Avascular Necrosis caused by Steroids.

[ripon1756]

From personal experience I wouldn’t touch steroids with a barge pole. 10 years after being given steroids briefly for an overactive thyroid gland problem, I was diagnosed with Avascular Necrosis and had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was diagnosed with DVT in that leg and later learned from a report by Dr. Glueck (American doctor) that anyone with an underlying blood clotting disorder should never be prescribed steroids.

[ripon1756]

Over 3 years ago I had 2 nasty flare-ups and after a DEXA scan I was diagnosed with Osteoporosis and prescribed bisphosphonates (which I stopped taking). Shortly afterwards I went to my dentist to have a tooth extracted but she refused believing I was still taking bisphosphonates. Eventually a year later I had the tooth extracted when it became loose and was easily removed. I still can’t understand why my doctor prescribed bisphosphonates when he knew I had both my hip bones replaced due to AVN.

[Paul_Howard Partner LUPUS UK]

Hi ripon1756 ,

We discussed this matter within our community a number of years ago. I am very sorry to hear that you have experiences avascular necrosis, but this is an incredibly rare side effect of steroid medication, even after a long duration of treatment. I must point out that steroids can be a life-saving treatment for many people with lupus and that doctors are very aware of the side effects they cause and use them as sparingly as possible as a result. The prescribing doctor will very carefully weigh up the potential risks and benefits of any course of treatment before advising it. It is not appropriate for members of this community who are not medically qualified to advise others about their treatment.

[Cas70 in reply to Paul_Howard]

Paul - thank you so much for responding as I am due to start 10mg of Steroids daily due to disabling all over arthritis. You have settled my fears.

[nanno in reply to Paul_Howard]

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[nanno in reply to Paul_Howard]

At age 18 my blood would not clot. Diagnosed wit thrombocytoplenicpurpura and for 2 years was given doses of 60mg of prednisone to start weaning down and up until they did a spleenectomy. During that time I could barely walk, there was so much pain in my legs. I went to orthopedic and was told I had avascular necrosis and it was prednisone induced. A happy day because he gave me crutches which alleviated the pain. Then said, do not know if you will ever be able to walk without them. Prednisone made my bones soft. After 2 more years of off prednisone and on crutches, I was able to walk some without them and not so much pain. I am 69 now and can still walk pretty good, but not for long periods of time and I always have them nearby. I am in the USA and now it is considered hazardous to take more than 5mg for more than a couple months. Prednisone given for short periods can be a wonder drug. Given for long periods can be devestating.

[KellyInTexas in reply to nanno]

“Risk -vs- benefit “ is a term that United States Specialists employ when evaluating treatments in patients with challenging juxtapositions in medicine.

I am now 50 years old. I also am in the USA.

I have a very severe case of APS. ( Anti Phospholipid Syndrome.)

ITP can be associated with APS, as I’m sure you are aware.

At age 18 months old I almost lost my life to severe ITP. A splenectomy was considered, but I was too unstable to undergo surgery.

High dose steroids were administered, and after 6 weeks I improved. My Hematologist now thinks I was in early caps at that time and the steroids helps resolve the very small clots.

I still go into early caps with APS and Rituximab has been prescribed.

Last week the Rituximab lowered my INR to 2.1, unexpectedly. This is very dangerous given my propensity to Early CAPS.

A sharp short course of reducing steroids were administered. This is new for me and I’ve not had them since infancy.

Again... “ Risk- vs- benefit.”

Also, with that statement,

...” only borrow as much risk as you need.”

This is why it’s imperative to have specialists of your particular disease. To be a specialist, they should be known to devote a large majority of their practice to just that particular autoimmune condition that a patient has, if you can possibly manage to secure one.

This is why it’s important to note, each patient is different, and should be considered on a patient to patient basis.

Basic knowledge is great, but sometimes blanket , sweeping statements miss the larger point: patients must be taken on a case by case basis.

This is what I hear you saying also.

But I did want to make sure you have been screened for APS? I’m sure you have. Your history of ITP got my attention...

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

I was commenting in response to the initial post which is about steroid medications. My comments remain the same however, bisphosphonate-related osteonecrosis of the jaw is a very rare side effect and the risks will be carefully weighed up by the prescribing doctor.