Rheumy says pred doesnt affect bones, muscles etc

[arvine]

well I have told my story few times here, been on pred since Oct 2016, got diwn to 4 mgs Dec 2022, then rheumy adbised i NC rease re Gca symtons to 40 mgs, the last year have had lot of trauma, been on 6 mgs since spring 2023, then my son had relapse leukemia, went thru transplant and weeks in Princess Margaret. , and lostvhim past July 2023, so has been many tough days, as well as physically unwell myself, RSV , covid, severevback issues, etc too much to list. So I have been reluctant to taper thru this last number of mos, however phone appt with rheumy this morning, at which time he said prednisone would not have any affect and I should continue to taper and 6 mgs is not a liw dose, I should add had an injury on Jan 2 2024, in lower left glutes near back pelvic bone, had ultrasound, and now appt for MRI this Friday to to determine what is causing pain, I did feel a sap and severe pain at that time, could be tear dr said, sooooo , I am about to start tapering to 5 mgs as advised by rheumy, Im thinking pred after 7 plus yrs has had affect on muscles,tendons etc, wondering what thoughts anyone on this forum may have, such a long story, sorry

[SheffieldJane]

Well we know that long term Pred can thin bones and weaken muscles!

I am so sorry for the loss of your son. Sending love and hugs during this painful time Arvine. Good luck with your MRI.

Just briefly woke ( jet lag). Better answers will follow. Xxx

[Kendrew]

Hi arvine,

I'll leave others with more knowledge to respond properly with your medication advice, but I will say how sorry I am to hear not only of the extremely challenging times you've been through, but the terrible loss of your son, particularly after all he endured too.

I can't take away the enormous pain you must be feeling but please know you're in my thoughts and I'm sending you much love.

It was probably wise to not taper with so much 'trauma' in your life, and I personally would question your rheumatologists comment that steroids won't make any difference to aiding you through these current issues and to therefore continue tapering.

We know that not to be true, and that in times of heightened stress, illness trauma etc, we need the extra cortisol that a higher dose of pred will provide, because our body can't yet produce that extra itself.

Some people will definitely experience damage to bone health as a result of taking steroids, but not necessarily everyone. Weakened muscles does seem to be a concern for most people though.

Just wondering if you've ever had a bone density scan (DEXA scan) That would show your current bone health.... and are you taking calcium and Vit.D supplements?

As far as muscle tone & strength go, my understanding is, that it's not particularly easy to rebuild lost muscle whilst on steroids, but its still important to try and stay as active as you can to minimise this happening.

I do hope things improve for you and that life becomes a little 'easier'. You've gone through so much.... you're clearly a resilient lady and I truly admire you for your strength of character. Keep going....... you'll 'get there'.

Charlie Mackesy

[arvine in reply to Kendrew]

thank you so much Kendrew for your kind and thoughtful words,it is a struggle to keep going with emotional and physical pain each day, I lost my husband im 1999,, but never had the pain Im having now, have 2 other adult children, but being my first bornhe was the centre of our family, so I hurt for his 2 children, my grandchildren, mow 19 and 21, and my daughter who was especially close to him, and my other son, they arel lost as well, I know have to learn to live without him , but will be a long tike if ever that can happen, again thank you, hoping can het some answers with MRI and relief soon

[DogAgilityObsessed]

I am so sorry for your loss. It will be very stressful and not good for your health. Seven years of pred will have had an affect on your muscles I'm absolutely sure. How much of course is a different issue and perhaps depends in part on what you've managed to do during that time. But to say it won't have had an effect seems wrong to me!

[arvine]

thank you and I totally agree

[yogabonnie]

Sending you big healing and caring. I cannot say so well what Kendrew said, but I echo her words. xo