Happy post Easter everyone. It has been 4 months since I last posted an update and it has been a rocky passage since. Was up to 35mg pred. and tried to reduce again when stable but failed again at 22.5mg pred. Depressing really but I have learnt a lot in the interim. I've been quiet trying to work it out. The GCA symptoms shifted from the right side of my head to the left and are still there when they show. I can't explain this but scalp tenderness, throbbing temple, eye pressure and headache all have shifted there. Chest pains, and rib pain when trying to breathe deeply plus shoulder and back pain are probably PMR. My recent blood tests confirmed this showing 26 ESR which has gone up to 27 and serum C reactive protein has gone down from 29 to 20. This latest from 2 weeks ago sparked a stand in rheumatologist to up my pred. to 30mg. In 2 weeks the condition has improved and I am able to breathe better and walk easier without it feeling like I'm dragging lead weights around. All in all I am sleeping better and able to potter around the farm doing what I can . I'm stuck on 30mg for now until the bloods go back to near zero which they were for a couple of months last September. Good news is that I have a recommendation and appointment for a second opinion from a recommended rheumatologist at James Cook in Middlesbrough in June so I am hopeful that I can finally move forward with someone who doesn't think anyone 50 or under has been wrongly diagnosed with this disease. At 70 I clearly qualify but its not helpful to have a consultant with a fixed idea. Opthalmologist is brilliant. Had issues with inability to focus . Split horizon wouldn't coalesce into one view. Since increasing pred this issue has improved to almost "normal" for me. He has offered a solution with prismatic lenses which can adjust the view to help and as peel on can be removed when condition changes. Cardiac consultant also excellent and keen to explain things properly. Slightly weakened valve but otherwise fully functional and heartrate stabilized. I'm safe to put heart on stress to exercise. If only I had the energy or muscle to take advantage!! Basically learning to adjust and still hopeful for better. I'm much more certain of my condition and reaction to drugs and symptoms. I suppose that's a time related situation. Time to Aaccept , Accommodate and then Adjust my 3A's.
10 months into PMR and GCA update: Happy post... - PMRGCAuk
10 months into PMR and GCA update
Good to hear from, must be Viking genes (!) but was thinking about you only this morning.
Glad you are getting around to some more positive answers, so let’s hop it continues with new Rheumy.
Meanwhile take care…🌸
cheers DL.
Wondered how you were doing, but decided you must be OK. I was wrong.
Hopefully your new Consultant will be a good one.
Your first post was July 2021 so less than one year and it has been a rocky road for you.
If this helps here is my story. You don't have to read it that is up to you.
I was diagnosed in February started on 60mg of pred. Then 5 mg steps down and in the November, first flare and back up to 60mg. It then took another 6 months to get down to 20mg and then bingo second flare, this time back up to 40 mg. Second time the Consultant decided no more than 10% drop at a time and only once a month.
It is not uncommon to have two flares within a two year period.
We did not have, at that time, any tapering methods. So it was choose a day to drop and then clear the decks for 5 days and ride it out.............if it had settled down then wait another 4 weeks etc.
Then I met Ragnar and he had a plan which he had worked out and shared it with us. PMRpro and I then tweaked it and called them 'Dead Slow and Nearly Stop' and 'Tortoise & Hare'. So more more than 10% at time and then once down to 10mg, a monthly plan.
We shared these but made sure that people understood this system was not medically approved and to talk it over with their medics.
The rest is history. DL for one worked out a plan and so did others.
Finally a lead researcher was interested and tacked DSNS onto another research project, just a small one. It came up trumps.
Doctor Sarah's Mackie's statement which we published in our Newsletter.
These two plans have been sent out, free of charge on request, to many patients over
the past 4 years. and they have worked for many patients. Dr Sarah Mackie was
interested and the following is the outcome:
Dr Sarah Mackie a leading Researcher into GCA & PMR has kindly allowed us to
inform you of progress being made. Dr Mackie emphasizes that you should always
talk to your own Doctor. We have also stressed this whenever the plans have been
sent to patients.
"We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as
part of the FACT study protocol.
The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a
research ethics committee; this study isn’t actually designed to test different steroid
reducing regimes, but is an exploration into causes of fatigue in people taking long-term
steroids.
We incorporated DSNS as an option on the basis that we know that DSNS, or something
like it, is already used by many patients in the community and because we didn’t
necessarily want to taper steroids over-fast in people who were experiencing fatigue. The
study is still ongoing.
So far it seems that some patients find that DSNS suits them well, especially those whose
symptoms tend to flare up when they step down their steroid dose.
However, DSNS will not suit everyone. DSNS is just one of various different approaches to
tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –
you should always talk to your own doctor about what might be best for you.”
Dr Sarah Mackie, rheumatologist, Leeds."
So slow but steady and it is not a race, both PMR & GCA come when they want and go when they want, we just have to manage it as best we can. Some other auto-immune illnesses are just the same. When your body is attacking itself it is extremely difficult to live with it and the hardest part is learning to live with it.
My GCA lasted 5 years and then decided to go away. I do know some people whose GCA went away quite quickly (ie 1 or 2 years) but they were people who were on the trial with TCZ. In my experience it looks as though 5 years is the average.
Hopefully TCZ will be shown to work and eventually the cost will come down.
I wish you a more steady and successful journey and do let us know how you get on with the new Consultant.
Funnily enough - like DL I was also wondering about you this morning. Good to hear that things are settling even if not gone.
Your 3 As are the most important things about the whole journey so a valuable addition to the armoury.
Great minds and all that! 😳
Won't go any further into that 
Best not!
Sounds like a tough time so sending you a 4 th A - A cheery hug
Hug gratefully received stills. hope you are ok.
I should have said that the swelling from fluid in legs has almost disappeared with the increase in pred. so there looks to be a direct correlation to the blood inflammation and fluid, but it's still not conclusive. As the pred. effect wear off towards the evening and symptoms reappear then there is an increase in fluid swelling. It is pitiful to note how little I seem able to achieve each day before the energy tank runs empty. Looking like a long, slow haul. Happy days.
Those 3A's will serve you well, your spirit and attitude as well. My best to you!!💕
Hello, and sorry to hear of your health issues. My use of Pred caused cataracts to develop more quickly, and I had both eyes done successfully, but whilst waiting for the second op I had to use the stick on prism lens you are talking about and it worked really well. Good luck with the rest of your treatment!
Gosh you have a lot to deal with. Well done for a positive outlook. Keep going ❤️
Very kind of you MiloC. I'm not sure I have more than some on here. I've read their profiles and mine pales compared to their struggles. I'm probably more vocal in describing things as I am trying to understand this disease and work out strategies for keeping going. It's an interesting journey and there are some positives. It forces you to reevaluate everything you previously planned to achieve and be more realistic with them. It shows you that assumptions you previously made on how others could improve their health may have been wrong. It improves your empathy with others. Those of us affected with this are quite often in the category of driven personalities who take their pursuits to an extreme and I think we are incapable of just letting this disease take control. Unfortunately we all learn that it does require us to adjust our expectations and the pred. effectively does the rest until we are in remission and off the pred. I'm just trying to get a handle on the effects, symptoms and outcomes as it progresses and using the wisdom encapsulated on this forum to drive my enquiries. I hold the view that there is light at the end of the tunnel and that I can rebuild lost muscle and stamina with some possibility to return to some resemblance of the person I was before this disease. I just don't know when and I will have to take account of the effect of ageing into that.
Soooo sorry you are still going through the mill, Cycli. Your positive attitude will help you all the way one day. And, if you can’t exactly get back to your old ‘normal, you will have plenty of energy left to enjoy life as you did before.Don’t work too hard on the farm if possible - things will have to wait till your energy returns.
thank you Constance. Nice to hear from you. It will be a new normal I am sure. Nothing will ever be the same again but it can still be good I hope. Needs must on the farm but I try to measure the work now. It's been glorious weather here recently and nearly 400 lambs. Wonderful to see them frolicking. Snipe, woodcock, wheatears, curlews, golden plover, lapwings, barn, tawny, little owls, fieldfare, grey partridge, black grouse, buzzards, kites, sparrow hawk, kestrel and a myriad of smaller birds all inhabit the farm and nest. Swallows and house martins have returned. Hares, deer, stoats and other wildlife seem to like it here. Otters on our river with dippers, goosanders, teal, mallard, oyster catchers all on our river. Sea trout, brown trout, salmon, grayling in the river. It is a good life.
A certainly different life than ANY of us on this forum! Mega interesting and MEGA hard work. 👏👏
I'm sure there is great diversity here on the forum and I'll bet there are some who do as much or more. My friends thought me mad to retire to renovate a hill farm and learn to work it. I told them that one had to do something not believing I would ever be in this state. Glad we got the bulk of renovation done before this disease and now it's a case of doing what I can until remission. One never knows what is around the corner in life but you have to plan regardless or you are rudderless.
Oh dear - then I am rudderless!!😂😂 I don’t plan things. I remember as a child I used to plan things and was SO disappointed when they didn’t evolve. Since then I have always thought “wait and see - something will turn up” and it always has. 🤩
seems to have worked well for you Constance 
Well it has done for the last 82 years so I’ll stick to being rudderless.🤪
Well I’m not particularly rudderless, but can’t t say I plan too far in advance. Am apt to make a snap decisions on things -which usually work out okay. As you say, something always turns up - and you do need a touch of spontaneity to keep life interesting 😊
OK. you two rudderless supremoes I didn't say my plans always came to fruition. I guess that it depends on your nature and winging it in all circumstances just seems like gambling on the throw of the dice. You never know what is around the next bend and have to be prepared to adjust and alter your expectations. If this disease teaches us nothing else then at least we come to really understand what this means. You can't build a business with employees relying on their wages by just hoping something turns up just as you can't always expect your projections of potential work opportunities to be realised in the way you planned. It is a matter of adaptability and opportunism. I've always believed that fortune favours the prepared mind.
But what happens in life is often NOT “prepared” (PMR is only one example for instance - and that changed all our lives considerably). 🤷♀️
of course. But much of what we do in life can be planned. Just look at your everyday life. I'll bet you make lists. That's planning. You work out what you can achieve each day, that's planning. It's just a matter of degree at what level of control you stop. The aim is to do everything possible to reduce the variables so that when the unexpected happens you are more capable to cope not having other distractions to deal with. That reduces the stress and is a plus.
😂😂😂 The only lists I make are shopping lists.We just live in different worlds cycli! 🤩🦋🌾
love it Constance. I would love to live in that world but my sad brain and drive has never let me. I simply can't stop the way it works and believe me in 70+ years I have truly tried. Accepting that I am not in control of this disease has been a really difficult journey.
"The aim is to do everything possible to reduce the variables so that when the unexpected happens you are more capable to cope not having other distractions to deal with. That reduces the stress and is a plus."
Not always - if you are governed by a desire to be in control, when it goes pear-shaped it can be very distressing. As you are finding.
I wouldn’t say I’m rudderless,I very organised it many ways -but found in life trying to be too set with plans doesn’t always work out well . Probably being married to a military man where even the best laid plans can change overnight made me realise even more how flexible you need to be.
But do appreciate it’s not for everyone .
In truth, very few people are rudderless DL. It's all a matter of degree and our natures. If however, my workload is the main contributing factor in these flares and increase in the inflammatory condition then I'll have no option but to rethink everything for now. Time will tell.
It will, and I know changing your work ethic etc is not easy...we all deal with life differently, so as we say ad infinitum - one size doesn't fit all, so you have to find the best size for you!
Thanks DL. I'll get there eventually. It's an interesting dynamic and I've only been at it for 10 months so probably par for the course with the two of them. I've certainly not found the right balance yet but will do eventually.
Personally I have always thought - “however does cycli cope with all that work - with PMR”??? Difficult for most of us to cope every day with a “normal load” of work - and taking on a farm is unbelievable. Superman, or what? Wish you all the best, C. 🍀🍀🍀
You are so kind but no superman as you can see. Probably more like stubborn stupidity. I'm where I am so will see it through one way or another. It's certainly a challenge.
Quite! 🤔💐
so to update. Almost stable but still getting symptoms of both PMR and GCA last thing before the next dose of pred. Managing but not there yet. Bloods at end of month so hoping for improvement. Ferratin level up to 828 so now being monitored. inflammation and sedimentation still too high. Helped set-up and foot bath 400 sheep and lambs yesterday. Worst session in 10years. Blooming lambs just didn't want to go through the trough. All done eventually and then prepared supper so all in all a busy day. All okay today and feel quite good. Still on 30mg pred. and increased bisoprolol to 10mg under advisement and observation. BP and heart rate better and an improvement. Eye focusing issue seems to have cleared for now and although swelling in legs has slightly returned at end of day it is managed by late night bath, elevation and sleep. Work in progress but managing.
Did you mean this specifically for Constance or was it a general update?
just a general update although it seemed a relevant response since Constance mentioned farm work. Maybe I'll do a daily work diary sometime when I think something will stay constant.
Just others may not see it - not that there are any notifications this morning!!!
same here. Haven't had notifications for days. I log on directly now.
PLEASE complain!!!! They think it is just DL and me who have these problems and they can be rather supercilious! If everyone who didn't get their notifications told them they might pull their fingers out!
Ditto, ditto and ditto to PMRpro's comments.....😊
ok. will do.
I think of you every time I go near the cake tin! Sorry to hear you’re still having a tough time but with your positive outlook you’ll cope ok no matter what. Good luck x
lovely to hear from you. Sorry if I traumatised your cake enjoyment. The odd treat never hurts
It's always true. Using muscles that aren't used to doing such work always comes at a cost, but repetition if you are able builds them up.
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