hip replacement experiences? - Hughes Syndrome A...

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hip replacement experiences?

GinaD profile image

So I saw the orthopedist PA at Duke yesterday. She said what all orthopedists have said -- that its probably time for the hip replacement (but I'm only 57!) But they took a fresh X Ray and on this film the narrowing (better description would be "total lack of") space between the left femur and the pelvis is unmistakable now.

But on the other hand, since I raised my INR to 3 - 3.5; increased the topical naprosyn cream; and added 3 1/2 naprosyn pills a day the inflammation retreated to the point where the exercises began to work and now, though not pain free, my usual daily pain level is between 1.5 - 3. Four months ago my pain level was 4 - 8.

So do I, or don't I? I know if I wait too long there may not be enough healthy tissue left for the surgeon to produce a fully functional, pain free hip. (Thats the mistake my Father-in-Law made.) But on the other hand, -- oh why beat around the bush? The thought of surgery with my multiple drug allergies (yes, I've gone into anaphylaxis) and upsetting my prudish immune system -- scares the BeeJesus out of me!

And no, I'm not looking for an up or down vote from any of you. But I would appreciate any data about hip replacement experiences in us Hughies.



12 Replies

Hi Gina:

Recovery will be easier younger. The older you get, the harder recovery is and the more complications are likely. I have NEVER heard of a hip replacement person who was sorry they did it. Every person I have spoken to, at any age, was sorry they waited so long. So if it is the biggest source of your many pains, it makes common sense to be rid of it as soon as you can manage it, while your body is strong. Especially if your MRI is showing slow but sure deterioration, and if it gives the surgeon the best chance for total recovery, and it if you can learn from others' mistakes - you've answered you're own question.

So what's left? What is scaring you most? That the surgical jolt to your system will ignite still another autoimmune disease or activate one you know you have? Either way, if it happens now or later you'll deal with it - if and when you have to. Your fear is your worst enemy. You need to use your head here. You can't be worried about things that may or may not happen. Concentrate on your NOW. Right now, what can you do to heal yourself? Give the surgeon and yourself the best opportunity for success. That's what one little Hughie would do if she were you.

Warm wishes for a great tomorrow.


Gina, since your hip pain is better since you have increased your INR it suggests that the trouble with your hip may stem from avascular necrosis which has been well described in Hughes syndrome. I would ask the question of whether now that you have presumably improved the blood flow to the region, might the bone heal enough that you may no longer need the hip replacement? Dr Sangle is the orthopedist who has published a lot about this with Prof Hughes.

That's another question for a doc who can read X Rays better then I. Erosion of the joint is clear, but could avascular necrosis account for this joint surface erosion?

And again, 4 ago mo the pain was at a level where the risks of surgery made sense. But now, with the pain under control, my strength returning and the functionality of the hip improving almost daily, the need for surgery makes less sense. That's why I am gathering information, and I thank you for your input. Hip replacements for APS patients are riskier. The cost/benefit analysis reads a bit different.

I await my phone or email consult with the Duke docs again, and I am seeing my GP on Friday. But if even my docs advocate different treatments, I suppose I should not feel bad about feeling conflicted.


MaryF profile image
MaryFAdministrator in reply to GinaD

Body mechanics at their best... hip replacements... I can see why you are weighing up the pro's and con's... presumably a good log of what you are allergic to now, and a more detailed care plan before, during and after. I think the younger the better myself, I hope you get there with your decision in your own time. Mary F x

The drug allergies are an issue. I am allergic to: Heprin, lovanox, fragmin, all" canes," excepting compounded preservative free lidocaine, as well as lots of antibiodics. I will have o spend a lot of time with my allergist getting desensitized or discovering what my body will tolerate. ( I dont like being so special.)

If you get it now, you will most likely have to getanother one before you are 75. So the longer you can wait, the better, as new technics and materials are being developed.

Like Canary I was also told that no one regrets having a hip replacement done, although some people don’t get 100% afterwards – but I am sorry I did it. I am 47 and I have Ehlers-Danlos Syndrome, a connective tissue disorder, in addition to APS and a long list of other conditions. I have widespread arthritis secondary to EDS and my hips are the worst affected. In 2007 I had my first hip operation, an ostechondroplasty, meant to postpone a hip replacement with at least 10 years. That was not successful, so I had another hip operation in 2008, which did not help. I got a DVT after this operation, my third. Last June I finally said yes to a hip replacement as my hip was so bad – and got another DVT whilst being on Warfarin, INR 3.0. My hip has been lose and unstable ever since my hip replacement and painful both when walking and resting. Four weeks ago I dislocated my hip replacement, I just bent down to pick up something from the floor, I didn’t have a fall or anything, just bent down and out it popped! It is the most painful experience I have ever had, and I have experienced a lot of pain in the past, and since I am opioid resistant, pain management is very difficult on me, morphine, Fentanyl etc simply doesn’t work. I got yet another DVT after the hip dislocation, both which I am still recovering from, despite now being on Fragmin 15.000 iu. The operation to put my hip back in place was my 8th operation the last 10 years, the 12th in total and I have been told that I have to be careful for the rest of my life so I don’t dislocate my hip replacement again. The planned hip replacement of my other hip is cancelled, as since this one was not very successful it is not likely it will work on the other side.

I am not writing this to scare you, just to tell you that not all hip replacements go according to plan, and the risk of getting a DVT, and subsequent post-thrombotic syndrome, which I have had for years, is much higher with hip operations than with any other type of operations. Statistically you will most likely be better from a hip replacement operation, but be sure to discuss an operation with your haematologist AND rheumatologist if you are seeing one, and any other doctor you are seeing to get their opinion before deciding. An orthopaedic surgeon will only tell you his/her opinion as they see it, according to what they see on the X-ray, but we are all complete individuals sometimes with complex issues that needs to be taken into consideration. I am being called an ‘interesting patient’ wherever I go. I wish I was just ‘an ordinary patient’

Take care everyone :-)


GinaD profile image
GinaD in reply to Helene

So sorry to hear about your joint odyssey. Thanks for sharing, and I earnestly hope your hip stays put. And if you need someone to correspond with about all this I'm all ears, ( or in this case all eyes.)


I consulted with my new, ( and so far, wonderful) internist and her opinion is that the chances that a hip replacement will be a definite improvement is not 100%. I am feeling much, much better since restarting teeny tiny doses of oral naprosyn and large swathes of a topical, but expensive, naprosyn cream. Her theory is that there is a correlation between pain and inflammation and ongoing joint damage. So, she suggests another X Ray in 3 months to see if the deterioration continues, or is on hold now. I am still waiting to hear from my Duke rheumatologist what all my exotic blood work means, and I will ask her for her revised opinion. But right now, my internist GP's suggestion sounds resonable.

I know from previous flares if I can keep the inflammation and pain under control while I exercise judiciously to strengthen that joint, that I will then be able to wind down from the naprosyn. ( yes, I know it doesn't play nicely with warfarin. But its what works for me.)

I am 53 and had a total right hip replaced a year ago. I had had problems for many years with my hips. I have Lupus and other problems and I was told about 7 years ago that they would have done the op then but because of Lupus they were relunctant to operate. I remember the Doctor saying that I will know the time myself when I'll need it done and they were right! Had the op done early last September, was in for 10 nights and I can honestly say my hip is wonderful. I was looked after very very well whilst in hospital and can only say that you yourself will know when the time has come. I just need a couple of new knees, and did you know they can give new ankles too!

But to be out of that constant draining pain all day, every day, every step, is superb.

Congrats. Well, my body says now is not the time, but I take comfort in your conviction that I will know.

I got an email from Duke I do not have lupus or RA. Hooray! So I presume it's " just" OA. But with a name I can go after a treatment. Exercise, reduce inflammation, and see if pitiformis stretches and yoga might help. I do so like knowing what direction I am going.

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