Today I had my 6monthly appointment with my new rheumatologist Dr. Coath at Southend Hospital (I was seeing Prof Dasgupta but he's now retired from his NHS practice)
It's my second appointment with Dr. Coath and how refreshing and reassuring it was to speak to a medical professional who genuinely seems completely clued up about PMR/GCA and steroids.
She was very happy with all my blood test results, and praised the various preventative measures I had in place to minimise steroid side effects. She also fully supported my very slow and 'considered' management of a tapering strategy that's currently working successfully for me..... all of this which I have learnt from advice offered through this forum!.... (Thankyou to all those people who continually make such a difference and help remove the 'fear'.)
I returned home from my appointment feeling proud of my little 'successes', motivated to continue meeting any future challenges with determination and resolve and reassured that I was doing all the right things that would maximise my own personal health and well-being.
In the grand scheme of things, it's not much, but I feel very fortunate in so many respects and today has been a very positive day that's completely lifted my spirits.
I'm of course not 'cured' and I've no doubt at all that there'll be further challenges ahead, but today.....life feels a little 'lighter'.
PMR & GCA can frequently cause us to feel very low and for a lot of very good reasons, so when we do experience any small triumph, it's important to acknowledge it, embrace it and enjoy it.
We all of us experience our own individual struggles.... some more debilitating and severe than others, and it's easy to become lost in that mirky 'fog' of PMR/GCA. This means we can sometimes miss...or even dismiss those moments of release, relief & respite from that daily struggle.
We must keep our eyes open and our minds alert for these moments because if we know they will present themselves, then we will be far better equipped to deal with those bad days, should they present themselves!
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Kendrew
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you are the day brightener I really need!!! so glad you had a good one. I am convinced my PMR is gone and my only problem is prednisone withdrawal. doc has ordered Cortisol Test and inflammation rate tests and one other. And I will continue to taper. am now at .25mg!!! after 5 years and 3 months perhaps on May Day I will be finished. Did not ask for a bone density. Am too worried about the results right now and will not take alondreic acid.. so no need for it. But eventually I will have it checked again. Anyway feeling very optimistic. and thanks to your post..even better!
Well done to you.....and fingers crossed for you too! 👏 Sounds very promising.
Just to also add, that I had to take Alendronic Acid for 3yrs because I was osteoporotic, but I personally didn't actually experience any obvious side effects thankfully.
I now no longer take it, as my most recent DEXA scan showed significant improvement in my bone health.
I hated being on AA because of the potential side effects, but I also felt that the risk of falls, bone breakages and general deterioration of bone health if I didn't take it, could result in far more serious consequences... particularly long term.
Just a little food for thought!
I haven't been keeping up with my yoga in recent months but seeing your name on your post has spurred me into action again. 😄
SO pleased to hear you had this uplifting, reassuring, positive experience, Kendrew. I recognise your emotions which are are a far cry from those felt when that all important review waited for patiently ends in a kind of despair resulting from not being listened to. Now you can go forward with a spring in your step and a clear mind and continuing positivity.xx
It is so good to read such a positive post! With a good Consultant like that and the support that you receive from this forum I hope that you will continue to go from strength to strength. Continue to take good care of yourself Kendrew 💐 x
I was reading you’re bio which is really interesting and encouraging.
I have lupus and have had for 30 years. I went to a 4 day week on the advice of my consultant who now suggests I should only do 3 days. I do enjoy my work but find by Thursday eve I am completely wiped out and have little energy for much else.
I’ve just had a weeks annual leave pottering about and some light excercise and I feel a lot better, but can’t afford to give up work yet.
I’m interested in your tapering of steroids I had to increase to 15 mg last year due to infection and had managed to get to10.5 but then felt like I’d been kicked all over so but then up to 12 which within 48 hours meant I felt much better
PMR is polymyalgia rheumatica, GCA is giant cell arteritis, related vasculitis conditions but PMR has a rheumatic presentation affecting muscles and the most feared thing with GCA is loss of sight which can be sudden, total and irreversible. The only management strategy available is corticosteroids unless you qualify for Actemra which is a biologic steroid sparer, it still doesn't cure and is limited in the UK,
I also post on the LupusUK forum when there is something there I know about.
I can't add to Pro's response other than to say look at FAQ'S here and click on T for Tapering where you'll find one of the regimes I've been using. (DSNS method)
It was very clear that she was pretty clued up and I liked the way she never rushed me or made me feel in a position where I felt uncomfortable questioning her. She was very thorough whilst being very approachable too and I definitely feel in safe and well-informed hands.
That is so heartening when a Rheumatolgist listens, talks, discusses with their patients, like mine and yours does, others can arrogantly dictate, I saw 2 like that until I found Dr Max Yates.My sister with RA went to my hospital yesterday for an appointment, she hadn't seen him before and hope she dosen't have to again!....he said after 8 years with taking a DMARD, all RA burns its self out!...and the treatment is toxic!....he said she dosen't hsve swollen joints so it must be gone, to which my sister said not swollen because of the DMARD!....next year she has to wean off.....hopefully she can see my Rheumy.......yes, how they are with us makes all the difference....my sister couldn't sleep last night worrying about it!....
So good to hear about your positive experience 😁 I am going for my first actual appointment on April 5th , face to face with an actual doctor ( Rheumatologist) , I’ve never actually spoken to or seen my GP who continues to prescribe my Pred in response to my filled out refill form posted into the box at reception 🤪) I was self diagnosed in May 2022, begged for Pred ( see initial posts) . Strange that I had to beg and now am freely prescribed whatever I ask for with no follow up , not even a phone call!. Referred to Rheumatologist and appointment given for Dec 4th 2022 but I had a bad dose of flu so couldn’t go . Rescheduled for April 5th 2023 . Don’t think I’m going to learn anything but am going out of interest. Don’t want to be so arrogant either to think I can share my new knowledge, but let’s see what I find! . I feel my informed guidance has been 100% from this site 😁. . I may ask for a Cortisol check as I’m on a taper from 5 to 4.5’at the moment, but if no joy I know I can get one online !
Excellent pick me up and inspirational comment. I’m so very happy for you. Enjoy feeling good about yourself and the hard fought journey to this point. We all know that journey only too well. Keep up the good work. Thank you for sharing this. Wishing you all the best.
It's really important to have a consultant who speaks 'your language'. I asked to change mine because I used to come out of every appointment feeling like a failure and very upset.
Now, with my new consultant, every little win is acknowledged and I feel empowered. Even if there's a set back, it's not a failure.
Thankyou. Yes.... you're absolutely right and I'm pleased you too are now with a new consultant who's fulfilling his role appropriately in order to help you both manage your condition together.
Such a positive and encouraging post Kendrew, long may it continue. It helps the rest of us tremendously, to hear good stories, so thank you for sharing.
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