Something else

[Valentina1]

Has anyone developed severe osteo arthritis after coming off preds of 2 years duration given for giant cell arthritis ?

[MrsNails]

Hi Valentina

The chances are it may have been developing anyway & the Pred has masked its progress but now you are off the Meds it’s showing itself, is it in many areas? Have you tried any OTC Pain Meds?

Kind Regards

MrsN

[Valentina1 in reply to MrsNails]

Dear Mrs nails thankyou its so nice to hear from you I am not at all sure what the initials stand for. I am unfortunately having a great deal of pain now and i am going to see a con sultant privataly at the end of the week I have found that the waiting lists are so very long and i would just like to know if i can or not have an op, Its knee and hip.Enough of me how are you keeping?

Very best of wishes Gill.

[PMRpro Ambassador in reply to Valentina1]

Over The Counter

[MrsNails in reply to Valentina1]

Hi Gill

Sorry, l wrote that reply very early this morning 😉

OTC - Over the Counter Meds eg Paracetamol

Meds - Medication

I’ll attach you a list of Abbreviations 😉

healthunlocked.com/pmrgcauk...

I’m glad you’re seeing someone re your pain, all my friends seem to be getting New Knees - No Hips - just knees!

Me, l’m doing better 🙏🏼 the increased Methotrexate has well n truly kicked in & l’m starting a slow taper, my aim is 10mg then rest a while.....

The Angina seems to be under control or at least my management of what brings it on is, so can’t ask for more than that!

Take Care & let’s Us know what the Orthopaedic Consultant says & see if there is any pain management in the interim.

Best Wishes

Angela xx

[Hirwaen in reply to Valentina1]

I am in exactly the same position and have decided to have a private orthopaedic consultation just to find out if I’m making a fuss about nothing!!! Waiting for an NHS appointment would be annoying.😬

[Valentina1 in reply to Hirwaen]

My appointment. Rivaye of course is on Friday. I need to know also. Can I have replacements what can I do. It’s against the grain to have to pay

[DorsetLady PMRGCAuk volunteer]

I had OA before I had GCA - so you may well have as well, but as stated when on higher doses of Pred the pain is apt to be masked - so you don’t realise how much it is deteriorating. I was prescribed cocodamol before my replacement operations, but it’s not the nicest drug to take!

Some swear by Flexiseq - but I found it did nothing for

me - think it depends how bad it is. Following ops I discovered this CBD ointment which at the moment is keeping my remaining shoulder OA under control - no medication required.

Not cheap, but a better price on amazon - sensiwellness.co.uk/cbd/

Also look at versus arthritis site - versusarthritis.org/about-a...

[jinasc]

Flexiseq - a bio mechanical gel developed by the research in ARC and a German company.

Used it for nearly 4 years and passed it on to others. The beauty of it is it is not a drug.

Expensive but worth every penny and the instructions show you exactly where to put the gel, on knees, hips etc.

[piglette]

I was told by my orthopaedic surgeon that the steroids had eaten away the cartilage in my hips. I had my first hip done on the NHS before Covid with a wait of eighteen months and my second privately during Covid with a wait of seven months. That was because the private hospital I wanted to go to had signed all the beds over to the NHS.

[Devoid]

Hi I have recently had a diagnosis of osteo arthritis but am not totally convinced that it’s correct. Have agreed t

[Devoid]

Hi I have recently had a diagnosis of osteo arthritis but am not totally convinced that it’s correct. Have agreed to try regular paracetamol and cocodamol at bedtime as it is making a decent nights sleep impossible. I have always had achy joints with no real diagnosis but this is completely different, more of a burning pain and greatly increased stiffness. As I’m on tocilizumab nothing shows up in the blood tests so I think it may be when that comes to an end they may get to the bottom of this. We really don’t need anything else after having Gca or in my case LVV

[HeronNS in reply to Devoid]

Have you been x-rayed? OA can be diagnosed through x-ray, although mine was initially diagnosed by my doctor looking at the knobs developing on my fingers when I was 40. Certainly OA has subsequently been found through x-ray of my spine, hands, feet and knees although last hip x-ray (2014) showed nothing - this was when they were trying to find out why I hurt all over. A year later a new doctor basically took one look at me, checked previous blood test results, and diagnosed PMR. (Yes, she did follow up by repeating the tests and then some!) In the meantime I'd assumed the pain was OA getting worse after nearly thiry years since diagnosis, until eventually I knew it had to be something other and more serious. A lot of the pain I've had the past few months has been alleviated by otc painkillers, even acetaminophen, so I believe my PMR flare is now gone and now I have to taper slowly back down having been at higher doses for months, but also have to acknowledge that OA is a thing in my life. Confusing PMR and OA may have resulted in my taking far more pred the past months than I needed to.

[Devoid in reply to HeronNS]

No the consultant examined me and came to that conclusion. I definitely think it’s oa in my hands but not sure about everywhere else. He wasn’t keen on sending me for an X-ray and I’m not sure if it would make any difference to the treatment. Just something else to contend with

[HeronNS in reply to Devoid]

When I had all those x-rays in 2014, the ones for the hands and feet being stupid really because all you have to do is look at my hands and feet, I was having such pain in one hip I thought I was heading to a hip replacement. At that time, and the x-ray has not been redone, my hips were the only place x-rayed which showed NO sign of OA. So it could be good to have definitive answer either way even if you have to wait until covid restrictions are done with.

The hip pain, incidentally, cleared up with pred, came back with reducing doses, and turned out to be referred pain from back muscles which my physiotherapist said were like bricks, in permanent spasm. She reset the electrical impulses in my back (dry needling) and the hip problem has not recurred.

I'd have thought knowing definitely you have or have not got OA, and if not, why do you have the pain, would make a difference in treatment?

[Suet3942 in reply to HeronNS]

I had hip pain Heron and thought ...here we go something else to contend with l , but mine was referred pain from my back as well. I started doing stretching exercises and it alleviated it.

[PMRpro Ambassador in reply to Devoid]

I was examined by a rheumy over 13 years ago in the early stages of PMR. She was insistent I had OA in my right knee and hands, she could feel it. It was a reasonable suspicion I might have OA in the right knee as I mangled it skiing 27 years ago but it was x-rayed a couple of years ago after a return of knee pain of the same sort. There is no sign of any OA damage at all. The pain disappeared a couple of months later and hasn't come back.

[Devoid in reply to PMRpro]

I must say this feels very different than the aches and pains I had prior to getting ill , I don’t think they will look any further at the present time. I wouldn’t be so bad if I could just get a decent nights sleep

[Jackoh]

Yes I’ve had a recent diagnosis of osteoarthritis in my big toe. I have just presumed it has been coming for some time and as I go down on the steroids it is more noticeable. X💐

[Jane-s]

Yes, I’ve had problems with my back for ages ,including decompression a few years ago. Now I have so much pain and mobility is becoming a big problem. I never thought I’d be looking at adverts for Rollators with such interest !I’m sure Prednisolone has accelerated the OA but at least it’s saved my sight. A very difficult balancing act.I do wonder about CBD but worry about drug interactions as I’m on so much stuff. Does it help pain?

[Pixix]

Yes! Hands, wrists, toe joints (started in big toes, spreading to others). Rheumy referred me to orthotics dept who are helping with feet and in ten days time I go to see somebody to help with my hands (but this has been a three months wait for hands!) excellent service when they’re so behind I think. Had slight trouble only before pmr and used to get thumbs injected three times a year. All much worse since I got to 5mg and below and I thought summer weather may help but it doesn’t! Hope this helps, you’re not alone and yes I think the pred masked the issue!

[Pixix in reply to Pixix]

Sorry should have said I don’t have GCA just pmr but the steroids are the same but started on 16mg not higher. But I think it’s related to the steroids so relevant, I hope.

[Cally55]

Absolutely, except I've been on them for 5 years for GCA PMR and have only got down to 2.5. The steroids have masked the deterioration I think. It has hit my hands and feet. For my hand which is a very funny shape I have a NHS referral which has been cancelled 4 times, still waiting 6 months later.NHS podiatry doesn't exist hereabouts so I went private and got some orthotic insoles which work a treat, but cost a lot.

Incidentally I take morphine and pregabalin and paracetamol for the after effects of back fractures and the pain breaks through. I can't take NSAIDs, although friends and family tell me naproxen is good.

[HeronNS]

My OA was originally diagnosed 35 years ago, and I think I had some earlier, so at least half my life ago. Initially I thought PMR was the OA getting worse. I'd taken glucosamine sulfate for many years at that point and thought it had stopped working. Also I avoided taking any painkillers for the OA, limiting my use of those to treating headaches, as they can interfere with cartilage renewal. How I learned that in pre-internet days I'm not sure, probably an article in a magazine or newspaper.

Pred sorted all my aches and pains although some OA re-emerged as the dose decreased. I have quite recently learned that pred can have similar destructive effects as painkillers like aspirin and its kin so although pred has helped PMR it's not been so good for OA.

I had a knee injury last year which resulted in knee x-rays being taken and the discovery that the mild OA diagnosed some years ago was becoming quite severe. Thought I was in line for a knee replacement, if not two. However physio, low level light treatment, changes in my behaviour re walking and so on, and introducing the use of Flexiseq, has definitely has delayed the need for surgery. Last Novement I could hardly walk, was using poles to offload weight (next step would have been crutches), and now I'm walking regularly although not for as long as I did in the "good old days" of 2019! I have OA not just in my knees but also both lumbar and cervical spine, which causes some referred pain in shoulders and hips and can make PMR flare-ups confusing because they might not be PMR at all, but OA of the spine if not the joint where the pain occurs. Also hands and feet. I have physio exercises for nearly every afflicted body part!

Re the Flexiseq: it was only after I started using it that the chronic rather severe and debilitating swelling in my injured knee rapidly got better. This had been going on for many months by then so I have to assume it was more than coincidence. However it does it, it has eased some sort of chronic irritation/inflammation. I am quite thin so it may be relatively easy for this topical treatment to reach the areas where it can work, and I'd expect for the same reason it may work more quickly to treat a knee than a hip as the knee is closer to the surface of the skin than a hip joint.

[123mossie]

I developed bad hip pain as I reduced pred, it turned out to be moderate oa, I've now had a hip replacement, privately unfortunately.

[beringer]

Very common thing, Preds is famous for that!!! But it’s about all We’ve got…