Zero day prednisolone and goodbye GCA

[DevonMichael]

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!

[PMRpro Ambassador]

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 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 Ambassador 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 in reply to PMRpro]

Thank you

[PMRpro Ambassador 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 in reply to PMRpro]

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

[PMRpro Ambassador 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 in reply to PMRpro]

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

[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 Ambassador 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 in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk 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 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 PMRGCAuk volunteer in reply to DevonMichael]

Good!

[marciahiatt in reply to DevonMichael]

Good luck.

[Rose54]

Well done

Good luck

[DevonMichael in reply to Rose54]

Thanks Rose

[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 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 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]

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 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]

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 in reply to JJackdaw]

Yaay Another success story. Good for you!

[Sandy1947]

Congrats! Love a success story!

[Hollyseden]

Love a success story. Take care x

[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 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]

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 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 in reply to DevonMichael]

[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 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 Ambassador in reply to DevonMichael]

Keep an eye on the use-by date!

[Aleish]

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

[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]

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 in reply to Islandgirl50]

Thanks and good luck with your final steps!