New Year ... and saying goodbye to the Pred :-)

[Skinnyjonny]

My good friend, Prednisolone, has kept me going for the last 20 months and with the help of my good family and friends, they got me on the road to recovery. I took my last steroid on New Year's Day and

ran my 53rd Parkrun (Sunderland) since having PMR .. so from today it's all about my body doing the work. Thanks folks for all your support over the last couple of years and remember ... "Keep running free with a smile"

[Whittlesey]

Congratulations, Skinnyjohnny!

Good luck.

Best with your running.

Best to you! Whittlesey

[Skinnyjonny in reply to Whittlesey]

Thanks Whittlesey. The running continues to go well as I did a New Years Day Parkrun (Sunderland) and Riverside Parkrun (Ch-le-St) today. Also booked a remote unclimbed summit in the Nepal Himalaya with the team for next October. Best wishes for 2015 and ... "keep running free with a smile"

[Whittlesey in reply to Skinnyjonny]

That's wonderful, Skinnyjohnny! Nepal is a place I've always wanted to visit. Sounds really good. Woul say, to be careful on the heights ! Returning is one of the best successes. Looking to forward to hearing from you after the climb.

Thanks for your inspiration!

All my best to you, continuing good health,

Whittlesey

[Skinnyjonny in reply to Whittlesey]

Thank you Whittlesey for your kind comments. I've had a weird and wonderful journey, and still following a stick fitness programme. Best wishes for 2015 and ... "keep running free with a smile"

[Whittlesey in reply to Skinnyjonny]

Understood Skinnyjohnny. Seems like you've come through it and found a positive way, which is not easy. Says much about your spirit.

As one dealing with GCA, prednisone and now PMR, so glad you've come through it in this way.

And Nepal --- I don't know if you meditate but that would be a tremendous place, if you do.

Continued progress on "this journey" we find ourselves involved in!

Best to you, Whittlesey

[TimTooYoung]

Great to hear from some one coming off Predict, I was wondering how long it would take someone to do it and you have answered my question. I am on 12.5 mg per day at the moment been diagnosed about 2 months ago with PMR.

[Skinnyjonny in reply to TimTooYoung]

Hi TimTooYoung - I've followed a structured steroid reduction programme and from May to Dec 2013 gradually reduced from 20mg to 5mg. At this point I halved my tablets and reduced in 0.5mg stages following a structured regime. Therefore, the last 5mg were reduced to zero over a 12 month period. During this time my health and fitness have improved and I've run 50 Parkruns (5km), Great North Run (13.1 miles) and Tunnel to Towers in New York. I've also returned to climbing and booked an unclimbed summit in the Nepal Himalaya next October. Take your time and follow the structure. Best of luck and "keep running free with a smile"

[Gtgirl]

So pleased for you but so envious! I'm a little bit older than you, was a 5 times a week runner (didn't get out of bed for anything less than 5 miles), PMR halted me overnight. 4 months on finding it hard to adjust to a very different lifestyle. How did you know when it was ok to start running again? Would be very grateful for advice on exercise in the early days when it's hard to know how much 'discomfort' to tolerate.

[Skinnyjonny in reply to Gtgirl]

Hi Gtgirl - I was a high altitude mountaineer (Himalaya, Andes, Caucasus, etc) and runner (22 marathons plus over 200 1/2 marathons) when I got PMR nearly 2 years ago. Initially I was bed-bound and in a wheel chair due to the severe debilitating pains and 3st muscle loss. In May 2013 I was put on 20mg and started the long term reduction programme. Four months later (August) I took initial steps again following 2 weeks at Fire Service Rehabilitation Centre. I listened to my body, talked to the PMRGCA NE Support Group, and tried running a few 100 metres with my son. Since then I've maintained a daily fitness log and timelines which I've continued to this day. I followed a daily stretch routine (30 mins), started swimming from only a few strokes to over 100 laps, attended weekly hydrotherapy sessions, and started walking and then gradually running. By the end of October I restarted the UK Parkruns (Saturday 9am) which are 5km and have just completed my 54th Parkrun in December. I restarted my private physiotherapy sessions in January 2014 which gradually helped the upper body muscles. My 5km times were nothing like my 20mins but I have achieved 22:30 mins again. In September I managed to complete the Great North Run in 1hr 50mins whilst still on 3mg Prednisolone. I take Vitamin D and 6 x Spirulina tablets (energy and resilience), continue to do 30-45mins full body stretch routine first thing in the morning (usually 6am). In the last month I've stopped the hydrotherapy, finished the steroids and started to move on to the next stage of my recovery. Please feel free to visit my personal profile. Best wishes and "keep running free with a smile"

[Gtgirl in reply to Skinnyjonny]

Thanks for your encouraging response. Today I recharged my Garmin ( been in the drawer since early September

[Gtgirl in reply to Gtgirl]

Sorry, didn't quite get to finish my sentence!

I've decided to use the Garmin for walks and jogs when I feel able and will definately start a fitness log. It will give me the incentive to try to do something active daily, body permitting! It may be small steps but I'm already feeling more positive. I realise there is no point in setting long term goals at this stage (the planned venture into doing a triathlon and a mountain marathon this year will probably have to wait until 2016), but doing what I can is good enough for me at the moment.

Thanks again for your support.

[Skinnyjonny in reply to Gtgirl]

I'm more than happy to assist Gtgirl and good luck. Small steps with achievable goals is the way forward. Hopefully you'll find you are able to build on the targets as you go through the year - this was the definitely the case with me. At the beginning of the year all my achievements during 2014 were even thought of but came about as the year progressed. Weird and wonderful it was which included 2 awards, Queens Garden Party, ITV and BBC appearances! Really weird and wonderful. Stay positive, don't rush things and all the best for the year ... it will only get better

[mickt]

Well done to you ,enjoy sanity off the pred mate .

[olive2709]

Well done, I got hit with GCA in September so 40mg pred down to22:5 for this month then carry on with 10% every 28 days read your posts over last 4months I have been usingWii fit board to help with balance couldn't walk a straight line ,started to go walking again had to learn to pace my self doing 6,000 steps a day now hope to start to swim this week . Reading you posts has given me a lot of encouragement over this time . Olive

[Skinnyjonny in reply to olive2709]

Keep up the good work Olive. I'm only pleased to help as I really know what a debilitating and chronic condition this is but we can pull through. Take care and I hope 2015 brings gradual strength to the body and enjoyment for the things we can do again. Happy New Year x

[yogabonnie]

Just read your story... hope you are still fine and running! I look forward to one day getting back to my triathlons. I often win in my age group..since I am the ONLY one in my age group. I come in late ..but happy. Are you still FINE??? I am down to 5mg. prednisone after 18 months.. hope to beat this in the next 6 months. ! Maybe New Years Day 2020!