13.5 and still alive! : It's been 441 days since I... - PMRGCAuk

PMRGCAuk
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13.5 and still alive!

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Hidden
131 Replies

It's been 441 days since I was diagnosed with GCA/PMR and started taking prednisolone! And what a rollercoaster ride it has been!

I started at 40mg of Pred, went to 60mg, reduced to 45mg, but had a major flare; I then had to go up to 80mg to get same results that 60mg had been giving me! ...but, thank goodness, I have pretty much been successfully reducing (except for a few minor set backs) since that time.

13.5mg seemed INCONCEIVABLE to me, back when I was on 80, 70, and 60 mg! I NEVER thought I'd get here! I've had some battles along the way, but here I am; and please know I could not have done it without YOUR help!!!!

Thank you!!! Thank you ALL for your help, support, and encouragement!

13.5 and still alive!!!!!!

131 Replies
oldestnewest
PMRpro
PMRproModerator

Great!!!!! You're lower than me!!!!!!!

3 likes
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Hidden
Hidden
in reply to PMRpro

NO WAY!!!!!?????

1 like
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PMRpro
PMRproModerator
in reply to Hidden

Yup - back to 15mg since the autumn due to a flare that is messing up the atrial fibrillation. Only the pred keeps that under control, cardiologist can't offer anything more at present. So pred it is!

8 likes
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Hidden
Hidden
in reply to PMRpro

Wow! That is a BUMMER! I had no idea... I'm so sorry! Between you and your OH, you can't get a break, huh? Sending healing thoughts... ❤️

5 likes
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Annecath
Annecath
in reply to PMRpro

So sorry PMR pro hope you soon get sorted and back on track x

2 likes
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PMRpro
PMRproModerator
in reply to Annecath

This is on track!!!! I've had PMR a long time and it tends to flare every couple of years!!!!

4 likes
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sennetta
sennetta
in reply to PMRpro

Crumbs - no wonder you think I'm making an unnecessary fuss at 1.5 - 2 mg! I would be truly gutted about that! That's tough.

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Sheffield-Karey

Fab. Onwards and upwards. Slight warning note, once you get to these levels slow slow reduction. I’m doing 1/2 mg per MONTH 😫 now at 4 1/2

Had a flare at 6mg and had to go back to 10 for 2 weeks and start reducing again , what a palava. 😔

5 likes
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Hidden
Hidden
in reply to Sheffield-Karey

Yup, DSNS!

3 likes
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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Sheffield-Karey

I always think that tapers below 10mg are much more difficult than higher figures. Of course, the percentage drop is much higher, and I think we also ( whether consciously or unconsciously) think it’s going to be easier than it is!

So slowly, slowly and even more slowly

7 likes
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Hidden
Hidden
in reply to DorsetLady

Yeah... I get that impression! "Slowly, slowly and even more slowly," GOT IT! 👍🏻

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Iloveholidays

Can you come and tell my GP that! I’m on 12.5 and I know Gp will say to go to 10mg after 3 weeks, i’ve been doing ok and really don’t want that pmr pain back

1 like
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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Iloveholidays

I’d love to! But can’t - recovering from hip op - and I doubt he’d be pleased. Just do your best!

2 likes
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PMRpro
PMRproModerator
in reply to DorsetLady

How about facetiming or skyping him? If GP practices can offer it - so could we!!

2 likes
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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

Yes. Could see that going down a storm....not!

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Iloveholidays

Wishing you a speedy recovery 😊 i’m having a foot op on a few weeks....

2 likes
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Marymon

Your rollercoaster 🎢 is coming down the slope, make sure you slow down on the run to the docking station, and don’t let the guy con you into taking another ride. You must feel very chuffed.

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Hidden
Hidden
in reply to Marymon

Good advice! ...and no that SOB is NOT taking me on another ride!!!!!!

#DSNS

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Rugger

What a ride it's been for you! Well done!!

Take it steady from now on. I've just had to go back from 4mg to 10mg because I overshot the end of the rollercoaster track! :-(

5 likes
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Annecath
Annecath
in reply to Rugger

I have last week gone down from 14 mg to 13 mg and I am in pain so trying to cut down every other day ,I was good on 14 mg apart from fatigue itreally wipes me out I can stand being tired I'm retired so resting is not a big problem but when the pain is bad I struggle but try to keep a smiley face 😊

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Hidden
Hidden
in reply to Rugger

🤬 Damn! Sorry to hear that! ...and thank you so much!

1 like
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Annecath

Mamici 1 Well done so pleased for you , keep up the good work, I am amazed at your achievement so far keep smiling loads of love to you

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Hidden
Hidden
in reply to Annecath

Cheers! ...although I just went along for the wild and crazy ride!

1 like
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Footfairy-1

Yipppee. Sounds like you're going the right way. Great to hear the good news. I hope everything else is improving for you xx

2 likes
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Hidden
Hidden
in reply to Footfairy-1

Thank you FF, I hope you're well!

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Longtimer

Well done, I'm always nervous when lowering think I must have the slowest plan ever!......just be careful, I had the Endoscopy a week ago, thought I wasn't stressed about it, but I have felt ill since.....

Onwards and upwards....we hope🙏

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scats
scats
in reply to Longtimer

Onwards and downwards!

2 likes
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Longtimer
Longtimer
in reply to scats

Yes of course!

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Hidden
Hidden
in reply to scats

YES! ...that's what I thought!

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Hidden
Hidden
in reply to Longtimer

Onwards and downwards! YES!

PS I have just been told I need an Endoscopy (query stomach ulcers) was it okay? Horrid?

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Longtimer
Longtimer
in reply to Hidden

You will g at a choice of 3 anaesthetics...I had the throat spray, which was fine, it's done very quick....and any samples taken you may be told about. I have gastritis which not treated can cause ulcers....because of the pylori infection...but it's treatable with antibiotics. Let me know how it goes....

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Hidden
Hidden
in reply to Longtimer

Ahhhhh, ok, cool! Thanks very much!!!! That is very helpful. I have been waking up with terrible heartburn, so Gastro guy wanted to be safe rather than sorry! I will let you know.. it may be months before it's scheduled though. 🙄

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Longtimer
Longtimer
in reply to Hidden

My doctor told me not to panic if I got a quick appointment, because over 65's are seen quickly........too bad your 21😉

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Telian
Telian
in reply to Hidden

It won't be that long before they call you. Hope all goes well - it's worth having the throat spray or you can't drive for 24 hours. Results are instant except with a biopsy - results take about 2 weeks for those. I don't like the thing down the throat at all but they spray with anaesthetic and can't feel anything really - more me thinking I'm gonna choke because of my chronic dry throat but all was okay. Just concentrate on your breathing and the nurse will hold your hand too!

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Hidden
Hidden
in reply to Telian

Ahhhh, thank you. I feel better about it! I think I will opt for spray too! Cheers

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Longtimer
Longtimer
in reply to Hidden

Ps the reason I said I feel ill after endoscopy is because it is something which is obviously a sort of stress on the body....and PMR dosen't like stress does it!

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Hidden
Hidden
in reply to Longtimer

yes, I will increase Pred on the day... good tip! Stress is a b**ch!

1 like
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Longtimer
Longtimer
in reply to Hidden

Good idea!.....hope you haven't got to wait too long, they rung me on the Friday to go the Monday.....it was a new 8 week old massive building, lovely staff....but the "eco" heating had failed everyone including staff were freezing!

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Hidden
Hidden
in reply to Longtimer

Mine will probably be at the RSCH... which is a dump of a place! It was built in like 1854 and looks like it! Great staff, but building and facilities are awful... I may be cold as well! Or blistering HOT, it could go either way! 🤷🏻‍♀️

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CT-5012
CT-5012
in reply to Hidden

I had the throat spray, took about 10 minuets start to finish, screen on wall opposite see the inside of your stomach, staff were fantastic. Just remember to breathe! 😊

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Hidden
Hidden
in reply to CT-5012

Oooooo fun!!!! I had a blast watching (and talking to doctor) while he performed my colonoscopy !!! Seeing the other "end" should be just interesting!!!!

2 likes
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PMRpro
PMRproModerator
in reply to Hidden

Me too - and OH has just had one and was talked all the way through it and found it really interesting too. We do have a great -scope department!

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Hidden
Hidden
in reply to PMRpro

I wish I could watch my knee replacement surgery, as I will have an epidural, but he didn't seem to thrilled with that idea. 🤣

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PMRpro
PMRproModerator
in reply to Hidden

Bit bloodier that! I was furious I couldn't watch the c-section by No1 daughter! The surgeon told me to look in the frame of the lights - but I couldn't see as I'm so shortsighted and didn't have my contacts in!

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Hidden
Hidden
in reply to PMRpro

True... I think I'd be ok, but ya never know. Pity you didn't see the birth!!!!!

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MamaBeagle
MamaBeagle
in reply to Hidden

Pooh seen several knee ops .yuck!

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MamaBeagle

Pooh! That should be ooo

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Hidden
Hidden
in reply to MamaBeagle

🤣 I liked poo better!

1 like
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Longtimer
Longtimer
in reply to PMRpro

I'm due that next year, mother died at my age with bowel cancer, father with stomach cancer, so grateful they keep check on me....both ends!

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Hidden
Hidden
in reply to Longtimer

Ohhhh, wow... YES! Have both ends checked out for sure!

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CT-5012
CT-5012
in reply to Hidden

Interesting experience, have to remember any questions for later. 😂

1 like
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Daisychain12
Daisychain12
in reply to Hidden

Oh I’d love to see up my bum!!!

1 like
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Annecath
Annecath
in reply to Hidden

I had colonoscopy and endoscopy one after the other was okay ,just the one lot of stress had gas and air so was in lala land anyway while it was carried out, could have played a trumpet with the wind afterwards haha

1 like
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Rose54

Congratulations

Your doing better than me went back to 15 start of Dec

That's from 7

So well done

2 likes
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Hidden
Hidden
in reply to Rose54

Ohhhhh nooooo, bummer. Finger crossed you go back down...quickly!

1 like
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SnazzyD

Quite a journey eh! Your ! key must be nearly worn out, thanks to Pred 😉

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Hidden
Hidden
in reply to SnazzyD

🤣 .

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Dontwannabesick

Well done yo!

1 like
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Hidden
Hidden
in reply to Dontwannabesick

Thanks, not sure how much I had to do with it except persistence, but..... cheers!

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Pipalina

Well, I'm delighted about the 13.5 but even more by the "still alive" bit. It certainly has been a rollercoaster ride for you, Melissa. However, it's been our honour to have shared it with you - warts and all - as they say. Much love xxx

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Hidden
Hidden
in reply to Pipalina

Awe.... Thanks pip, thanks a lot!

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GOOD_GRIEF

I'm not saying anything except Good On You, Mel.

I'm so happy for you.

1 like
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Hidden
Hidden
in reply to GOOD_GRIEF

Cheers GG! xx

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coda123

Great news!

1 like
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Hidden
Hidden
in reply to coda123

Thank you!

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Pongo13

And I wouldn't have got by without your rants and all the giggles along the way (without dwelling on all the mutual negatives!) here's to getting back to whatever normal is! X

3 likes
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Hidden
Hidden
in reply to Pongo13

Cheers Pongo! Thanks for your support and encouragement along the way!

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Mary63

That’s great news. Are you less like a Duracell bunny now? Sleeping?

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Hidden
Hidden

YES!!!! I sleep like a rock! In bed by 10:30-11:00 and up at 7:30-8:00!

Too much sleep really...

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peace_lover
peace_lover
in reply to Hidden

One can never have too much sleep.. (said in a British Royalty voice) 😴

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Daisychain12

🤣🤣🤣🤣

1 like
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Hidden
Hidden
in reply to peace_lover

I LOVE sleeping... makes me think I'm either depressed or practicing for death! 🤣

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Christophene47

GREAT ACCOMPLISHMENT! KEEP UP THE GOOD WORK AND HAPPY 2019!🎉

2 likes
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Hidden
Hidden
in reply to Christophene47

Thank you, thank you very much! I just went along for the ride, really!

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stellafmdm

Well done Melissa!!!

1 like
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Hidden
Hidden
in reply to stellafmdm

Thank you!!! Not sure I had much to do with it... but I made it!

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Grants148

Pleased that you are gradually feeling a lot better,all those doses of pred.,must have been very hard to deal with .l hope that everything continues to go well for you mamici ,sending love and caring thoughts xx

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Daisychain12

❤️❤️❤️❤️

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Hidden
Hidden

Awe, thanks Grant! Appreciate the well wishes!

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Grants148

Sorry about your flare PMRPro ,l hope everything will be OK for you soon ,you have had a lot of worry with your OH recently,it is your turn now for some TLC ,much love ,Patricia xx.

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Sandradsn

Pleased for you ...Yayyyy! what a journey!

1 like
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Hidden
Hidden
in reply to Sandradsn

Really... the "road to hell," have better paving! THANK YOU!

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PMRCanada

So glad for you Melissa! Hard to believe what we can achieve...and now you are at a level where you never believed you would be. With reductions I hope you will be feeling better and side effects will be lessened. Although we’ve had discussions on this forum about “the numbers”, it IS an accomplishment that takes time and patience, with some experimentation thrown in. You have persevered!!

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Hidden
Hidden
in reply to PMRCanada

Thank you PMRC! Wise words indeed. ..and you are right, it's not about "the number," although I am often seduced into believing that if the dosage is getting lower, I must be getting better! 🙄

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teesher

Wow, 13.5 from 80 is quite difference. You have been through the wars, hope things are a little calmer for you now. x

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Hidden
Hidden
in reply to teesher

It does feel like it Teesher, but we all have, right? Different battles and more or less scars, but we're all heroes! xxx

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Rimmy

Dear Melissa- thrilled for you to be at last down 'here' in the 'moderate' dose crowd ! After 2 years I am at 11.5mg at last and trying for a mg each month until 10 mg then it will be 0.5 mg IF I am doing OK. I have noticed more of the 'old' aches and pains - or maybe 'new' ones acquired between 64 and 66 years - anyway they are at least 'normal deterioration' (LOL). So sorry about the heartburn - that can be dreadful. The only health prob I had before PMR/GCA was reflux (GORD or GERD) - for years - and it has been treated with what many here regard as a problem drug (a PPI- Lansoprazole) for about 15 years now. I have had no problems taking it at all - at least that are apparent to me although it was only ever intended short term. When I started taking Pred it was a 'no brainer' for me to keep taking it.

Somebody mentioned the possibility of a H. pylori infection which is certainly worth checking for. (BWT the factulcers were caused by the Helicobacter Pylori bacteria - rather than things like lifestyle and stress was discovered by a West OZ doctor - a friend of my longtime GP in Perth - and it was a BIG find at the time), Anyway the endoscopies I have had were done at the same time as colonoscopies and I was meant to be completely 'out' for both - BUT I woke once during a colonoscopy and found it excruciating - but couldn't signal the medical staff as 'frozen' with other drugs - so don't get how anyone can watch their 'procedures' like this - obviously we are all different about such stuff !

But the MAIN thing is I am 'celebrating' your lowest level yet of Pred - and IMAGINE !! one day - and before we know it - we will raise a glass of SOMETHING - hopefully together - to the END of this 'trip' and boy oh boy hasn't it been a 'ride' (so far) ....!!??

Love Lots

XXXX

4 likes
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MamaBeagle
MamaBeagle
in reply to Rimmy

My OH had a colonoscopy when we were living in Spain. No analgesia...........the pain.........the noise.......and the doc just kept on pushing the thing further and further in......OUCH. And he had an audience - his gp, me and another friend who had an appointment!

1 like
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PMRpro
PMRproModerator
in reply to MamaBeagle

That's disgusting - no analgesia here either unless you really can't manage but they go slowly and talk you all the way through the procedure. I think that keeps the patient more relaxed and reduces the risk of any adverse events. Perforation is a relatively common problem in many places...

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MamaBeagle
MamaBeagle
in reply to PMRpro

I'm with you all the way pro! No pun intended.....

1 like
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Christophene47

Surprising to me; everyone in US gets short acting IV anesthesia for a colonoscopy. And they wake up quickly and never knew anything happened.

1 like
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Rimmy
Rimmy
in reply to MamaBeagle

Ugh !!

1 like
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MamaBeagle
MamaBeagle
in reply to Rimmy

Indeed!

1 like
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Hidden
Hidden
in reply to Rimmy

Hi Rimmy, I would LOVE to raise a glass of something to anything with you Rimmy! Let's do it!!!! I cant believe you woke up from colonoscopy and were in pain, but could not tell anyone!!!! How horrifying! I was awake though the whole thing and talked to the doctor throughout the procedure... now whether I made any sense or not is another question altogether! 🤣 My Dad suffered with Gerd for many years... he was always in pain and uncomfortable... never enjoyed eating. I hope you and Ruth are not suffering too much with the heat and are enjoying life and leisure! xxxxx

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Rimmy
Rimmy
in reply to Hidden

Hi Melissa thanks for all those generous and kind thoughts - no we are not suffering heat much at all down here at the bottom of Western OZ - in fact we have been virtually the only area escaping recent heatwaves. We do get the occasional hot (30C plus) days but generally in the mid to high 20s - even sometimes the low 20s lately. In Perth (the closest major city) it is usually at least 10 degs hotter than where we are 500kms to the south and being near the sea and not in a concretised built-up city makes all the difference. Sadly though in OZ poor little Tasmania is being ravaged by terrible forest fires - some even threatening precious old growth wilderness forest - an unbearable.

But YES - one day we will have 'fun' together somewhere and somehow cos by then we'll really DESERVE IT !!!

XXXXXX

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Hidden
Hidden
in reply to Rimmy

Oh, I am so happy to hear that! You do not need temps in the 30's and 40's that's for sure... NOBODY does!!!!! ...but there is no climate change, right? 🤬 A shame about Tasmania and the fires... Mid 20's seems HOT to me now ... and I used to be a Florida girl living with temps in the 30's year round. Not sure how I did it? I was young, I guess.. xxxxxx

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SheffieldJane

So glad that you are still alive Meliss!! 👏👏👏👏👏👏👏👏👏👏💘

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Daisychain12

Oh well done darling. So massively proud of you. What a warrior you are. And despite all this you write such magnificent articles xxxxx

1 like
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Hidden
Hidden
in reply to Daisychain12

Thank you, I didn't have a lot to do with it.. just went along for the ride! Thank you DC for reading and enjoying my writing.. I appreciate your support! ❤️

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Sho-Sho

I'm not surprised you are euphoric to reach 13.5 after such a rollercoaster of a ride. I have read a lot of your posts, they always make me laugh or cry, in sympathy, as I think I have endured a very similar nightmare time. I was diagnosed with GCA two and a half years ago, think I have seen about five different consultants over worries from all the side effects of high pred, like you having been so fit, active and well before. But, just repeating what all our other mates on this brilliant club have said, when you get to 10mg take it really slowly it is so much more difficult to taper. I definitely pushed too hard from 10 to 7.5 where I have had to hold for five months as I was really struggling with the overwhelming fatigue and feeling so grotty if I did a fraction too much. I know I became obsessed with lowering this hateful pred which has made life such a misery (I know it's the GCA that's the problem and I have been one of the lucky ones in having no sight damage).

Sorry rather a long message, but well done you for battling down, we'll get there in the end!

1 like
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Hidden
Hidden
in reply to Sho-Sho

Thank you for reading and enjoying my writing, Sho-Sho. I appreciate your encouragement! Yes, from what I have read under 10mg gets tricky! I will be vigilante! And yes it is an easy trap to fall into... playing the "lowering," game! Cheers!

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Pepperdoggie

You're catching me up Mel! Still holding at 10 for the 2nd month while I can't shake this dam cold off! Keep Rocking down!

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Hidden
Hidden
in reply to Pepperdoggie

Good on you PD, good on you!!!!!

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ncfaaeos

So glad for you!

1 like
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Hidden
Hidden
in reply to ncfaaeos

Thank you!!!!

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York54

Good to hear!! You have had a massive roller coaster ride. Keep doing what you are doing!!👍👍👍👍👍👍

1 like
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Hidden
Hidden
in reply to York54

I’m trying.... 🤞🏼

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patriciawhite

From the helpless feeling when it starts and the follow on feeling that you would Murder anyone who tries to take your steroids away ,Ha ! well if you had the strength you would ;-) ,to now is an amazing achievement .Never feel it is going slower or faster now ,Take it as it comes .You know enough to know its a rollercoaster. Well done and enjoy the good feeling don't get power mad and rush it now . ;-) Really happy that you are happy .

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Hidden
Hidden
in reply to patriciawhite

Thank you PW, thank you!!!! God advice, "don't get power mad!" Hahahahahahaha

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Omanain

That's good news Mamici1 and very encouraging. Long may it continue!

1 like
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Hidden
Hidden
in reply to Omanain

Thank you!!!!

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Suet3942

Well done Melissa. Lots of pitfalls along the way but you have gone along this path with humour and stoicism. 😊

1 like
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Hidden
Hidden
in reply to Suet3942

...ands tears and sarcasm, but yup, I’m here! 👏🏻👏🏻👏🏻

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Suet3942
Suet3942
in reply to Hidden

Lol. Our sense of humour keeps us all going, 🌸

1 like
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Hidden
Hidden
in reply to Suet3942

If ya don't laugh... you'll cry!

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MamaBeagle

Fab M! Be prepared for the stress of the op! Should we up a bit around the time? I've read something about doing that on here?

1 like
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Hidden
Hidden
in reply to MamaBeagle

Hi MB, I responded to this yesterday but my response disappeared. 😤 Both my Rheumy and my Ortho guy wanted me to get down to or less than 15 mg before the knee op. The Ortho guy said he did not want me to increase the prior to the Op, as he would give "hydrocortisone," before and after. Does that make sense or sound familiar to anyone? So I'll take my 13.5 up until the day before I guess and then let them give me whatever...

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MamaBeagle
MamaBeagle
in reply to Hidden

I'm down to 5.5 now and they didn't say anything about anything - more interested in what supplements I take - she didn't have enough space in the box!

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Hidden
Hidden
in reply to MamaBeagle

Wow!!!! 5.5 thats great!!!! I have not gone for me pre-op thingy yet, but Ortho Surgeon does not want me increasing dosage. I take a lot of supplements too...

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MamaBeagle
MamaBeagle
in reply to Hidden

I'm v lucky my symptoms always been really controlled so much so that I can be a bit blazé and disrespect it! Then I get a dose of the DF or as back in the summer a flare.y GP in France said I only needed the predictive for a year, you decrease every month, in a year you will be cured,.....🤔hmmmm! Keep taking the supplements M and Good Luck. MN xx

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Telian

Congratulations! You'll survive it all, did you know that? It's the lower levels that will take more time as you know then it's DSNS so keep trucking.... xxx

1 like
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Hidden
Hidden
in reply to Telian

I never thought I would survive Telian, but they say only the cockroaches will be left, after world burns, so.... it makes sense! 😬 . Yes I know under 10mg it all gets very tricky... DSNS! is the key. xxxx

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Telian
Telian
in reply to Hidden

....and you might be okay at 10mg - I got much lower, below 5 mg, before I needed to do .5mgs and wasn't unusual to stay for a minimum of 6 weeks at a time. Hopefully you will do too. xxx

1 like
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Hidden
Hidden
in reply to Telian

👍🏻

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aladymo

Loved to hear you’re on the way down ! ( wouldn’t sound appropriate with any other disease !!). Gives us all confidence and hope. I too tapering so slow ( even at high doses - never more than 10%). Drs are right on board, and this site is phenomenal ✔️ Like you, thank you all !!

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Hidden
Hidden
in reply to aladymo

Thanks aladymo! Yes, have HOPE... I didn't for a long time, but now I'm a believer!

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Jackoh

This is such good news Melissa - so pleased for you- lower than me!!

1 like
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Hidden
Hidden
in reply to Jackoh

Thank you Jackoh! Am I? WOW!

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Grants148

Pleased for you mamici ,you certainly have had quite a journey with GCA /PMR.,so good that you are now on a much lower dose of pred.Take care and remember to pace yourself and not overdo things xx

1 like
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Hidden
Hidden
in reply to Grants148

Wiil do Grants!!! Good advice!!!

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