Can I take Immunotherapy cancer drugs with Prednisolone (+ Stopping Pred altogether advice)

[suethompson99t]

My urologist wants me to come off Prednisolone as he feels it is interfering with the treatment I am having. I started on 40mg (high I know for PMR) at the end of July 2016. I'm now down to 5mg and have been on 5mg (aside from occasional temporary increases) since September 2016. If I did come off completely, would I still need to use the slow taper method. I guess what I'm asking is, as I've only been on it for 6 months, is a flare up/ withdrawal problems still likely?

[DorsetLady PMRGCAuk volunteer]

Hi,

40mg down to 5mg within 3 months is very quick, are you sure you have PMR?

If you have PMR, then it would be very unusual for it to be gone within six months (most people have it for a couple of years at least) so if you stop Pred then the likely response is - yes it will re-occur.

Also you need to come off the Pred carefully or you will get withdrawal symptoms. Others on here have had to do that for various reasons and hopefully will be along with their advice.

5mg is regarding as a fairly small dose by most and causes very few side effects, so why is you urologist so adamant that you come off?

Take care.

[suethompson99t in reply to DorsetLady]

Thanks for such a quick reply.

You're right, it was a quick reduction. The GP decided it could be PMR and started me on 40mg, down to 20mg one week later! That was before I found this site. However, all seemed to work quite well. Unfortunately, I am having treatment for Bladder Cancer using an Immunotherapy drug. I've always been concerned about the conflict of interest between that and Pred. But the Rheummy, who said he didn't think it was PMR but was Reactive Arthritis caused by the cancer treatment, said it's such a low dose it shouldn't be a problem (re conflict).

However, since being on pred, the side effects of the immunotherapy treatment have become much worse - they normally clear up with in a few days, but the last lot of side effects have lasted 5 weeks now. So the Urologist is suggesting that I "try without Pred to see if that helps". So not a definite "you must come off" but I'm wondering if it is worth the risk of the shoulder pains (which the Rheummy doesn't think is PMR) coming back in order to get rid of the horrible side effects affecting my bladder & associated regions!

Assuming I don't have PMR and 5mg is considered a low dose, is it likely to cause many withdrawal symptoms?

Thanks again for your reply.

[DorsetLady PMRGCAuk volunteer in reply to suethompson99t]

Hi,

Sorry for delay, been to my weekly Pilates lesson followed by shopping!

Your question re withdrawal symptoms is a bit tricky, but as you haven't been on Pred for long and seemed to get to 5 mg without much problem, I would guess probably not too bad in your case. But, everybody is different and it depends how your body reacts to the drug, some find reducing very difficult, others relatively easy.

Hopefully as you've not been on it that long your adrenal glands will, and may already have responded well - that seems to be the major problem for most! High doses and long periods of being on Pred suppress the adrenals so much sometimes they are loathe to wake up and work again.

If your shoulder pains aren't PMR then painkillers may help - check with doctor what's okay to take with your cancer drugs. If it is PMR then no painkiller will help, Pred is the only thing.

I'm afraid I have no experience of cancer, as a patient, but I know others on here have gone through it, but whether it was before or with PMR GCA not sure.

Difficult decision for you, but think you probably need to concentrate on the cancer first, the PMR or RA might be painful, but the cancer is the more serious.

If you posted again with the heading - can I take cancer drugs and Pred - or similar you may get some more answers.

Wishing you well.

[suethompson99t in reply to DorsetLady]

Thanks again DL - I may just do what you suggested and re-post with a different title (unless the title can be changed by someone?)

Best wishes to you,

Sue

[DorsetLady PMRGCAuk volunteer in reply to suethompson99t]

You may be able to change the title yourself- not sure.

I know you can edit replies even after you've come out of the site and gone back in again, but don't know about editing title. Perhaps you could look at the help section. But I shouldn't think that would mean it would re-notified to all - which is what you want really

Probably as quick and easy to write it again.

[DorsetLady PMRGCAuk volunteer in reply to suethompson99t]

Just had a look.

Go to your original post - at the bottom there's a 'Like' box and a selection one with a symptom like a flattened V - which brings up choices. Select Edit, and then change Title.

[suethompson99t in reply to DorsetLady]

Thanks!!

[PMRpro Ambassador in reply to suethompson99t]

I suspect however you will get more response from a new thread.

[arvine in reply to suethompson99t]

hello suethompson, i,m afraid i don,t know the answer to your question, but i am curious, as to when you were diagnosed with bladder cancer, before your diagnosis of pmr ? and did you have the cytoscopy test to determine that, i am concerned, because before i was diagnosed, and btw, still not confirmed although was prescribed 40 mg pred, oct 12, by my gp based on symptons only, was discovered blood in urine, 2 tests, both times showed that, then had cytology test as per urologist request,then the cystoscopy, and that apparently came back clear, since then, just had physical, and i have access to my blood results via internet, and it appears to me, the protein level is same as initial test, there was no explanation at time as to why protein/blood, in urine showing up, curious, some dr,s these days are just not as thorough as i think they should be, and we have to ask all the questions,

[suethompson99t in reply to arvine]

Hi Arvine - sorry to hear your concerns re bladder cancer and unanswered questions by GP. I was diagnosed with bladder cancer in Nov 2015 - I had only one week with blood in urine, no pain and urine samples were varied, 2 came back clear, one showed blood - no infection. I had an ultrasound first which showed a 2cm growth in my bladder. A cystoscopy then confirmed a tumour that was likely to be cancer. A biopsy then confirmed cancer and the type of cancer. I would think a clear cystoscopy would be good news but as you say, you need answers to your questions.

My diagnosis of PMR wasn't until July 2016 - and I'm still not certain it is PMR because there is a possibiity the pains were caused by the treatment for the cancer.

By the way, are you saying you were prescribed pred for the bladder problem or for PMR?

Not sure if that helps you, but if you still have questions, I would go back to the GP and keeping asking.

Take care and good luck

[arvine in reply to suethompson99t]

hi suethompson, i was prescribed 40 mg pred on oct 12, as i couldn,t lift my arms to brush teeth, dress etc, without excrutiating pain, so gp immediately has me start on pred, those symptons relieved same day i started pred, i had blood work done in sept, as i had had severe pain in the lower pelvic area, lasted a day or two, and didn,t feel right for few days after, but that did subside, so urine test, and ultrasound ordered at that time, that,s the first time blood in urine showed up, 2nd urine test showed blood in urine again, was referred then to urologist,didn,t see him til nov, then did the cytology test, then cystoscopy, as i said, apparently results showed clear, no tumors etc, but no answer as to why blood showed up in urine, so that was a big concern for me at that time, i have just done a physical this past wednesday, and see gp next thur for results i am on pins and needles, see what urine test shows this time, also, at time no infection showed, so what can cause blood in urine is what i intend to ask, dr,s sometimes just don,t follow through as much as they should i think these days, and we are responsible for our own health basically, so is your immunotherapy producing good results for your, where do you live, i only read about immunotherapy treatment for cancers , recently, seems to be a big breakthrough, and what dosage of pred did your dr start you on

[suethompson99t in reply to arvine]

Well, hopefully your GP can give you the answers you need this time.

I live in the UK (East Yorkshire) and the treatment I am having is called BCG. It is for high grade cancers to stop them from returning and so far it seems to be working (no further tumours for 12 months so far). However, it can develop nasty side effects, which it has done this time. Hence my concern as to whether the Pred is making the effects of the treatment worse. Not sure how to get an answer to that without simply coming off Pred until I've finished my treatment.

Let me know how you get on with your GP - hope you get good answers.

[arvine in reply to suethompson99t]

yes, ok Sue, thank you and good luck to you

[PMRpro Ambassador]

If the underlying autoimmune cause of the symptoms to which we give the name PMR is active then stopping the pred will result in a return of the symptoms. However - I have to say, like your urologist I would suspect there is at least a fighting chance that the PMR was not the PMR we talk about but reactive and due to the underlying cancer - polymyalgic symptoms can also be due to other underlying illnesses and they must (should) be ruled out before assuming it is PMR. And your GP muddied the waters a bit by starting you on such a high dose, "our" PMR is felt to be characteristic in responding to moderate doses of pred (under 20mg) whereas other things will also respond to the much higher doses.

Be that as it may - after 6 months you will still need a bit of care in reducing the pred dose because of adrenal function concerns but there is probably no reason why you shouldn't try reducing steadily to see what happens.

I lived with PMR symptoms for 5 years with no pred - it isn't nice but it is do-able. I found Pilates and Bowen therapy both helped the shoulder and back muscle pain then - and more recently the local pain clinic agreed with my own feeling I also have myofascial pain syndrome. Targeted treatment for that means I manage the PMR side of things with a lower oral dose.

If you can find a sports massage therapist/physiotherapist who does myofascial release it might help a lot. There are a few needling techniques that also help: intramuscular stimulation is available in the UK around the London area at least and more widely in Canada and the USA. Wet/dry needling is also to be found with a bit more application and manual myofascial mobilisation should be in the remit of any decent sport massage therapist.

[suethompson99t in reply to PMRpro]

Hi PMRPro. I have seen you speak about Bowen Therapy before and it's has been on my list to try sometime, so maybe now is the time! I think I will chat with my GP about trying to reduce further on the Prednisolone - which I'm sure he will suggest is a gradual reduction. Have I also read on here that you can have a test to see if your adrenals are functioning correctly - could you remind me what the test is called and I will mention that also?

Many thanks for your help and advice.

Best wishes,

Sue

[PMRpro Ambassador in reply to suethompson99t]

A synacthen or ACTH stimulation test is what you are thinking of. But it doesn't tell you whether your adrenals are functioning correctly - it tells you whether they are ABLE to function. That of course is a good start as it means if they CAN work then reducing slowly enough should result in a return of function. And it does depend on there being an doctor there who knows how to interpret the results of a test done while the patient is still taking pred - it changes the amount of response. Not all endocrinologists are au fait with the concept!

But adding in some complementary approaches may well allow you to get to a much lower pred dose which should then allow the immunotherapy to work better. Having done it - in your place I would definitely be willing to deal with unmanaged PMR for a while to see if that makes a difference. It isn't nice but it's a question of priorities isn't it?