Well back from the hospital after seeing the rheumatologist after waiting all year to see him and he's said my PMR has gone into remission but unfortunately, I have now developed rheumatoid arthritis in both hands/wrists, hips and shoulders. ☹️
Rheumatologist Appointment: Well back from the... - PMRGCAuk
Rheumatologist Appointment
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Alan7690
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DorsetLadyPMRGCAuk volunteer
What did he base that comment on?
Are you still on Pred - and if so what dose?
If you do have RA, there are a few on here in same situation, so don't leave us yet.... but there is a RA forum - see here -
He based his comment on blood tests from my GP last week which showed my ESR was well into the area that is ok. He also took ultrasounds on my hand etc which showed a lot of inflammation and damage to joints and took x-rays.
Still on 5mg Pred for now but looking at moving me to methotrexate
I'm not going anywhere lol I can still support others and help
He based his comment on blood tests from my GP last week which showed my ESR was well into the area that is ok
.. well that's because the Pred is doing what it's supposed to, not necessarily that PMR is in remission... and it’s not impossible for you to have both.
... although he may be correct about the PMR , hope he is.
I really despair of both the knowledge and common sense of some members of our medical profession.
I have had RA for 9 years . My diagnosis was seronegative RA as nothing showed in blood tests. I was put on MXT. A year ago I developed awful muscular pain in upper arms and neck and felt generally quite ill. . My locum Rheumy at the time diagnosed PMR and put me on 12.5 prednisalone. This worked really well but I’ve gradually been reducing it as instructed . Months later I saw another locum rheumy ( our department is a total mess) who said she didn’t think I had PMR at all and that I had to reduce the steroids as quickly as possible. She said you’ll feel rough but you have to deal with that ! I’m due for another appointment with whoever, and I just don’t where I am. It’s possible the PMR symptoms were due to the last vaccine as I understand it can be linked .
I hope you feel better with MXT . It’s all very confusing and doctors seem to have conflicting views on diagnoses and treatments, good luck
Did you have scans, please? My GP thinks I have sero negative RA, and I’m due to have hand scans (hands are my worst bit), consultant says he doesn’t think I have & that the hand scans will prove it. Thanks, S x
No I didn’t have scans but it’s a good idea. I was diagnosed simply on symptoms . I had pain in lots of joints but the hands were the worst . It’s different from OA pain as mine was more knuckles and base of fingers . Swelling too . Hope you get a diagnosis soon
Yes, my hands are the worst part, too, swelling, especially in mornings…and yes, knuckles & base of fingers…but I definitely have OA in thumbs, wrists, so it makes diagnosis hard! My rheumy said the same, you’re not alone…get off the steroids asap, & if they make you feel ill, just fight through it. I’m down to 2mg, & may try 1.5mg soon-ish! I don’t want to go on MXT, & hoping it’s not RA (as I already have a bucketload of ‘diseases’ & feel like I’m going for the Guinness book of records!) If my rheumy is correct, I would think scans would be good for you, but perhaps you just don’t need them as they are 100% sure you have RA! Good luck!
Ok see what he says after today's blood's and go from there
I saw my Rheumatologist today and we had a long talk about the end of PMR/GCA and the toll it takes on the body. She is making an appointment with a good physio for me and has advised walks in beautiful surroundings with few people, and swimming or at least bobbing about in lukewarm water. We talked about a crossroads where you could kind of give in and become more and more disabled, alternatively I could start a programme of informed fitness - very gently to begin with, increasing the physical demands. At the same time reducing my 5 mg dose of Pred by half a 1 mg tablet using the dead slow nearly stop tapering programme outlined. When I reached 3 mgs I should see my Endocrinologist for a Synacthen test to ensure that my adrenals are likely to recover. From nil Pred it will still take the best part of a year to recover completely. She wouldn’t dream of telling me that I was completely in remission, it is impossible to tell nor would she explain away my current symptoms as another condition (RA) without being 100% sure. I haven’t really captured how much good this talk did me and how determined I now feel to get my health and strength back while I can. I wish I could share her, this is what we need. I am buzzing.
For the last few years I’ve been walking 1.5 - 2.5 miles daily depending on the weather (cold ok, heavy rain not) which i feel has helped me.
I am a long way from that but I am determined to start. The pandemic had a really negative impact on my motivation, more than I realised. Having my grandsons for 6 weeks taught me that I can do more than I thought with the right incentive. One step at a time. Well done you that is impressive. Good luck going forward.
I started the Nuffield Health Joint Pain programme 6 weeks ago and I'm half way through the 12-week course. I can already feel the benefit. It is a commitment to go to the Gym twice a week (with an optional workout at home in between!) but it's what I needed. We are a mixed group of 11, with OA, RA, Fibro and me with PMR! We can work at our own level, as our 'Rehab Specialist' gives us standing or seated alternatives to most of the exercises. I think that 7 years on and tapering for the second time to 3mg, I'm at the right stage to do this. It's entirely free of charge and we get full membership of the whole place, so I use the pool to walk up and down (no deep end!) or jog on the spot, as well as having a gentle swim.
Signing up for this has motivated me to start being more active in other ways, such as going for a walk and doing more in the garden and house!
I am seeing our Rheumatologist in a month's time and looking foward to telling her what I'm doing. It's good to read that you are "buzzing"!
That sounds fantastic Rugger - how - where?
Did you not see the Nuffield programme video for PMRGCA week?
No I was busy being a full time Granny, I guess.
Does this link work?
vimeo.com/834012313?share=copy
You will have create a Vimeo account
Thank you for this. Vimeo doesn’t appear to remember me and there is no forgot password facility. I will look into it now I have my life back. It sounds ideal.
Yes there is - it wouldn't recognise me either despite the password supposedly being stored! So I fiddled around a bit and did see a "forgot password" option at some point. But you can also join using Google or FB.
Link works….
At my local Nuffield Health Fitness centre, but you have one in Sheffield.
nuffieldhealth.com/about-us...
You just have to register an interest and they get back to you.
Go for it Jane!
Angel! 😇
or 👹 when you may be aching after a 'workout'! 🤣 only joking!
I have just finished the 12 weeks at our local Nuffield. It has made such a difference to my mobility and strength. I would highly recommend joining.
Hi Rugger, this sounds amazing, but checking through the info it doesn't mention PMR specifically. It also says 'joint pain' - mine is muscle pain and fatigue. On 3.5 pred after 7 years reducing from 15. In your opinion, is it likely to help me? I do hope you are going to say 'YES'. 🙂
"Yes"! Apparently, the entrance criteria are quite flexible and it does include us with PMR. There is one woman with Fibromyalgia in my group too. The rest do seem to have OA, RA or issues with back pain etc, but their goal is to strengthen muscles to protect their joints, so we are all in a similar situation. It is up to each one of us to work at our own , safe level and listen to our body. There is no competition within the group - each one of us aiming for our personal goals.
After you express an interest via the website, Nuffield will get back to you and offer you an assessment appointment to check that the programme would be suitable for you. They do height, weight, BMI, waist:hip ratio and a finger prick for blood sugar (HbA1c) and check that you can walk 10 metres!!
I know someone who was told the programme was not suitable for them, due to their health problems, so am confident they are a responsible organisation and not just looking for prospective new members of the Gym.
I am impressed with the professionalism of my 'Rehab Specialist' but can only talk of my experience at my local centre.
PS We are at the same stage - 7 years and 3.5 / 3mg pred!
Thank you so much for that info. Will continue the application process! Will let you know how I get on, am near Bath so Nuffield not too far away. Would be good if they offered programme. Always good to meet fellow sufferers, have great neighbour with rheumatoid arthritis and we spend a lot of time laughing over ailments - black humour!
I forgot to comment on "fatigue". It is a big commitment to attend the Centre twice a week, taking into consideration getting there on time etc, especially if, like me, you haven't done anything like this for 7 years or longer! Therefore you should make sure you can pace yourself as much as possible on the other days of the week. Having said that I think I am starting to have more energy, which may be partly psychological as well as physical - proving to myself that I can be more active.
The group I am in do not come across as "sufferers" and we don't discuss our medical issues, other than at the very first session when we introduced ourselves - that would be for my local PMRGCAuk Yorkshire support group.
Yes, that had just crossed my mind. Nearest one is north Bristol which is a 36 min drive away according to Google maps, just thinking about it exhausts me at present. Rest of week quite full on with 101 year old mother, autistic son and partner with dicky ticker. Will have to think very carefully before making commitment. Appreciate your comments x
Nearest one is north Bristol which is a 36 min drive away according to Google maps
…as well know too well what Google maps give as a time and what that turns out to be can be vastly different… no matter whether urban or rural!
Especially when it involves the motorway around Bristol ...
Precisely...😲
Shall have to do a 'dry run' first!
Yes but if you do a different day and different timings you'll get a different answer -but at least you'll know the route...
With that journey and your family situation, I would definitely think twice, unless you can totally 'write off' those 2 days as time for YOU! My parents are no longer here, I have no children and my partner is fit and well, so I am fortunate to be able to devote the time to myself.
Before the grandchildren gave me the injection of energy, I think I was almost giving up. I wish I knew someone who went to the Sheffield one. I know that I will dread it at first. Courage! X
You can do it x
Once you go, you will meet others and then "know" someone. Every journey of a thousand miles starts with a single step ...
I knew none of the others and everyone is in the same situation. There is a collective empathy in the studio, as we are all in 'pain' of one kind or another, so it feels very supportive, but the reason you are there is for you and you alone. It isn't like a social gathering that you may dread, walking into a room and knowing no-one. It may be that you pal up with one or some of the others, for a swim maybe, but so far, we all turn up at the start and leave at the end. After 6 weeks, we do greet each other and have a chat about how we're doing while walking out of the building, so things could progress to friendships by the end of the 12 weeks - who knows? Be brave!
PMRGCAuk obviously thought it appropriate for us when they included a talk about it during the PMRGCA awareness week. The link is further up the thread, There is an assessment first and as I understood it, it is to be tailored to your abilities.
Our sessions are not individually tailored, so we each have to work to our personal limitations. However, our trainer is constantly checking and watching us and will give reminders to individuals about using a chair instead of standing, or some blocks to raise the height of the seat etc. I am impressed with him, even though the content of each session is the same for us all. He has worked at the Centre for 15 years and manages the Rehab programmes, so I think we are fortuante to have him, rather than a less experienced member of staff.....
He does work for Nuffield as a Personal Trainer too - I haven't investigated the cost of one-to-one sessions!
I have registered. It is at the gym I have steadfastly ignored, a couple of hundred yards from my house and there is a pool. I have got my husband to sign up with his back that goes into spasm. What do people wear? Not neon Lulu Melon I hope. 😂 Seriously, thank you guys!
Well done, Jane that will be so convenient - I'm envious. Also you will "know" your husband and have a ready-made mutual support system. Just comfortable clothes - a T-shirt and joggings or equivalent - no designer wear oop here!! You do need trainers on your feet - I had to buy a pair, as I didn't possess any!
I fear we've hijacked Alan's thread with all this Gym talk. Now I'm going round to help my elderly neighbour with some dusting! 🍀
Alan seriously walks 😉.
What do people wear? Not neon Lulu Melon I hope
I doubt it very much if my Pilates class is anything to go by, these are people in pain who want help with their illnesses etc, not yummy mummies who have too much cash to splash...😏
Something you are comfortable in and stretches... as you will in time ... good luck.
Gummy grannies then? I’ll fit right in.
Speak for yourself dear! 😂😊... mine are Weird Fish.... 'nuff said...
I love Weird Fish things, I’d forgotten about the brand. I will have a search. My scruffs are not for public consumption. Sheffield has a trendy Youth Culture around sport and gyms. I am overthinking this. 😬 x
Yes you are overthinking it… 😳 -just get what you like!!!
Life’s too short to be trendy -once you’re over 25 and have more sense!
What about “ When I’m old I’ll wear purple………
…nowt wrong with that !!!! 🤦🏻♀️
Well done you! I am now having to look up Lulu Melon - I am so out of touch, is that really a brand name??!
Oh my goodness there is! Now just need the body to put in them!!
No excuses at all then!!!! And what to wear? For the first time a loose t-shirt and leggings will do fine. Then have a butchers at what the others have on. No-one is judging. And trainers of course.
I don’t like trainers much - postural vertigo makes doing them up a pain. I have supportive UGG slip-ons, like a trainer without laces, close fitting. I expect they’ll do. The gym they are doing it in is a bit flash.
They'll be fine for the first session - the trainer will tell you if they aren't. Are you able to bring your foot up to you while sitting rather than bending down to the shoe?
She sounds wonderful. Will she come across the water? Happy for you SJ.🌹
I found her through PMRPro’s recommendation many years ago. As well as this forum she has been the guiding light during this disease. Blessed really! X
PMRproAmbassador
And DO tell me - how does he know the PMR is in remission?
Ah so - I read further down the thread - if you are still at 5mg then that accounts for the markers being in range - they should be when you are on enough pred! Why the hell do they think they use pred in PMR? It is to combat the inflammation which is what raises the ESR and CRP.
I despair ...
I’m just saying what he told me but I’m not even 10% sure he’s right but at least now I have a good idea I may also have RA after fighting for an appointment for over a year.
I've wondered this also. "Well your CRP is 3. That's great!" Meanwhile I was on 22.5 mg of Pred. Me: eye roll.
It is great - it means you are currently on at least enough pred to manage whatever inflammation it is. But that is all it means and at that high a dose and a diagnosis of PMR. you'd hope!
Exactly Pro. Then she says "get that Pred down". I am, but not at 2.5 mg. Biweekly. Dropped to 20 last night and chuffed. Now let's see. I began there in 2022. Dropping from 60 at her pace was no easy feat. Thanks.
🍀 good luck Missus835.
Well, that was easy then wasn't it?
For the rheumatologist.
I think you sound strong enough and sensible enough to listen and act upon the amazingly helpful advice given on this brilliant forum. I send you my very best wishes.
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