Anxiety about rheumy appointment.

[Mstiles]

I have an appointment with the rheumy today, and am anxious about it.

In June I had two episodes that my eye specialist said were ocular migraines. She examined me. No raised sed rates, but was having muscle pains, etc which rheumy dismissed as pred side effects. At this visit with her I had anxiety symptoms in addition to the other symptoms.

Spent the month going back to 30.mg then to 27.5, then back to 25 which was where I was when all this started at the beginning of June. 4 days ago I reduced to 22.5, I wanted to show some progress when I see her today. So far there seems to be some withdrawal symptoms but Tylenol is working for them. I fear being labeled “non-compliant” and fired like my last rheumy did. This rheumy wanted me at 20 mg a month ago.

Have also been battling petty bad depression, (my last post)

My plan for today: I’m bringing my sister with me. Just want to refill my prescription and get in and out. Not engage too much, and not come back for at least a month so I can have time to self manage tapering. The problem is she always wants to see me in two weeks when she will want me to have tapered down too much. She puts this in the after visit print out, are these orders?

I realize she can’t force me to come in for an appointment, and the assistant actually schedules it in the computer so I could make the date for a month instead of for 2 weeks, but this is causing me real stress and anxiety.

My sister suggests I tell her I’m traveling this month if she wants me back in 2 weeks.

Why should going to the doctor for help be like going into battle?

Thanks in advance for your advice.

[DorsetLady PMRGCAuk volunteer]

Hi,

It shouldn't be like that, anywhere, but I guess you’re in the States and are paying to see her, so she needs to remember that.

What looks achievable in regards of tapering on paper, which is how the Rheumy sees it may be fine, but as patients we all know that real life gets in the way, and it doesn’t necessarily work that way.

If you are getting anxious about seeing her, then that’s not doing you any good at all.

You really need to discuss with her that you feel she is pressurising you to reduce too quickly, much as you would like to, you can’t.

Can you take anyone with you to appointment for moral support?

[Angiejnz]

I hate hearing about doctors that don't listen. It's your body and you have control regardless of what she says. Go in prepared to say you want to stay where you are and taper to a different timetable as you have read so much about different routines. Don't get in a debate, just be a broken record and keep repeating yourself. Make sure whoever goes with also sounds like the broken record. Kia Kaha (be strong in Maori, NZ) and good luck. Just think of the people on this forum who are behind you and supporting you!

[SheffieldJane]

I am guessing that your last Rheumatologist did a job on you in her or his handover notes, ensuring that you have a similar experience with this one. I am sorry that you are being made to feel like this, you are ill for crying out loud! This must be made doubly hard because you are experiencing anxiety and depression at this point. Not really in a position to fight. I experienced being assertive with Rheumatologist that I saw for the first time today. I used everything I had learned on here and managed to bat away Alendronic Acid, Methotrexate, Florasomething, a faster taper and got a Synacthen Test arranged by being reasonable, firm, polite and grateful. My notes say that I’m lovely ( thank you Sarah, my usual Rheumatologist) because I saw them. That must help me.

The Synacthen Test was my simple goal, I made it clear that I wanted off Pred and would make a concerted effort when I returned from America. Maybe you make a simple goal for your consultation, say how keen you are to reduce and need to use dead slow nearly stop. You could also say that fortnightly appointments feel too much and it is making you anxious. Show her what DSNS is and ask her to allow you to try it for a month or two or even three. Take your sister and get her to make notes. Good luck, It’s your body and your life remember.

[PMRpro Ambassador]

Nothing to add to SJ's suggestions. You do at least have the advantage she is working for you - but with a world shortage of rheumies, they won't be short of patients either...

[CT-5012]

Just to say that I agree with all of the above, nothing like having a sibling to help when you need it. All good wishes.

[arthur463]

I'm from England. We too have rheumies who are - well - just plain haughty! I have GCA and have lost an eye in the process, due to misdiagnosis. I also have heart failure. So I see rheumies, cardiac people and eye people on a regular basis just now. It's always the rheumies who are so stroppy. I wonder why that is. I can tell any of the others that I have deviated from the advised dose of this or that, and why I did so - and they just take it on board and make a note of it - but not the rheumies! Nowadays I deal with it by lying to them. I note what they tell me to do, since any information is useful - then I do what I think that I should, based on my particular experiences. When I go back, I lie again, and again make a note of what they tell me - for reference, and so that I can steer in their direction as soon as I feel ready.

Does this make me a bad person?

[Mike1964 in reply to arthur463]

No Arthur, definitely not a bad person. A rather ill person, a person in desperate need of compassion, indeed a person in need of health professionals who will listen, but definitely not a bad person. Good luck to you Arthur.

[arthur463 in reply to Mike1964]

That was so reassuring Mike. Thanks. Arthur

[Leeleep in reply to arthur463]

Not at all. Docs must work with us because they are not in our bodies. Before I went on Actemra it was almost impossible to dose down on prednisone and I had to do it my way. Since Actemra dosing down from those high numbers are much easier. When we are down to 5 prednisone we must go slow to prevent adrenals from failing. I obviously don’t know what meds you may be talking about but if talking about prednisone just make sure you go slow on those low doses.

[Angiejnz in reply to arthur463]

Don't think you are the bad person, you are using imaginative definitions of the truth. I'm sure I heard you say before each statement "I know this is what you want to hear so let's pretend this is what's happening". If I can hear it in NZ your rheumy must have heard it too and is being complicit in the situation. We are merely actors!!

[Christophene47]

A doctor's visit should not be a battle, nor a source of anxiety. If you are in the U. S., dismiss her. The last thing you need is a doctor who is causing you anxiety. I don't know where you are, but there are plenty of rheumatologists here.

I just fired my doctor after 18 mo, and have found a kind, sensisitive doctor board certified in rheumatology and internal medicine and 20 m. from home. Do a search on Healthgrades.com and find someone else. You can see comments from other patients, their education, experience, age, photo, etc.

My next appt. is in 2 months; told to just call for a refill or if a problem. Once you have found someone, write a polite, professional letter saying you are transferring your care to....please send me a copy of my records, or to the new doctor, and offer to pay for the photocopies. They are required by law to provide them in 30 days or you can pick them up.

Every 2 weeks sounds like a profit motive is at play. It is obvious, she is making you uncomfortable. You are not required to give her a reason.

For this last script for Prednisone, bring your sister, and in your own mind, make it your last visit.

[arthur463 in reply to Christophene47]

I'm not in the US - I'm in England. We can't easily dismiss our specialists over here under The National Health Service. You kind of get who you are given. Most of the time that's OK - Sometimes it's not!

[Mstiles in reply to Christophene47]

Thanks christophene for your kind reply.

I will look at health grades, definately time for a change.

My sister was wonderful and supported me when the rheumy stared on me. At the end the doctor kind of gave up, didn’t give me a reducing plan, and made an appointment for 3 months.