Fired by my rheumy, update

[Mstiles]

3:30 am over here in the western US and I can’t sleep panicked about my appointment tomorrow morning with my GP after last Thursday’s disastrous Dismissal by my rheumy.

I have no idea what she’s going to say or what he wrote to her about dismissing me and sending me back to her. I just internalize everything and look ok but inside my body takes a beating.

I haven’t even seen her since last summer when she diagnosed me with Graves disease. She was out last fall for surgery and I saw nurse practitioners a few times in the practice. She doesn’t know about the whole PMR/GCA saga, unless the rheumy has talked to her. Worried about that because what did he say? I have no idea.

I can’t even seem to get my thoughts together on paper for her. There aren’t any other rheumys in this medical system for her to refer me to.

I just want to give up. There are other severe stresses too, mainly money, neither my son or I are working, he has a disability he deals with. My sister helps me out but for who knows how long. Plus more dental work needed, replace temp filling from root canal with permanent one, not major but expensive. Scheduled for cleaning and check up, who knows what else is lurking in there. Plus very expensive. Plus car breakdown, more expenses. Sorry to moan about money, probably not the place, everyone has other problems some way more severe. Just that everything seems to have piled up at once and I’m having trouble doing anything about anything.

Probably a stupid thing to do but over the weekend I reduced from the 40 to 35 on Friday, rethought that and went to 37.5 for Saturday, Sunday, and yesterday. I thought it would be good to show the GP I was working on reducing and not the “bad patient” the rheumy said I was. I had some random pains, even in teeth, and felt “lead-footed”, more tinnitus, exhausted, but those things have pretty much subsided and I felt some better even at this little bit of a reduction. Before the rheumy fiasco I had been feeling ready to start reducing, root canal went well, sleeping a little better with fewer 2-4am wake up symptoms, etc.

I just can’t seem to prepare for this appointment tomorrow. My brain seems to have failed me.

I’m afraid she will want to put me in a too strict taper plan.

Until I can find a good rheumy who is taking new patients and takes my insurance, ( this could take a month or who knows how long, and I may need to switch GPs to be referred to a rheumy in that system ), she is who is taking care of me.

Ok had my tea and will try to go back to sleep.

[suzy1959]

It is easy to say try not to worry, but do try!

Remember, the doctors are supposed to be there for you not the other way around!

Write down notes for yourself about what you want from the Gp and what you don't want.

Is there anyone who can go with you for support? I have found that helpful on so many occasions!!

You will get through this and you will find a way to manage this difficult condition. Nothing stays the same for ever.

Good Luck!

[SheffieldJane]

Well I think you have just explained everything beautifully so take a copy of this post to your GP. I am sorry that you have all these worries on top of your illness. I have been there and know how draining money worries and family worries can be. We are all rooting for you here. I feel angry on your behalf that your Rheumatologist, who is employed to help and heal has compounded your problems so much. Do not feel pressurised to reduce your medication, you will only end up feeling worse. I hope your appointment goes well ( sometimes we can be pleasantly surprised) and get an angel. Let us know how it goes.

[jinasc]

I wonder if you downloaded the guidelines, which were developed by American College of Rheumatology and the British Society of Rheumatologists and also European Union League Assoc of Rheumatologists which has all the leading people all over the world working together would be of any help to take to your GP.

If you think this would be of use, just go to this link and then download it all.

pmr-gca-northeast.org.uk/as...

[Insight329]

If you haven’t started it yet and still have time, write up your experiene, remembering the who, what, when, where, why prompts. First one should be your date of diagnosis and mg on. Then try to go experience to experience. Use your past postings for help your memory. Remember to insert when you called your Rheumy for assistance, the purpose for the call, and what the outcome of the call was. Log your attempts at reduction, if they worked or not. If not, what symptoms you had. Also list any life events that might have come into play such as your dental work, fevers, other stressors. Try to do this very methodically and without thinking about the upcoming doctors appointment. Keep your emotions out of it and do it as just a fact remembering. Then finally list what he said, i.e.. that 'you ruined your body'.

Also, jinasc’s suggestion is excellent in taking current guidelines. In addition take the latest Mayo report that side effects aren’t as bad as originally thought medpagetoday.com/rheumatolo...

Best wishes!

[PMRpro Ambassador in reply to Insight329]

Those are for PMR doses - GCA doses are much higher and that is why so many doctors are desperate for us to reduce. But it doesn't alter the fact you need what you need in line with othere things...

[CT-5012]

Agree with all the excellent advice given above, every sympathy for your experience with a rubbish rheumy. All good wishes for your GP appointment and a big virtual hug. 🤗

[Hidden]

Good luck. I will be keeping my fingers crossed that it all goes smoothly. I think financial worries really impact on conditions like pmrgca so for me it's appropriate for you to mention it. 🌻

[Insight329]

Also, if your doctor didn't explain the difference between Steroid Withdrawal symptoms (coming immediately on reduction) and a flare (after several days on the new mg), let her know that, too. You may have thought that you were experiencing a flare and it really was withdrawal symptoms. Let her know this IF it applies. That's important, too.

As good as my doctor is, he didn't explain that to me. I learned that here. Had I not, I would have thought that I was in a flare more than once.

[Hidden in reply to Insight329]

Ditto

[PMRpro Ambassador in reply to Insight329]

It happens an awful lot! And doctors can't tell the difference either it appears!!

[DorsetLady PMRGCAuk volunteer]

Hi Mstiles,

You can only tell her your side of the story. As Jane said print out your post and take it for her to read.

Explain you have tried, but you have too much stress going on at the moment to make much headway. If she’s worth her salt, she should at least listen to you, and work with you rather than against your wishes.

Good luck, it may not turn out to be so difficult as you imagine. Things always seem impossible when you think about them in the middle of the night!

[Hidden]

Ohhhhh Mstiles, I am so very sorry this is getting to you.. although I understand why you'd be so upset by the situation... I wish there was something I could say to alleviate some of your worry and stress, but unfortunately, I "got nothin." Please know I will keep you in my thoughts and prayers and hope that something wonderful happens to turn this whole situation around for you. Please let us know what GP says. xxx

[PMRpro Ambassador]

Just print out the post and take it and hand it to her. And work from there. Don't be afraid to show how upset you are.

[Rugger]

Over a year ago, I was so upset at one of my GP appointments that I cried for almost the whole 20 minute (double) appointment. Since that time, he has been WONDERFUL and because of that, I've not cried when I've seen him - had no need. I must add, the tears were not about his treatment of me, but one of his colleagues.

Don't be afraid to show how upset you are. We're all behind you. Let us know how you get on.

[4840]

Mstiles, where do you live in the Western US? I feel for you about all of your troubles. It is good to write down your experience about your uninformed Rheumy for your GP. It will get sorted. It happened to me as well, and now I have a Rheumy who understands SLOW tapering. Good luck!

[Mstiles in reply to 4840]

Thank you. I live in Northern California about half way between Sacramento and Lake Tahoe. About 45 minutes from Sacramento in a rural, suburban area.

[4840]

Mstiles, I live in Vancouver, WA which is very close to Portland.....just across the Columbia River. Many American doctors/rheumies are not very knowledgeable about PMR. It is not life threatening, and they do not take it serious, and have no clue how painful this disease is.

I needed to get in touch with my GP who transferred me to a different Rheumy actually in the same department who is much more understanding. Your GP is able to prescribe the needed prednisone. with a slow taper. My GP did at the time before I was transferred.

I hope all goes well. This forum is a blessing with all the information!