Advice on PMR and cancer

[CarrieP]

Diagnosed with PMR in March this year and been on pred ever since - now 14mg. I hadnt heard of it previously so bought Kate Gilbert's book on PMR and GCA to understand it better. I found it very useful but now I have got to the end feel concerned when I read on page 152 'the Keekle primary care team have had a paper on PMR published and they were able to show that in the first 6 months after a diagnosis of PMR, patients are around 70% more likely to receive a diagnosis of cancer.'

I am feeling bad enough with the PMR and it has certainly restricted me to what I can and cannot do but am really concerned now I have read this and hoping I may have misunderstood.

Can anyone help and advise me please?

[Runrig01]

The implication is not that pmr patients are at increased risk from cancer. It is just unfortunate that some cancers present initially, similar to pmr. It is just highlighting that some patients are incorrectly diagnosed as pmr initially. Hope this helps. Most patients diagnosed with pmr, will have an uneventful recovery. Others less fortunate you will find on forums such as this, seeking support. Try to give your body the rest it's asking for, and try not to stress. Take care x

[CarrieP in reply to Runrig01]

Thank you very much. Being newly diagnosed from blood tests I do not know what to expect and feeling quite low as unable to do much doesnt help.

[Megams in reply to CarrieP]

Carrie - can quite understand you getting a little confused but I have learn't on this PMR journey of 19 + months that taking one day at a time and dealing with what presents in that given moment will help you cope long term.

It is a debilitating illness with many twists and bends along the way and I am still learning that despite what new health issues I'm faced with I must tackle them with a deep breath as opposed to my usual anxious state. I am a slow learner but Mother Nature has her way of tapping us on the shoulder to watch, wait, and listen.

Abundant blessings to you in the meantime - go gently and we are all here to support and encourage you.

[Polywotsit PMRGCAuk team member in reply to CarrieP]

Hi Carrie - the second edition of the book makes the wording of that section a bit clearer. Runrig is absolutely correct about people presenting with cancers that are at first thought to be PMR. This is why the whole diagnostic process is so important.

Best wishes

Kate

[PMRpro Ambassador]

runrig has explained it already - your doctor should have done a range of blood tests before deciding it was "PMR" as we talk about it here. PMR is what is called a "diagnosis of exclusion" - you rule out everything else it is likely to be and that leaves PMR as being probable.

If you responded well to 15mg of pred it also suggests it isn't any really nasty cause such as cancer - it doesn't usually respond to a low-ish dose of pred. You do however have to do your part - pred is only part of managing PMR. You must pace yourself and rest appropriately. You say you still feel bad - in what way?

[CarrieP]

Thank you all. I am new to this and dont know what to expect. I ache more than in pain now but my mobility is bad and have to go for an MRI scan to check if I have injured a a disc in my back. My hands and fingers are still a bit stiff and I'm not able to grip things properly. Have had the OT round now and she has arranged some things to help me. Just reduced steroids to 14mg and hope that will be ok as reduced to 12.5mg 3 weeks ago and had a a flare up as was too much too quickly. Have to learn to accept this pmr and treat each day as it comes.

[Grace38 in reply to CarrieP]

Hi. I was diagnosed in October 2015. Start with 15 mg. I was pain free taking 5mg one day and 2 1/2 the next I am currently taking 2 1/2 daily. I have hand pain around my thumb as well as shoulder and arm pain. My SED went from 11 to 21. Waiting to see rheumatologist since she did anot return phone call

[PMRpro Ambassador in reply to Grace38]

Sounds as if you may need something between 2.5 and 5 to manage the daily inflammation and it has built up enough for you to show a flare. To be that low after just 6 or 7 months is very fast but good if 5mg really is enough. Can you not get 1mg tablets? That would allow you to adjust the dose more accurately.

[Doralouise77]

I have read just the opposite (darn I wish I would remember to make note of these things when I read them so I could provide a reference!)' that people with PMR are at no more risk of cancer than the general public. I did read too though that maybe it seems like a higher incidence because in the course of being investigated thoroughly for PMR, cancer may be discovered whereas it might have gone unnoticed without the PMR symptoms. I think this is a good thing. I've had tests that I might not have had so it's great when nothing shows up. Keep thinking positive, to do otherwise is not healthy. Difficult I know sometimes but our mind certainly affects our body. Good luck!

Cheers

[PMRpro Ambassador in reply to Doralouise77]

We aren't - it is a specific thing about the first few months after diagnosis where the real cause of the PMR wasn't identified. One of the differential diagnoses in PMR requires the exclusion of malignancies which are a common cause of polymyalgic symptoms - so first they have assumed "our" PMR but later have discovered it wasn't and it has turned out to be cancer. It's a reminder to medics to be be more thorough and not to jump to conclusions.

[Peggles]

Following on from this, after 20 mths with PMR diagnosis and being on Pred, it looks like I do have cancer.

Still waiting for results of biopsy, 2 weeks today, and urgent CT tomorrow of chest, abdo and pelvis.

Apparently I might have had cancer all along and raised inflammation markers because my body was trying to fight it off?

I'm now trying to get off Pred ASAP as I want every cell in my body to attack!

And why didn't my GP refer me to a rheumy? Of course I felt better on steroids. Doesn't everyone?

(A little bit lost and would like go back to the Pmr please...)

[PMRpro Ambassador in reply to Peggles]

I'm so sorry to hear that - but don't be too down on the pred, it is used for treatment in some cancers and other immunosuppressants too.

"Of course I felt better on steroids. Doesn't everyone?" - actually, no, in lots of cases it doesn't make a difference and that is what prompts some GPs to have a closer look as they should have done in the first place before deciding it was the polymyalgia we talk about here. Even rheumies get it wrong too.