Avascular Necrosis of femoral head (AVN)

[pugrescue]

Dx with GCA in March/19, never had a single symptom of arthritis/pmr/or any joint problem of any sort in my life. Have now tapered to 13mg prednisone, now quite suddenly over the last 2 wks, terrible hip pain on left side only. Did not injure it that I know of. Routine scan in Sept showed -2.5 of femoral head. Pain seems exactly like that hubby went through before hip replacement. Cannot understand how this came on so quickly. Does anyone have experience with this? Have read every article available on AVN, but this forum has been so helpful every step of the way since dx of GCA thought it was best to see what the advice was here. BTW cumulative dose of pred is close to 8g. Have gp appt on 27th, should rheumy handle this????

[PMRpro Ambassador]

Sorry - not clear (or I have pred head today) but have you been diagnosed with AVN or are you suspecting it may be?

Either way, I think it would be an orthopaedic specialist who would deal with it and an MRI is the better option for diagnosis as plain x-rays may show nothing in the early stages.

[pugrescue in reply to PMRpro]

no diagnosis, just trying to figure it out while I wait for appt date. GP is on holidays, but I could try to get a sooner one with rheumy. I probably did not make it clear either, how absolutely excruciating this is. Hubby cannot move much yet since his hip replacement and I HAVE to be able to look after/lift/carry my pugs. So very discouraging.

[PMRpro Ambassador in reply to pugrescue]

If it is as excruciating as I imagine - the ED is the place to be asap. AVN can be managed - and so can the other things that are also possibilities. But ignoring it isn't going to achieve anything,

[Jillbowles]

I agree, MRI and orthopaedics. Similar to you no history of joint problems. 6 months following PMR diagnosis extreme pain in left hip. It was the Rheumatologist who then referred me to Orthopaedics. I was diagnosed with Avascular necrosis and arthr it is and had to have hip replacement. Same as you it seemed to come out of nowhere and my mobility went downhill very fast. Quickly recovered from hip replacement despite being on approx 10mgs of Pred.

[pugrescue in reply to Jillbowles]

So good to know that you got help, and now doing better. I had also wondered how low you had to be on pred before op. Hubby had hip replacement in late Oct, and also was so much better in just wks. His took yrs to develop, that is why I was investigating AVN. Will relat these experiences to my gp....appt on the 27th. Thank you so much for the info. Prayers, Joan

[Omanain]

The sudden excruciating pain I had in my hip - I just stood up one day and couldn't walk - was caused by an "insupportable fracture" This did not show up on a normal ex-ray and was only after my rheumy sent me for an MRI scan that it was discovered. It healed itself in a couple of months and is not a problem for me now.

Interestingly, according to my Dexa scan I do not have Osteoporosis.

[Ciar]

I just had mri last month because of similar pain pattern. I’m on crutches, the pain is so bad. It turned out that I did not have AVN. Just a large bone spur that progressed quickly to nasty arthritis and a labral tear. I had not had any painful joints either until last summer. I’m probably going to do the hip replacement but I’m very worried that much of my pain could be from worsening low back issues.

[pugrescue in reply to Ciar]

When hubby started having back problems, he did chiro, massages etc. Even had a laminectomy.....which did nothing. After hip replacement, all the other associated pain back/knee/hip etc is gone. He is on track for golfing next summer after not being mobile at all. So what I am trying to encourage is to have the hip done asap, and then see what was cause or result. Thanks for the reply. Joan

[Ciar in reply to pugrescue]

Thanks so much for the encouraging words. I’m having such a hard time with this. I did the same thing as you, reading about AVN, as my pain pattern followed that. My orthopedic doctor didn’t even tell me that he was checking for that, didn’t want to worry me. Good luck, I hope your situation resolves well.

[HeronNS in reply to pugrescue]

While I'm not recommending this route an acquaintance of mine, years ago, a much older woman than I was then, was on a really long wait list ( think she expected a year wait at that time) to have a hip replacement. However she accidentally fell and broke the offending hip, which promptly moved her to the top of the list for the replacement! She actually seemed quite happy about this so I assume the fracture was such that it didn't cause too much of a complication.

[wendythom]

Hi

You have my sympathies! I have been on pred for many years now. In 2017 my hip completely disintegrated due to AVN. The pain was off the scale and due to 'up to two years wait' on the NHS I took out a £12k loan to pay for the hip privately. I was in tears with the pain every day, so was desperate. I then had adrenal crisis in hospital and they doubled the steroids. My advice is to keep trying to get help - don't be fobbed off. My GP was trying to give me exercises before the op even though I couldn't lift my leg! It was six months before they looked properly at the x rays and decided I needed surgery, by which time the femoral head had completely gone.

I wish I had not been so polite and patient about it all. You know your own body and if the hip hurts that much then you need help!

I wish you lots of luck x

[pugrescue in reply to wendythom]

Thank you so much for the reply. What a brave person you are! I pray that you are well now, you deserve so much better. Here in Canada, you cannot get surgery done privately. About 10 yrs ago when hubby needed bypass surgery, had to go to the USA. In Canada, we are expanding assisted suicide instead. What a great system.

Again, thanks for the info and the encouragement. Joan

[Ciar in reply to wendythom]

Me too! I went 5 months being completely ignored, then 3 more waiting. Meanwhile my pain became insane and I completely lost my mobility. I didn’t have AVN (though my dr suspected that). Sometimes I still wonder if I have AVN, even though it showed arthritis on MRI.

[pugrescue]

wait times here right now for hip or knee replacement is about 18 months. when hubby had heart problems, after bad stress test, wait time for diagnostic angiogram was 5 months. went to Seattle found he needed emergency bypass which they did the next day. Definitely would not have survived without going outside Canada. The drug prices I don't know. But at Virginia Mason where we had the bypass done, the lady in finance told me her hubby had triple bypass the yr before and the cost was about $105,000 through her insurance. When we got the bill it was "only" about $40,000. So go figure that! MRI down in US for elbow is $1200 with insurance and $300 paying cash. Something is wrong somewhere. BTW after the heart surgery we applied to our provincial health for reimbursement as it turned out to be an emergency surgery. After fighting with them for nearly a year, they finally agreed to give us the amt they said surgery would cost in Canada, and we got a check to $3,200. So that shows why we cannot keep good doctors etc up here.

[pugrescue]

yes of course we paid the full amt billed. it saved hubby's life, and "most" days well worth it. LOL. No you cannot get coverage up here, and paying cash is not allowed. You could also die of old age before treatment...... what a country.

[HeronNS]

As far as I know in Canada Medical Assistance In Dying (MAID) is covered by provincial medical services insurance (MSI). In other words, publically funded, like any other approved, necessary medical service. I don't think that was actually the question you asked, though, was it?

One, not the only, reason our waiting lists are so horrendously long, and waits in emergency departments completely unreasonable, is because of the number of people who should be in long term care facilities, of which there are not enough, and are now unkindly called "bed blockers" in hospitals. So the public system, either way, pays for you to die. The exception is there are fairly high costs to be in a nursing home, so your end of life, if not your actual death, could be very expensive, depending....

[HeronNS]

For what?

[HeronNS]

I don't really know about the nursing homes, depends where you live I guess. MAID is performed when the patient is ready. Currently the government is working on updating the legislation to make it more responsive. At the moment you have to be competent to answer a bunch of questions just before the procedure, which means some people have chosen to die before they actually would prefer because they didn't want to risk losing the power of communication and thereby become ineligible.

[HeronNS]

Yes. Legal since 2016.

canada.ca/en/health-canada/...

[HeronNS]

I believe this is why the legislation is so clear that the individual involved has to be completely compos mentis. The issue right now is to allow us to say what we want ahead of time and have that wish stand even when we can no longer respond to the questions.

Withholding treatment from someone who is past recovery is a different issue.

[HeronNS]

Yeah, I remember the shocked expression on the face of a doctor when she said at least PMR doesn't kill us and I replied that sometimes one wished it would!

[Grammy80]

My heart just breaks listening to the wait time for needed surgeries!!!

I wish I wasn't familiar with this issue...but alas~!! I am. In July of 2000 pain in my left leg woke me and I couldn't lift it. When I went to stand...it was really painful. I hobbled around for six weeks between chiropractor and accupuncturist BECAUSE my son was getting married on August 11, the first of my children to do so and I wasn't going to miss that wedding...so I deliberately stayed away from an orthopedic doctor. I was all about killing the pain which the accupuncturist did. I had an appointment set for when I returned from Canada and the four days of festivities.

I had avascular necrosis and my femur had fractured from just rolling over in bed. The surgeon said my marrow was like sponge candy. I had asthma but for five years before being properly diagnosed everytime I would have issues with breathing my GP put me on prednisone.....frequently for five years.

When I woke from the surgery I was elated...no more pain. My recovery was great with lots of exercise and therapy. In 2017 I had to have a revision/replacement because of wear. We owned a blueberry farm and a small winery....I was always on the go.

I'll be 80 this September and now with GCA, I just can't worry about my bones. So many other priorities.

I truly hope you can get into an ortho soon. Doctors are more accessible here in the states for sure...but there are so many inequities~!!

Fingers crossed for you.....