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

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13.5 and still alive!

130 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!!!!!!

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130 Replies
PMRpro profile image
PMRproAmbassador

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

in reply toPMRpro

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

PMRpro profile image
PMRproAmbassador in reply to

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!

in reply toPMRpro

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... ❤️

Annecath profile image
Annecath in reply toPMRpro

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

PMRpro profile image
PMRproAmbassador in reply toAnnecath

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

sennetta profile image
sennetta in reply toPMRpro

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.

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. 😔

in reply to

Yup, DSNS!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

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

in reply toDorsetLady

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

Iloveholidays profile image
Iloveholidays in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toIloveholidays

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

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

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

Iloveholidays profile image
Iloveholidays in reply toDorsetLady

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

Marymon profile image
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.

in reply toMarymon

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

#DSNS

Rugger profile image
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! :-(

Annecath profile image
Annecath in reply toRugger

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 😊

in reply toRugger

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

Annecath profile image
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

in reply toAnnecath

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

Footfairy-1 profile image
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

in reply toFootfairy-1

Thank you FF, I hope you're well!

Longtimer profile image
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🙏

scats profile image
scats in reply toLongtimer

Onwards and downwards!

Longtimer profile image
Longtimer in reply toscats

Yes of course!

in reply toscats

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

in reply toLongtimer

Onwards and downwards! YES!

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

Longtimer profile image
Longtimer in reply to

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....

in reply toLongtimer

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. 🙄

Longtimer profile image
Longtimer in reply to

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

Telian profile image
Telian in reply to

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!

in reply toTelian

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

Longtimer profile image
Longtimer in reply to

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!

in reply toLongtimer

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

Longtimer profile image
Longtimer in reply to

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!

in reply toLongtimer

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! 🤷🏻‍♀️

CT-5012 profile image
CT-5012 in reply to

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! 😊

in reply toCT-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!!!!

PMRpro profile image
PMRproAmbassador in reply to

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!

in reply toPMRpro

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. 🤣

PMRpro profile image
PMRproAmbassador in reply to

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!

in reply toPMRpro

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

MamaBeagle profile image
MamaBeagle in reply to

Pooh seen several knee ops .yuck!

MamaBeagle profile image
MamaBeagle in reply toMamaBeagle

Pooh! That should be ooo

in reply toMamaBeagle

🤣 I liked poo better!

Longtimer profile image
Longtimer in reply toPMRpro

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!

in reply toLongtimer

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

CT-5012 profile image
CT-5012 in reply to

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

Daisychain12 profile image
Daisychain12 in reply to

Oh I’d love to see up my bum!!!

Annecath profile image
Annecath in reply to

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

Rose54 profile image
Rose54

Congratulations

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

That's from 7

So well done

in reply toRose54

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

SnazzyD profile image
SnazzyD

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

in reply toSnazzyD

🤣 .

Dontwannabesick profile image
Dontwannabesick

Well done yo!

in reply toDontwannabesick

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

Pipalina profile image
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

in reply toPipalina

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

GOOD_GRIEF profile image
GOOD_GRIEF

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

I'm so happy for you.

in reply toGOOD_GRIEF

Cheers GG! xx

coda123 profile image
coda123

Great news!

in reply tocoda123

Thank you!

Pongo13 profile image
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

in reply toPongo13

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

Mary63 profile image
Mary63

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

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

Too much sleep really...

peace_lover profile image
peace_lover in reply to

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

Daisychain12 profile image
Daisychain12 in reply topeace_lover

🤣🤣🤣🤣

in reply topeace_lover

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

stellafmdm profile image
stellafmdm

Well done Melissa!!!

in reply tostellafmdm

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

Christophene47 profile image
Christophene47

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

in reply toChristophene47

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

Grants148 profile image
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

Daisychain12 profile image
Daisychain12 in reply toGrants148

❤️❤️❤️❤️

Awe, thanks Grant! Appreciate the well wishes!

Grants148 profile image
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.

Sandradsn profile image
Sandradsn

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

in reply toSandradsn

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

PMRCanada profile image
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!!

in reply toPMRCanada

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! 🙄

teesher profile image
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

in reply toteesher

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

Rimmy profile image
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

MamaBeagle profile image
MamaBeagle in reply toRimmy

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!

PMRpro profile image
PMRproAmbassador in reply toMamaBeagle

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...

MamaBeagle profile image
MamaBeagle in reply toPMRpro

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

Christophene47 profile image
Christophene47 in reply toPMRpro

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

Rimmy profile image
Rimmy in reply toMamaBeagle

Ugh !!

MamaBeagle profile image
MamaBeagle in reply toRimmy

Indeed!

in reply toRimmy

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

Rimmy profile image
Rimmy in reply to

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

in reply toRimmy

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

SheffieldJane profile image
SheffieldJane

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

Daisychain12 profile image
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

in reply toDaisychain12

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! ❤️

Sho-Sho profile image
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!

in reply toSho-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!

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!

in reply to

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

ncfaaeos profile image
ncfaaeos

So glad for you!

in reply toncfaaeos

Thank you!!!!

York54 profile image
York54

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

in reply toYork54

I’m trying.... 🤞🏼

patriciawhite profile image
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 .

in reply topatriciawhite

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

Omanain profile image
Omanain

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

in reply toOmanain

Thank you!!!!

Suet3942 profile image
Suet3942

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

in reply toSuet3942

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

Suet3942 profile image
Suet3942 in reply to

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

in reply toSuet3942

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

MamaBeagle profile image
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?

in reply toMamaBeagle

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...

MamaBeagle profile image
MamaBeagle in reply to

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!

in reply toMamaBeagle

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...

MamaBeagle profile image
MamaBeagle in reply to

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

Telian profile image
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

in reply toTelian

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

Telian profile image
Telian in reply to

....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

in reply toTelian

👍🏻

aladymo profile image
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 !!

in reply toaladymo

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

Jackoh profile image
Jackoh

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

in reply toJackoh

Thank you Jackoh! Am I? WOW!

Grants148 profile image
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

in reply toGrants148

Wiil do Grants!!! Good advice!!!

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