Saw the Rheumatologist

[Hiibilly]

Hi all just got back from seeing my rheumatologist who I haven't seen since Dec 2020 when they found out my hip was crumbling. I was shocked to hear that in my notes it says 'Steriod enduced necrosis of the left hip'. At no stage have I heard this phrase used in connection to my severally crumbling hip, now thankfully replaced. Any thoughts don't know what to feel about this new information.

[PMRpro Ambassador]

I would be asking why I'd not been told - but on the other hand, you now have your new hip and probably quicker than if it had been "just" OA,

[SheffieldJane]

He should have told you. Do you think it delayed your treatment? If so, there are grounds for complaint, I would say. I would be very shocked too. I was aware of it in the listed possible side effects of Pred..

[piglette]

I was told the same on my right hip. The orthopaedic surgeon said steroids can cause such problems.

[jinasc]

Hope you do not mind me asking this question. Were you prescribed AA when first diagnosed with Pred. I noticed in your profile you were already waiting for a hip op?

Hopefully onward and upward and much less pain.

[Hiibilly in reply to jinasc]

No I wasn't prescribed anything else until they decided I needed calcium a month or two in. To be fair my GP was keeping a close eye on me, then the pandemic struck a my care tapered off. I was in agony most of 2020 every time I tapered I just could not manage the pain. Saw the Orthopedic surgeon last Feb and he said it was a 2 year wait, so my mum in law paid for me to go private. Had the hip replaced in July 2021 got a severe infection and had to have it redone in August. Feeling really well now so no complaining would just have liked all the info. I can't think that I would have done anything differently the PMR had robbed me of my life, I couldn't walk up stairs it was like the flick of a switch, one strolling around normally the next crawling on my hands and knees. Steroids made it better straight away.

[jinasc in reply to Hiibilly]

Thank you for your reply.

[Pixix]

Somewhat linked…have been advised not to have a tooth removed as at high risk if necrosis of the jaw bone, due to alendronic acid. May write a post soon, but I need to check FAQs & search on it first as there may well be relevant posts already in the forum!

[Hiibilly in reply to Pixix]

Funny you should say that I am off to the dentist in a little while might need a tooth out but not keen after over 20 odd months of pain and trauma. Might put it off until I am stronger.

[Pixix in reply to Hiibilly]

It will be interested to see what they say, it all seems to depend on what amount of pred you take right now, & whether you’ve been taking alendronic acid. But there may also be factors from my other medical issues, so I’d go ahead, but listen to their advice. I waited through 4 infections& two years due to dentists shut & Covid…but there’s a 3 months wait now, & I’m just hoping I get no more toothache! Good luck!

[PMRpro Ambassador in reply to Pixix]

Is it related to you personally do you think? I'm not sure there is a HIGH risk - but it is certainly another factor in the "thanks but no thanks" view of bisphosphonates!

[Pixix in reply to PMRpro]

I honestly don’t think so…it’s just the alendronic acid that scuppered the idea of tooth extraction. She said medium to high risk…but she did then change to high risk after discussion on my prevalence to infections if all types!! Still means medium to high risk for ordinary mortals, though! Plus it stays in your system for so long after you stop. I said I’d stop taking it for the 3 months wait until extraction…& she laughed! Not nastily, she was very helpful. When I have the letter from her I will do a post as I think it would help others…& warn others etc etc. thanks, S x

[PMRpro Ambassador in reply to Pixix]

There are plenty of dentists who tell patients to stop for a few months - which is utterly pointless. Shame there wasn't more awareness of how iffy dentists can be once you are on AA. Because if you develop toothache you could be really scuppered.

[Pixix in reply to PMRpro]

I am...scuppered, that is! I will do a post as soon as I have received the hospital Surgeon's letter. I think it would be good for others to be aware, as I had no idea! S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Well we do bang on about it here….if anyone asks about going on AA….doubt if it says anything in the information leaflet though.

[Pixix in reply to DorsetLady]

I believe I read it, but two years ago now!

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

have a look at this - healthunlocked.com/pmrgcauk...

[Hiibilly in reply to DorsetLady]

Thank you for that I have no idea how to feel about it all, a bit bewildered I think.

[DorsetLady PMRGCAuk volunteer in reply to Hiibilly]

have a look at he ROS site, and ask them for more info/advice - theros.org.uk/

[Hiibilly in reply to DorsetLady]

Thank you I will

[Pixix in reply to DorsetLady]

Thanks so much, yes, that sums it up & actually says that some dentists won’t remove teeth in case of necrosis of the jaw! After 4 infections I just want to be rid of the tooth! Will put a post on to see if anybody has had ONJ, & if others have had teeth removed with no healing problems (another factor)!! Very kind of you to find that for me, excellent article! S x

[PMRpro Ambassador in reply to Pixix]

I was very worried about having a wisdom tooth out while on relatively high doses of pred and anticoag therapy too (no AA though). In the UK it would be sent to hospital. I was laughed at here both by the hospital and my selected dentist - who happens to be opposite the front door of the hospital so I reckoned they might get me emergency help pdq. In the event - everything my dentist said was right ...