Reducing Pred during chemo

[Juliemargaret59]

Hi all. I've had PMR for a couple of years and have been reducing my Pred by the very slow method and am currently down to 10mg. I know the rheumatologist would like me to be lower by the time I see her next... However I'm currently having chemotherapy and don't want to risk a flare up while I've got the chemo and side effects to contend with. I wondered if it was worth just taking 9mg once a week and 10mg the rest of the time for now. Psychologically it would make me feel I was making slight progress towards reduction but is there any point? Is there any reason not to? Any advice gratefully received.

[PMRpro Ambassador]

I didn't read it properly - I was about to give you the link for the dead slow plan on here! You have it already! I'm assuming you are on chemo for cancer - if not ignore those references. The tenor remains the same.

Does your rheumy know you are on chemo? The stress of the entire cancer/chemo/side effects of everything is more likely to lead to a flare than anything I can think of. I can't think of a better reason for not having reduced than that diagnosis in combination with pre-existing PMR.

What chemo are you on? Pred is often used in cancer to reduce inflammation - my husband was on it all the way through his chemo I'm sure. For the only time in his life since he was 6 months old he had chubby cheeks.

Discuss this with your oncologist. They may have worked out the chemo on the basis of existing medication as well as the other parameters. If they approve and the thought of taking the first dose of 9mg would give you a boost - go for it. If not - in the great scheme of things, is there so very much difference between 10mg and taking 9mg a couple of times a week?

There is a retired lady GP on one of the forums who having treated PMR in the past and urged her patients to reduce, reduce, is now asking just that question - does 1mg/day of pred REALLY make that much difference in the long run if the patient feels better at the higher dose?

If it were me I don't think I would bother. 10mg is a nice round number and just 2x5mg tablets to take, no fiddling about with 1mg tablets and remembering what day it is. Just concentrate on the chemo (you know what I mean) and getting over this particular hiccup. PMR is bad enough - but it is far easier to deal with than a lot of other things.

Get well soon

[DorsetLady PMRGCAuk volunteer]

Hi,

My initial reaction would be - stay at 10mg whilst you are undergoing chemo. But that may be a bit simplistic - I can understand you want to continue to decrease the Pred, but it is not wise to do so when you have other stresses to deal with.

You say you have been decreasing using the slow method, which is good (that's how I've been doing it), but once you get to below 10mg it becomes even more difficult. If you feel good at that level then stay there for a bit longer, then you could try introducing 9 or 9.5,mg once a week just to see how it goes.

I've been fortunate not to have other health problems since I've got below 10mg so cannot speak from personal experience, but I'm sure you will get plenty of advice from people that have been in the same situation as yourself. Good luck, DL

[Celtic PMRGCAuk volunteer]

Julie, I echo PMRpro's advice. If you are doing well PMR-wise on the 10mg dose, then perhaps it would be wiser not to put your body through the process of reducing steroids at the moment and possibly incurring withdrawal pain. Just let it concentrate on adapting to the chemo and getting better. Lots of good luck wishes.

[Juliemargaret59 in reply to Celtic]

Thanks very much for your replies, advice and good wishes. I actually had the cancer before the PMR so the rheumatologist and oncologist are both aware. It's a cancer that can't be cured but needs zapping with chemo every so often to try to stop it growing - this is my third round of chemo in five years. I'm not therefore as stressed out as I was when first diagnosed, as you all know it is amazing what you can get used to and cope with when you have to ...

I think the steroids can actually have a beneficial effect on the cancer as PMRPro says, and I now take other steroids as part of the chemo treatment but at the same time the pressure is always on to get the Pred down as low as possible.

I suppose what I'm really thinking is, if I can take 9mg of Pred one day a week until I finish my chemo (hopefully in three months time) with no ill effects would it help the eventual reduction process at all? If not then I'll stick at 10mg. There's also a bit of just trying to take control of things I CAN actually control at the moment...

Thank you all so much for your speedy replies - this forum is so helpful. Julie

[Celtic PMRGCAuk volunteer in reply to Juliemargaret59]

Julie, I do understand the dilemma you are in in feeling the need to get some sort of control over your life. I felt exactly the same way after finally being diagnosed with PMR and GCA, after spending many long months in bed wondering if I'd ever be able to walk again. Following diagnosis my way of fighting to get back some sort of control over my life was to research anti-inflammatory foods, and stick to my new diet religiously.

As we've all said previously, we feel you would be wise to stick at 10mg under the circumstances, but if you really feel that it would lift your spirits to try slipping in a 9mg day then you can only give it a go. As DorsetLady has suggested, you could even try 9.5mg. The very best of luck to you whichever option you go for.

[Juliemargaret59 in reply to Celtic]

Many thanks, yes I probably will stick at 10mg for now, I know all the advice everyone has given is very sensible - and much appreciated!

Julie

[PMRpro Ambassador in reply to Juliemargaret59]

Bit late - been doing other things and fighting my wifi!

No, I don't think that it will make much difference in the long run whether you stick at 10mg until the end of the chemo or fiddle with the dose one day a week - except possibly the psychological aspect. All I know is that when I had added extras a few years ago and was at ahigher dose than you are and really DID need to reduce nothing was further from my mind - or that of my GP. I'm very much of the opinion that reducing is fraught enough without adding other complications.

Out of interest - do you know what drugs they use in your chemo? Is it one thing or a cocktail? And does it make any difference to your PMR?

[Juliemargaret59 in reply to PMRpro]

Hi - My current chemo is Paclitaxel and carboplatin. At the moment my PMR seems stable, it's only when I try to decrease my dose that I have pain, although I have sometimes had difficulty distinguishing between PMR pain and pain caused by the cancer ... I know what you say is sensible, and I have decided to stick at 10mg until I've finished the chemo, thanks to the advice from all you sensible people on the forum. I didn't even mention I was thinking of reducing my pred to my husband as I know he would have been dead against it!

Julie

[Mama48]

Hi,

I did write you quite along reply, but unfortunately my macine decided I wanted to be on a different page and when I returned my message had disappeared! Magic!

I'm sure your oncologist knows that you are already taking steroids, the steroids you are taking with your chemo are probably dexamethasone. 2mg of dex. Are approx equal to 15 mg of pred. So your body would be unlikely to notice your decrease. however I would think that you are only on the dex. For a few days so that shouldn't make much difference, but I don't know enough about steroids to know if that's the case. I gather that withdrawal can be total if you have been taking them for less than three weeks.

Do hope the chemo works for you and that the side effects are well controlled. Horrible time for you hopefully better times are coming up. Xx

[Juliemargaret59 in reply to Mama48]

Many thanks Mama48. Julie x