Update - Rheumy, methotrexate and Pred

[Mamamia21]

So I got to talk to my Rheumy yesterday. She is very cross that the Rhemy nurse (not cross with me!) suggested going back up from 7mg to 12mg before Christmas (I had only got down to 7mg to have an MRI on my neck... I was not pain-free at this level). I explained that my neck, wrists and hands were making driving and picking up my grandchildren impossible and her response was "I wish you had seen me first, as I would have tried localised injections rather than up your steroids" I told her that I had seen 2 doctors over that time and Naproxen was the only answer they gave. The problem is that she is not available when I am at my worse... next time she visits is in March and then May and as far as I understand it she had been emailed by the nurse and had no response. A decision needed making and I made it. She is not the one living with the pain I was in. Back at 12mg I have very little pain at the moment. It is lovely!

Anyway, as I have only been on an increased dose for a month she now wants me to reduce 1mg a week to get back down to 7mg. If I get to 5mg she will "leave me alone". I am not keen but she says that if I get any pain back someone will see me quickly to assess what is going on (apparently there is more support here now than there was!). I am to increase my Methotroxate to 15mg whilst reducing and see how it goes.

I know I can get to about 8mg on the DSNS method so am happy to see if I can get back there but am a little worried that a quick jump to 7mg where I was in a lot of pain might be asking for trouble again.

This is a new Rheumy and want to give her a chance to see me at my worst so she can see what I am dealing with but feel that it is unfair that I have to be in pain for her to recognise that I have a problem.

Anyway, I will keep in touch with how it's going. I think the next few weeks are likely to be painful...

[Constance13]

How I hate rheumies! If only they could feel the pain some of us go through!

Is there any way you can get Pred without her permission? I mean from your doctor perhaps?

There is no way I would go through pain "just to see how you are next time she sees you." Grrrr!

Several of us have upped our Pred without rheumies/doctor's permission. Life is too short - living in pain not good.

My thoughts are with you. Be kind to yourself.

💐 🍀🍀🍀

[Mamamia21 in reply to Constance13]

Hi Constance

Thanks for your message.

Yes, thankfully my doctor is very kind so can do what I want if it does get really bad again. I do feel like I am playing the game again which is not good but not sure how else to proceed.

Hopefully the new dose of Methotrexate with help!

[123-go]

Hi. None of us should have to battle with our rheumy when the bottom line is that we know our own bodies.In my opinion reducing 1mg a week would be asking for problems. Why should you be part of her 'experiment'? Why should you risk increasing pain so that a point can proved?

If I were you I would write to her suggesting your own tapering plan and giving reasons for a slower taper. Politely state that you would like her to work with you on this and that you hope she will agree.

You will lose nothing by doing this and hopefully there will be a gain.

Please don't punish yourself in order that the rheumy can see you at your worst.

Best wishes to you going forward-not backwards 😏.🤞🏼

[Mamamia21 in reply to 123-go]

Thanks 123-go, I think you might be right. As I am unlikely to see her again until May I have time to reduce much more slowly. I will write and suggest this plan and see what she says. To be honest if she says no what can she do about it if I ignore her? If I can reduce back to 8mg over 18 weeks I have more chance of controlling how I manage this reduction.

[123-go in reply to Mamamia21]

I am pleased to hear this, Mamamia21. As patients we have the right to be part of any decision-making and when we are armed with shared knowledge based on lived experience it is empowering and gives us confidence to make our own judgements.

My best wishes to you.

I should have said that as your GP is very helpful it may be a good idea to let her know that you are intending to write to your rheumatologist ( if you do go down that route) -just as a matter of courtesy.

[Golden20 in reply to Mamamia21]

Please listen to your body when tapering. It’s you that is in pain and we are all different. Unfortunate, sone rheumatologist are working to a one size fits all plan, that is not how our bodies react. Be guided by your gut instinct and taper down at a dose that allows you to live your life. I think that some medical professionals, should walk in the shoes of patients in pain. I wish you all the very best of luck in your journey. God bless you.

[PMRpro Ambassador]

If you are fine at 8mg - why the desperation to force you to 7mg? When she KNOWS you don't have instant access to help...

She is probably right - and localised injections are what I would get in an ideal situation. However - since Covid stopped the pain clinic service and it hasn't resumed and I had a much longer lasting care situation that required me to be able to function, I upped my pred. When I did decide it was time to see the rheumy I had to wait about 4 months for the appointment. When I did see him I got the injections I needed - and now the relief. But my system is far more accessible than yours and I still had to wait. Or maybe I'm just not pushy enough.

[PMRCanada]

Dropping 1mg a week is ridiculous. You are quite right…they are not the ones living with the pain! We must advocate for our health, and those who are meant to assist us should be working WITH US, not making unrealistic demands. They should also not cause us stress as it’s terrible for PMR/GCA.

Do what works for you with your symptoms leading the way, and inform her of your progress when you next meet. If she once again demands you proceed in a way contrary to your instincts and experience, it might be time to have a necessary, but difficult conversation.

[Mamamia21 in reply to PMRCanada]

Even if have only been on 12mg for a month? As I type this I am remembering how painful it was at 7mg so trying to get back there quickly does not appeal anyway... think I've just answered my own questions 😂