Taper while having other treatments?

[paintpots]

Hi everyone.

I am about to embark about the 21st of this month on a 6 weeks course of radiotherapy to my neck and cheek. I shall be at week 6 of a 8 week taper from 4mg of prednisolone to 3mg a day at that stage. I had surgery to remove a lymph node and a saliva gland 5 weeks ago with no flare whilst at 4mg. Foolishly I thought no other treatment will be needed, so started a taper. I have a phone call from my rheumatologist this week and wanted to have some other thoughts on whether I should stop the taper or continue the last 2 weeks bearing in mind that I am told the radiotherapy is grueling.

paintpots

[PMRpro Ambassador]

Having got this far I suppose you are almost there! I would stick where you are until you see how you get on.

It very much depends on the person and the dose of radiation - some people sail through and it makes no difference while others do become very tired. No doubt age has an effect two. A lady I worked with in a study used to have her treatment in the bowels of the earth in our hospital and them came to me in my department 3 or 4 floors above. She used the climb up the stairs to assess how the r/t was affecting her! She had almost refused the post-op r/t as she was convinced it would stop her doing her charity transport work with the elderly who depended on her but in fact she drove the 20 miles from home to the hospital and back Monday to Friday and walked up the stairs throughout the whole course. She was probably in her 50s at the time.

But be warned - sometimes it is VERY tiring and people can't drive themselves never mind do the stairs. You will have to wait and see how it affects you but it is usually 2 or 3 weeks before you feel the effect.

[MrsNails]

Hi Paintpots - l would recommend you Stop where you are but please discuss with your Consultant. The onslaught of Radiotherapy can be gruelling so you don’t want to add to the burden.

I’ve had Chemo but not Radio but trying to do two things isn’t easy.

Wishing you All The Very Best for your Treatment. 🍀

MrsN

[paintpots in reply to MrsNails]

Thank you both. The hospital have said it will be hard and are offering liquid food and morphine drinks if I need them the last week, so I am thinking the worst. I know someone who had radiotherapy and they said it was OK, no problems. I think it may depend on the dosage, I am told my cancer is aggressive so I think it may be high doses of xrays.I may just see how it goes the first 2 weeks and stop if I think the treatment is getting rather painful and may compromise my PMR, I don't want a flare while I am poorly with the radiotherapy. I can always revert back to 4mg and taper again when I'm feeling better.Paint pots

[PMRpro Ambassador in reply to paintpots]

I think position makes a massive difference too.

[MrsNails]

Your Consultamt may even recommend an increase in your dose of Pred to tide you through your Treatment. In Chemo you are prescribed Dexamethasone on top of the usual dose of Pred so l suspect he may give you a new regime during your treatment.

Please accept/take any Pain Medication offered as keeping the pain under control is far better than letting it get out of hand.

I found my PMR pretty much took a ‘back seat’ too much competition from an aggressive Cancer…..

We’re always here if you need a chat & let us know what your Rheumy thinks.

MrsN 🙏🏼

[paintpots in reply to MrsNails]

My oncology consultant did up my Prednisolone to 8mg from 4mg while I was in hospital for the surgery and allowed me to go on a reducing taper afterwards, I went to the DSNS as I feel it suits me better. I will chat with both the rheumatologist and oncologist next week to find out their thoughts. The more information I have the better prepared I am.Thanks everyone

[powerwalk]

Oh very best of luck with your treatment x. Hope all goes well for you.

[Temeraire]

I’d stick where you are and don’t hestitate if you need to increase. Best wishes - I hope you sail through the treatment well.

[Blackcat1M]

Oh I wish you all the very best for your treatment and recovery take care