Pros and Cons of GCA/PMR prescribed Prednisolone. - PMRGCAuk

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Pros and Cons of GCA/PMR prescribed Prednisolone.

cycli profile image
32 Replies

I’m basically an optimist who questions everything. Therefore despite the many drawbacks with this medication I am looking for the silver lining. I think I may have found it though possibly only applicable to those as fortunate as myself with less major physical and medical complications than some here suffer. I’ve managed by dint of luck mainly and a good physiology to get to 70 with all my bits and pieces in one and working much as they always have. It certainly wasn’t through good judgement or common sense given the many dangerous and stupid things I have managed to come away from still intact. In the course of this potpourri of incidents I have managed to misuse my body to the extent we all now know when it packs up on us and takes revenge on itself. The muscles I thought tight and unyielding I put down to getting old, lack of adequate stretching, overuse and insufficient massage. Despite getting worse I’d still keep exercising in the belief that they would free up or stay functional. That evaporated with the advanced onset of this disease and this steroid is the only solution available for relief presently. As I see it, and so far I think it true, the steroid facilitates the relaxing of tension in tendons and ligaments. Despite losing muscle, a definite downside, I have been able to achieve a level of flexibility, mobility and rotation that has simply been impossible to achieve through any other means. I have tried ,exercise, stretching, yoga, acupuncture ,massage and osteopathy. All helpful but unable to lengthen the range of motion due to seriously shortened muscles(or so it seemed). That is changing and I am working through stretches which now are giving me a range I haven’t accessed since my teens. I’ll probably collapse in a bundle like a rag doll 😊. This for me is an exciting opportunity and I am therefore grateful to be given this opportunity to try and correct some bad habits and mistakes made in the past. Rebuilding muscle wasted is going to be tough and painful but that I look on as GOOD pain. I know the benefits of getting there and so the hard miles will be worth the downside. For all the other problems that this drug presents; I have joined this forum, for your help and understanding. I just thought that this spin might appeal to younger or less affected individuals who aren’t ready to stop doing what they did previously. That does however come with a caveat. You CANNOT push through this condition regardless like everything before. It has to be Accepted, Accommodated and then Adjusted to. That I have learnt from this Forum. Happy improving.

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cycli
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32 Replies
Nextoneplease profile image
Nextoneplease

What a lovely post, thank you :) I’m so glad you’re finding the upside of things.

I am 71 and have had various illnesses pretty much all my life - but like you I have found that powering on through has kept me as mentally and physically fit as possible…….until now, that is! I find I’m in a constant state of worry about what to do and how much, which really gets me down. Currently only my children and grandchildren can distract me…..and I am truly grateful for them

pomeranion profile image
pomeranion in reply to Nextoneplease

I experience the same anxiety and worry every morning. I contemplate what my day will bring. I have a wonderful family and find great comfort in our relationships. I don't know how people survive without these connections. I am truly blessed and thank God everyday for my good fortune. Not the PMR.. I could have lived without this affliction. I have tried deep breathing for redirecting my thoughts but so far have been unsuccessful. I think it is a talent I am lacking. After maybe 4-5 hours of sleep I just lay awake and then distract myself by getting out of bed (stiff and in pain) to either watch TV or read.

Maybe these suggestions will help. I have found so much good advice and remedies on this site. I don't know where I would be without it and I hope I never have to find out. God bless all of you.

yogabonnie profile image
yogabonnie

do you have a link to the stretches you are doing? or can/will you describe them. I would love to increase range of motion which does indeed seem lessened... and I attributed it to old age. Thanks. Good advice!

cycli profile image
cycli in reply to yogabonnie

Let me think on it please. Stretches are always sensitive in that one person can tolerate another finds impossible but one can always experiment with what you can manage. I'll try and structure a reply that might work for all.. Be patient. Glad you like this.

Nextoneplease profile image
Nextoneplease

I used to love gentle low impact workouts to music ( dancing, really😂) and used light weights ( no more than 1kg) sometimes. Even that now seems to unpredictably bring on pain so I too would appreciate a link/ description of some easy stretches…..

cycli profile image
cycli in reply to Nextoneplease

Let me think on it please. Stretches are always sensitive in that one person can tolerate another finds impossible but one can always experiment with what you can manage. I'll try and structure a reply that might work for all.. Be patient.Thanks for the complement.

123-go profile image
123-go

So pleased to hear that you have benefitted from this forum.

cycli profile image
cycli in reply to 123-go

who couldn't 123-go

Viveka profile image
Viveka

Interesting post, cycli! I've noticed big improvements in flexibilty since pred for GCA, like I'm back to my forties; in fact I had to pull back because I knew previous joint issues would eventually resurface. I haven't noticed any muscle weakness in daily life, but there must be because I'm now on the machine in pilates studio that caters for puny arms!

What I would say to anyone, to help with both flexibility and strength, is to go to a pilates studio with a good teacher because pilates exercises on machines tackle both of these and can do it in a gentle way. Mat pilates is ok, but not as good and level of teaching varies greatly. I've been a qualified yoga teacher for 30 years and yoga is good and also helps with relaxation, spirituality and breathing, dependent on the type of class. However, I think studio pilates is best for flexibility and strength.

cycli profile image
cycli in reply to Viveka

thoughtful and interesting . I have a different take slightly Viveka not having any professional leaning either "trainer" and instructor, although as a BC coach I had to make certain that cyclists were doing the right things in the right way to benefit from their regimes and schedules so as to benefit and not overexert. Machine based exercise is anathema to me as it dictates rhythms and routines proscribed and self limiting. I do have rollers and a simple turbo trainer for when I can't cycle outside on the road or track when weather is dangerous or too harsh, but I hate them. Specific disciplines benefit from machines and the requisite muscle groups so exercised but my approach requires a floor, no travelling, no gyms, nobody else setting a pace or rhythm and it costs nothing save the time and will power to make a difference. Be patient and understanding. I mean no offence to people in the business of fitness and health, There is room for all approaches. Watch this space :-)

Viveka profile image
Viveka in reply to cycli

Fair points Cycli, I take my hat off to you for your cycling fitness. I agree it's good to have a mat based routine and getting to studios can be inconvenient and expensive and the experience is based on how good the teacher is.

However, I'd say that pilates machines aren't the horrible weight things you get in gyms, they're based on a tension system which cleverly promotes strength and flexibility at the same time (which yoga tends not to) and which is adjusted to suit the individual. Usually there are only 4 people in the studio under supervision. Or you can do it individually. The studio I go to has super-fit people doing marathons or other sports who need help with flexibility and stability, as well as more limited people like me.

I am very enthusiastic about pilates because my teacher got me walking without pain from a dodgy SI joint which the medical profession, physios, osteopath and chiropractor said I would be stuck with. But I won't bang on... X

cycli profile image
cycli in reply to Viveka

completely understand Viveka. We are broadly on the same page here. There are no magic bullets or quick and easy solutions. It doesn't even work for everybody and some people are perfectly happy settling into an easier pattern of life but more limited. At a certain point in life and time we all have to make choices. As to my cycling fitness, well, that's sad. It has been nearly a year since I've been able to cycle properly and what I have lost has me in tears and almost broken. I will have to completely rebuild from base and I am only just now able to even consider this. As to the way my physique has altered as a result of steroids even in this short period, I daren't put the kit on till I've done something about it :-)

Viveka profile image
Viveka in reply to cycli

Oh dear, I'm so sorry to hear that. Limitations to things that are important to us, even temporarily, can be devastating. I haven't experienced this particularly with GCA (just ongoing worry and headaches) but I did with two joint operations after accidents plus other joint problems. From what I read, I can see you know so much about fitness and are very determined, so you will rebuild as soon as you safely can. Good luck!

PMRpro profile image
PMRproAmbassador in reply to Viveka

I did Iyengha yoga with unmanaged PMR as well as mat Pilates - both adapted by excellent teachers and found both helped a lot with flexibility though I do have moderately hypermobile joints so no doubt that helped. But between aquafit beforehand and the yoga and Pilates I survived 5 years of undiagnosed PMR and remained mobile.

Viveka profile image
Viveka in reply to PMRpro

Hi PMRpro, are you still able to do any exercise or is it too difficult? X

cycli profile image
cycli in reply to Viveka

I'm fine now Viveka. Been controlling inflammation first before any strain due to exercise. Been doing normal work and get about stuff on farm but can't consider "exercise" as in training, until then. Literally just had all clear on bloods, flatline inflammation and sedimentation. Yippee.

Viveka profile image
Viveka in reply to cycli

Hoorah!

cycli profile image
cycli in reply to Viveka

SOGIL

Mirror polished S/S handmade 953 reynolds frame and me at 69 before my Dolomites ride.
PMRpro profile image
PMRproAmbassador in reply to Viveka

Not a lot now - I gave up skiing a few years ago - various reasons starting with a knee injury and then achilles tendonitis the following season which rather shortened the seasons. I did ski again but other things appeared and then I needed new gear. That plus the cost of a regional season ticket was rather off-putting as we are now one of the major ski areas in the world and it feels as if the world comes here to ski these days! Most of them CAN'T ski and the accident/injury rate had risen because many have no idea what their limits are and that makes it dangerous for the rest of us. Like most of my neighbours we drew a line under it - at our age the odd day skiing is no longer a good idea, you have to be regular about it and keep in training ;)

Fitness studios here are really just weights rooms - the side of the gym I detest, But Covid really rather put the kibosh on all that sort of thing. I'm very lazy really ...

Viveka profile image
Viveka in reply to PMRpro

I have friends who are considering how long they can go on skiing safely. Too scary for me! Shame you haven't got better facilities for lower level exercise there. X

HeronNS profile image
HeronNS

Although I didn't live the same physically taxing life as you I had the same attitude about how to deal with the increasing stiffness and pain. Just do more exercise, try that stretch, etc. Until I'd nearly crippled myself. Indeed, thank goodness for pred, and a doctor who actually recognised what was going on!

cycli profile image
cycli in reply to HeronNS

amen to that Heron. I think PMRpro despite struggling on for 5 years has the same reaction. We were all literally crippled with pain. I'm still picturing the smug self assured response from my Rheumy yesterday when I asked him if he understood how it felt, he said at 50 he was not of the age to get it . When I explained some did he said they had been wrongly diagnosed. I've said that I wouldn't wish this on my worst enemy but even 2 days of it might modify his self assurance .

HeronNS profile image
HeronNS in reply to cycli

Seriously, a doctor said this to you? My first doctor, when I remained undiagnosed, was a young woman whom I'm sure looked on me as a hypochondriac old woman (I was then in my mid 60s). But since then I have only encountered physicians who have treated me with respect and compassion (touch wood). That goes a long way towards healing and should be part of medical training.

cycli profile image
cycli in reply to HeronNS

Seriously Heron. He actually said that. He truly believes it. Desperate really isn't it?He is a medical professional, and he has a vast knowledge of the diseases of inflammation under his belt. That's incontestable. There is no doubt that he has knowledge far beyond my limited experience of this condition in which I find myself, and it may well be possible that there are other factors at play which he has an interest in digging around to find, because he certainly wants to prove that I either do or do not have what I'm being treated for. I can use that. That's why I backed off from any confrontation. Time enough later if he really hacks me off. I'm free to play , with his blessing, and reduce now.

PMRpro profile image
PMRproAmbassador in reply to cycli

Thinks himself above the real experts does he? Of course - if he wants to identify something else for me he's welcome but somehow ...

cycli profile image
cycli

there's always a first eh Dad2Cue :-)

Sharitone profile image
Sharitone

I saw a physio for a couple of months before diagnosis and he said 'I don't think there's anything serious going on here'. I think I made it a lot worse with all that desperate stretching!

cycli profile image
cycli in reply to Sharitone

That's the key issue here Sharitone. You cannot stretch a muscle that is contracted and not being given oxygen because the blood flow is restricted. They are all doing this and it can't be done save without bad pain. Been there many times over until I literally couldn't function. Literally seized up. Add to that headaches wracking my brain 24/7.Anyway, all past now I hope. I'm working on the general approach to putting it right as I post this so watch this space.

Sharitone profile image
Sharitone in reply to cycli

You would think a physio would know that, wouldn't you? 🙄

cycli profile image
cycli in reply to Sharitone

you don't want to get me on what I think of the average physio Sharitone

Boss302Fan profile image
Boss302Fan

Good post. I too always look for the silver lining in anything that happens. Like in my case now 67 after getting PMR at 65 and my silver lining is not getting GCA (knock on wood).

I too abused my body going through life. Rode & Raced Motorcycles (even fell 96ft into a river on one - got out with “only” a compound fracture of right humerus”. Made the front page of the local paper.😂), Water skied 3x/week from early May to mid November (wet suit😂), Snow skied, owned and rode horses (trail, team penning, jousting-ring sport) and sometimes took the quicker route to the ground, worked on cars from the time I was 15 (ever siphoned leaded gas? Tastes awful), and the list goes on.

I’m extra thankful that I’ve not experienced most of the side effects of Pred and the very few I do are being managed with minimal doses of appropriate prescribed meds. If I had not read about all the “potential” (key word this) nasty side effects I wouldn’t blink twice about the med. As to exercise versus for me normal everyday activity, I also haven’t had an issue. But, assuming the worse, I purposely just slow down the amount and length of effort. I think this is just a common sense precaution. Although I still rotate my truck tires and have to manually torque its lug nuts to 140 lbs-ft.

I don’t know, wild guess, but I’m beginning to think a lot has to do with genetics and you never know where you’ll be. An indicator I believe is how many pre-existing conditions have you experienced during your life, or are experiencing. The more prone you’ve been; the more conservative you need to be. My Dad had RA at 39 and it got bad. Was in one of the USA Phase 3 trials for MTX. Also had genetic heart issues. Died at 82, mom going strong at 88. She does have wet macular degeneration but it’s being successfully treated. Got my eye doctor keeping a close watch on me. So far I haven’t had those issues. Only chronic GERD.

Because of my dad, I took risks. Wanted to experience everything possible that I could afford to because he couldn’t (RA). Still am. I can’t complain for my past years, been very fortunate. PMR hasn’t slowed me down much. Pacing myself appears to be working “for me.” From everything I’ve read posted on this forum that’s another silver lining, I’m atypical and do consider myself either blessed or darn lucky! May be too soon to tell as I have at least another 23 years or more to enjoy life. (Told you I’m Optimistic!😁) Did I just Jinx myself?😳

cycli profile image
cycli in reply to Boss302Fan

not a bit Boss302Fan..great post and kindred spirit. Like I say. Not common sense just lucky. We came through somehow but learnt so much. Have we cotton-wooled the following generation due to our excess?? can't really know. Stupid always wins through and Darwin makes the selection ultimately one hopes or we'll be snowed under with stupidity. OOps..just realised we're there already!!!!..no politics here.

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