Rheumatologist thinks I might not have PMR

[Smithson]

I have recently been diagnosed with a recurrence of breast cancer and due to have a mastectomy within the next few weeks. I consulted a GP as to what I should do with my Pred dose, particularly on the day of the operation. He said he would consult a Rheumatologist and let me know (I have never been referred to one, despite having PMR for 5 years +) The rheumatologist has come back to him and said because my CRP levels are normal, and have been for the last few blood tests, she doubts I have PMR! I have been advised to keep reducing my pred, currently on 8mg , by 1mg per month.

I have plenty of symptoms but assume my CRP levels are normal due to the prednisolone doing its job! Am I right or should I assume I haven’t got PMR as a rheumatologist who I have never met, says so?

Thanks for any advice you can give x

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about BC reoccurring-best wishes for mastectomy. 🌸

Not sure how Rheumy can say you don’t have PMR any more -obviously doesn’t understand blood markers/Pred correlation -or she has an exceptional crystal ball…

If you still have PMR symptoms-then I think you know you still have it..until proven otherwise-which won’t be anytime soon if you’re still on 8mg.

[Smithson in reply to DorsetLady]

Thanks DorsetLady, and for your good wishes.

[DorsetLady PMRGCAuk volunteer in reply to Smithson]

Just for the record, I agree with PMRpro on her suggestions re procedure and afterwards…

[Smithson in reply to DorsetLady]

Thanks DorsetLady, I feel much more confident after the advice I have received from people who understand!

[DorsetLady PMRGCAuk volunteer in reply to Smithson]

😊

[PMRpro Ambassador]

If I said what I'm thinking, I'd be banned!!! If you are on 8mg and your CRP is normal - all you can tell from that is that 8mg is a high enough dose to keep the inflammation due to the PMR under control. I think I would ignore a rheumy who blatantly obviously doesn't understand how PMR and pred work - or hasn't thought about it before making such a statement!

We do have a few people on the forum with a similar history of PMR and BC - I hope one of them will reply.

For the op itself, it is easy: you make sure that the anaesthetist knows you are a long-term steroid patient and they will provide hydrocortisone cover in the i.v. during the op itself. Post op just continue with your usual dose and hope they hand the tablets over on time - I would keep a spare pack in my handbag just in case - and see how you get on.

Are you having a reconstruction at the same time? You will be pretty sore post-op do it may be difficult to assess if you are flaring. If you do - I'm sure you know what to do according to us? Do you know what they are proposing for further treatment afterwards?

All the best for the op

[Smithson in reply to PMRpro]

Thanks PMRpro, this is really helpful. I will certainly follow your advice re letting the anaesthetist know that I am a long term pred patient and keep a spare supply of tablets in my handbag, just in case!

I opted not to have a reconstruction, personally I feel able to cope with the idea of being flat and using whatever aids are available to level things up. At the moment, I am told it will be mastectomy followed by hormone tablets; no radiotherapy as I had that with my lumpectomy 16 years ago. Of course, I will get final confirmation after the operation dependent on what they find. I am aware of all the good advice re flare protocols from this forum, forever grateful for the support it offers. Thank you for your good wishes.

[PMRpro Ambassador in reply to Smithson]

I just wondered because sometimes steroids are used in the therapy - which might be helpful post op.

[Smithson in reply to PMRpro]

That’s interesting, thank you.

[HeronNS]

Just to wish you success with the upcoming operation and a good recovery. Of course my reaction to the rheumatologist's statement is unprintable! 💐

[Smithson in reply to HeronNS]

Thanks HeronNS, for your good wishes and thoughts about the rheumatologist!

[Longtimer in reply to HeronNS]

Same here, unbelievable!

[piglette]

Another rheumatologist who does not know what they are talking about. Why do they think you are taking steroids - answer to reduce inflammation and thus CRP. You can tell her from me I am horrified by her lack of knowledge of pharmaceuticals, but very impressed that her crystal ball tells her that you have not got PMR.

[Smithson in reply to piglette]

Thanks piglette, it’s amazing what skills some of these rheumatologists possess, none of them very useful!

[piglette in reply to Smithson]

🤪🤪🤪

[Booklover21]

I was on a dose of 12.5mg when I had breast surgery. My consultant was fine with that and just took extra precautions after surgery as she said the healing process may take a little longer . I did not taper for several months after the surgery to make sure I didn’t have a flare to contend with at the same time as healing.

[Smithson in reply to Booklover21]

Thank you so much Booklover21, that is really helpful and reassuring. My GP is suggesting I continue tapering but I think I will stay at 8mg until I am through the healing process. I hope you are fully recovered and in a good place.

[Thelmarina]

Others will give you proper advice. I just wanted to say how sorry I am that you are having to go through this and wish you the very best of luck. ❤️

[Smithson in reply to Thelmarina]

Thank you very much ❤️

[Nanatoo]

Sending best wishes for your upcoming op. With the knowledge you have from the experts on this forum you won’t have to deal with a flare too. X

[Smithson in reply to Nanatoo]

Thanks Nanatoo. It’s good to have the help and support of this forum! X

[GreatGranny4]

As a former BC patient, long before my PMR diagnosis, I wish you well with your surgery and recovery. I have no printable words to comment on the rheumatologist. Good luck with everything.

[Smithson in reply to GreatGranny4]

Thanks GreatGranny4, your kind wishes are much appreciated 😊

[Heron82]

so sorry to hear about the recurrence of your BC. I hope the mastectomy and your recovery go well.

I was diagnosed with BC and had a mastectomy and DIEP flap reconstruction 8 months after PMR diagnosis. I stayed on pred throughout. That was 7 yrs ago. I am now on 8 mg pred and recovering from hand surgery. Was on 7.5mg but had a flare after the surgery, felt great in Jan, now feel sluggish and achey.

Please don’t heed what the rheumys advice. Please show the latest guidance with your GP to help him to understand that the last thing you need to do now is lower your pred. Stay on 8mg until after your recovery, and if needed you may have to up the dose post surgery, by 5 mg as per sick day rules. Be sure to inform your surgeon and anaesthetist about your current dose.

Good luck and I sincerely hope it all works out well for you. Xx

[Smithson in reply to Heron82]

Thank you Heron82, I really appreciate your advice and kind and supportive words. It’s good to know you have recovered well from your breast cancer and reconstruction. I hope that your recovery from hand surgery improves and gets you back to how you felt in January, it must be frustrating to have a setback with a flare.

I will certainly follow all the good advice I’ve had on here, rather than the rheumatologist’s advice!

Take care xx

[Heron82]

oh but it just shouldn’t be like this. Where would we all be without the kindness and support of all the lovely people on this site. 🙏🌟🥰😇

[pink123floyd]

Best wishes for your surgery. Take care x

[Smithson in reply to pink123floyd]

Thank you so much x