a little while.

I agree the feeling of freedom is great, and that GCA seems to stay gone unlike PMR, but please don't be too gung ho and certainly don't ignore any warning signs.

And don't stay away, your expertise will be needed by others who'd still are, and maybe those yet to be travelling the GCA path.

DevonMichael profile image
DevonMichael in reply to DorsetLady

Thanks DorsetLady for your warning and that of PMRpro but I am happy to give up the medicines, that were only prescribed to counter the impact of prednisolone. I did have anxiety about the prednisolone reductions in the lower reaches but thankfully there have been no flare reactions and I also wanted to shed all medicines because they bring their own side effects.

I and my wife will be monitoring any reaction and the good thing now is that we are now GCA savvy and will be able to recognise GCA should it return.

Each GCA case seems to be personal to the individual and we all react differently. However I will keep in touch with this site and share my experience where it is useful. I well remember my confusion when diagnosed and posting my first post of 'GCA a bolt from the blue'. I have already volunteered my GCA experience and time to a patient experience group set up by Keele University bidding for funding research to look at a number of conditions including GCA. I am holing my input will be diagnosis to remission with no return!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to DevonMichael

Good!

marciahiatt profile image
marciahiatt in reply to DevonMichael

Good luck.

Rose54 profile image
Rose54

Well done

Good luck

DevonMichael profile image
DevonMichael in reply to Rose54

Thanks Rose

markbenjamin57 profile image
markbenjamin57

Congrats DevonMichael, always nice to hear success stories on this forum in between the tough ones ;-)

Let's hope you're out of the woods completely. But, as the Aunties and others here say, keep on taking it steady until you are confident about this. Time is the ultimate test... ;-)

Please keep us all posted, whatever?

Best wishes and good luck in the meantime

MB :-)

DevonMichael profile image
DevonMichael in reply to markbenjamin57

Thanks Mark as you say time will tell. I am taking a new fork in the road and do not know what is ahead but at least I will recognise any warning signs. I hope in the future, I can report the road I have taken proved to be clear of obstructions, so others may know the path ahead is clear for them to follow.

Thanks for your good wishes.

markbenjamin57 profile image
markbenjamin57 in reply to DevonMichael

No worry Michael, all part of the service here.

There's an ancient Chinese (I think?) proverb: 'First you take the test, and then later, you learn the lesson'.

Seriously, please keep us posted - even if occasionally and all's going to plan. It helps to have people's retrospective views on PMR / GCA recovery as well as the current one for those on the Journey.

Enjoy your recovery in the meantime!

MB :-)

SheffieldJane profile image
SheffieldJane

Well done you and it is encouraging! How wonderful to ditch all the doobs they make you feel like an invalid. Don't start running marathons straight away, apparently there is still a bit of recovery to be done with weakened muscles etc. A gradual programme I guess like the taper in reverse for the first year.

DevonMichael profile image
DevonMichael in reply to SheffieldJane

Thanks Jane no danger of that, my body has been slowing me down for years. Retirement is a blessing though because jobs can always be carried over until tomorrow!

JJackdaw profile image
JJackdaw

Well done! I too have been reducing and am no on half mg which by next week will be zero mg. can't wait!

Hollyseden profile image
Hollyseden in reply to JJackdaw

Yaay Another success story. Good for you!

Sandy1947 profile image
Sandy1947

Congrats! Love a success story!

Hollyseden profile image
Hollyseden

Love a success story. Take care x

Jackoh profile image
Jackoh

Many congratulations- it really encourages us all to hear of folk going through the tunnel and coming out the other side! Long may it continue- keep us informed and I'm sure with your now wealth of knowledge and experiences you may on occasions be able to steer others!

DevonMichael profile image
DevonMichael in reply to Jackoh

Thanks Jackoh I agree it is important for those who have found an escape route to alert others they exist! The future GCA wise, is unknown to me and I will post what unfolds, the past is well known and I will happily share this,with those setting out on their own new paths.

sondya profile image
sondya

Congratulations! What a wonderful feeling. I have been on prednisone, omneprazole, fosamax and aspirin since December 2016 tapering off the preddie (from 50 to 6) and should be off it, fingers crossed, and its side-kicks by June next year. And like you, DevonMichael, no PMR has muddied the recovery process.

Greetings from (Auckland) New Zealand.

DevonMichael profile image
DevonMichael in reply to sondya

Good luck Sondya! The freedom is just great and I must be saving an hour a day on medication time of six intakes.

markbenjamin57 profile image
markbenjamin57 in reply to DevonMichael

:-)

jinasc profile image
jinasc

Good, but please go nowhere without 60mg in your pocket...............my GP issued them for me and insisted I carry them for a year. Remission is wonderful and enjoy it.

AS I had dropped all the 'just in cases' 6 months down the line. The last knocking was pred.

Won't tell you and spoil the 'party' about 1 year later. But then I was nearly 73,,,,,, your a young 'un.

Enjoy.

DevonMichael profile image
DevonMichael in reply to jinasc

Thanks for the suggestion. I do have a residue stock of prednisolone gained from repeat subscription on a tapering plan which I shall retain in the event of an emergency. Hoping I will not get GCA return but at least I shall be prepared both in terms of understanding and an emergency supply to protect my vision!

PMRpro profile image
PMRproAmbassador in reply to DevonMichael

Keep an eye on the use-by date!

Aleish profile image
Aleish

Congratulations . Do you feel well? Is your face normal shape?

DevonMichael profile image
DevonMichael in reply to Aleish

The long term use of pred raised my blood sugar level and I became pre-diabetic and the ped made me always hungry and I put on weight. However I did drastically change my diet and that coupled with reducing pred saw my BSL drop. No longer pre-diabetic and lost weight, nurse at recent check said my weight and BMI was perfect. Now I am enjoying my diet and no longer attracted to junk sweet food!

Islandgirl50 profile image
Islandgirl50

Such great news , i also was diagnosed june 2016 . I am doing well , but still on 5 mg pred also 20 mg methotrexate ! I hope i can submit a similar report to yours in rhe future , congratulations to you .

DevonMichael profile image
DevonMichael in reply to Islandgirl50

Thanks and good luck with your final steps!

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