Avascular Necrosis - Danger of Prednisone

[ripon1756]

Please search AVNawareness7 on Twitter to find out about the danger of Prednisone and cortisone medication.

[Paul_Howard Partner LUPUS UK]

I would like to make people aware that Avascular Necrosis is a rare complication of steroid treatment and people are usually only at risk on high doses (for example, greater than 20mg per day). Thank you for helping to make people aware of this potential issue.

I would encourage people to discuss the risks of any treatment with their consultant and balance them against the benefits they can have. Steroids remain a very effective treatment for lupus flares and in many cases are life-saving.

[ripon1756 in reply to Paul_Howard]

Sorry Paul, but you are very much mistaken with your information about Avascular Necrosis. I was given steroids for only a very short period of time for an overactive thyroid gland problem and 20 years later I was diagnosed with AVN and ended up with 2 THRs. After my first hip replacement I got DVT in that leg and I've since learned anyone with underlying blood clot problems should not be prescribed steroids. That's why I believe everyone should be tested before being prescribed steroids and research should be carried out to find alternative and safer medication. By the way far more people (many quite young) are diagnosed with AVN in the USA than in the UK - WHY?

[gazzasoens in reply to ripon1756]

I have lots of AVN all over body but no body has said I have osteonocrosis. I keep getting sent for MRI and CT scans. I need my neck fused and have problems with knee's, hips, back and wrists and other places. But I keep getting the brush off.

I am only 47. I feel 87.

[ripon1756 in reply to gazzasoens]

Hi Gazzasorns,

Osteonecrosis and Avascular Necrosis are both the same. I don't know whether you live in the UK or USA but whatever you do insist on having an MRI scan as this is the best way of ascertaining at what stage your Avascular Necrosis is at as you can't go on like this and m to d something done about it.

[ripon1756 in reply to gazzasoens]

Hi Gazzasoens,

Ostenecrosis and AVN are one and the same. Osteonecrosis is the name used mainly in the USA. Don't allow yourself to be fobbed off, demand an MRI scan to find out how advanced your AVN is or change Consultant.

[Paul_Howard Partner LUPUS UK in reply to ripon1756]

It is unfortunate that you developed Avascular Necrosis after only a short course of steroids, but it still remains a rare side effect and there are other causes for the condition. Research is constantly undergoing to find alternatives to steroid treatment because of the many side effects they can cause, but they still remain very important in the control of lupus flares, especially in those with organ involvement.

I'm afraid I don't have an answer for why more people are diagnosed with the condition in the USA than the in the UK.

[ripon1756 in reply to Paul_Howard]

Sorry to tell you Paul but you are way off beam about steroids. Dr. Glueck, a well known doctor in the USA, wrote in a report that anyone with an underlying blood clotting disorder should never be prescribed steroids. Therefore, I believe people should be tested before being prescribed steroids. Steroids is the main cause of people being diagnosed with AVN in the USA and no doubt here in the U.K. too. Get your facts right Paul.

[Hippy77 in reply to Paul_Howard]

It is not a rare complication at all. In fact, steroid induced AVN is the leading cause of non trauma related Osteonecrosis (AVN). AND, it can take as little as one dose of steroids to cause AVN. There are 10,000-20,000 new cases being reported each year. That number will go up as soon as doctors start testing for it sooner based on patient history. I encourage people to do their OWN research; there is an Internet FULL of literature on AVN and studies done as well. Moreover, there are more doctors who know nothing of the disease versus doctors that do. Therefore it is beneficial to patients to do their own research.

[ripon1756 in reply to Hippy77]

I totally agree with you Hippy 77.

[nanleighh]

I agree with you Paul, I'm a nurse here in the US who happens to have lupus and avascular necrosis is a very rare side effect of taking high doses of corticosteroids It's always a risk versus benefit issue when you take any drugs. Even Tylenol has toxic side effects. Discuss this issue with your rheumatologist , Or primary care physician. The benefit to most people with autoimmune diseases far outweighs the risk. Make sure you have dexa or bone scans regularly to make sure you're not developing osteopenia or osteoporosis.

[ripon1756 in reply to nanleighh]

I'm sorry to inform you nanleighh but you couldn't be further from the truth. I live in the UK and as I told Paul, I was only given steroids for a very short time for an overactive thyroid gland problem (which definitely could not be described as a high dosage) and 20 years later I was diagnosed with AVN and had 2 THRs. I have since been in contact with the Depatment of Health who acknowledged there was a problem and they hoped to include a warning on the list of warnings about the likelihood of contracting Avascular Necrosis some time in the near future. You say you live in the USA but obviously you have not been on the growing number of Avascular necrosis and Osteonecrosis web sites where your eyes would be opened to the growing number of people (many of them quite young) who have this agonising and debilitating disease.

[ripon1756 in reply to nanleighh]

I agree that people with asthma do need prednisone. As stated before, however, Dr. Glueck, whom you will no doubt have heard of stated in a report that anyone with an underlying blood clotting disorder should never be prescribed steroids. After my first hip replacement I was diagnosed with DVT. This problem could have been dealt if people were tested before being prescribed steroids.

[Bronagh2015]

I too agree with Paul and Nanleighh, we all know the awful side effects of steroids but if you have ever had a seriously severe and life threatening flare believe me you will take any amount of steroids to get on top of it. Before steroids were invented someone with lupus could only expect to live 5 years.......I for one would be long gone!!!!

[ripon1756 in reply to Bronagh2015]

I'm sorry to learn your life was endangered if it wasn't for the fact you have taken steroids. However, 2 years ago I had 2 very nasty flare-ups caused by being given steroids once more for bronchial flu and I now walk with a cane and use a walker for shopping. All this was caused by blood not circulating round the hip bones leading to death of the bones.

[ripon1756]

I would add nanleighh, I was never ever warned about the danger of Prednisone when I was given it 40 years ago. I had my hip bone replacements in 1996 and 1998 respectively.

[nanleighh]

I'm not trying to minimize your problems Ripon I'm sorry that that happened to you. But it's a disservice to tell people that prednisone causes avascular necrosis because that most often is not the case. there are many different causes of avascular necrosis long-term use of high doses of steroids being one of them. That type of ad is what we call a fishing ad propagated by attorneys to try and get enough people together to file a class action lawsuit. I'm not saying your problem wasn't caused by short-term use of steroids, but that is not usually the case. Before the use of corticosteroids the average lifespan of somebody diagnosed with lupus was five years. Now most people who have Lupus can live a normal life span solely due to the use of steroids and other more modern DMARDS . That is the risk versus benefit advantage.

[ripon1756 in reply to nanleighh]

I'm sorry to say but you obviously don't know the first thing about Avascular Necrosis - if you had it you would really know what pain is. Avascular Necrosis can attack any bone in the body and if not treated quickly enough, you can end up in a wheelchair permanently - which if you allowed it to is a death sentence in itself. However, I've met a courageous group of people whose only purpose in life is to find a cure for this debilitating and agonising illness. I'm a strong believer in prevention. That's my main aim in life not trying to sue anyone as you appear to imply. As you know as a nurse Prednisone is a steroid so everyone has every right to be warned about this dangerous drug. Steroids and alcohol (I don't drink) are the 2 main causes of Avascular Necrosis - if you know any others, please let me know. If you want to learn more about Avascular Necrosis, please search for OUCH Ostenecrosis on Facebook or AVNawareness7 on Twitter,

[Paul_Howard Partner LUPUS UK in reply to ripon1756]

There are a number of causes for Avascular Necrosis, the main risk factors are;

Trauma, high-dose use of steroids, excessive alcohol use, Bisphosphonate use, radiation therapy, organ transplantation. In addition certain medical conditions are associated with it, one of which is SLE. The Mayo Clinic website has some very good information about the condition - mayoclinic.org/diseases-con...

It's fine to prevent information to make people aware of this potential side-effect, however, we must insist that all information presented her is balanced and accurate. People should always discuss risks compared to potential benefits of any treatment with their consultants and follow their advice. We will not allow scaremongering and biased information on this site.

[ripon1756 in reply to Paul_Howard]

Point taken. However, I would point out that I'm stating facts not scaremongering which you imply. If you or any lupus patient had Avascular Necrosis, they'd know what I'm talking about and begging to have a limb replacement, anything to put them out of their agony, especially young people who have to wait a long time because of their age.

[Paul_Howard Partner LUPUS UK in reply to ripon1756]

Facts need to be backed up be clinical evidence to be accurate. The image that you have shared with this post uses a figure of 70%, but clinical evidence says that the risk of developing AVN from high-dose steroid use is between 5% to 40%. In addition, the wording is incorrect. It does not say that steroids CAN cause AVN, but says that it does. This suggests that it will happen in all cases, which is incredibly inaccurate.

[ripon1756 in reply to Paul_Howard]

I'm not implying everyone who takes steroids will get Avascular Necrosis. My cousin's wife has asthma and has taken steroids for 30 yrs. but she still regularly gets checked by the DEXA scan - so obviously they are being cautious. I got DVT following first hip bone replacement and have since learned that anyone with blood clot issues should never be given steroids. Therefore, I think everyone should have a blood test before being prescribed any steroids and that research should be undertaken to find safer alternative medication.

[Paul_Howard Partner LUPUS UK in reply to ripon1756]

You may not have been directly, but the image that you shared does.

I'm afraid it is not a fact that 'anyone with blood clot issues should never be given steroids'. Steroids are often needed to be used in patients that have antiphospholipid syndrome either as an overlap condition with lupus, or on its own. Your experiences will not necessarily reflect the majority of cases and it sounds as though you have been very unfortunate.

As I mentioned previously, research is constantly being undertaken to find alternatives and to reduce the risk of side effects from steroid treatment.

[ripon1756 in reply to Paul_Howard]

My information came from a paper Dr. Glueck, a renowned doctor in the USA, who carries out blood tests, etc., and is very knowledgeable.

[Paul_Howard Partner LUPUS UK in reply to ripon1756]

Do you have the name of the paper(s) that you took this information from as I don't see the reference in the articles of his that I have found?

[ripon1756 in reply to Paul_Howard]

Sorry I haven't as I read about it a few months ago. He tests everybody's blood if you send him the results but living in the UK I can't do that unfortunately.

However, he has carried out tests on my USA friends' blood and offered advice.

[Hippy77 in reply to Paul_Howard]

You can EASILY access that sort of medical literature on the Internet. God gave us two ears for a reason, and as medical providers, it's your job to listen and learn, not be put off by a person having more knowledge of a disease than you. Remember, there's always someone in the room smarter than you, learn from their wisdom.

[ripon1756 in reply to Hippy77]

I presume that you have had hip replacements due to AVN.

[Hippy77 in reply to ripon1756]

Not yet! Mine just started getting bad. MRI this month to see what stages my hips are in. Also have to check shoulders and knees as I've having the same familiar symptoms in those joints as well. I have met more doctors who know crap about AVN than ones that do. Truly the only docs that DO have somewhat of an idea are orthopedic docs or rheumatoid docs

[ripon1756 in reply to Hippy77]

I agree with absolutely everything you say. I'm on an American website for AVN and I've learned so much about AVN, in fact I still am learning - we try to help each other so much,, which is just as well because some in the medical profession know little or nothing.

I had both my hip bones replaced in 1997 and 1998 due to AVN.

[Hippy77 in reply to ripon1756]

So you may need another surgery? I know the hardware they put in only lasts so long. I pray it's only my hips and not my shoulders as well.

I've met a lot of doctors who just piss me off because they tell their patients whatever is convenient for them instead of helping them get educated on their illness.

[ripon1756 in reply to Hippy77]

Unfortunately, many doctors are more ignorant about the implications of having AVN. I went to see my doctor the other day because I'd developed shingles and when I broached the subject of AVN being caused by steroids, I was told by the doctor that one of the causes was as the result of being treated for cancer, leukaemia, etc. Therefore, I just gave up as I realised I wasn't getting anywhere. However, I had a booklet detailing the causes of AVN which I'd received from my AVN friends in America and left it at the reception desk for people to hopefully read and educate themselves about AVN.

I had 2 nasty flare-ups 3 years ago and now walk with a cane but the pain has eased, so I'll see how things go as I'm now just turned 80.

[ripon1756 in reply to Paul_Howard]

As I told your colleague, please feel free to look up Avascular Necrosis under OUCH Osteonecrosis on Facebook and Pinterest and AVNawareness7 on Twitter.

[Bella767 in reply to ripon1756]

Came across your thread. I've got AVN in my ankle.

I had a short dose of prednisolne for asthma, after just 4 days of taking the drug I went to AE with the feeling my ankles were broken, felt like they'd been smashed into smitherines. they said stop taking them immediately.

8 years on, suddenly my regular hour run became my worst night mare, when X-ray and MRI diagnosed AVN in my ankle, no other bone, coincidence?

[ripon1756 in reply to Bella767]

Hi Bella 767,

So sorry to learn you too have AVN after taking Prednisone. I didn't get it in my ankles but I had to have both hip bones replaced because of it. It's dreadful the horrible agonizing pain it causes. I really hope they can do something for you. I wish they could find an alternative to Prednisone - they should at least have means of testing people to find out who's vulnerable.

[Hidden]

Hi Ripon. I'm really sorry you have had such a negative and painful experience. I just wonder how helpful this is for other people who are anxious about starting new treatments. Every drug can have nasty side effects and usually our doctors are aware of the risks and keep patients informed - we have to give informed consent. The unfortunate thing is the side effects of Lupus are not only detrimental to quality of life but can be deadly in themselves.

I hope you get some answers and some sort of relief from your condition. You have been dealt a very bad hand. I do feel very sorry for your suffering.

[ripon1756]

Thank you Shazzer for your kind words (which makes a change). However, compared with other people (especially younger people, some with young families), I have been pretty lucky to get away, so far, with just 2 THRs. Some people with AVN get it in various parts of the, I.e. hips, knees, shoulders and ankles, etc. - the list is endless and 1/2 have had amputations. Therefore, I'm sure you'll appreciate their quality of life is next to nothing.

[ripon1756]

I would Shazzer, that I was never informed about the danger of steroids. In fact it was many years later when I mentioned this to a nurse that she replied that doctors weren't aware of how dangerous steroids were then - I'm going back 40 years.

[JB2012 in reply to ripon1756]

Hi Ripon,

I have to agree with you 100%. You are not alone!! I am a 35 year old female that only has a history of asthma and bronchitis due to the use of Prednisone for 8 months I know have bilateral hip AVN and need bilateral hip replacements. AVN is debilitating!! I am also an RN and had never heard of AVN till it occurred and not one doctor or nurse ever told me this was a side effect.

[Athena1333 in reply to JB2012]

I am in the same boat as many of you who have developed AVN due to prednisone or other steroids. I was put on a short term 5mg a day dose of prednisone and now have AVN in both of my knees. I have none of the risk factors that can cause AVN. I haven't had cancer or cancer treatments or any diseases and I don't drink or smoke. The only thing I have had was the short term prednisone treatment to help me get over an illness. I was told at only 34 years old that if I was older I would be given a knee replacement, but due to my age it is not something that they can not do. Due to the AVN I now live with extreme daily pain in my knees and much of the time is quite debilitating and can no longer partake in the many athletic activities I once loved. When I was put on the prednisone I was never told this was a side effect and like the previous comment had never even heard of avascular necrosis (AVN). I wish doctors and people were more aware of AVN that is caused by even the short term use of steroids as it is something I wouldn't wish on my worst enemy.

[ripon1756 in reply to Athena1333]

I totally agree with you Athena1333. If people had the agonising and debilitating pain we had with AVN, they would probably think differently.

[bobby53 in reply to ripon1756]

I have had hip replacement,have you heard of anyone with avn of the elbows ,my elbows are clicking away the same as the hip done ,doctor has told me he has never heard of this in elbows ,i got injections in a shoulder injury 3 years ago ,now i feel as if every joint in my body is failing especially the elbows for some reason ,really painful ,

[Mozmo in reply to Athena1333]

I’m so sorry for everyone who has experienced the horrible side effects from steroid use , especially AVN. Athena, you were on such a low dose 5mg - how long did you take the short course for ? My sister in law was pushing me to ask for prednisone to treat my horrible pain from frozen shoulder . My new orthopedist told me to “stay away “from prednisone because he saw too many people who were affected by Osteo necrosis . I guess only the Orthopedists are really up with the dangers of prednisone. I did get a cortisone because I had been in pain for too long and needed some relief . Hope you are doing well.