I saw a GP in person this week for the first time in ages and she was great. Gave me a full 20 minutes and really listened 😊
She accepts that i am having real difficulty getting below 7mg (am currently trying to get to 6.5). She told me not to try at the moment to get lower than 6mg as she will be consulting an endocrinologist for advice. (This bit I’m not so happy with, but it’s a plan, and she is the medic… ). Thinks I may need to go on to hydrocortisone.
Also agrees that I have severe OA in multiple joints and will review pain control (I’m currently on codeine 15mg, paracetamol and ibuprofen gel). Concerned that pred taper will result in more OA pain but I felt she’d ’have my back’ on this.
Re fatigue she hopes endo can help. If not, thinks I may have long covid and will refer me to clinic.
To drop now to 6mg and bloods to betaken in one month.
I know it doesn’t solve much but finally, after nearly four years of PMR and GCA, I feel I’ve met a doctor who’s taking me seriously 🎉xx
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There isn't anything an endo can do at the dose you are on really - not that they can do much anyway.
But you say you can't get under 7mg - WHY can't you? If it is the PMR, and it really sounds as if it is, your adrenal function is immaterial at present.
It’s both increasing pain and overwhelming fatigue at under 7mg. I too don’t hold out hope that the endo will be able to help as I’d need to get lower. I did put this to her but she disagreed, said endo advice was essential, so I’ll go with the flow for the moment and see if I can taper to 6mg 🧘♀️
ps it was the rheumy who first suggested endo review and wrote to GP to this effect - so I guess she may be following medical protocols for the moment
If it is increasing pain - that is PMR still active. When your body rebels repeatedly at a similar dose it is telling you you have arrived at the lowest effective dose. I have no idea what she thinks the endo advice can change at your current dose and yes, it may be essential at some point. But even they aren't magicians!!
I think it is an encouraging sign that she is seeking advice from an endocrinologist. GPs are generalists. It's clear she understands the limitations of her knowledge and where to go for advice - for her and for you. It looks as though she is taking a considered approach to all the different elements.
This is so similar to my story. Got the Dr to help me recently been on 7 for 2 years since last big flare up. Under 8 can’t sleep for muscular aches and pains fatigue during the day no motivation or interest in anything. No strength or stamina. PMR for 8 years never really gone away? He really listened too. OA for over 20 years always managed but got worse in 2017 when I needed a total hip replacement. Was down to 5 then. OA got worse under 7 could be coincidence? Every time I go down just 1/2mg on DSNS taper PMR raised its head. After 3 weeks I revert back to 8. Too miserable will settle for a slightly better QOL. Never had a raised CRP since diagnosis. In 2018 Dr said I didn’t have it. Changed him. Rheumatologist said I would probably have to stay on 5 mg for life then signed me off after 4 appointments. Joined Prof Sarah Mackies Sterling Trial at Chappell Allerton hospital Leeds in February this year. Designed for people who struggle to taper at this point with long term PMR. She is not my Rheumatologist but has been extremely supportive through the trial. I tried Methotrexate but had to stop after 5 weeks as I got Microscopic Colitis. Could be just another autoimmune condition as you can be prone to them once you’ve got one. So not necessarily the MTX. Waiting for Orthopeadics to get back to me with results on my Sacroiliac joint function X-rays. Had two steroid injections at pain clinic didn’t work. Take cocodamol and gabapentin for hip back groin and leg pain. Nothing like muscular Pmr pain. I can’t walk now and have to use a mobility scooter and stairlift. Must say I’m exceptionally fat due to being idle. I have reduced carbs but not eliminated then. Could do better? Feels like self harming if I eat a piece of toast! After I got Colitis I lost 8lb. So it goes to show in 700 calories a day I would loose weight. Sitting here hungry with no independence and limited distractions is really hard. On the bright side but Ido have Parker! I volunteer for the charity and meet people much worse of than me at Support Groups and on Zoom. This give me purpose. I think what I’m saying is your not alone. All the lovely people on here who answer questions and offer support are invaluable. Especially when feeling low. It’s good to write down how you feel even if you don’t want an answer. Nowt like a good rant I say. Sometimes you might not agree with what’s said or it doesn’t suit at the time but that might depend on how you are feeling too. Best thing from your post is “The Dr Listened”. I think the younger ones are getting better. They are at my surgery. Long may it continue and you get sorted. Main thing is don’t stop trying. Your worth it.
Honestly reading your post brought a lump to my throat in recognition of our similarities, even though I am fortunate enough to mobilise at least a bit more than you. The issue of OA in so many joints, being stuck (in my case, up to now, at 7mg) and your phrase “sitting here hungry with no independence and few distractions “, really struck a chord. As did your appreciation of all the lovely people on here who do so much to help 😊
I used to volunteer reading books and newspapers for the blind, but had to give it up as I can’t get there and also can’t see well enough now to read a book (thank goodness for accessibility settings and enlarged fonts on the iPad, also for podcasts and audible books). Maybe one day I’ll find another way of volunteering!
Fortunately, I also have a very helpful hubby (I’m sure Parker is the gold standard!) He does a lot of the cooking now, looks out for steps and slopes for me when we do get out, etc. I have a great deal to be thankful for 😊
Good luck to you Estellmac and thank you so much for replying 💐xx
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Stomach pain saga- another update and Rheumy appointment 
Good Rheumy appointment 
Down to 6mg but feeling it! Shall I persevere? 
PMR diagnosis from GP
travel sickness
