šŸŽ‰RemissionšŸŽ‰: Today I start my new journey... - PMRGCAuk

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šŸŽ‰RemissionšŸŽ‰

Gary1310 profile image
Gary1310
ā€¢51 Replies

Today I start my new journey, ā€œRemissionā€. I am starting my morning without my Prednisone for the first time, since Jan. 16, 2019. I wonder how it will be and am nervous. It is 7 am and I am having my coffee ready to face my new journey. I read on this site that a PMR journey can last 6 yrs. I hope that means pre-diagnosis as well as the year after diagnosis. I did have a few symptoms about 6 yrs ago...some fatigue, numb swollen feet and swollen fingers, knee pain, etc. I finally flared Dec. 2018. Hoping that this condition is behind me. Thank you all for you help along the way.....šŸŒ¹

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Gary1310 profile image
Gary1310
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good luck

Sojourn12 profile image
Sojourn12

Wishing you the best! Please let us know how you get on.

Bird-67 profile image
Bird-67

Wishing you the very best of luck and got everything crossed for you. šŸ¤ž

lemarie1 profile image
lemarie1

Wonderful News! May you just get better and better.

Wishing You All The Best šŸ€

Keep in touch & let us know how it goesšŸŒ·šŸŒ·šŸŒ·

alvertta profile image
alvertta

All the best.

HeronNS profile image
HeronNS

Good Luck! šŸ€

SheffieldJane profile image
SheffieldJane

Good luck!

Amazing and praying that you go into remission and stay there. Would you tell me what dosage you started on in 2019 as that's when I too was diagnosed too but in December. I was started on 10 mg daily, but today I've started to taper by 1 mg per month. Keeping everything crossed that by the end of the year I'll be in your position Gary. However, on the down-side I think I'm being ambitious. But good luck to you and hope beyond hope it works for you

Anne

Gary1310 profile image
Gary1310

Thank you. I was startled on 20 mg on Jan. 16, 2019.

diana1998 profile image
diana1998ā€¢ in reply toGary1310

Seems much easier for men. Oh to have been born a man!! Good luck and take it easy. All the men I know have only had pmr for max 2 years.

Bridge31 profile image
Bridge31ā€¢ in reply todiana1998

I think Gary is female šŸ˜‰

Charlie1boy profile image
Charlie1boyā€¢ in reply todiana1998

Ah, but you don't know me diana1998! I am now just into my fifth year with PMR (diagnosed December 2014). At least I am down to 1mg per day.

Paddy

diana1998 profile image
diana1998ā€¢ in reply toCharlie1boy

Ah.. Well thinking about it there is one man I know who has been stuck on 5mg since he started pmr in 1997!! He's slim, fit and healthy and walks 2 miles a day with no side affects from pred. šŸ˜

Charlie1boy profile image
Charlie1boyā€¢ in reply todiana1998

That's definitely not me!!! I think from reading pmrpro' s many posts that PMR manifests itself in many different ways. We have a guy who comes to our "meet ups" who reckons he got clear of PMR in a year, but, to me, it seemed like he had a completely different version of PMR from that to which I have.

Cheers

Paddy

diana1998 profile image
diana1998ā€¢ in reply toCharlie1boy

Probably wasn't pmr as we know it. šŸ˜‚

Parijm profile image
Parijmā€¢ in reply toCharlie1boy

Hi! My journey is the same as yours. I am just on 1.5 mg daily after 5 years so a while to go yet. Good luck to you. Iā€™m newly diagnosed with Osteoporosis so thatā€™s my focus now.

Robinsnest72 profile image
Robinsnest72

You have done amazing. I was diagnosed in Aug. 2018 and am working towards 4&1/2. It is so difficult to stick with the regime reducing as it seems so slow,but will percervire if it means getting off. Good Luck to you

MhairiP profile image
MhairiP

Stride out with confidence, Gary! I'm also in remission... and hope we both remain so!

Gary1310 profile image
Gary1310

Thank you all for the encouragement.

Blearyeyed profile image
Blearyeyed

Good luck with it !

Just remember to take your pacing even more seriously in the first months of Club Zero. It's the Self Care , Relaxation and Pacing at this stage that can make the difference between success and a relapse in Pain.

You are in the Late Recovery Stage rather than "Better" , so, just as adapting your routine and having balance between rest and activity helped to prevent Pain, Flare Activity and Steroid increases with PMR , maintaining the New Normal rather than jumping back into the Old Routine helps your body have time to fully recover and get strong again in case the PMR is still present.

The Recovery Stage after any illness or injury can take some time , up to a year before you are fully " Match Fit" , so gradually building up your routine and exercise is still important.

susieq051 profile image
susieq051

Hope it lasts, hoping you have no flare ups and you can continue without pain.

Leepeelee profile image
Leepeelee

Iā€™m so pleased for you, Iā€™ll keep my fingers and toes crossed for you!

Keep us updated with how you are getting on

Choco-Holic profile image
Choco-Holic

Good luck and lovely to hear a positive post. Keep in touch to let us know how itā€™s going

Mack100 profile image
Mack100

You've done very well.

JMTS profile image
JMTS

Good Luck Garry - There are more members on here that are more conversed on this subject than me I have never taken Prednisone - when I get out of a bed I have the pain the same as everyone else but I have learned to live with it all these years - Once I get moving I seemed to come good for some unknown reason - I do exercise when I am really bad to get the limbs and blood circling in my veins - our blood has to have pure oxygen as it kills all the bugs and gets the limbs moving. I can remember a 90 year old lady saying many years ago that every morning she went to her back door when she first got out of bed and took deep breaths from the pit of her stomach to breathe in the fresh air. She said It kept her young. but of course it just doesn't happen overnight. ( Google - Hyperbaric Oxygen Therapy H20

jennifer15 profile image
jennifer15

Hi, I was told to stop prednisolone, I am now down to 1mg from 60mg when diagnosed in August 2017. I was discharged by rheumatologist and his letter to my GP said that I am in remission. So I am feeling pretty scared too especially as my daughter, who has ME, so really struggling at present. I am therefore worrying about her and doing as much as I can to to help her.

Hope that you get on really well.

Daffodilia profile image
Daffodilia

Good Luck - I think I had symptoms before diagnosed too - two years plus in now on 5 mg pred

CathyM64 profile image
CathyM64

Good Luck - hope you stay well

Stiffspot profile image
Stiffspot

I have been off Pred for 7 weeks, lots of aches pains and stiffness but bearable so far, worse thing is pain down front of arms when i stretch in particular,was due to see Rhumy 21st of feb but been cancelled yet again ha ho, good luck Gary will follow your progress with interest.

Rosina1871 profile image
Rosina1871

I was diagnosed about the same time as you and I am also about to start my journey without pred. Itā€™s scary and Iā€™m not complacent, but very hopeful. Good luck x

optermist profile image
optermistā€¢ in reply toRosina1871

Congratulations Rosina and lots of luck to you in your new journey.

Rosina1871 profile image
Rosina1871ā€¢ in reply tooptermist

Thank you

optermist profile image
optermist

Good luck Gary on your new journey of pred free..but please remember that you may not feel completely back to normal for at least another year, take rest when you can and listen to your body. It took me a good year after reaching club zero. I started on 60mg Jan 2015 ended March 2018 so sending congratulations on your new journey.

Noosat profile image
Noosat

You give us all hope. :)

Badpmr profile image
Badpmr

Best of luck to you. Stay Healthy!!!!

Jackoh profile image
Jackoh

All the best- hope all goes well for you

7Louise profile image
7Louise

Louise here, good luck Gary and all, getting down to zero Preds!

I was on preds (15, tapering down) the first time, horrendous pain and immobility of moving- arms and legs, I thought I was turning to stone- but I also needed a new hip, so I weaned myself off in a 8 month period , so that I could have my hip operation. Which I did and I was symptom free afterwards for months, until I travelled to England ( Iā€™m Canadian) 9 months after the hip operation, the flight , and abundant walking, causes a swollen Achilles heel ( tendon)

on the new hip leg , and that inflammation, caused a major flare up! And I had no prednisone with me, ( duh) so the trip was difficult... 5 weeks away, once home , I filled an old prescription for preds and started 10 mg, immediately felt better, 3 mo THS on preds again, tapered to 7 now, so itā€™s VERY important to be careful, rest well, and be aware that when the body recognizesā€˜inflammationā€™, it could trigger a flare up.

I watched ā€˜What the healthā€™ on Netflix last week, and of course, was shocked at the impact of diet, ( Iā€™m already a supporter of mind/body connection and appropriate supplement s, and good, natural foods) but wow! A must watch- my husband and I are trying less meat and less dairy ( and substitutes) and to be honest, my legs did not feel like lumps of cement this morning when I first got up,

Thatā€™s my two cents worth :)

Love all of the information on this site!!! You have been such a lifesaver:)

Asbeck profile image
Asbeck

Congratulations and good luck!

LindaB-66 profile image
LindaB-66

Great news! Gives me hope that there is definitely light at the end of the long long tunnel (coming up to four years for me). All the best!

Whitner profile image
Whitner

Wonderful news Gary!! Please do let us all know how you are doing. We love to hear good news!!

Singr profile image
Singr

Wishing you all the best?

FoCoLady profile image
FoCoLady

KUDOS!!! I've been off a year and seem fine....and you can be too!

CallyT profile image
CallyT

Well done! I was diagnosed in October 2016 and started on 15mg of Pred. I took my last dose in November 2019 and have managed not to have a flare up. Can be a bit uncomfortable at night (putting that down to the bed we have in our rented house!) but clear once I am up and moving about.

Look after yourself and wishing you every success

Lee1945 profile image
Lee1945

Have you reduced slowly??

Musicmaid profile image
Musicmaid

Wishing you all the best.

Dukeyears profile image
Dukeyears

Just saw your post from three days ago, hows it going???

Gary1310 profile image
Gary1310ā€¢ in reply toDukeyears

So far so good, I am still wary and just waiting for something to remind me I am not free. Thank you for asking. Just having my coffee. I still eat the same breakfast: half a banana, half a boiled egg, a dried prune, sip of milk..but..no Prednisone! WOW...maybe I am free !

Dukeyears profile image
Dukeyearsā€¢ in reply toGary1310

Keep positive, we are all rooting for you

Dukeyears profile image
Dukeyearsā€¢ in reply toGary1310

How's it going?

Gary1310 profile image
Gary1310

Hi...here I am one yr off Prednisone. I have been doing well. I have not take a prednisone pill in over a year. I rest a lot. Go to bed at 9 pm., up at 5 or 6. I do one project at a time , then rest. Then another but quit at the slightest bit of fatigue hits. My walking is still weird..sort of a wobble. I had a couple of twinges reminding me that I have PMR but I never took a prednisone. Decided my health and well being is my #1 priority. Not easy after raising a family and burying a beloved husband and son. Trying not to not look back. So far so good.....

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