After the disastrous appointment 2 weeks ago when my rheumy dumped me with no warning and discharged me back to my GP, I saw her last week, very apprehensive as to how it would go and wondering what he had told her.
She asked me why I had difficulties tapering from 40 mg, (I went to 37.5 five days before ...to show some progress!). She didn’t really listen and was unsympathetic, “he’s really experienced, prednisone will kill you, there are really bad side effects”, words to the effect that she’s not comfortable supervising GCA. etc etc. tried to show her some guidelines on my phone which didn’t work too well.
She then left the room to make calls ? Find me a referral? (There aren’t any other rheumys in this network). Came back after 30 minutes with a prescription for pred and a taper plan for 4 weeks when I’m to see her again.
The plan: 1 week on 37.5
1 week on 35.
1 week on 32.5
1 week on 30.
Written for 5 mg tablets
She’s in a hurry, no discussion about tapering symptoms, call her if I have problems, etc.
she did try to give me an awkward semi-hug before she left the room! Ha ha
I’m 6 days into the second week on 35 mg. So far seems Ok, (lots of tinnitus, random rib, back pains, double type when reading sometimes, the usual 2-3 am waking,) until yesterday and today, dizzy yesterday and more wobblies. Also feeling “not here”, disassociated.
The day after I saw the GP, I saw my eye specialist who said no damage from GCA but I have raised eye pressure so prescribed Lantanoprost.
I told her what had happened and asked if she could refer me to a rheumy in her system, (a teaching hospital). Hope she doesn’t now think of me as a “problem patient”, as this system is linked electronically to the other system and she can read all the doctors notes.
I did get an appointment with a rheumy from that referral for next week. Cosmic joke! The doctors middle name is the same as the last name of the guy who fired me.
So my questions are, what should I say to this new rheumy? Do I have to explain what happened? Obviously I’ll have to give my history, treatment, etc. this doctor is also in the system and can read the other doctor’s notes. What do doctors think of patients who do this? Is this “getting a second opinion” if in fact you have been let go by your doctor?
I’ve got a few other names to call, and the GP’s office called me and will try to get a referral to another rheumy who isn’t in their system and is farther away.
Does the tapering plan prescribed by the GP sound reasonable? I guess if I’m not under a rheumys care in two more weeks she’ll have to keep prescribing for me. The old rheumy cut off my prescriptions. With insurance issues and scarcity of rheumys plus pred head and transportation problems, no guarantees I can find someone in 2 weeks.
Thank you for plowing through this long saga. And for any thoughts and suggestions.
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Mstiles
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I'm sorry, but you don't work for the doctors. The doctors work for you. I don't care whether you're seeing them privately or through the NHS, YOU PAY THEM. They exist because you educated them and support them. They are your employees. Treatment decisions are yours, not theirs., They give you the information, present the alternatives, make recommendations, and YOU decide.
As to how to refer to your previous doctor, one could simply and truthfully say "We just weren't connecting. And that's important to me because this is a long term condition, and I have to be able to communicate effectively with my doctors."
The tapering looks OK to me but I'm neither you nor your doctor. Only you will be able to tell whether it's too steep and/or too fast. If it is, perhaps dropping in 1 mg stages would be better. And ultimately faster, without the back and forth and up and down. Just a suggestion, though, for you to discuss with them.
As to whether pred will kill you, I think that's a bit strong unless you have some other conditions that make it dangerous for you. What you know is the GCA can blind you, and if left inadequately treated can cause strokes and cardiopulmonary problems. And as of new, there are few alternatives to pred that will adequately treat GCA, and the alternatives pose risks at least as great as those posed by pred.
I urge you to stop feeling guilty and/or ashamed of FIRING THAT DOCTOR who was not responding to your needs and was not interested in treating you properly. You wouldn't let your lawyer or your accountant talk to you that way, would you? My bet is not even your spouse would get away with it.
Keep looking for a medical team that supports your goal of surviving GCA with intact sight and minimal inflammation damage elsewhere, and is ready and willing to keep the lines of communication open.
Thank you Good Grief, for your support. “We just weren’t connecting” sounds perfect.
Agree with good grief. Stay strong!!
On paper the reduction looks ok but as GG says we are not your or your Dr. Perhaps the reduction will help you determine what symptoms are the GCA and what might be (I can't underline on my phone) steroid withdrawal. Please excuse pred head. I can't remember if you live in Scotland?? I can't navigate to check your past posts or I lose this message. There must be someone in Scotland somewhere that specialises or has an interest in GCA. But same applies to wherever you live. I am on a very limited income but if I was in your position I would have to tighten my belt and get the money for a private consultation. I may have missed the point altogether. Please print the guidelines for treatment of gca at the local library and hand in at surgery. There is no guarantee that your Dr had read them. Good luck and fingers crossed.
Thank you, I live in the US and we are chopped up into many different hospital, insurance, systems, so a lot of different practices. Not all take all insurance, etc.
Thanks Poopadoop. Nope I’m in the US. Might be easier to fire a patient here with no national health service? I understand pred Head, makes communication even more difficult unfortunately.
Good_Grief laid it out quite nicely. I get that feeling that "they are the boss". I once operated in that mode, too. However, I was discussing with my best friend, whom happens to be a doctor, that I was afraid to tell my Rheumy I had stopped taking Fosamax and was afraid that he was going to be disappointed and order me back on it. She scolded me: "You have to stop thinking like he's the father, your his kid, and you have to do 'as told'. You hired him. You tell him what you are coming to him for and then he proposes a course of action in which you can agree to or disagree to." She very seldom 'scolds' me and as she is a physician, I think she probably knows what she's talking about. That was a real shift in thinking for me. However, I'm afraid that some docs egos won't agree with that assessment.
I like the idea of you going to a doctor in a teaching hospital. They have to keep current as most likely they are teaching medical students or residents/interns/house officers.
Instead of pulling things up on your phone, take the time to download what you might want to reference. I would take the article from Mayo about side effects not as bad as currently suggested. Any Rheumy in the States that have been keeping current on the education will recognize the author and if not his name, his association with Mayo will make him/her take note. So if the discussion of "Pred will kill you" comes up, you can say not necessarily...pull out the Mayo report and nd then bring up what Good_Grief points out -- Untreated GCA/PMR also have serious consequences if left untreated and you'll stay on Pred, thank you very much.
Thanks for the update. I wondered but didn't want to ask in case you didn't want to discuss it.
Thanks Insight. Yes Mayo should impress anybody. I don’t have a printer and have to go to the library to print, which seems like a minor thing but minor things seem huge right now, I will print things and not use my phone
If you go to a doc at a teaching hospital, don't be surprised if a student joins you in the appointment. Please allow it, if they ask -- it's their 'on the job training'. Don't be offended if they don't ask and a student is present. In our hospital, it's a given that learners will be with their doctors. We're a teaching hospital and that is what you agree to when you make an appointment with our doctors. 'If you don't want learners with your doc, you should look for treatment elsewhere.'
I think that you have made progress, even though it doesn’t feel like it. You are making the big machine turn around to your direction. I would be like the U.K. Royal family, don’t complain, don’t explain. Just try hard to have a relationship with this Rheumie that ends up being productive and positive. Take some notes about the progression of your illness and response to the taper. Don’t bad mouth the other guy, he was a petulant fool but they will never ever say so.
You are on this huge dose of Pred to ensure that the dangerous inflammation is doused like a fire to safeguard your eyesight. Once the fire is just a smoulder there isn’t much point in pouring gallons of water on it. The aim is to get to a comfortable dose whilst the illness runs its course. Pred Is a beautiful, horrible drug. It is incredibly effective and yet dangerous in high doses and can make you feel so awful that you want to die. Look at mamci ‘s description of her symptoms. I think tapering is a very individual thing. I sometimes think I am being a coward not going lower than 7 mgs. There is a lot of guess work involved. I have been doctorless for so long that I would quite like to do as I am told for once. ( my Rheumie’s ill and GP’s variable). That tapering programme maybe ok. It’s 20 mgs and lower when I would want monthly 1 mg drops. Try it. 🌼
I think the clumsy half hug from your GP says it all. She’s on your side but loyal to her profession and GCA is not supposed to be tackled at her level. Though more for undertreating and failure to recognise it than getting you off high dose Pred I would have thought.
I hope the cosmic joke is on the other fella and this is the good twin you get.
Thank you so much Sheffieldjane for your encouragement. I love the royal family reference, good advice. Yes there was some positive there with the GP, I will try very hard to go in with a positive attitude that we will make it work, and not start out with a negative frame of mind. So thankful for you-all on this forum!
Jane brings up a good point: not only did she hug you, she offered to see if she could get you in with another doctor and one in a teaching hospital. I think maybe some of her 'distance' is that she just doesn't feel commenting on a disease that she's not familiar with.
My eye specialist is the one who got the referral to the teaching hospital system, not the GP. The rheumy is actually at a branch office, not in the hospital but affiliated with the teaching hospital system. Hard to keep everything straight with all this!
But yes, there was some positive, the hug! It seems they are all deathly afraid of being sued.
Dear Mstiles, I have attempted to respond to your post 3 times and each time I get to a point where I am literally at a loss for words. Your situation and the way you have been treated is unfathomable to me. I am so very sorry you are experiencing this...
The "awkward semi-hug," would have done me in as I'm not a big fan of, uncomfortable, disingenuous empathy! Thanks, but no thanks!
Re: new doctor: My initial thoughts (and I'm going to be quite blunt with you, sorry) is to say stop thinking so much about what these "people" think! Who cares what they think about you!
Yes they are "doctors," but they are just PEOPLE! They are not your family, not friends... You have no vested interest in them, or them in you; it a medical/business arrangement. The NHS is paying them to look after your health needs, that's it. Let them think what they want. Truth, be told , after you leave their office and they move onto the next patient, they most likely aren't thinking about you at all!
You have not done anything wrong. You have every right to question your treatment and advise them when that treatment is not working for you.
Personally, I'd be honest with new Rheumy (whichever one you end up seeing), but be prepared!
Go in with a written/typed out brief, but succinct, chronological overview of your issues and treatments.
Have the NICE Guidelines (and any other supporting documentation you can find) printed out and be prepared to talk to it.
Talk about the fact that the setbacks you have experienced are impacting your "quality of life," and causing you undo stress, not just uncomfortable physical symptoms.
Do not feel bad or be embarrassed about seeking a "second opinion" or not being happy with a treatment plan that another doctor created for you that did not work.
We are NOT ONE SIZE FITS ALL. Your old Rheumy's approach did not work for YOU! So it's okay that you are looking to work with someone else, who's methods and approach DO WORK FOR YOU!
So sorry to beat this horse to death... I was the legal "Medical Proxy," and acted as a "Patient Advocate," for my Mother and both brothers, after they were all diagnosed with terminal cancer... I dealt with Oncologists, Surgical Oncologists, pulmonary specialist, brain surgeons, pancreatic cancer specialists, etc... There were many times when I had to question their judgement and disagree with their advise. We were always able to have calm, level headed discussions where I was able to express my opinions based on my knowledge of my loved ones and what I believed was best for them. I must say all the doctors I dealt with treated me fairly and listened to my concerns.
Be strong in your convictions. You know YOU better than anyone! You know what's best for you. Don't be intimidated by a medical degree!
Sending you love, light, strength, confidence and conviction.
Thank you so much for your beautiful reply mamici, I felt fortified just reading it and feeling your strength through your words. I’ll be 75 next week and prior to getting sick last year had been extremely fortunate and lucky to not be in any meds or have any serious health problem. I have “fear of doctors”! Hope this isn’t too much detail but I had a lot of trouble years ago when my son was diagnosed with severe Crohn’s disease, he had no insurance, (we’re in the US), had to be treated in public hospital emergency room, 3 surgeries, a total nightmare, ended up with a permanent ostomy because of poor treatment. I feel I didn’t advocate strongly for him, Your family was certainly fortunate to have you in their corner.
Thank you Mstiles. Never too much detail... we share what we need to. I hope my comments weren't to blunt and "in your face," but I felt, strongly, that those were the words I needed to convey to you... take them with a grain of salt. I'm so sorry about your son... and PLEASE don't blame yourself for the mistakes and/or poor treatment of other! There is no saying that even if you were the strongest, most vocal advocate for him, that anyone would have listened. It's a different world now though, so lose that "fear" of doctors.... they are only human too! xxx
Oh no! Not al all! You had nothing to do with it. You have only helped, in so many ways. And I do have a good therapist, thank goodness, for these issues.
Hi, I was in panic mode yesterday for my rheumy appointment because I had stopped having actemra injections. I expected he would be extremely rough with his manner. What a wonderful surprise I had. He was disappointed I was back on steroids but willing to continue to work with me.
Before I first went to him I read only bad revues, but he was the only one I could get in to see with a short wait. I am glad I did. He scratches his head a lot during my appointments but l feel he listens to what I say.
I know this may be going against the grain, but let's have a look at this from a slightly different perspective, and ask why your doctors might have seemed not to be taking your perspective on board. After all, understanding the perspective of those we need to work with is a major part of collaboration and getting a win-win outcome.
Reading your profile statement it looks as though you have been taking 30-40mg of pred a day for several months. This is going to make any doctor anxious, because pred starts to strip your bones of vital nutrients after 3 days at that level. If they let you carry on like that without urging you to reduce, they could be laying themselves open to charges of negligence further down the line, when a patient has developed diabetes or fractures.
Some of your symptoms may be due to the levels of prednisolone you are taking, particularly the vision and eye pressure issues, because the pred causes blood glucose to rise and this in turn leads your corneas to swell.
GCA is not going to blind you at these doses of prednisolone. You can reasonably consider yourself protected.
Once specific GCA symptoms are under control, it is standard medical practice to reduce fairly steeply down to about 15-20mg. Your doctors are only following this standard practice. It is from about 15mg downwards that it becomes very important to taper gradually, gradually.
You could ask your (new) rheumatologist to help you out on reducing pred by putting you on tocilizumab as well. This is now licensed by the FDA and is showing great promise in cutting the health burden of steroids, which is real.
Thank you Kate. I knew nothing about this disease, like most when diagnosed, and I wish I had had all this explained by my rheumy. Communication wasn’t working between us. I had the first office visit at the end of December, diagnosed with PMR, put on 15 mg pred, then a week later when headache continued, diagnosed over the phone with GCA and told to immediately take 40 mg to protect my sight. I also had a UTI at the time and had just come off Methimazole for Graves’ disease in December, to further confuse things.
I was told to reduce in 2 weeks to 30 if my labs were OK, which they were. I Did not have another office appointment until Feb. 22, and then the last one beginning of April when I was not examined, just dismissed. Communication was through his office assistant
I probably panicked at withdrawal symptoms when I tried to reduce several times but didn’t know what was going on, if it was a flare, if my eyesight was protected, etc Learned all this from reading on the forum and your book. I
Hopefully I will be able to move ahead and have a good relationship with a new rheumatologist.
"prednisone will kill you, there are really bad side effects"
What utter rot!
However, the reduction is pretty fast and you may have some discomfort - but after so long on these high doses you do need to try to get the dose down. So do try to stick it out to get to 30mg and then ask for a couple of weeks to try to stabilise before going lower.
Yes, so far so good. Now at 35 for a week. Going to 32.5 tomorrow or Monday. So far Tylenol has taken care of most tapering pains. Pains are similar to what I had before diagnosed with PMR.
I too was referred back to my G.P. from my Rhuemy. No plan was put in place just try reducing steroids by 1mg per month. It seems it’s up to me to seek an appointment with my G.P. So it left me feeling all at sea. After 3 years on Pred. diagnosed with GCA and down from 60mg. to eventually 4mg. after a flare and back up to 10mg. I am on 8mg. So I sympathise with you Mstiles. This site is invaluable to find the information we seek, so I hope the excellent replies you have had are a great help to you. Annie1001
Thanks Annie. We’re you referred back like me because you didn’t follow what the rheumy wanted? Or because you had been on pred for so long? Seems like you’vd sure come a long way already. Was the 1 mg a month plan too steep a reduction and caused the flare?
Thanks for sharing your experience. Thank goodness for this forum!
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