Topical steroid & osteoporosis

[Loobyloo12]

Hi, I have severe osteoporosis as well as diffuse systemic sclerosis. I am having 6 monthly injections of denosumab. I also have chronic ulcers on feet which are being looked after by tissue viability. I have just finished a 2 week course of a strong topical steroid cream with this week off. The nurse wants me to do another 2 weeks on it, but I have concerns with my bone health & fractures with strong steroid cream. Anyone else have experience with this.

Many thanks

[positivedaybyday]

Hi,I have Diffuse Systemic Sclerosis plus osteoporosis too.

My condition came from nowhere in 2017 & was extremely serious.

I was unaware of the Osteoporosis before this time.

I was placed on high doses of Predisolone to alleviate the disease & I used a similar topical steroid cream on my legs for months. This was due to my legs being red raw & itched like crazy.

If there was ever a time to go mad, this was it with the incescent itching!! I also had a few ulcers on my legs too.

I was made aware that long term use of steroids could have a detrimental effect on my bones.

At the time I had no choice, I think years ago I would have been placed in a lunatic asylum with all my symptoms that happened so aggressively!

It's now 6 years on & as yet I haven't suffered any bone fractures.

After stem cell treatment my predisolone was reduced slowly & last year I asked if I could stop taking it altogether. I finished in November last year. My legs cleared up after my treatment so again the application of the topical cream stopped.

My Consultant made sure that each year I have a Zolodronic acid infusion. This helps to strengthen the bones.

I had a dexter scan when first diagnosed with this disease & my Osteoporosis is monitored at intervals. The last scan showed an improvement.

The limit on this infusion is I think 7 years when I will have my last.

Normally it is given for upto 5 years but my Consultant wanted the maximum time for me.

I would say the cream is fine for the time being. Hopefully it should clear up your ulcers.

It may be worth asking if Zolodronic acid infusion is an option for you going forward as your Osteoporosis is so bad.

I hope this reply helps to alleviate your fears.

Have a lovely Xmas & I hope 2024 is better for you. Xxxc

[Loobyloo12 in reply to positivedaybyday]

Thank you so much for your very interesting reply. My osteoporosis was discovered 7 years prior to getting scleroderma through a baseline dexa scan after menopause. It was really bad (was told I had the bones of an 80 year old at age 53). I then started aledronate tabs for 7 years. Then in 2011 got aggressive scleroderma like yourself. Then started oral prednisone, methotrexate,hydroxychloroquine etc. Bones not improving, so started Forsteo (teriparatide injections), still no improvement, then tried zoledronate for 2 years, still not much change, so now on denosumab injections, I have had 7 so far & next dexa scan in April 2024. So let’s hope for the best.!!. Meanwhile trying to heal foot ulcers. Thank you for your advice, it has made feel more comfortable about things. I’m sorry you have had such an awful time with it all. I wish you well for the future. Take care.