My husband has been treated for Glioblastoma. Radiotherapy and chemotherapy have been completed.
He has been on steroids since the beginning a year ago. I have been reducing the steroids, as per doctors recommendation (Dexa). He has been on 1mg for a couple of months and now reduced to half 1mg.
This has been about 3 weeks ago and he has had a sore swollen ankle, sore arm and now a sore knee.
The hospital have said that the reduction in steroids will make him feel unwell but not affect his limbs and we should increase the steroids again.
Anybody else have problems with painful joints? Do you think steroids is the problem?
We would prefer to try and keep the steroids reduced but the hospital have said it is better that he feels better on the higher dose.
The hospital generally leave us to decide to increase or not to increase, but how do we know what is best?
Purplebadger
HI Purplebadger
I supported my late husband G throughout the three years of his GBM journey and we had a love/hate relationship with steroids throughout.
G never complained about sore joints to be fair. He was on a low dose for the last 8 months of his journey and for the most part they made a huge difference to him. I think from memory it was 2mg a day at that time. This was dramatically increased for a few weeks after he had issues with multiple focal seizures then he was weaned back down to the 2mg/1mg level again. During the last few weeks of his journey we played with the dosage til we found a level that gave him the best quality of life at that point.
The only issues we experienced with the steroids themselves were that they made G incredibly bad tempered and nasty. They also increased his appetite. He was eating everything in sight. He was on the high dose for too long and also developed steroid induced diabetes. Somewhere along the line he developed a DVT but I don't know if this was steroid related as no one ever said.
It is so hard to know what is best. The hardest part of me came when we realised that they weren't working anymore. By that point G couldn't hold a rational conversation and I had to make the decision with the support of the community hospice team to stop them. Emotionally that felt like signing his death warrant even though I knew in my heart that it was pointless to continue with them.
I'd encourage you to talk over your concerns with the medical team and take it a step at a time.
sending you love and light and strength and hugs
Wee Me xx
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