I just got kicked out of my rheumys practice because I’m still on 40 mg and didn’t reduce to 30 as he instructed several times. “Labs are perfect!” He says. Symptoms not that important. Told him why I didn’t want to reduce, tooth abcess, root canal, problems, also problems communicating with his assistant. He loudly told me he had talked to me 19 times, what??? Maybe called the office, not him, and certainly not 19 times in 3 months! So upset!
“I’ve talked to you at length!” He said.
He’s calling my GP and releasing me to her. Says he can’t be responsible for what happens to me from the prednisone since I won’t follow orders. But he will refill it until I’m under someone else’s care.
Told him I was having “niggles”, but his mind was made up and he didn’t want anything more to do with me. They didn’t even take my blood pressure or temp.
I feel awful and scared and like a “bad person”.
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Mstiles
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I so wish they could inject emotional intelligence. this is appalling "treatment". I'd be feeling crestfallen - I do hope you sleep well. Everything happens for a reason - there is another Rheumy more qualified to help you, and tomorrow you can start to find that specialist. We are all behind you!
It's shocking to hear this, based on your account of things - especially the remark 'symptoms are not that important' (!) from a Rheumy who, in my experience, should know better - and also have (or at least demonstrate) some empathy with you
All I can suggest is: wait for some informed / trusted opinions and suggestions from the 'Aunties' / other experts / those more knowledgeable than me in these things as to how to deal with this unfortunate interaction with your Rheumy - and also how to proceed with your GP.
In the meantime, don't feel bad / guilty unnecessarily. Try to keep a steady head, and arm yourself with reliable facts and information to help you in managing the best way forwards for you and / or in discussions with your GP in terms of getting the appropriate treatment in your personal context.
Fingers crossed for you, and please keep us posted..
I realise that the recently attributed (to me) rather Official sounding 'Admin..' badge might confuse and / or concern a few of You Lot in terms of my (perceived) ultimate role and purpose here, and also that it might influence (+/-) our usually friendly and informal relationships and dynamics - which I really appreciate and hope will continue :-).
But, seriously, don't worry. I can't say too much right now for various reasons: only to say that any kind of badge or perceived status that I currently have, or might have within PMRGCAuk or HU won't affect who I am, my values, opinions, relationships with my many good friends here, or my judgement in interacting with You Lot.
My sole mission as a PMR Survivor and contributor here is to 'give' positively - and from an informed and balanced perspective. For me, at least, Life's too short and precious to do otherwise.
You wouldn't let your plumber of accountant talk to you that way. You're well rid of a doctor who doesn't listen. And no, you're not a bad person for refusing to be treated by someone who isn't treating you at all. Good riddance to bad rubbish.
It's a blessing. You'll find someone that you can work with now.
How upsetting Mstiles. This is the first time I have heard of someone’s Rheumatologist behaving like this when faced with a frightened patient. He is appalling. You are not a bad person you just have had the misfortune to have a bad doctor. Let’s hope that the silver lining is that this leads you to a good wise doctor who will help you back to good health. Keep in touch with us. Try not to feel bad. This is not your fault, you were in a vulnerable state and you have been bullied. Where are you geographically? Perhaps someone on here can help with a Rheumatologist recommendation?
Thank you Sheffield Jane. Yes I was bullied, that’s exactly right. He had already made up his mind to do this, as soon as I told his assistant I was still on 40 mg it was all over. She didn’t bother to take my BP it temperature.
It sounds like there is a pretty toxic sort of relationship between this doctor and an assistant who works him from behind. You are well out of it. They are a disgraceful, ignorant pair. New Rheumatologist is definitely indicated. A big shout going out for an amazing Rheumie in Northern California !
Now now, SJ. You were 'in trouble' with your bush story. Now you say' an assistant who works him from behind'. Sorry, but I couldn't resist commenting!
I know mine has given up on me..."nobody has PMR for 6 years" yeah right, and wait for it....you DO NOT get pain when lowering if it`s PMR....my patients haven`t (when I first saw him for second opinion)......with someone that self righteous .......he can go and whistle....bet he`s top of the class for that as well!
See a registrar now if I`m lucky, she`s the opposite....if not will just see my doctor.....we do not need the added stress when trying to get well....
What you have written sadly doesn't surprise me...there seems to be an arrogance with so many rheumys........they just love throwing their toys out of the pram!
What an arrogant man. All I can say is you are well rid of him!
There’s only one bad person in this...and it sure ain’t you!
I can well inderstand you are scared, but you need a doctor with empathy who will treat you as a person and listen to your concerns - hopefully your GP will do that!
Ohhhhh Mstiles! I am so sorry this has happened to you! YOU ARE NOT A BAD PERSON!!!! Get that right out of your head!
You're an unlucky person with a complicated, debilitating disease. You are stuck in a broken system that promotes (without any other options) the use of glucocorticoids, because it's the best they have! However, at the same time they're not engaged, knowledgable or informed enough about the diseases (or the glucocorticoids) to leverage the "guidelines" using common sense and an understanding that their patients are not "one size fits all."
It's not you!!! It's them!!!! It's the system. It's the tired (perhaps lazy) doctor's and consultants stuck in a broken system.
Hmmmm... my doctor always has my blood pressure, weight, temperature taken before I even see the doctor. A nurse does it before I even get to the exam room. I wonder if he had already made up his mind up to fire you before he even saw you. Being at 40mg was his excuse.
If me, I wouldn't beat myself up too much regarding this. I'd look it at from the perspective that this is a doctor that may not like to have his 'orders' challenged or questioned. A doctor that may be rigid in his treatment. And one that may want minimal patient contact if he has put up great walls to isolate himself from them. That's not the kind of doctor that I want for these diseases that 'have their own rules and changes those rules on each person'.
My doc once said to me "It's my job to listen to your concerns and find a solution that we can be both happy with". Go out there and find a doctor like this. Not a "it's my way or the highway' kind of doctor.
And now I'm going to play 'devil's advocate': Tapering is scary. I've stayed on mg's longer than my doc wanted me to because I was scared to even try to go down (happened after a flare). I get those 'niggles', too. But after a few days my body gets adjusted and I say a Thank you to the the tapering gods. Yes, those few days I'm not comfortable and scared (it is a flare?) but I try to 'pull up my big-girl panties' and wait it out. I'm certainly not saying that you shouldn't have stayed at 40. Just want to gently give you courage to try to taper if there's fear there holding you back.
But no doubt about it: this doctor was an a$$. Don't lose sleep over this. It's probably a blessing.
Yes fear of vision loss has probably been stopping me from getting thru the tapering, I certainly know more from finding this wonderful site about symptoms versus flare, etc. knew nothing at first in January, and also had Graves disease(in remission) which can cause similar symptoms if it got out of balance).
Definitely fear, maybe too much, caused a problem.
But as all the others have said, well rid! I am on my second Rheumy, put up with my first one for two years, thinking the lack of communicaiton, understanding etc was my fault. I now have another and she listens and cares and is reasonable!
Don't take this on yourself, the problem lies with him not you. You need support and sensible advice to help you take control of this condition, not blame and ridicule!
I am on my second Rheumy also who listens to me and allows me to reduce SLOWLY from 10 to 9 1/2. The previous one said......are you STILL on prednisone, when I was on 12 mg. She wanted me to reduce asap because I should be done with PMR after 2 years!
Yes no swelling or pain there after the root canal this week.
In the last 3 months since I was putbon the 40 mg I’ve tried to reduce, got symptoms, got scared and went back to 40. Once even to 45 for a few days. My labs have always been fine.
Hence my blaming myself for being a “scaredy cat”.
He wasn't there for you when you needed him. The dose you have been on is high and needs constant monitoring, but you were left to flounder. None of this has been your fault. But now that you really know the score, and that he isn't worth the time of day, you can move on and things will improve. ❤
Where do you live, I or someone else might just know a good one...................
You are well rid of that Consultant and he should not be allowed to get away with treating any patient in that way. He is lucky it was not me, I would have taken him apart bit by bit which I once did to an Orthopaedic Surgeon whose contract was not renewed.
When you are less distressed contact PALS about his atrocious manner with a patient he is supposed to be caring for. How old is he? If young he needs to be told now for the sake of future patients. If old, well teaching an old dog new tricks is problematic, but if others have complained in the past...........you would be adding to a slow burning fire.
Stay strong you are in correct in what you did, I would have done exactly the same in your situation.
Patient Advie and Liasion Service, acts on behalf of Patients in some areas.
Now, Put in your search engine mayoclinic.org/biographies/... this will take you to one of the leading experts in the USA, email him and ask if he can recommend a Rheumatologist near you, he is based in Minnesota.
Not only is he an arrogant g1t, he’s a liar. I remember you posting when you were having difficulties communicating with him, and at that time weren’t you looking to find another rheum? So no change really, other than he’s confirmed what you already knew.
Won’t follow ORDERS!!!??? This guy has a LOT to learn. He should have listened to you, accepted that you had difficulties, for all he knew you hadn’t understood what he said (I think you did, but he doesn’t KNOW that). As for not taking responsibility!!! Is he running scared?
NVM Mstiles, you have wisdom in abundance here, and all the support and kindness you could wish for. Have a cry, get a little bit angry, then face tomorrow with determination. You can do this 👍🏼
Your Dr can't fire you because he works for you......not the other way around. You can only do better by finding a new Dr. I'm sorry you were put through such a horrible experience by the very person that was supposed to help you.
Don't you dare feel like a bad person. That is the most unprofessional thing I have heard of. It's not like you are abusing opiates and getting high! I would find a doctor who understands PMR and then work with him/her. Don't let anyone bully you. 40 mg is a lot so I would try to get it to a lesser amount but you will have to know what that is to keep your discomfort and pain away. Just don't reduce too fast.
Thank you, of course I want to reduce the pred! I was diagnosed with GCA beginning of Jan and put on the 40 mg. Tried to reduce to 30, and 35. Got symptoms and got scared. So went back to 40.
Oh my what a nasty piece of work he is ... what happened to ethics and compassion ?? Have to agree you are probably better off without him, maybe you can find another with more scruples hugs to you !
What a nasty confrontation- his coming your way too and you may so not need another Rheumatologist if your GP can guide you. Follow the slow reduction method that is often on this forum.
How absolutely atrocious, you poor thing. With all you’re going through to be treated in this manner is disgusting, he should be hauled over the coals by his professional body. I presume they do have to belong to a professional association who monitor conduct and standards. No way are you a bad person. My very best wishes to you. Dear God PMR and root canal work, it doesn’t bear thinking about! Tons of sympathy coming your way.
So sorry you have had to deal with one of these doctors who have no compassion. They seriously need to review who they accept into medical school. Since I got sick in September, I have certainly come across many who do not deserve to be doctors.
I battled a jaw infection with 2 cracked abscesses molars for 3 months, it went undiagnosed. I was on 50 mg in February when I had the teeth extracted. I have managed to get it down to 14 mg but it isn’t easy. I still have pain and stiffness every day. I probably should be on a higher dose but my new rheumatologist treats me like a school kid and drug seeker, but he did agree to some of my suggestions.. There aren’t many rheumatologists available so I put up with it for now. I hope you find another one that works with you and you can find some compromise.
Thanks Kath567. I Remember reading about your horrible ordeal when I found out I had the abcess and needed the root canal. I hope I don’t need anything else in the other teeth!
Glad you are doing better and managed to come down from the high dose.
Yes rheumeys are scarce, good ones even rarer it seems.
I am horrified at such behaviour by a so called 'health professional'. His responsibility was to listen to your fears and support you on your journey to a less damaging level of pred. It is he who has failed, NOT YOU. He didn't even achieve the first base of a Dr / Patient relationship, ie. gaining your trust and confidence.
You will be so much better off without him.
May I suggest that you write down how YOU see what happened with this bully, including why you found it impossible to reduce. The experience of pain, fear, stress, vulnerability, and your attempts to discuss this with him. This should help you get things into perspective--- (it is definitely not your fault). Then take it to your GP, let her read it, and ask for her support. Perhaps no new Rheumy until the bruises from this one are healed, just sensitive supervision and support by her for the moment.
I regularly offer written info to GP and others as with 'Pred head' it is so easy to come away without having said my piece. Will be doing that myself for follow-up this afternoon. My GP says he likes it as it saves him trying to drag info out of me and leaves more time for planning care.
Good luck and keep your chin up. I really hope you can get the support you need very quickly.
What a good idea Fren. Thank you! Now more stress deciding what to say to my GP. And dwhat should I do about trying to reduce? Yes I found it difficult to speak up to him, he had already decided to do it.
Don't stress Mstiles, you're already half way there.
Just copy out your post (perhaps print it out) and add to it. That way you do not start with that intimidating blank sheet of paper.
Put in anything that will tell her how you have been feeling. You will find a lot of your thoughts in your replies to friends on this thread and in your posts about the distress of your root canal problems.
Don't worry about grammar etc, it is not an exam. Use bullit points if that is easier
Few people can resist a cry for help, so ask her to support you as you start to taper, you will gain confidence and be less anxious as you start this process.
Thank you for your help, I was feeling so abandoned, left to fend for myself. What about my pred prescription? I had to ask him about it. Then he said he would fill it until I was under my GP or someone else, ( I do have some left).
He seems to have transferred the responsability for your care back to your GP. She will prescribe for you for the moment, so do not worry. You will not be left in limbo.
We are all here for you too. you are definitely not alone.
Get another rheumatologist. He dismissed you because he does not want to assume liability because you refuse to reduce. He is not doing his job and should have listened to you each time you made an office visit.
Please consider sending him and his office a letter documenting your opinions and recap what you remember he told you on each visit to protect yourself.
There seems to be a consensus that you need to look for someone else to manage your care. You must be able to trust your doc and his staff for that matter. They work for you. It’s obvious that this is not a empathetic doc or he is out of his league . Get back with your GP quickly to help you sort this out. Keep pressing until you can find the answers. Take care and feel better soon.
Yes obviously it wasn’t working. I have an appointment on Monday with my GP that I had already made, maybe a premonition! Will have to figure out what to say.
Oh dear!!! How horrible for you. One of the best things I ever did was to "go back" to the Rheumatologist I liked and did not stick to the one assigned to me. She had moved her office further away, so now I travel almost 2 hours each way to see her. She is very committed, reads up on the literature and she listens to me, does not dismiss my concerns and explains why she recommends what she recommends. She is in the Kaiser Permanente system and there have been visits when she has a line up of patients and we have to be efficient with her time. I do my part by having my symptoms, questions and concerns written in advance. Anyway, since you are on quite high doses of prednisone, (and assuming you have GCA) I encourage you to find another Rheumatologist who can work with you...don't rely on the GP solely over the long haul.
How wonderful your rheumy sounds. I don’t have Kaiser, I have Medicare and Medical in California. But I will search for someone better. Long waits for appointments too.
Quote .. Please doctor help me manage this better.end of quote .. Keep your symptoms to discuss as well.. but let him take the lead. In what time period have you been trying to taper? That is of interest to them.
I agree with everything everyone else has said and my contribution is 'really!' he kicked you out of his practice, well I for one would not give him the time of day ever again and would have to tell him that you are not happy with the way he is talking to you, you have a right to defend yourself, but at the same time I know how you must have felt - like a rabbit in the headlights - I feel so angry for you. What about the saying only treat others as you would like to be treat yourself? Don't be afraid as you have done nothing wrong. This is not a good situation you are experiencing at the moment but remember you are vulnerable because of your illness and this is emphasised 10 fold because you are on Pred. As SJ says there will be a sliver lining at the end of this and I feel some good WILL come out of it in the end. You'll find a caring Rheumy who will look after you. I trust you have a good GP who will listen to you and recommend the way forward. When you feel up to it you need to report this person before he does it too many times to others, that's the only way to treat bullies which is clearly what he is. Get someone close to you to help formulate a formal complaint when you are up to it - It's a shame we are not nearer to help you out! I tend to be edgy and scared sometimes on Pred. but now know this is just a state of mind - you will get better as you reduce, I can promise. I still jump out of my skin sometimes and I'm on a much lower dose than you. You are truly in shock, the b*!!*!!....! how dare he?
So take heart from all the good wishes and hear what everyone is saying remember 'you have done nothing wrong' so nothing to reproach yourself for.
Keep us informed of progress and all the best - you can do it.
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