Well, to report progress along the way I think I have got through the flare of GCA to a stable state albeit back on 35 mg pred. It's taken a couple of months nearly to overcome the drop to 22.5mg when the flare started. Now to taper slowly and see if I can get down to a better level. All this has given me a much better understanding but raised a question. Where is the transition and recovery story? Who has achieved the holy grail of getting off pred. and actively pursued their previous activities with vigor? Has anybody actually returned to fitness? How did they rebuild their muscle mass and stamina? Have they documented their journey? Is there anyone on the 15000 membership list who can share their success back to fitness story please? We have all accepted a debilitated state and whilst still taking pred. have to accept the continuing loss of muscle and strength. That's a given. Exercising whilst debilitated doesn't allow us enough duration to rebuild muscle without fatigue. However after pred. there is the possibility to rebuild and I wish to hear this story so please share if you have the knowledge.
Transition from Disease to Health.: Well, to report... - PMRGCAuk
Transition from Disease to Health.
What 49000 membership list? Just over 15,000 on PMR/GCA over a period of under 10 years, by no means all active currently. About 2/3 of them are likely to be PMR only and mostly women. Most people who DO get back to something like pre-PMR/GCA fitness have ridden off into the sunset and won't see your plea.
Skinnyjonny had PMR, was in a wheelchair. He climbed Annapurna IV just before Covid. He runs the NE support group in Framwellgate Moor. No doubt jinasc could put you in touch, tell you more about his journey,
healthunlocked.com/user/Ski...
Fairly sure he was running again while on pred though
been in touch and we chat occasionally. He had PMR so I have a longer route out with GCA on top. Still worth hoping though.
Not necessarily at all - GCA may be rough at first but often clears relatively quickly - not as broad a range of presentations as PMR.
Yes, I think this is right. Or it was for me. GCA for me was an acute presentation and since I started high dose prednisolone in March 2019 its particular symptoms that I had - double vision, temple pain, jaw claudication - very quickly disappeared and haven't, fingers crossed, come back. I had no flare of those. But what I did develop over the almost three years since has felt like either pmr-type pain or prednisolone side effects. It’s a long road out, but GCA wasn’t with me for most of it. Fingers very firmly crossed when I say that!
glad you are mending carriemetz.
This member is one that has -most definitely- healthunlocked.com/user/Ski...
Of course there is opportunity to rebuild your life and activity after Pred, but you must remember life has moved on a bit as well - you are older and may have other issues - so you probably won’t get back to how you were before.
No way would I say I was as fit as you pre GCA , but 5 years in remission and 3 joint replacement later, I’m probably in a better place than I was 12 years ago. So that to me is a bonus!
Sometimes it pays to be grateful for what you have rather than try and achieve the unobtainable.
My friend whose husband is now quadriplegic posted a brilliant meme this morning:
"Sometimes you have to let go of the picture you had of what life would be like and learn to find joy in what you are actually living." [Rachel Marie Martin]
very true ...in so many ways..
Strangely enough I wrote something very close to that down, for me to remember, but a few days ago. Though having been a casino manager, my general motto is: this is the hand you've been dealt, play to the best of your ability.
Suppose that sums up my attitude too. There are some things you can't change ...
have always told my children to play the hand they are dealt and not to think grass is greener on other side. Hope they listened!
I know I won't be the same but I do want to be stronger and able to ride long rides but slower and shorter. No possibility at present.
No, not possible at present, but early days into GCA which still has the upper hand at the moment. …won’t always! Be patient my friend.
I have always reached for the stars DL. I may not get all the way but I will get further aiming for them rather than a lower target. I think my days of overachieving compared to my peer group are over, but I can still overachieve on lesser targets 
I’m not saying you, or anyone, shouldn’t reach for the stars…..but some days we all need to be a little pragmatic.
so true DL. I've managed a balance this time. sectioned , logged and cleared a fallen pine . Might split it today for drying. still have 5 more to deal with but one at a time is sensible.
Good man! Love the smell of newly cut pine…reminds me of all sorts of good times.
And at worst - there are electric bikes ...
It may come to that but I am still hoping for the best.
They can get you places you wouldn't have otherwise - very popular here even with locals who mountainbike properly!
you will. please see my private message
seasons greetings D2C. It's not good feeling weak as a baby but that's what it seems like sometimes. I know full well that this is going to take hard work and a lot of time to do it right but it has to be done. I can exert quite some force and effort for short periods but it is stamina and duration that fail. It is just impossible to get anywhere near where I once was. I have accepted that I have changed. What I haven't accepted is how much stays that way.
Until I am off the pred. it isn't possible. That's my goal and into remission. Time will tell and it is just trying to manage to slow decline as much as possible meantime.
i haven't been on my bike, indoor or out, since PMR/GCA started. Though I did try before diagnosis, and it nearly finished me off! I feel very envious of people who say they have PMR and still manging to walk 4 miles a day. Makes me feel like I must be doing it wrong.! So I sympathise with your frustration!
Dear cycli. Sorry to hear that you had a flare but I cross fingers that slow tapering works. I am in a somewhat different situation as I was able to start with Actemra directly at my diagnosis in February this year (GCA- large vessel vasculitis). I could quickly taper prednisolone (to zero within 5 months) and started exercising (very slowly at the beginning and then more and more intensively) 2 months after I started therapy (and when Pred was <15mg). I am mainly cycling now (gravel, race and mountain) and by July (when I could stop pred) I was again on a comparable level of physical strength (including muscle mass, vO2max) as before the disease. From end of April until today I have been riding 3900 km. I am still injecting Actemra but without any side effects - looks like my disease is in full remission and I think Actemra plays an important role (but certainly every patient is different). I noticed that both remaining disease activity in the beginning and high pred levels made it difficult to exercise - and I think also here Actemra was helpful (allowing fast taper and keeping inflammation very fast at bay). Let me know if you want to have further information.
Thank you DeepThought2. such a helpful and optimistic response. I'm delighted for you that you have been able to return to your sport at a level. Only pred. here so very interested in your experience with Actemra. Any info. on fitness and development welcome. I doubt that I'll get back what I had but just getting back to the bike would be such a joy.
Dear cycli. I know that the situation is different in UK where it seems to be much more difficult to get Actemra for GCA treatment compared to Germany. My disease history is also a bit different from many other GCA patients as my main symptoms were generalized without head ache or so. I had more or less continuous fever and felt very very bad. End of October 2020 I still cycled 80 km a day and shortly later I was to weak for driving my car. I was tested for (as I felt at that time) hundreds of different diseases including various forms of lymphoma and I was very happy to finally receive a diagnosis and the Actemra treatment at the University Hospital in Freiburg/Germany in February 2021. I lost a lot lot of muscle mass during illness (approx. 3 months - since I was just able to sit on the couch). In February I started with 40 mg Pred, which within a few days reduced my CRP and ESR close to normal values - then I received my first Actemra injection. In January 2022 I will extend the injection period from weekly to 10 days first and if that works to 14 day in March 2022. I have no side effects from Actemra (and also all blood values that sometime are affected by Actemra (white blood count, liver enzymes, fatty acids) are in the normal range). Prednisolone in contrast gave me various side effects (high blood sugar values, sleeplessness) but all that disappeared when I got below 10 mg - And I could taper very quickly due to Actemra. As I said - I started slight exercises when I reached prednisolone levels <10 mg. First it was walking on a treadmill, then gentle running and cycling on my stationary bike. During illness I had a very high resting heart rate (90-100 bpm - normally 60). It took some time after the start of the treatment for the resting heart rate to decrease again - at the beginning I tried to not get higher than 130 bpm during exercise (which allowed me only very gentle training units). I had also irregular heartbeats that started with taking pred and got better when I reached values <10 mg. In July I could stop pred completely and then my (Garmin-calculated) VO2max (oxygen uptake by the lung and distribution to the muscles - a parameter that allows to rate your fitness status) reached the same value as the year before and I was able to make long bike rides > 80 km again with the pace I was used to. From then on I cycled (when work allowed) almost daily. I think Actemra (that also allows fast pred tapering) was really the key for me to get back to normal fitness rather fast.
That's brilliant and really helpful DT2.I am mirroring the heartrate, bp and irregular pulse and on medication to cater. 6 months in and hoping. Sounds like Actemra is key and getting to below 10mg. I'll have to advocate and push for a different approach it seems.
"Does Germany do things differently than the UK? "
In what way? In terms of healthcare there are parallels and differences. But above all, they spend rather more per capita than the UK does! It is a partially insurance funded system so the assessmentof value for money are made differently.
In Germany Actemra is standard medication for GCA (though not for PMR as far as I know) which can be prescribed as first line medication- that seems to be the major difference compared to UK - moreover, there is no time limit here. For me TCZ was really helpful and allowed me to get back to my normal life rather soon.
Is your healthcare cover the basic AOK or private?
Mine is private but for Actemra prescriptions there is no difference. It is approved in Germany for GCA and thus is payed by the compulsory as well as by the private insurance.
Just wondered. Not sure how it works here - it's allowed for RA but they have to get approval from Rome for funding for GCA. But the same applies for the new generation anticoagulant drugs - I don't think it is particularly difficult though.
Hi cycli.
I've been on zero pred since 1 October, 3 years to the day that I started on my PMR journey. The obvious difference is that my maximum pred was 15mg.
Whilst I was functioning at less than optimal health for part of the time, I found that pred didn't inhibit my capacity for exercise. I certainly went through a spate of soft tissue injuries (quad, adductor, calf), which I attributed partly to aging and partly to pred. Of course squash wasn't a factor!
My take on my journey was that the capacity to maintain at least a fair level of exercise mitigated any contrary effects from pred. The impact of our lengthy Covid lockdowns, with no access to gym or squash, was probably more of an issue.
Since coming off pred I've had a major kidney infection that had me in hospital for a week, and a full heart/arteries examination. Fortunately the kidney has almost fully recovered and heart and arteries are in very good shape. I actually lost more fitness as a result of the infection than I did in 3 years of pred.
All of that said, one of the things I've learnt from this site is that we all respond idiosyncratically, so what worked for me probably will not for anyone else.
Squashie
Hi squashie, thanks for info. I think GCA is giving me a harder journey and much slower plus the dose being higher so damage is greater. Glad you are over the kidney problem and that cardio/vascular is good. I have slight damage so must be careful now and work to improve gradually. We are all so different but there are themes and threads. A tapestry of experiences from which all can benefit.
Hi Recycli, the benefit of this group is reading about such different experiences that confirm just how individual we are as well as ha ing access to such good advice and support. I too have GCA, diagnosed last April. Prednisolone increased to 40mg after i had managed to taper to 5mg with PMR. So disappointing but necessary. Since then i had tapered to 9mg in early December and had a flare/relapse of the GCA. On 15mg at the moment. I can empathise with your frustration at the loss of physical fitness. I've always been fit and active and have struggled to adjust to the limitations of PMR. This last increase of Prednisolone has taught me to be more patient and accept the limitations including the return of Moon Face 😝. I never lose sight of where i want to be. Even if i can't return to the level of fitness I had previously, I will still reach for the moon with a touch of realism that I may just manage a successful lift off! I find it hard to explain to anyone just how debilitating the condition is and how it impacts on daily life but i remain positive about the future. Good luck and keep dancing..
Had all those side effects Poltergeist. Sounds like your rheumy is as thoughtless as mine is. It's the fast taper that does it. You have suffered and GCA is nasty. I'm almost stable again so ready to reduce more carefully this time. We have to hope and dream for that is what motivates and keeps us pushing for better.
Hi Cycli! I've just emailed my male friend who is a keen cyclist who developed GCA 11 years ago and I've asked him for any tips to help you. It might take a day or two for him to get back to me. But what I will say meantime is that he now cycles 60 miles with his mates to a cafe and then cycles 60 miles back. He's 71. I seem to recall that he told me that he didn't do any cycling when he was ill - for about 2 years - but he's fit as a fiddle now! He is my guru! Although I have PMR as well, which apparently takes longer to 'overcome', I focus on how he's come through it and is out the other end.
I did smile at your post as there's no-one as impatient as me! I'm constantly overdoing it. These diseases - I have both - are so frustrating but, as I said in my reply to Ms Ambassador, this is the hand you've been dealt so play it to your best ability. Life is never what you expect and if you fight you'll only make yourself unhappy...and boy, am I proof of that!
Wish you luck and patience! I'll get back to you if my friend has any gems. Keep well.
brilliant and thanks for this. please do if and when. Any info on extent and loss of muscle and rebuilding would be so helpful. I keep active and hopeful. It's how I'm geared.
The thing about this disease and the pred is that it can effect people in much different ways.
I was diagnosed with PMR in Jan 2020. GCA came shortly afterwards, and 50mg of pred gave me a near normal life which I have maintained almost throughout. I had a flare in February as I reached 2mg and went back to 5mg and normal life. At the end of summer I started reducing again following doctor's advice of 1mg/month but cutting tablets into quarters and reducing weekly. I reached zero last week and feel fine.
On the exercise front I stopped running when I was diagnosed and switched to lots of walking. I won't return to running just yet because I want to give my adrenals plenty of time to recover fully.
I have an allotment that is such an incentive to keep moving and eat well!
my mother had an allotment and like everything in life she overdid it. Took on a second, and too much food. Always giving it away. made me laugh to remember.
should have added that we retired from running our designer/maker furniture company to renovate an upland farm 200 acres in all in Durham and rear 300 sheep and suckler herd. I am rebuilding and renovating a barn for my machines as i want to make some more designs I have in mind and the other barn is for my wife to have her own weaving studio. So we keep quite busy one way and another. The really big barn will have to wait longer as I want to start a cycling academy and that isn't remotely feasible at present.
Your post has inspired a very positive thread for the new year. I feel quite buoyed up. Never say never. Thanks all.
it's so good to hear the positive news isn't it?
It really, really is. Daunting and possible.
I only have PMR, but I never stopped “working out” during my journey. In the early days, I just walked, but three times a day. Had many ups and downs with pain and stiffness levels, but always managed to do something every day, if only to wash my car, or, just walk.Now, 3 1/2 years into this disease, I am down to 3 mg of pred daily. Still have some lower body stiffness in the morning, but not too bad. I am able to exercise in the gym 6 days a week, in the pool, on the bike, and lifting weights. I have found that specific upper body exercises have greatly helped the original pain in my shoulders due to PMR, over time.
I am now 73, and have regained most of my muscle, but still a little soft around to middle due to fat movement due to the pred. Not that bad, though. I know that everyone is different, but you should be optimistic about the future, and keep pushing forward as best you can.
-Ron
Cheers Ron. Great to hear your progress. How's the adrenal function doing now you are at that level? Good to hear muscle mass back and it is a matter of working at it . I know the work I will have to do to get there bot all these stories help and keep me positive. Thanks to everyone so far for such an uplifting and hopeful way to start into 2022
Deep water exercises are a key form of exercise for me as well. I am amazed what I can do in the water, activity wise, compared to when I’m on land! I usually attend three 45 minute classes a week.
I impress the ladies in attendance by singing along to whatever soundtrack is being played, and my ability to stay afloat in the deep end without a swimmers belt (thanks, I believe, to my relatively high BMI which affords me more buoyancy). My goal is to actually NEED a swimmers belt! Love to see the men join us women….just as good a workout for whomever partakes.
I’m one of those folks who was obese and inactive before PMR struck. So I’m not trying to get back to where I was. Rather, I’m doing my best to stay active and remain on a low carb/sugar eating plan to maintain a healthier lifestyle. This means weekly walks in good weather, the odd golf game, and starting in the New Year, online yoga.
I feel it’s much easier mentally and physically to go through my situation/process, than to adjust from fitness to limited abilities.
Good on you, and others, who exercise flexibility and make the adjustments that keep you active, even if it’s not at the level you are accustomed to. Comparing our abilities/life pre and post PMR/GCA is something we’ve all done before likely. Mourning the loss of our “old life” is part of the acceptance process. Even folks without a chronic illness go through a similar process as they age. It’s just that with PMR, that process is accelerated as our painful symptoms and stiffness can appear overnight, or worsen over a short period of time. Typically the average aging process affords us much more time to adjust mentally to the physical decline.
Keep up the great efforts with your trainer…great idea!
I had bilateral PE last October. Over it now and didn't go into hospital. Just sent home with prescription for blood thinners. We are all moulded from the same clay I think. The people on this forum represent the essence of what it takes to survive and overcome. A privilege to share the platform with so many.
Don’t know about adrenal recovery at this point, as my Rheumy is not worried about it. But, I plan to get an appointment with an Endo soon to get it checked out. No specific symptoms related to that that I know of.
In 2015 I was diagnosed with GCA. I watched my weight carefully, put on about 10 pounds and walked daily. As I thought I was near the end of tapering I planned a trip with Road Scholar in 2017 to celebrate. As the trip was walking parts of the Camino de Santiago, I knew I had to get in aerobic shape, as I also have bronchecstasis. So I walked 3 miles a day and 5 miles on weekends. And then a slight relapse and back up to 15 mg. I went anyway and it was the trip of a lifetime. Now it is 2021 and after 4 months of feeling poorly I developed night sweats and decided things were not going to get better. I had no appetite, lost weight, fatigue, always tired, achey, but not painful, thighs and calfs and pelvic girdle and then the night sweats. I saw my doc and after blood tests (CRP of 71) was sent to my rheumatologist. I was diagnosed with PMR. Now I am on 20mg and prednisone gave me instant relief. A miracle drug, but with side effects. So hang in there, and you can get back to normal activities with discipline and patience. Good luck!
Hi GinnyMa. Thank you for your story. That is a nasty surprise getting PMR when you had cleared GCA. So sorry. We challenge ourselves constantly and have to get over this disease one way or another. I know it's about patience but in truth we are none of us very good in that department judging by peoples stories. I'm glad you did the trip of a lifetime as like me with Paris/Nice and the Dolomites, no one can take that from you and you did it. Happy New Year.
Hi cycliFrom what my doctor told me GCA is an autoimmune disease and once you have it you are more susceptible to PMR. I felt so terrible that I am relieved and grateful that it is treatable condition. When I had GCA, in addition to walking the Camino, I traveled to Cuba with Road Scholar. GCA didn’t hold me back. But now with Covid and having a lung condition and my immune system shutting down due to prednisone, I wonder if I will ever feel safe to travel again. I have had my 80th birthday and the thoughts of no more travel makes me sad.
PMR and GCA are the same thing - just on different points in a spectrum. You can have "just" PMR, "just" GCA or if you are in the middle, a bit of both. Very inconsiderate really ...
academic.oup.com/rheumatolo...
Hi PMR Pro,Read your link and sorry to say it was way beyond my comprehension. Good thing I never became a doctor! My Rheumatologist did several tests that again I looked up and was confused. 3 of the 4 were high, P- ANCA Titer, Myeloperoxidase AB and a positive Anti Neutrophil Cytoplasmic Antibody. Proteinase-3AB seemed to be normal. Will wait for his explanation. But I did understand that my high Irish heritage made me susceptible!
Just look at Fig 1 to show how they overlap - that's the crucial bit!
If your ANCA titer was high enough - it suggests it isn't GCA, it is rarely ANCA positive.
Don't know about Irish heritage, but if that is a factor I wonder at mine, Irish, Jewish, German, English. Shan't say the % of each but it is some potporri of a mix
Cycli,We can blame the Vikings, who settled and intermarried all over Ireland! High incidence in Scandinavian and Northern Europe heritage. According to Ancestry, they rate me as 85% Irish DNA. 🍀
Been down that route - see this, written 4 years ago - healthunlocked.com/pmrgcauk...
Hi Cycli
As people have said, many of the people on this forum have had challenging journeys. Those who had simpler journeys have been and gone and ditched the pred. There must be some people who get off within a couple of years and are back to normal. In fact I know one, my mum, in fact. My journey has been more challenging because having got to 6 and feeling brilliant I had my third primary vaccine and am now back to 20 and may have to go higher because symptoms persist, and are worse than the first time round.
One thing you don't realise until you get low pred is that you can feel pretty good down there. It is a totally different ball game from being above 10. I was full of energy and strength at 8/7/6; felt better than I had for years actually.
I guess the danger is getting over-confident at that stage, and my motto is to be super-cautious tapering from now on.
As for yourself, I see you as a superhuman ironman so of course you will rebuild. But you are in a league of activity far beyond anyone else on this forum, and I guess your challenge is not to overdo things until it is completely safe... but look forward to lower doses to come and getting off altogether.
Hi Viveka. thank you for your story. I am not sure of your assessment of my physicality but I'll try and live up to it for you Flaring is a nasty blip in the process and difficult to manage as I have found. We all need to find our own workaround which allows us to do what we each need to achieve daily. That is the challenge we all face and therefore the reason why medics can't really understand the need to tailor doses and regimes away from their standard reduction programs. When you feel good there is the temptation to accelerate as I found and that is a mistake. It is still there just waiting for a chance to reawaken. I'm looking forward to the low doses. Happy New Year.
Hi Cycli. I developed GCA 10 years ago and lost my sight in right eye. At the time I was on a cycling holiday in Spain. After receiving amazing treatment in Cordoba Hospital the first thing I did was to make sure I could still ride my bike partially sighted. Thank goodness I could so I carried on with my cycling tour. Wow on 40 mg of Pred I could climb hills as well as Lance Armstrong. I have never stopped cycling. 3 years into my GCA and by that time I also had PMR I climbed Mount Ventoux. I suppose you are wandering how I did it. By pacing myself, resting after a long ride and before my yoga and Pilates I would spend 30 mins on the turbo. Something you haven't mentioned you use. I'm sure if you started by doing even 15 mins on a turbo a few times a week you would find a difference in your fitness. Also remember your warm up and warm down exercises. I still have flares in PMR am on 15 mg if Pred and 4 years ago I was diagnosed with Polycythemia Vera and take a daily chemo based drug. . I still enjoy riding Audax, 5 this year my longest 200k. I'm not trying to boast just to point out that it can be done if you pace yourself and listen to your body. As Eddy Merckx said "Ride as much or as little, or as long or as short as you feel. BUT RIDE. Good luck.
Hi Heather. What a story and thank you so much for sharing. Another medic story of shame and your loss. So sorry. You rose from that to glory in my eyes. I fully understand why you did what you did and have also recovered miraculously from many serious injuries to conquer yet another epic trip. We all however meet our nemesis at some stage and this one has got me for the present well and truly. It is taking all my efforts to find a satisfactory work around that allows me to pursue my aims without too much compromise, but I have to accept that for the present I have to play by its rules. Ventoux is a wonderful climb and congratulations on conquering it. I did it on day 4 of our Paris Nice 6 day ride of 670 miles. Was a wonderful experience. When I got to the top and stopped for a lunch break I found a 75 year old at our van who had a spoke broken and so I took his back wheel off and removed his cassette, put a spare spoke I had in , tensioned it and rebuilt the cassette. He was then able to safely descend. I never do any trip like that without the tools to fix anything. Was nice to be able to help him. I do have a turbo and am going to schedule this in when I am able. I also have rollers which I prefer but balance has been an issue with GCA so not an option at present. Ditto the bike and riding. Hearing impairment and blurry vision don't help. Getting over the flare and starting tapering again are the key targets for me at present. I have lost too much muscle and am weak as a kittten at present. The strain would only stress the condition and likely flare. My left ventricle has been affected and I can't overexert at present. Need to rebuild carefully. Serious hills are a strain and my farm is at the end of a Category 3 climb so every ride out is a 10% climb and return is a cat.3. Too much stress even with the gearing but we will get there. It is something to get around and I am working on a plan this year. Happy New Year.
I too have hope that someday I can be somewhat back to normal. After a lifetime of being healthy and active this was certainly a shock. I’m one of those people who never even took an aspirin and now I’m filling my body with literally poison. I know prednisone is a necessary evil just like chemotherapy for cancer patients. I don’t need to run a marathon or be in the Olympics, I just want to take a walk without gasping for air. I want to travel again which I can’t do right now. Not only because I don’t feel well but because of COVID. I want to go outside and do yard work without stopping after 15 minutes because I just can’t do it.
I don’t care what anyone says I will always have hope
totally get it nallufl24. Hope is everything and drive but as I have had to accept there is also patience and grit to get through the bad patches. Keep positive and together we will all come through. The stories on here attest to that. Have a happier new year.
You are not filling your body with poison, and honestly that is not the way to view it. If the inflammation caused by your illness is left to increase without being control, it will affect all parts of your body leading to a lot more serious issues.
I appreciate it’s a complete turnaround of life for you, but as you say - you have hope - but that hope at the moment needs some assistance from the drugs….
Life will be better, you just have to dig deeper (metaphorically obviously not literally!) at the moment.
From one other who has had to dig deep, and got through it to enjoy a good life - healthunlocked.com/pmrgcauk...
You are of course correct DL but I totally get how one thinks of them that way. It's the dependence on drugs which seriously modify our physiologies and metabolism that induces these thoughts.
I’m afraid l can’t agree with your comparison of Steroids to Chemotherapy - you actually take a lot more steroids while you are on Chemotherapy……And, the long term effects of Chemo stay with you forever, believe me l know.
You will adjust in time….
Kind Regards
MrsN
We all have hope - but if you use the pred and lifestyle adjustments properly you can have a decent life. Don't confuse the restrictions of Covid with the effect of PMR and pred.
I have travelled all over the world since PMR, pred made it easier, and have been to Aus, China, S Korea, Japan (all separate trips), Canada and the USA and motoring all over Europe. I skied until injury and other illness made it hard. There are things I can't do - or not the way I used to do them and my retirement hasn't been quite been what I'd hoped but some of the restrictions weren't mine, but related to my husband's illnesses and, latterly, Covid. They are different.
Although not from personal experience, second hand I can tell you what chemo and radiotherapy does to the body - and my 12 years of relatively high dose pred for PMR has had far less detrimental effect on me than my husband's chemo did on him long term and my pred gave me back a life while his experience took a lot away from his later life.
Well people I am adding to this blog/thread. False hope I'm afraid. Got to 31.5mg and flared again. Now on 40mg and finally seems better. All major symptoms seem "controlled so maybe the inflammation is being handled. Going to stay here for some time until sure. GP is finally onside and accepting GCA as the cause. Rheumatologist needs to be changed so that's the next step. Hopefully all moving forward to the same beat this time, dead slow. this disease is a real doozy. Anyone out there lost the balance of flavours as a result? sweet things have become unpleasant leaving a slight bitterness aftertaste. So vegetables like carrots, parsnips, onion,taste off and slightly unpleasant. Making my cooking and food choices very limited at present. Needless to say puddings are out. I think it might be a reaction to beta blocker and ramipiril for reducing pulse.
Sure you haven't had Covid - that is an effect it can have on taste, as well as losing it altogether.
My hubby was on beta blocker and ramipril never affected his taste, only time it was strange was after triple bypass. As PMRpro says - Covid maybe ?
well that's good to know.
Hi cycli 😊
Good to hear from you. Sorry to hear you flared, but glad you’re stable again now (albeit at 40mg).
No, I haven’t experienced the taste changes you describe - although I did open a can of tonic water just now and it smelled quite revoltingly of sulphur!! Horrid…..not sure what that was about 🤷♀️
All the best, good luck with the rheumy x
thanks everyone. Don't know about covid. I'll do a lateral and see but don't think so although maybe that contributed to the flare!! how the heck does one differentiate...maybe the taste thing is a clue. If so then it will disappear . I only go into shop once a week and wear a mask otherwise I'm gloriously isolated on our farm
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Any advice for first Rheumy appointment since diagnosis ?Moderation team
