When your body goes wrong A keen cyclists woe

[cycli]

Hi. I'm 70 and since getting this disease have been searching for a site like this.

Here's bit about my state.

I was diagnosed with PMR on 13th June and on 20mg Pred. but 2 weeks later reverted and discovered I also had CGA so now on 40mg .

EPIPHANY. 4th July to 28th July 2021. So today was a new experience for me. Both physically and mentally I am more alive today than I have been in decades. Maybe it’s the relief from pain, or the belief that this unpleasant and worrying phase is under control. I genuinely feel better than I have ever felt for more years than I can reckon. Whilst still not totally suppressing the two conditions, my body is working better than it has in all areas, apart from stamina and being able to work all day not tiring. It may be a false euphoria caused by relief so I shouldn’t expect too much, but it is good to feel that there is real hope of a full recovery. The sad irony is that the same drug that has saved my body destroyed my fathers from his condition 40 years ago. I can say I have felt an improvement each day. I am also managing to contribute physically in work areas and this has not been the case for 9 months. My mood has lifted and the depression I have been feeling for some considerable time has completely dissipated. I am thinking clearer than I have for a couple of years. Dexterity is back, alongside balance and reflex response. My immune system must be returning to normal as two stubborn warts on finger tips are shrinking fast as is the one on the heel. My eyesight seems to be improving and pressure behind the right eye seems less if not totally absent. I had no idea as to the level I had dropped, nor the true state of my mind, until experiencing this near rejuvenation. Stamina is improving and so I will gradually increase the manual work. Hearing and eyesight will need checking again as there are improvements. I am not back to normal. All the little and big things going wrong and failing are recovering to a state I am finding hard to remember. I think I have a chance to rebuild my fitness and discover what I am capable of doing physically. I’m under no illusion as to what level of fitness I have dropped, but as to body health, it’s a whole new ball game. This is strangely exciting considering the pain and depth of despair I experienced. I am now totally dependent on this drug to maintain this condition and clearly, if I have to take such a large dose long term, I will begin to see its negative effects. At present though it is being completely consumed trying to suppress these two horrible diseases. PMR and CGA concurrent. The real challenge begins once suppression is achieved because the physical work level must be increased to offset the loss of fitness and muscle deterioration inherent in its use. I am told it is not desirable or sensible to quickly reduce the dose as it has taken control of so many aspects of my physiology and metabolism. Therefore I will have to collaborate with the specialists and try to work out a varying schedule of work, exercise and rest so as not to impair the drugs effect by overdoing it. That is going to be a hard but interesting phase. Someone of religious bent might be giving thanks to God. I cannot claim such blind faith. It seems like a miracle, but it is all down to observation, knowledge, understanding and sheer dogged determination to not let it win. I have been given a second chance to enjoy my health and fulfil the next however many years productively. A new start with a body that is working properly. What a gift at 70. I'm an optimist but not delusional. I may have to adjust my ambitions but if you read my profile it might explain where I am coming from..

[jinasc]

Welcome to the site no one ever wanted to join.

Take it easy, the high dose of steroids gives you a false rush of highs and lows.

PMR causes the oxygen supply to muscles to be impaired so please do not overdo the work etc.

GCA. this is never to be taken lightly and you should get to an optician as soon as possible as pred+sunshine can and does cause existing cataracts to grow or new ones to come along - you either need re-actolite specs or good pair of sunglasses.

You have developed GCA at nearly the same age as I was and it took 5 years for the GCA to go into remission. There is no cause or cure.

I suggest you take the time out and go to the Pinned Posts on the right hand side of this page and click on FAQs (Frequently Asked Questions) and read all you can.

This is the beginning of a steep learning curve and you need to learn as fast as you can and also learn to listen to your body, and if signals stop whatever you are doing eg gardening, house work etc then rest.

You cannot push through either PMR or GCA if you do, it bites back big time. They come and go when they want and until we find cause and cure we learn to live with it an control it as best we can.

BTW you have been extremely lucky, as when I read your profile, I was shocked that it took all this time to get a diagnosis and pleased that your sight has not been affected.

Take the time to read my profile and PMRpro and Dorset Lady.........and many others who are experts at living with these two auto-immune illnesses.

Good wishes on this journey that no-one ever wants to undertake.

[cycli in reply to jinasc]

thank you will read

[PMRpro Ambassador]

Just one quick point - the Dolomites are not between Pisa and Verona - those are the Appenines. If you crossed he Dolomites getting from Pisa to Verona you must have got very very lost!!!!

[cycli in reply to PMRpro]

cheers...we took a diversion to include them otherwise agree...

[PMRpro Ambassador in reply to cycli]

Where did you go in the Dolomites? I live there ...

[cycli in reply to PMRpro]

lucky you. I'll dig out the route maps we followed and ping them across. It was wonderful.

[cycli in reply to PMRpro]

ok. PMRPro. .here's the itinary Day 0 Fly to Pisa. Taxi to hotel in Lucca where we start. Day 1 Lucca to Salsamorggiore. Day 2 Salsa to Bergamo. Day 3 Bergamo to Ponte di Legno, Day 4 Ponti to Merano via Stelvio Pass. Day 5 Merano to Madonna di Campiglio Day 6 Madonna di Camp to Sirmone via Riva 550 miles 5500ft climbing. Was glorious.

[PMRpro Ambassador in reply to cycli]

Ah, the Brenta Dolomites - the nearest you were to me was Meran. It IS glorious - amazing country

[MrsNails]

Hi Cycli Welcome & glad you have found us from pretty much the beginning of your journey! Prednisolone certainly improves things more than you can ever imagine but please remember it’s a false sense of wellness, the Pred is working on the inflammation but you must play your part & rest no matter how well you feel, the easier you take it now will benefit you when it becomes time to start reducing your dose.

I will attach you a link for FAQ which we have worked hard to put together, take your time & read through some of the posts & we’ll be around when you have questions of which I’m sure you’ll have many.

Kind Regards

MrsN

healthunlocked.com/pmrgcauk...

[cycli in reply to MrsNails]

thank you...will do

[Quiney]

I loved reading your story and, as a keen cyclist myself, I can empathise completely. Although I have now been weaned off the prednisone, I was acutely aware of the muscle wasting nature of the high dose I was taking (60mg initially). I found that a regime of light weights and squats were helpful to maintain a degree of strength and an indoor turbo trainer helped with endurance. Might not work for everyone but we do what we can. Enjoy your bike!

[cycli in reply to Quiney]

Just a quick one Quiney. As a cyclist yourself and now off that high dose of 60 what is your current state please? Will I ever get back my previous fitness or must I seriously readjust.

[PMRpro Ambassador in reply to cycli]

Don't know about cycling but Skinnyjonny got back to Annapurna IV though he was a bit younger than you. He runs the support group in Durham - meets in St Aidens in Framwellgate Moor in normal times.

healthunlocked.com/user/Ski...

[Quiney in reply to cycli]

So… started on 60mg in March and then began to taper in June by 5mg every week so completely done with them last week. I can now be on the turbo trainer for about an hour at 120 watt. Not quite as strong as I was back in March before I became ill but like you could only manage about 10mins initially before the legs felt like jelly. I found that little and often was the key to building my strength.

[cycli in reply to Quiney]

That's really encouraging Quiney Thank you. It seems you have had a dramatic recovery in a short period. Not the normal picture painted here. We're all different and perhaps I can do the same. Let me know how it goes. I hope you don't have a relapse. presumably you had both or just PMR. let me know please. Feeling good at present but not started taper yet. Doc wants to start in 2 weeks time depending on the inflammation. My numbers back on 13th june were 176,121,76,71, at 2 wk intervals. Was hoping last would be 50@s but GCA and PMR still seem to have a hold. Maybe next will be good.

[cycli in reply to Quiney]

Quick addendum....You didn't do turbo while taking prednisolone. You simply waited for the initial relief, then went on a planned reduction where you are now off it. Are you back to normal and cycling as before?

[Quiney in reply to cycli]

Ok, so firstly I should say that I am not being treated for PMR but rather Sweets Syndrome, an acute inflammatory response to the Covid-19 vaccine but under the care of a rheumatologist who put me on prednisone and methotrexate. I have just checked on Strava and I first went on the turbo after 6 weeks of being on 60mg prednisone. I managed 6km and was shattered as had no leg strength and cv fitness had gone (had been in hospital for almost 3 weeks and then very immobile at home). As my prednisone dose was reduced and I persevered with turbo, I began to develop more muscle in legs (did weights for upper body). I have had no more symptoms (still on methotrexate) but unable to ride outside as I have been left with residual dizziness which is now being investigated. I wish you well in your recovery too.

[cycli in reply to Quiney]

Thank you Quiney. Sweets syndrome looks nasty so glad you got sorted and back riding. Dizziness is a serious problem and I have faced this and adjusted to it over several occasions. Best to not ride when that's happening. Just dangerous for you. So despite a fairly short period on the steroids you clearly lost a lot of muscle and condition. That's of concern to me but nothing much I can do. PMR and GCA are different from your condition and very unforgiving. If you push exercise too far it sets one back and encourages the inflammation, but too little exercise and one seizes up a little from lack of use. As I am learning to understand it is like a yo-yo and it's a balancing act. I'm just hoping that whatever caused me to get it eventually gives up and goes away. Then I can try and pick up the pieces of whatever fitness and strength I have left and try to rebuild.

[cycli]

Thank you Quiney. I hope they publish it. Don't know if it will reach the target but it might just help someone. I'm starting turbo but 15 mins and the quads can't take any more and that's taking it easy. A bit scary. They soon recover but I'm not pushing it at the present. All advice is against.

[yogabonnie]

welcome. I am so glad you are feeling so good about yourself and your body and recovery at this point. Enjoy this time. The euphoria tends to wear off a bit... but hang on! The pinned posts will help a great deal as will all the wise advisors on this site. My PMR began on my 71st birthday...when I was riding home from a mere 16 mile ride... I'd don a triathlon a week earlier and was in top form... when I was hit by a car. I suffered only some cracked ribs and bruises fortunately and was cleared to go ahead with planned trip to Sweden and unfortunately got a bug on the plane and was sick the first few days of the trip along with the aching ribs. That was the beginning. I just threw too much at my immune system I guess. I began on a much lower dose of prednisone and have after 4 years and a one year bump up from a flare arrived at 3mg. I have exercised throughout with some good days and some bad. I have resisted using medication for my bones although they are in osteoporatic state... but I'm trying to hang on with weigh bearing exercise and tap dancing! heel drops work also but give tap a try!! great fun. I think this disease is definitely a one day a time thing. Try not to look ahead or race to the finish line of this one. enjoy the view as you go. I am in awe of your cycling accomplishments! ride on!

[cycli in reply to yogabonnie]

thank you yogabonnie. I moved to Durham to enjoy the hills and train for my rides. What's done is done and I have to adjust but it's hard to understand how low this dragged me. Nearly a basket case. Hope is back but it's probably the meds. Clearly I'm in for a turbulent ride. I'll get back somehow.