Thanks Prednisone!!! Had my hip replaced yesterday

Old Hat said...
AND you are right to warn IBDers off steroids as soon as they can transition to less damaging Rx meds; I'm sure that some expensive dental problems I've had since the 1990s came from steroid use, as oral bone loss played a part.

Oldhat,

Thanks for thinking about me. HSS was great, I was really impressed with their staff and the hospital itself was efficient and well organized, you could tell that everyone there loved their jobs. The food was decent too. And the view of the East River was awesome, I had the corner room on the South end of the hospital and could see all the boats going up river and the Queensboro Bridge.

The only reason that I started this thread was so that people could see what could happen if you take Steroids too long.

Good news on your progress. I just got a DEXA bone density test earlier this week and am waiting on results. I'm finally off of the pred but have a cumulative total of 1.5 years on pred...😵

Certainly any of my fellow long term pred users should do the same.

Great news Keith. Hoping for a quick, full recovery for you. Sounds like everything is on the right track.

Quincy,

No, the other hip is fine and I insisted on having it x-rayed just to make sure. I haven't taken steroids in over 3 years so my risks for Osteonecrosis have decreased.

I will need to have my hip replacement revised in 20-30 years, these things wear out over time.

Hi, I have been reading posts on this site for a while now. I also have avascular necrosis, but it's in my left hip and both knees. They found it in April 2015 after I had horrible reactions to a reinduction doses of Humira. The crazy thing is that I have bounced off and on steroids since I was very young. First being diagnosed with Asthma, having Gastroenteritis more times than I can count, kidney stones at 9, and then I was diagnosed at 12 with Ulcerative Colitis in the beginning and then upgraded at 14 to Crohn's though they suspected Crohn's before then. I've been through the ringer and been on pretty much everything that there is for Crohn's and UC. I have broken multiple bones over the years doing cheerleading and the doctors did think that the prednisone was a contributing factor.

So I'm not sure how suddenly yours developed, but mine was pretty much overnight. I moved and my Humira deliveries were messed up for almost three months, so I spent that time on 40 mgs of prednisone per day. The flare had started the previous November and it was late Feb when I finally got my Humira from the neighbor that kept receiving them who finally decided to turn them in to the office, but she left them out for more than 24 hours. I called the company and they said since it was winter I should be good. I took the first four shots and had the usual tiredness only it started feeling more like that tiredness you get with the flu, and then came the joint pain. First it was like the soreness you feel when you have a high fever or the flu, but by day 6 after the shot it was more like an insane leg day at the gym. I went to sleep and woke up to insane pain from the waist down and each joint was insanely swollen and burning up with fever to the touch. I tried to walk and it was absolute agony, it literally felt as though my bones were breaking with every step I took. I went to the ER and they gave me multiple doses of steroids, but they had zero clue as to what was going on. They bumped up my steroids to 60 mg and prescribed pain meds and meloxicam. I asked my doctor to test and see if maybe I had built up antibodies to Humira, but the test was negative so he had me proceed with the next round of injections that the company sent out to the correct address finally. I was also told to premedicate before my injection. Sure enough 6 days later like clockwork I woke up to the same excruciating pain in my joints only this time my wrists and shoulders were also bothering me. Called my doctor and he had me take 50 mg Benadryl and 60 mg of prednisone and doubled my pain meds. The stiffness from the first round never dissipated and this reaction made it to where I could only take teeny tiny steps. I ended up in the ER once again and they gave more steroids because they never considered that it could be caused by the prednisone, and despite trying to stay informed about my medications I had never even heard of avascular necrosis. I did notice that despite eating very healthy my weight seemed to be going up very quickly and I had the moon face, the fat jacket as I call it that makes you feel like you have a too tight jacket on. I was also sweating like crazy and having high blood pressure and tachycardia issues. (Sorry this is so long I was just trying to include as much history as possible, especially since I am new and this is my first post.)

We consulted with a specialist in Atlanta at Emory and he thought that perhaps it was serum sickness since they said I tested negative for drug induced Lupus. We finally decided to not taking anymore Humira but the day my next injection was due I woke up to the same pain, but could barely move. I ended up going via ambulance and this time I was admitted straight away. They quickly realized that I also had prednisone induced diabetes in addition to everything else, but that didn't stop them from continuing to give me steroids thinking it would help the joint pain. It took about 10 days before they diagnosed me with the avascular necrosis stage 4 in my left hip, and 3 in both knees. I had had an MRI of my lower back and hips to follow up on a different issue in January and there were no signs of avascular necrosis so I basically developed it during March and them upping my steroids and the loading me up with even more when I had each reaction.

They tried Remicade while I was in the hospital and 2-3 hours into I had the same reaction with the joints becoming insanely painful and the worst part was the fact that unlike arthritis pain that will go away after rest because of how far gone my hip is the pain is nonstop 24/7 even when I'm at rest. So finally to the questions that I have for you.

I saw in your signature that you are on Stelara, and in another post I read where you came off of it to have your surgery. Well I am
just starting Entyvio Infusions and yes I have had the joint pain flare pretty badly after the first infusion and after today's it's been even rougher. I have my next infusion in three weeks and then they will be every two months. I definitely am ready to be off of the pain medication because I am tired of all the judgement that comes along with being on them and I have been in and out of the hospital since this flare started out in late December/early January of this year. During my last hospitalization after my first infusion two weeks ago the doctor decided that I was an addict and just trying to get high on IV pain meds, which couldn't be further from the truth. I just wanted to stop the vicious front backs that prevented me from being able to take any meds by mouth or by suppositories, so for five days I suffered the pain of it without being given even a 5 mg oxycodone pill to try, though he did try to force 800 mg ibuprofen as my only option for relief. Yes, I caved and took it and it tore my stomach up so badly. Ironically when he sent me home he sent me home with 180 5 mg oxycodones, but not my patches after telling me that I am a drug seeking addict who desperately needed to go to rehab and come off the fentanyl and oxycodones. I have never been so embarrassed or felt more ashamed in my life.

So with being on Stelara how did you and your doctor decide when to halt it to replace your hip? What stage of AVN were you at when you had your hip replacement? I don't have a pouch, so I'm really nervous about the possibility of still being in this flare when we do the replacements. On days when I have to go more than 5 or 6 times the hip pain flares even more. I had to have a surgery back in September, but I was on a very low dose of prednisone, protonix, karafate, Azathioprine, fentanyl, potassium, vitamin d w/calcium, vitamin d, b12, Promethazine, oxycodone, and Bentyl.

How's the Stelara working for you now? Any advice you wish someone had told you before your surgery? I've got to have three replacements and we are starting with the knees first. I actually have it in my jaw as well and my teeth have just crumbled between the corticosteroids, malnutrition, all of the vomiting up stomach acid and bile, and I am sure it doesn't help that I tend to grind my teeth when I am stressed.

~~TLDR~~
I also have avascular necrosis from prednisone and Humira, it's in my jaw, left hip and both knees. It developed very quickly starting late Feb 2015 and occurred like clockwork in a serum sickness pattern of waking up in excruciating pain barely able to walk between the pain and insane stiffness that impeded my range of motion, and because nobody knew that was what was behind the excruciating lower joint pain they kept pouring in more and more corticosteroids. I ended up gaining 65 lbs in one month, which I believe all the excess fat aided in choking off the blood supply to the joints and also helped to cause it to progress through the stages of AVN so quickly. I've been dealing with Crohn's since I was a **** and am now 31.

I'm currently in a flare up that's been going on since January is he when my large intestines minus the cecum collapsed due to all the inflammation. Been back on prednisone since then, can't seem to taper below 15mg. I had a similar reaction to the Entyvio Infusion that I just started. Had 2nd infusion yesterday and the joints are acting up again though not as bad as the first time, which I think is thanks to the premedication. Despite basically being on bed rest I have lost 28 lbs this month alone.

Have to have multiple surgeries as soon as the flare up is under control, so just looking for advice and stories of experience with being on biologicals and how it impacted surgeries.

~~~~~TLDR attempt 2~~~~~~~
Got Crohn's, prednisone and Humira caused avascular necrosis, docs didn't know that was what was wrong so continued to up steroids so was at stage 3-4 at diagnosis. On Entyvio 2 infusions in. Want to know what to expect for scheduling the 5-6 surgeries that are on hold due to flare up. How'd you guys space or time the breaks of infusions?

Sorry for jumping in on your thread like this.

I am very tough, but I wouldn't risk losing all of my progress by doing something like having both knees done at one. The right one was the one that cheerleading and dance killed many years ago. They are worried about the fact that I have a floating patella that gets snagged on the rough cartilage and throws me being an issue. So it's right knee then left hip and then left knee. Unfortunately this last Infusion has my right hip hurting really badly as well.

I have another loading dose and have to finish my current prednisone taper before I can even begin to discuss the surgery dates. I also have to get back into the warm water physical therapy program because all the hospitalizations and the lethargy from this flare have me feeling insanely weak. That could also be attributed to my diet of boost plus and boost breeze on days I can't do full Liquid's.

I made myself stop depending on the walker, though I do need my cane occasionally for stability. I couldn't agree more about the fear of RA and the sense of relief when you find out it is AVN. There is this doctor who claims that with a wry specific vitamin cocktail and diet he can help to reverse some cases as well as prevent the reoccurrence of avn as the joint replacement gets older. Apparently we lose a bit more bone each time they have to repeat it.

My biggest fears are just having to have multiple replacements over a lifetime, the pain not being resolved by the replacements though if it decreases by 40% or more I will take it, and of course the fear that this flare up won't be controlled by the Entyvio and I will have suffered the adverse effects for no reason.

Thanks so much for taking the time to reply, and I look forward to hearing from you when you have some time.

I have had multiple injections including cortisone into an area that definitely doesn't need any more steroids. I saw my orthopedic surgeon earlier and he suggested trying some of the other injections so when I go back I will bring it up again or email him tomorrow.

I have pretty much unlimited pt. The only thing that's limited is inpatient pt and rehabilitation. Though it's not as limited as I was lead to believe. I was offered it right as I was diagnosed but they made it seem like if I did it once I couldn't do it again.

I just want off of the pain meds that constantly get me judged. Especially when the reaction my initial infusion had required me to go to the hospital and have one of the worst experiences I can remember. This last infusion did the same only instead of of it coming up and out it was only coming up, so I was able to use suppositories and avoid the hospital for now.

SAP36,

The way they explained it to me was that my hip was not going to get any better, in fact it would only get worse until they replaced it. Mine was bone on bone; they did say that I'd have some good days when the bone wore away a certain direction (they were never great days) and there would be really bad days (they were correct).

The sooner you get it done the better.

They do stem cells for knees (it's a very new technique and not covered by Insurance YET) but not for the hip. maybe you want to start with the hip first and then the knees.