Finishing course of steroids

I can't speak to the pain directly, because I have not yet reached a stage like that.

With regard to the injection, the GP should have received a letter from the hospital confirming both diagnosis and treatment. The GP would then know what to prescribe. That was what happened in my case.

However, when it comes to the injection, I found that I had to request that (I now do it about 14 days in advance of need), and book an appointment for the injection to take place. Once again, this is my case, and the same may not apply in your area.

It is best to have the injections as close to the target date as possible, although given the bank holiday you might now have problems arranging it for Wednesday. A few days is not important, but getting it this week would be good if you can do it.

In the even I was in your position, I would be planning to contact my GP on Tuesday and simply ask what the practice is, and how they can help. I would make sure that both I, and they, understood what I had to do in the future, because they don't always tell you.

I think that I would also contact the Oncology Department - you should have been given a contact point - and ask them the same questions. You can also ask for help with the pain issue.

Quite a number of people on this forum have had radiation treatment on bones to help with pain, which sounds like what your husband has had. If you call the hospital as mentioned above, they will be able to confirm what is likely to happen in your husband's case.

I am sure that others will be along to give a better answer.

Looking at what I can find out, it does seem that this is your first contact here. No one wants to join this club, but when they do, they find that it is very worthwhile. There are a lot of lovely people here, with a great amount of knowledge and experience, although you do need to remember that none of us are medically qualified.

Thank you so much Steve for your informative response to my post. You have helped, I feel let down by GP now I know what to do.

with best regards 

Hello Help . The steroids were probably given as a temporary measure to help Mike out initially. The Degarelix will be shrinking the lesions and that, along with the radiotherapy, should help with the localised pain. The oncologist should give you your plan going forward but managing pain comes top of the list for giving your husband the best quality of life. With my husband it was a step wise approach with over the counter painkillers to start with. The next step (3 years later) was to put him onto Tramadol. This year hubby developed bone mets and was put onto low dose steroids along with Fentanyl patches until he had spot radiotherapy to the offending lesion. The pain has diminished considerably so the steroids are being eased back on. It is trial and error to find out what works best but be reassured that something will be done to ensure that Mike's pain levels are kept under control. 

It is important to get the Degarelix on time. Each health authority has a shared agreement between the GP and the consultant so you will need to find out what it is in your area -I have attached an example.

https://www.derbyshiremedicinesmanagement.nhs.uk/assets/Clinical_Guidelines/Shared_Care_Guidelines/Degarelix.pdf

Thank you so much Alwayshope, we have to wait until after the bank holiday to sort Degalerix. Thought GP had prescribed but found out yesterday hadn’t done anything at all. It’s due on Wednesday and we need to find a pharmacy that stocks it. Learned a stressful lesson not to rely on GP in future.  

The link you shared is very helpful and once again, thank you for your guidance and support 

Hi Help 

My husband has steroids long term, at the moment it’s 10mg a day. Which is a very low dose. They are to counteract the side effects of treatment. We’ve never thought of them as pain relief? Mr BW originally had a fair bit of (low level pain) but his radiotherapy was part of stopping that. Personally I wouldn’t worry too much about coming off the steroids, hopefully the RT will of made a big difference and the long term use of Steroids can come with it’s own problems and side effects. I think it’s just a case of coming off them and seeing how he feels, if he’s in pain it’s easy enough to go on them again at a low level. Also it will be an opportunity to see where that pain is and talk about alternative options to relieve it like targeted RT maybe? What’s his dosage of steroid out of interest. 
L

* add on - our bodies make it’s own steroids in the adrenal glands. 
vitamin D is a natural support and promotes this. 
A lot of consultants recommend Calcium and vitamin D supplements for bone health for PC particularly metastatic spread to bones . But do check with your consultant if that appropriate for your husband.

x

Hello BW and many thanks for your encouraging reply to my query. Mike is about to stop his steroids (been weaning off) was on regime and now on 2mg once daily.  He developed steroid induced diabetes so hoping that resolves.

Will definitely enquire about supplements to help bones.

Sending best wishes to you and your husband

with thanks

Dear Steve, thank you for taking the time to respond to my post. Your guidance is very much appreciated and helped a great deal.

with thanks and very best wishes