Discharged by rheumy!

[Broseley]

I went to my appointment yesterday, full of tales of woe about all my various health problems this year which caused a delay in my tapering. I'm on half a mg pred.

He said my blood tests were all fine. I've had no recurrence of any GCA symptoms. My hip and shoulder stiffness (which is constant and not worse in the morning) must be OA along with my right knee pain which I think is tendonitis.

At my request he sent me for an XRay on my knee and referred me to physio. He said to stay on half mg for another 2 weeks then go to zero. He then discharged me, saying I could always get my GP to refer me back if I get any problems.

He examined my knee thoroughly. I don't think it's PMR because it's better, not worse in the morning, and gets worse during the day, then better again in the evening. Also it's just my right knee. But he did say I could use Volterol on my knee, which I was told I could never do by 2 GPs and a pharmacist due to my being on blood thinners. So I tried it last night - a big improvement this morning! All this time and I could've been using it!

But I'm feeling a bit abandoned! It's virtually impossible to get a GP appointment and God knows how long I'll have to wait for physio. My legs and torso muscles have become so weak and walking and standing with my bad knee are too painful. Any tips please?

[PMRpro Ambassador]

Mixed feelings isn't it!!!

Have you tried walking in the local swimming pool (in the absence of a hospital hydrotherapy pool)? That was how my physio started me off to improve my walking - the water makes a great difference to sore joints while moving. Then she sent me to join the local rheuma charity aquafit classes.

Is there a Nuffield gym participating in the joint pain programme near you? Possibly worth investigating that. Alternatively, if you can afford it, look for an off-peak membership of a gym with a pool - going at a quiet time means you can do exercise in a pool even if you don't have a pool nearby with a dedicated exercise pool without people bombing up and down in lanes. Sometimes hotels have memberships for their facilities.

My physio didn't like me using a crutch when walking but I found it gave enough relief on the bad leg to let me walk further. I could barely walk around the flat - now I regularly walk more than a mile around the village without a crutch though I take it if I'm going to be using the bus to help get in and out more easily.

[Broseley in reply to PMRpro]

Thanks, some good suggestions there. My next door neighbour goes to a hotel pool on Friday mornings at 6am! Not sure I could manage that but worth looking into.

I found the Nuffield program. Our nearest gym is 10 miles away. The program looks really good, and is free to access - whatever that means. nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme

But maybe I should wait for the XRay results first?

[PMRpro Ambassador in reply to Broseley]

There are a few posts about the Nuffield programme from people who have used it - there was a talk about it at last year's annual meeting I think. May be something on the charity website.

Just moving in a pool will be a good start, whatever the x-ray shows.

[Broseley in reply to PMRpro]

I found Kendrew's post. There are some useful comments. I'm hoping she'll let us know if she tried it.

[PMRpro Ambassador in reply to Broseley]

Ask her! Click on this name link Kendrew to get her profile, message her if necessary though she should see my tag.

[Broseley in reply to PMRpro]

Thanks I replied to her post. I have now applied for the programme anyway and completed the questionnaire. One of the questions was "What would you like to be able to do if you became pain free?" Or similar. It certainly got me thinking!

[PMRpro Ambassador in reply to Broseley]

Walk?????

Yes - I saw you had replied to her after I replied to you.

[Broseley in reply to PMRpro]

I put, in addition to walk, go up and down the stairs, tie my shoe laces, load and empty the washing machine, get food into and out of the under counter fridge and freezer, wash my feet in the shower. Stand still for longer than 2 minutes.

[PMRpro Ambassador in reply to Broseley]

When THAT is "all" you want - it seems rather poor that you were discharged from rheumy care, In no way could that be described as a stable and managed status. Someone needs to get their rear in gear ...

[Broseley in reply to PMRpro]

Well that's all down to my knee, which he thinks is OA.

[PMRpro Ambassador in reply to Broseley]

He could have checked though! Have you tried Flexiseq? Not cheap but can work wonders - providing it isn't bone on bone

[Broseley in reply to PMRpro]

Oh yes, I must try that! Thanks!

[Orange_2022 in reply to PMRpro]

It's great....massively helped my painful thumb joint!

[Macas in reply to Broseley]

Just smiled reading your wishes because they are all I wish for too. I’ve kept those wishes to myself until now. It’s hard to realise one cannot tie their shoe laces or wash feet. I had to come to terms with the stair problem as the Loo is upstairs so I know have a stair lift. I admit to crying when it arrived but now it’s my best friend I can go up and down the stairs whenever I need to. Standing is also painful but if I sit for a while the pain goes. I suppose at 84 one must expect all these niggles but it’s hard shen in my head I’m only 35😱😱

[Broseley in reply to Macas]

I know how you feel. But I should have qualified my list to say do all those things without pain. I can do them, but it hurts!

[Laineydee in reply to Broseley]

I am three weeks into the Nuffield Joint Pain programme, which I heard about on this site. I’m finding it extremely beneficial both for my physical and mental well-being. The discussions around pain management, the setting challenges as well as the gentle circuit and gym exercises have really energised me. I am now building the exercises into my daily routine but taking care not to overdo things in my enthusiasm. Free gym membership and access to all the classes and pool - I can’t recommend this scheme highly enough.

[Arnhem in reply to Laineydee]

I completely agree..I did the program prior to having to have a new hip and it was beneficial in every way.....improved my mobility eased the pain (now completely gone after the replacement), met some super people and the 'reduced' membership fee after (the course being free) meant I went to the gym after which no doubt accelerated my recovery...If you have a Nuffield Gym near you I would get on the program.

[Kendrew in reply to Broseley]

Hi Broseley,

My name is still on the waiting list for my nearest Nuffield programme.

It's so oversubscribed due to its popularity and successful outcomes that I'm having to be patient whilst my name slowly rises up the list.

The organisers are really good though, in as much as they email me every so often to say they've not forgotten me, and to assure me I am definitely moving up the list.

I'll be sure to post my experience of the programme once I'm accepted onto it, so watch this space! Hopefully that won't be too long now.

[Broseley in reply to Kendrew]

Thanks for letting me know. I've applied, but obviously haven't heard anything yet. If I get on before you, I'll let you know what it's like.

[Kendrew in reply to Broseley]

Thankyou. Yes, please do. Would be very interested to hear what you think.

[Pangolin43 in reply to Broseley]

Hi Broseley. I completed the Nuffield health program. It was excellent. If you are offered a place and you can get there it’s so worthwhile. I was in a small group of 6 people with various problems.. so good to meet and learn from others. The person running the group was fantastic and able to tailor the exercises to individual needs. I came away with more movement and confidence and have continued to exercise .. 😀

[HalleysComet in reply to Broseley]

Nuffield Joint pain is a wonderful resource, I did it. You get reduced gym membership after doing it too.

[Mfaepink1973 in reply to Broseley]

I can recommend the Nuffield joint pain programme which I completed last year. It’s free of charge and involves 2 one hour sessions a week plus free membership of the gym for a year and free access to all the facilities and classes.

[Broseley in reply to Mfaepink1973]

Thank you.

[Pangolin43 in reply to Mfaepink1973]

I received free membership for another three months after the program and half price membership after that 😀

[Rugger]

I suppose he discharged you as he was 'looking after' your GCA and considered it safe to do so as you are now on 0.5mg, heading to zero. They have to discharge some of us to be able to take on new patients. (I have been seeing my Rheumatologist for 7 years and still no sign of remission. 😟)

The situation with GPs is difficult, but they are there for us when we need them. I hope you get to see the Physio soon.

Best wishes.

[piglette]

I find swimming fantastic. I pay to be a sports club member which does make me use the pool more!! I think most of the hotel chains offer their swimming pools, I know Crown Plaza near me does. Does your hotel only offer the pool at 6.00am? Our local NHS pool has had Out of Order on the door for the last two years. They may of course be talking about the whole of the NHS!!

[Broseley in reply to piglette]

I don't know, I'll have to ask my neighbour. I believe you have to become a member which will be expensive. I'm sure you can go swimming at other times though. She goes then because it's quiet. There is a municipal pool I could go to.

[piglette in reply to Broseley]

I live in a village so pools are few and far between. I don’t know how old you are but a lot of pools offer discounts to older people.

[Broseley in reply to piglette]

I'm also in a village, but there is a leisure centre at the local high school about 2 miles away. There's also a couple of hotels with spas and pools.

[piglette in reply to Broseley]

Our local school had a swimming pool but they filled it in and turned it into a car park!!

[Ann1A]

Hi, I understand what you say about delay in seeing GP, its 5 weeks here, but do try the new nhs self referral for physio, the website to go through is YourPhysio and recently I got an appointment in a week.... i might have been just lucky, but try it, you no longer need to go through gp. Good luck.

[Broseley in reply to Ann1A]

Thank you. I'm afraid I'm sceptical about this because our self referral is to a local sports physio business. I tried them out when I wasn't getting anywhere with the GP during lockdown and I could hardly walk with the pain. They assumed it was OA and the exercises made it so much worse. Then the guy I was seeing left and I saw a woman who didn't even read my notes and shouted at me to stop limping!

Eventually I was referred to a hospital physio and luckily I got in quickly due to a cancellation. He was brilliant. He really listened - the first session took nearly an hour with him just questioning and examining me. He gave me exercises that I could do from an app. I saw him for about 6 months during which time I finally got diagnosed with PMR and the steroids sorted most of my problems anyway.

[PMRpro Ambassador in reply to Broseley]

I hope you wrote a letter of complaint to your GPs about the treatment you met? The use of local businesses is part of the privatisation by the back door and while it is a great idea when the services provided are suitable, that was poor (to be polite). There are many poor NHS physios when it comes to PMR but that sort of treatment by ANY physio needs calling out.

[Broseley in reply to PMRpro]

No I didn't complain. I think I was too ill at that point to think about such things. But I do tell everyone I know how rubbish they were. Worst of all, their 'surgery' is on the first floor, up a steep flight of stairs!

[Abcd123455]

I’m just doing the Nuffield joint pain program now. It’s two sessions a week of hour, first part education session about joints then specific exercises with physio. Eventually we’ll progress to actual gym equipment with support. This is over 12 weeks. Then12 weeks of you practicing yourself and then rest of year when you can access support if needed. They’ll work on stability, pacing, weight bearing etc and weight loss if you ask for help- it’s all free plus you can use all facilities free for a year. So far so good , hope you can join one.

[Broseley in reply to Abcd123455]

Thanks, I signed up, but may have to wait a while.

[Stills]

I don’t have PMR but Stills Disease which makes all joints stiff, sore and swollen with knees and wrists the worst then hips and shoulders. In addition I ruptured two lower leg muscles badly during lockdown and did not seek medical help , this was in October 2020. I was mainly house bound 2021 dragging the bad leg around. A year later I started physio, a year after that I started swimming and this year I received a bespoke orthotic to help the injured leg. Combined with rheumatic pain the injury has left me with a noticeable limp and I use a support sleeve in that leg for walking, I was dedicated to the exercises the physio gave me but as the injury was untreated for so long it can’t be corrected fully. I found walking and swimming in the small hotel pool the best thing for it and although the leg constantly hurts it’s much stronger than it was and the limp has reduced. I’m having a guided steroid injection in the big joint of that foot to relieve arthritis pain in August which may allow me to improve on my walking too. Throughout I have applied the strong volterol gel GP eventually prescribed but note it’s photosensitive for some and shouldn’t be used in conjunction with compression sleeves etc so it’s one or the other. One big issue has been footwear as I’m now limited to walking shoes or ankle boots. So I’m crediting the swimming mainly for allowing me to walk and stand longer again although I’ll never hop, skip or jump but at 62 perhaps I should stop that 😉

[Broseley in reply to Stills]

Thank you Stills. It's never too late to hop, skip and jump! But I agree with you about the shoes. I have a cupboard full of shoes I can no longer wear. I need to try and find some smart flatties for posh occasions, but they never look as nice, especially with my short fat legs!

[PMRpro Ambassador in reply to Broseley]

I've just been looking for apparel for my grandson's wedding next April in the north of England - and at the top of a cliff!! It will be dressy trousers and the shoes are glitzy trainer-style! Very Italian ...

[Broseley in reply to PMRpro]

Sounds perfect!

[Thelmarina in reply to PMRpro]

And very fashionable!

[Stills in reply to PMRpro]

Perfecto

[Stills in reply to Broseley]

I decided that if I had to wear flats I was going to make a virtue of it. I buy fancy tights that draw attention but outshine the flats. Check out company called modshoes and look at the selection of tights. A brave new world for legs!

[Broseley in reply to Stills]

Thanks, will do!

[PMRpro Ambassador in reply to Stills]

TIGHTS? What on earth are they? Must be over 20 years since I got a pair of them!!! Couldn't get them on in the first years of PMR!!!!!

[Stills in reply to PMRpro]

It’s all about the wriggle factor

[PMRpro Ambassador in reply to Stills]

It's non-existent - I have PMR and I'm not a politician ...

[Viveka]

Perhaps don't go straight from 0.5 to zero in a fortnight? Use a tapering plan or try 0.25 or both - for the adrenals.

[Broseley in reply to Viveka]

That's what I said to the rheumy, and what I'll probably do.

[Dinahmite]

Just to say 2 GPs have told me Voltarol gel is OK with blood thinners. I use that with MCC warrior balm. It's absolute magic. Good luck with the physio.

[Broseley in reply to Dinahmite]

Thank you. I'll look that one up.

[Smellydog9]

I had very damaged knees before my PMR GCA journey. Was offered referral for replacement but didn’t want that while on high doses of prednisone. Now my prednisone is reduced and I’m feeling better I do aqua at my local gym and saw a great private physio. She used massage to reduce the swelling and I only need a few sessions at about £35 each. The aqua keeps me mobile at the moment.

[Broseley in reply to Smellydog9]

That's good news. I don't have any swelling, just pain at the outside and back of my knee, shooting down to my foot. I still think it's not OA. I'm glad yours is getting sorted at last!

[LCfan]

I'm so glad I read this today as I hadn't heard of the Nuffield programme. My PMR has been gone for a year or 2 but At 76 I have OA in various joints and can't move around much or do any significant exercise. I found there is a place only about 5 miles away, so have just applied. Actually had foot surgery there in the last few years paid for by NHS

[Broseley in reply to LCfan]

Excellent! So glad to be of help!

[Ollanda]

Dear Brosely, for over 8 years I was on prednisolone for PMR and I didn't succeed the last years in tappering to zero form 1,25mg. I got a new rheumatologist she suggested to do the diagnoses all over again to see if the illness is still present (even with an MRI). At first I felt terrible, everything hurted, arms neck shoulder hips legs knees, than I got an eye infection and s swollen tongue. We think this might be caused by the body that had to find a new balance. After 6 weeks I really started to feel better, and my blood values were good. And now (10 weeks later) everything is way beter and almost painless. She also said that prednisone causes muscles reduction and that the combination of less muscle and no more prendnisone as painkiller might make it hard the first months. So hang in there it may take some months for your body to find a new balance. Good luck!

[Broseley in reply to Ollanda]

That's good to know, thank you. My rheumy said the pred could actually cause OA, which is masked at higher doses but becomes evident when you reduce.

[PMRpro Ambassador in reply to Broseley]

It is said that pred can contribute to degeneration of the cartilage - but it is disputed it causes OA. Hasn't done my joints any harm in 15 years!