Good morning. Any good advice on how to handle phone appts?
I have one later this morning and am dreading it. It never seems to be the consultant himself so I have to talk to someone I don’t know and I‘ve been having terrible problems with my blood results on methotrexate injections over the last 8 weeks since I started having miserably failed hydroxychloroquine and sulfasalazine. As far as I understand I‘m not eligible for a biologic so really worried they will really push the Methotrexate despite the bloods or that they will not be able to offer anything aside from the odd steroid injection….really wish this were at least being discussed f2f!
NICE are about to recommend biologics earlier in treatment, so you could push for them. Write down everything you want to ask, and make sure they listen. Write down what they tell you and ask their name. You'll be fine x
Be polite but firm and make it clear that you won't be fobbed off.As Moomin8 says, make a list and take notes.
Try not to assume the worst, in fact trying to be ultra-positive and voice your "shock and disappointment" if it's suggested that you can't have an alternative medication and push for a f2f if you feel that you're not being heard - sometimes we have to push a bit!
I failed on metho, leflunomide, hydroxy and Sulfa. I even failed on my first Biologic. You ARE worth it and entitled to a drug that works. Keep this in mind. Ask for what you deserve (ps steroids have stopped working on me too🙄). Good luck. Report back.
As others have said write your questions down before your call and don't be fobbed off, it's fine to say all your questions have not been answered.
I always ask for reasons / justification for all decisions/suggestions by the Dr.....so ....
Why do you believe MTX to be my best option ?
What makes MTX the best choice for me as an individual?
What are my other options ?
Can you explain .......?
Don't be intimidated, the Dr calling you today is just another service provider, just like a plumber/electrician or whomever. Be polite but ask direct questions and expect answers.
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
Have your questions ready and paper to write responses. Dr are getting better at these calls I think. Also take photos of affected joints so you can email directly after call then they ring straight back😊
In future take photos of your affected joints and send them by email to RA asking them to place them in your notes prior to your phone appointment so that the consultant can see what is going on. Ask for a reply comfirming that this is done. I recently did something similar and it helped.
Thank you for your advice. If they see it first they will understand what I am talking about😁
Thank you all so much. She was lovely and easier to talk to than some although they really want me to keep trying the methotrexate 😢 Stuck between giving it a bit longer despite side effects and bloods or stopping it and hoping I flare badly enough for biologics which she did agree would be next but previous examinations don’t score me badly enough so might be a while off while things worsen.
Thank you again for all the good advice.
• in reply to
you shouldn't have to continue with this if you cannot cope with it.
Sort of but not in a please answer and explain this to me way. She was very firmly of the opinion the methotrexate deserved „the fullest exploration possible“ and was worried by stopping I‘d end up „stuck“ in terms of options in case I wasn’t eligible for biologics „after all she can‘t examine joints by phone“. I think it was more my fault though for being a bit of a pushover and the downside of a telephone consultation that inherently makes judging these things impossible.
I'm quite sure you're not a pushover. Just keep in close contact and call the rheumatology nurses helpline when and if you need help or clarification of anything.
Sometimes it takes me three months to start feeling the benefit of drugs. It's tough being in your situation, and feeling it just isn't helping. For me it's never just the pain, which is bad enough, it's the fatigue....a kind of heaviness that everything is such an effort. Hopefully you'll have a further follow up in the next month or two...and if not ring them again and ask if you can have one. Thinking of you, and commiserating with you, God Bless. x
I understand that some people find telephone appointments difficult, particularly if you don't know who it is you are going to speak to. In terms of preparation telephone appointments are no different to F2F. i find it best to make a written note beforehand to remind me of any points I want to make and any questions I want to ask, otherwise it's easy to forget. Also I always insist that I am allowed the opportunity to discuss any concerns that I might have. I find that there are so many medical professionals who try to brush off patients concerns. A little insistence goes a long way.
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Any reason not to take methotrexate late?
Any advice/help welcome, first-timer Seronegative R.A newly starting Methotrexate. Abit scared.
From Anya
Dreading night time
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