Confused about PMR, arthritis and effects of pred.

[Broseley]

I'll try to keep this brief but may have to add more details later.

We had to cancel our holiday on the day of departure (5th July) due to a sudden severe pain in my left hip, only on movement. I could hardly walk and hubby had to help me down the stairs.

I am on half mg of pred and recently was discharged by rheumy despite my on- going right knee pain - since April - shoulder and hip stiffness and left elbow pain. He said it was arthritis. Told to stop pred on 20th June, but I didn't. I was managing ok with a stick and flexiseq on my knee though limited walking and it was slowly improving but shooting pains down my shin and foot. But combined with the left hip, I was very disabled. I also started feeling shivery and chilled, like getting goosebumps in waves.

I went to see my GP and she said she thought it was my back - L5 - causing the knee pain and shooting pains. She sent me for XRays on my back and hips (I'd already had one on my knee - came back as mild arthritis).

I took 5mg pred that day, and the next, and by the evening of 6th all pain was gone, total movement restored. I've now gone back to half mg today because I have a blood test next week and I don't want the results to be affected by the pred.

I'm now confused because I thought pred only worked on PMR/GCA not arthritis? I am claiming on the travel insurance but if it's a PMR flare they won't pay out as it's a preexisting condition. I'm so annoyed because I'm fine now and we could've gone after all!

[DorsetLady PMRGCAuk volunteer]

Pred will work on inflammation whatever the cause -, many have found that 5mg was enough to mask their OA pain.

You may well have your answer now you have dropped back to previous low dose…so wait and see what happens. But only 2 days worth is a pretty quick response.

Sorry about holiday..

[Broseley in reply to DorsetLady]

Thanks DL. In some respects that's good news, in that arthritis was not a preexisting condition when I booked the holiday. But if it is that, and I still have to come off pred, then I envisage a future life full of pain.

[Broseley in reply to DorsetLady]

It's odd though, as irrespective of the pain, I could not move my leg over to the side (when you lie down, put your feet together then move your knees out to either side). It just got stuck about 6 inches over. Now, it flops over fully. Why would this suddenly get better?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Really don’t know… 🙄

[cycli]

I don't know how long you have been on pred Broseley but if it is the only anti inflammatory that works you have probably already suffered its worst side effects. If more pred relieves all pain then maybe stay on a higher dose. QOL. We had to cancel a paid for and planned holiday touring the Scottish isles when I was crippled with PMR and GCA 3 yrs ago and haven't been able to consider it since. my condolences.

[Broseley in reply to cycli]

Thanks. I've been on pred since July 2021, starting at 40mg. I haven't really had any side effects (touch wood) only feeling buzzed and having palpitations at higher doses.

My GP didn't like the idea of my taking 5mg! I have been under a rheumy and the GP surgery had nothing to do with my treatment. But he discharged me, saying my bloods were OK (CRP >5 and ESR 28).

My argument was that the bloods were done on May 2nd but my appointment with him wasn't until 12th June. In that time, my knee and shoulder problems got worse, so surely I should have another blood test. But he said no, it wasn't necessary.

[cycli in reply to Broseley]

I think ESR is too high so maybe he was wrong. Happy to be corrected if I am wrong.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Maybe, maybe not when on very low Pred - so called normal range with no,Pred is as follows -

Women over age 50 should have an ESR between 0 and 30 mm/hr.

Although as we know, people have their ‘own’ normal. In some, Pred does keep it abnormally low, but apart from early days when on high dose, mine trundled along in the teens, and was in low 20s when on 0.5mg, no-one batted an eyelid…

[cycli in reply to DorsetLady]

cheers DL. however, still doesn't look like GP and Rheumy are listening to the one suffering.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

No they aren’t. . Most people have one or the other doing the ‘right thing’ but unfortunately for Broseley neither are.

[Broseley in reply to DorsetLady]

I saw the best GP in the practice! However I don't think PMR is her 'thing'. At least she's doing something, more than the others would.

[piglette]

I had arthritis in my hips. OK now, I swapped them for titanium ones. I found the pain was mainly in my groin area. I think this is true of a lot of people with hip arthritis.

[Broseley in reply to piglette]

Yes the pain was only in my groin area. Did you have periods of no pain or was it constant? It felt like it was going to give way so I couldn't weight bear at all.

[piglette in reply to Broseley]

Moving about was bad, I used to go swimming when I did feel less pain. I saw an orthopaedic surgeon privately, suggested by my GP, who said I would be in a wheelchair in six months. My GP decided what I needed was a rheumatologist, which took over six months. Luckily she said you need a new hip. It then took another few months to go through all the checks and bureaucracy required by the NHS. In all it took over 30 months to get my op. I still shudder at the pain I had when I think about it.

[Broseley in reply to piglette]

Wow, that sounds awful. At least it got fixed. My rheumy wasn't interested in my 'arthritis', or even my PMR. Only my GCA.

My GP has referred me to Musculoskeletal as she says they may order an MRI. She would have done but she said GPs aren't allowed to any more.

[piglette in reply to Broseley]

My GP was not going to do anything, that is why I said I would see someone privately.

[cycli in reply to Broseley]

I honestly feel that an investigation into the arrogance of many rheumatologists is justified. I wanted a referral to musculoskeletal but was ignored. Fortunately I know what to exercise when able and how to develop when condition allows but would have appreciated an informed opinion. Our NHS is definitely in need of a reboot and encouragement for the medical staff. I'm not so sure about all the admin. The management needs thinning and the savings made over to the medics. It's such a large organisation and the demands on it are ever increasing.

[Broseley in reply to cycli]

Agreed! A friend has ended up unable to walk or speak due to a major stroke. She went to the GP with the story of a TIA and he dismissed it. Now her and her husband's lives have changed forever.

[cycli in reply to Broseley]

shocking but all too often we hear of similar occurrences

[JessJess21]

i dont know much but i think that osteo A pain is not much linked to bone ( as in pain can be subjective to each person). But i think - in my case - the OA can get inflamed by PMR in the joints. Im still on high steroids ( 25mg) and not fully stabilised so also taking naproxen for hand pain etc. i still flew to Vancouver- got assistance/ wheelchair etc. im very much learning curve. But only 3 months in. The steroids are slightly working. Im learning to trust things will improve. Resting and calming helps. Tho holiday almost over ! Sending love.

[Broseley in reply to JessJess21]

Thanks. I would have thought 25mg would have got rid of your pain! For me it was within 24 hours on 15mg (later upped to 40mg due to GCA). Be careful taking naproxen with steroids- see FAQs.

I hope you enjoy the rest of your break!

[DorsetLady PMRGCAuk volunteer in reply to JessJess21]

25mg is at the top end of the range for suggested starting doses for PMR, and I’m bit concerned that it’s still doesn’t seem to be helping you. Is everyone sure you do have PMR [I know you have OA as well]. Hopefully it will once you get back from holiday, which enjoyable can also be stressful as you are out of normal routine…if things don’t improve significantly after a couple weeks, think you need a heart to heart with medical team.

[JessJess21 in reply to DorsetLady]

I agree. Yes thank you- my gp said same. True - pains are reduced somewhat. But not entirely. Gp wanted to see 70 % improvement on meds but i think its more like 45% or 50% improvement. I do seem to need the naproxen too - as hands very painful otherwise. X

[DorsetLady PMRGCAuk volunteer in reply to JessJess21]

45-50% improvement doesn't sound too good especially on 25mg…and as you’ve been on for a while.. 2 weeks or bit longer?

But can I ask, have you been treating yourself as a poorly person or trying to do too much [even on holiday].. that all has a bearing on things.

Please be aware that Naproxen is a NSAID and really shouldn’t be taken regularly with Pred… so that’s another thing to discuss with GP.

[PMRpro Ambassador in reply to JessJess21]

If the naproxen helps and such a low response level that is a strong suggestion it may not be PMR but a polymyalgic presentation of an inflammatory arthritis. These are red flags for urgent referral to a rheumatologist because it is not a "typical PMR response". It may be PMR - but it isn't behaving as expected.

[Polygolfer]

I have arthritis in my hip (now replaced) and wrists and while I was on steroids I felt no pain… once I was off steroids all the old arthritis pains returned.

[Broseley in reply to Polygolfer]

Thank you. I'll have to wait and see what the XRay results are 🤞

[Cottagecheese79]

I was originally diagnosed with rheumatoid arthritis and after a second opinion discovered I'd been misdiagnosed and in fact have Osteoarthritis, which apparently is extensive (I also have Vasculitis). Prednisolone has been my salvation. My hands were swollen and like you I could hardly walk with sore knees, hips and back. I started on 20mg for a week, then 15mg for a week and then 10mg. My consultant wants me to stay on 10mg for a while and then reduce by 1mg a week. I've just had another blood screening and Will be seeing the consultant again next week on the 17th July. Carry on with what you're doing if it works for you.

[Broseley in reply to Cottagecheese79]

Thanks! I'm hoping it's not arthritis. I don't get any swelling. How do you get pred prescribed, or do you have PMR as well?

[Pixix]

um…if you declare all your medical issues when you buy insurance, they are covered, surely, ours were. But looks as if it wasn’t now a pre-existing for you. I’ve just cancelled our 2 weeks inItaly, as I gotcovid& my husband pneumonia, followed by cancelling our 11 days in Devon for recuperation as my hubby got cholecystitis!! It’s naff, isn’t it? I have arthritis, but have had it for years. The higher doses of steroids do help my arthritis a bit…in many cases it’s there, but it masks it. Then it’s a shock at lower doses when it suddenly appears! Mine is worst in feet & hands so much is affected but also in hip! My main hip & groin pain, though, us caused by trochanteric bursitis. My Dr thinks I have inflammatory arthritis, but in a long queue to see a rheumy! I’m afraid to tell you, that, for me, arthritis is a life of pain…using my hands for anything, & walking, because my feet are bad! But there are usually things that help. & if in hip, new ones are ‘everywhere’, & walking well!

[Broseley in reply to Pixix]

Thank you Pixix. I'm sorry to hear about your holiday. Our insurance doesn't cover preexisting conditions even though I declared them.

I had the same problem with my right hip in 2021. It took a year to get it right again even with steroids. The MRI said no arthritis, just inflammation. I expect this is the same. My right hip is absolutely fine now. At the time I couldn't raise my leg - not due to the pain, it just wouldn't move. The pain is sharp and sudden, only lasting a second or two. It occurs especially when shuffling sideways, turning or twisting. It's fine when I'm not moving. I couldn't turn over in bed without shrieking. Could that be trochanteric bursitis? I have had tendonitis in both elbows, ankles and my right shoulder. No one knows why.

I'm glad I had steroids to catch this one early. I wouldn't have been able to get into the aircraft seat never mind climb the steps. I'm back on half mg pred now and I'm expecting it to return. Keeping my fingers crossed.

The insurance has a £400 excess which I didn't realise!

[Koalajane]

when I first started with PMR i felt fine when leaving the house for a holiday. Until rushing to catch the plane and my legs collapsed. I was helped on to the plane and off and wheeled out of the airport. I then spent the holiday in the hotel room! Had help with a taxi arranged by our daughter to get to airport and special assistance at the airports. That was the start of my PMR! I never saw any of the sights!

[Broseley in reply to Koalajane]

Ooh, I'm glad you managed to get your holiday at least! Kind of. My hubby got an inner ear infection on our honeymoon and spent the fortnight on the bed in our hotel room which was in the basement! Nobly, he sent me off on all the excursions on my own!

Even if I had got assistance at the airport, the place we were staying was only accessible by a flight of 30 metal steps. I could possibly have made it up there, but I didn't know at the time that my hip would feel OK 24 hours later and coming down again would have been a nightmare.

[AtopicGuy]

Steroids only work when the immune system is overreacting. That includes PMR, GCA and rheumatoid arthritis, which are autoimmune diseases. It does not include osteoarthritis, which is due to wear-and-tear in the joint(s).

Confusion can arise because the tissues injured by wear-and-tear can sometimes become inflamed. In these cases, the patient can get some benefit from steroids, but they will not reverse the osteoarthritis itself.

[Broseley in reply to AtopicGuy]

Thank you, that makes it clear. My rheumy did consider I might have seronegative RA at one point, but as my CRP and ESR were OK in May, he just discharged me.

[AtopicGuy in reply to Broseley]

The role of steroids is to reduce inflammation, so blood tests like CRP and ESR usually normalise during treatment. That does not mean the underlying autoimmune disorder has gone away, so relapses or 'flares' are common. PMR and GCA are chronic (ie. long-lasting) diseases that should relent, given time. Many other autoimmune diseases tend to wax-and-wane, but get progressively worse with age.

[Broseley in reply to AtopicGuy]

I agree, though my point is that rheumy should not have discharged me and told me to go to zero pred when 1. I was suffering from hip, knee and shoulder pain and stiffness 2. The blood tests he used as evidence were done 6 weeks before my appointment and before these symptoms developed.

[AtopicGuy in reply to Broseley]

I can only help with facts. It would be wrong of me to criticise a doctor based on limited information from one side only.