Just diagnosed with PMR and concerned this will i... - PMRGCAuk

PMRGCAuk

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Just diagnosed with PMR and concerned this will impact on my bladder cancer treatment -

suethompson99t profile image
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Hi. I'm new here.... Does anyone know if there is a conflict of interest between Prednisolone and BCG treatment for bladder cancer? I was diagnosed with bladder cancer Nov 2015, had the tumour removed Dec 2015 and began 6 weeks of BCG treatment (a treatment instilled directly into bladder once a week - it is thought to stimulate the immune system to fight off cancer cells) in May 2016. A month after the 6th BCG treatment, mid July, I began with increased pain in my shoulders (I have suffered shoulder pains/aches for 12 months now - I was diagnosed with Fibro in July 2015!). My GP sent me for a blood test which revealed high levels in ESR and C-Protein, which he thought indicated PMR, so I began with 1 week of 40mg Pred - the shoulder pain (in fact all pain) had disappeared within 2 days. The following week the dose was reduced to 20mg, still no pain, so this week reduced to 10 mg. All good so far - BUT my concern is I believe there could be a counter effect by Prednisolone (which I think dampens down the immune system?) on the BCG treatment, which I need to continue to receive 3 weeks of maintenance treatment every three months. I don't want to give up the Prednisolone as I haven't felt so good for 15 months but equally I cannot afford to let the BCG treatment be compromised. Does anyone have any knowledge of this?

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suethompson99t
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6 Replies

Hi,

I think given your complex situation you really need a referral to a Rheumatologist to manage things in conjunction with your oncologist.

Hi Sue

So sorry to hear your news, Keyes is right you may benefit from having input from a Rheumatologist.

I'd had PMR for four years when I developed Breast Cancer, I live on the English/Welsh boarder, I had my Surgery in England & my Chemo in Wales, where I also see my Rheumatologist.

As I'd had hydrocortisone cover in theatre, the Registrar rang my Rheumatologist for advice on the need for extra Prednisolone Post Operatively.

Also, when having Chemo they tailored the Dexamethazone dose because of the Prednisolone I was taking for my PMR.

I always let my Rheumatologist know when there are/were any changes to the treatment for Breast Cancer & likewise my Surgeon took advice before Surgery because of the PMR & the Methotrexate I was on at the time.

I hope the treatment for the cancer goes well but think you may need the additional input of a Rheumatologist.

Good Luck x

suethompson99t profile image
suethompson99t

Thank you both for your replies. I'm sure you are correct in the need to discuss this with the relevant consultants - at the moment the Rheumatologist I saw who diagnosed Fibro last year has not been consulted about the PMR - that was diagnosed by the GP. But I will speak to my Urologist when I see him next week and hope he can advise.

Thanks again.

PMRpro profile image
PMRproAmbassador

No, sorry, I'm afraid there won't be anyone on this forum with that sort of expertise. You should contact your oncologist and discuss it with them. Pred is frequently used in cancer therapy so I would be surprised if there was any conflict - but the dose would have to be adjusted I imagine.

I agree with Keyes though - you really do need to be under specialists who are willing to work together. The way your GP is using pred for PR is not ideal - if it is PMR you do not need 40mg as a starting dose, 20-25 is the recommended top starting dose, and reducing in that sort of size steps is also far from ideal. It's one thing to use it to get you off pred when it is asthma or some other short-term use - PMR is a chronic problem and needs an accurate adjustment to find the lowest dose that manages the symptoms, You don't do that in 10mg steps. Even one mg at a time now is still a bit much.

suethompson99t profile image
suethompson99t in reply to PMRpro

Hi PMRpro - I must admit I was a little surprised at how quickly the GP decided I had PMR. If I haven't suffered any flare ups by reducing the way I have, is that likely to mean it isn't PMR? I am to stay on 10mg until the end of August, and then he plans to reduce me to 7.5mg - he said the tricky bit is getting from 10 to 5. Do you think I should ask to see the Rheumatologist? I sometimes feel there is a little bit of "I know best" between the two of them. Thanks for the advise - I appreciate the information I am getting from this forum. :-)

PMRpro profile image
PMRproAmbassador in reply to suethompson99t

I don't know - it may be that a dose of as low as 5mg or even less is "your" dose. In that case you would be able to reduce fairly easily at the high doses. But it could equally well be 9mg. If he reduces in 2.5mg steps from 10 to 5 no wonder he finds it tricky!!!!!! Top experts in the USA recommended years ago that no reduction in PMR should be more than 10% of the current dose. That is less than 1mg at a time once you get to 10mg. For some people even that is too much - we are all very different in how we process and experience pred. To start with some people absorb 90% of their dose, others as little as 50%. So 10mg for one will be nearly twice the effective dose it is for someone else. And everyone's PMR varies, it is just the symptoms of an underlying autoimmune disorder - in some that is more active than in others, it doesn't come as a standard size. So there is also no "one size fits all" management.

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