Hey there @tamac how are you holding up? Is the Tremfya helping?
I have had my second loading dose and am in the E8W now. Still waiting to see. I have made myself get outside and do some more strenuous work for a few hours on weekends. Found a young man to hire that will help me catch up on some projects. I pay for it the next week, but I am going to keep trying.
My wife and I decided to attempt an Alaska Cruise vacation. We have wanted to do it for 20 years. I figured now or never, and prices are down since they just started back up. We are going in August. That is giving me something to look forward to.
Mentally, I am better. I think working hard a little is helping that. Work is becoming a serious PITA. Wishing I could go ahead and retire.
Pain med use is down, but now I think I have torn a meniscus in my knee.
I am hanging in and trying to keep my mental attitude up.
Thanks for asking.
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Having something to look forward to can be a HUGE plus, it can give something else to focus on.
For me, personally, keeping my mind occupied is a must. My mind can take me down some awful dark holes if I let it. I know this because Iāve been down to the bottom of that hole before and itās not just dark, itās pitch black and trying to find my way out of that hole was one hell of a journey, one I wouldnāt recommend to anybody.
I now try to recognise when my thoughts are headed that way and make the changes needed to avoid falling too far into the void. An issue with painful conditions is that we often have a constant reminder, having others making statements like āWell, just get on with itā¦ā is like a slap in the mouth. Weāre often already pushing our bodyās own limits to be where we are at, but others often have no clue. I have often had an extreme desire to return that metaphorical āslap in the mouthā with a physical one. Yes, I can push those limits further but there are always consequences for doing so and it often results in days of agony. It can also place strain on other parts of the body as we try to compensate for the painful parts.
It really can be such a fine balancing act and just when I think āHA, Iāve got this thing beatā it up and bashes me into submission again, reminding me āDonāt ever forget, Iām still hereā Grrrrr
If you ever get it all sorted and under control can you please tell me how, as Iāve said to others
Some days I could leap a tall building in a single bound
(OK, a bit of an exaggeration)
Other days I'm lucky to be able to crawl out of bed.
I just never know what today will bring. I just have to manage the 'Now'.
Merl from the Modsupport Team
Good advice Mel. I had another rheumy phone appointment last week and came away discouraged and angry. All he did was talk and talkā¦I finally had to rudely talk at the same time as him until he stopped for air and then got two words in trying to describe things. These specialists often seem to only know the āscienceā of blood work etc but just donāt get what a flare does in trashing a day, or week or longer. Since covid, I suspect that paid phone call āexamsā have only allowed the over booked specialists to increase their client load. He was rushed and didnāt hear me. But I have no where to turn and hence have to suck up to lousy treatment to bow to the great ego of the specialists. Oh well, there goes my Monday rant. Sorry. Yup, many things can put us in the dumps!
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So sorry to hear Amos, thatās a horrible experience. I think thereās nothing worse than being not listened to - particularly the minimisation of our symptoms that should be ringing alarm bells, but instead are being ignored. Often with this is a kind of unsaid implication that because the specialist thinks everything is ok, what we have going on must be in our headā¦.
Iāve been incredibly frustrated in the last week from something similar, and I didnāt realise why it was winding me up so much until you posted.
The specialist in question in my case called for a phone consult and it was clear he had read only the last sentence of the imaging report 
. The last sentence being positive -āat least this bit is no longer being damagedā. He couldnāt cope with pivoting on the spot to discuss the rest of the report (which was not pretty), so wouldnāt discuss it and just brushed it aside. Iām going to try to go back to my private specialist, but that does depend on the public system sending her the imaging, and Iām not sure what sort of reaction Iām going to get from that - I want to try to keep the public guys onside because if I ever need surgical or major medical intervention, I canāt afford to go privately.
Bowing to the egos is one of the least fun parts of being a āgoodā patient!
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I started to try and tell him what my wife was noticing in my condition and he interrupted with, āoh we donāt put any credibility in what spouses sayā. And his phone diagnostics is more accurate? Maybe he was having a bad day. He commented that the Rinvoq must be working because my blood work looks real goodā¦my blood work is exactly the same as it was two years ago before I went on biologics. My Inflammation markers have always been low, it has nothing to do with the Rinvoq. He also commented on how busy he was when I tried to explain new symptoms.
Hey Jen,
Technically, those images are yours and you can ask for copies of those images for your own records. You can ask your āprivateā specialist to request copies, but sometimes the individual drās relationship with the public system can impact the timely release of such info. Some providers can drag out requests for release, like they own them. But those images, that data is about you and you have every right to obtain your own personal data. Iāve requested digital copies of scans from both public and private providers and have CDās of all of my scans from over the years. Iāve required a few surgeries over the years and the differing scans show the progression of treatments.
I find this SO infuriating, but unfortunately Iāve also found itās very common. If we, as the patient, have questions, have concerns we should be able to discuss such matters with the consulting dr. But many drs take the attitude of āWell, Iām the dr and I know. You?, Youāre just the patient. You wouldnāt knowā¦ā and simply minimise our concerns, which only has the effect of increasing our stresses 10 fold. Personally, I find their attitude rather obtuse, our concerns are about our own health, not their egos and I have pushed back against such attitudes (P.S. They donāt like that), which is probably why I am not what youād call āa āgoodā patient!ā 
Merl from the Modsupport Team
Oh dear @Amos and @Jen75. I have zero tolerance for bad mannered doctors and I tell them that at every instance of any bad manners. As you know I attend a centre of excellence in the UK for PsA. And my rheumy is thoroughly excellent. Once I sort of got settled on meds quite naturally it was deemed appropriately to have me seen by someone else in the team. I had zero difficulty with that until after my appointment which was positively dreadful.More so because at that time, I was actually dreafully ill as sadly I wasnāt settled on meds at all, but had one fighting with the other which landed me in hospital several weeks later.
So I wrote an email to that consultantās secretary and explained in no uncertain terms how utterly ridiculous the appt had been, how as I patient Iām simply not interested in him displaying his ego and his consequent ridiculousness bordering on being misogynistic. (Sometimes itās quite useful being female). The email went on for 5 pages. Yes really. I literally tore strips off him his technique, his badly scrambled together conclusions which were wrong on the science of PsA just anyway. And how that left me feeling. I also explained I used to train consultants how to give evidence in court and he wouldnāt have even made it out of my own consultation room with that attitude. I got a complete and abject written apology. The next time I was in the waiting room he walked in and visibly blanched on seeing me. And of course Iāve never been seen by him again.
But I know others who have seen him since and heās been fine. So maybe he learnt a lesson.
So both of you, I would complain that neither telephone consultation measured up and why. And Iād list all my questions which were left unanswered and ask for them to be answered. @Amos if your rheumy doesnāt know yet that PsA tends to be seronegative, he needs serious reminding.If I were drafting your complaint letter, I would express it along these lines. āIt gets very tedious when you forget Iāve got PsA not RA and you start treatimg me like an RA patient whose condition will never fail to show up on blood test resultsā¦ā And @Jen75 I would list all my questions on the rest of the scan report and explain that itās a requirement of his professional registration that he addresses the rest of the report.
As patients we have chronic long term conditions that cause us immeasurable challenges on managing them. We can only manage them effectively if we have the whole of our medical attendantās attention on us at appts and anything else which requires their expertise. Their entire reason for being is to help us manage these conditions. So the appts are our appts not theirs. So I own the appt not them. As you know Iāve added Crohnās to my repetoire and presently my gastro guyās secretary is undergoing āmy trainingā. She told me to wait until she finished speaking the other day. So when she finally shut up, I explained had she listened she wouldnāt have needed to say all that at all and I could have saved her some considerable time. As I was well aware of what she was saying being a cogent and properly prepared patient. And that it simply wasnāt required that she talk down to me like that. As you can see I refuse to endure bad manners just ever. Conversely when people have stepped up and beyond, I make very sure to thank them and praise them too.
Sadly as a patient Iām not going anywhere as sadly Iām going to be patient requiring medical attention until the end of my days. With that in mind, I require good manners and good expertise from all of them, every single time.
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@Poo_therapy you are so very strong! It is exhausting dealing with all the illnesses then managing someone elseās bad manners for them like they are a little kid too.
@ModSupport yes, I have that too - my anxiety is ratcheted up 100 fold when they dismiss things, because Iām worried they are not really on top of it and are going to miss something that will have a big consequence.
In my case, Iām pretty convinced this guy does not actually have the expertise required to manage the condition (which is the heart one - super-rare), so Iām just going to go to someone I think does. If I actually get the same consultant next time (which seems unlikely as itās scheduled for October and they seem to like to change them around), then Iāll make the effort to explain to him how totally appalling the last consult was and what my expectations are for the next one.
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I think when I point out that itās āmy apptā not theirs, the penny drops faster. Because it doesnāt matter who is paying for the appt, you, your insurer or like here the NHS. They are in existence to serve your medical needs. Nothing more nor nothing less. And I suppose given my legal career to date Iāve seen far too many doctors mess up and frankly just get it wrong. So I never start off thinking they do know what theyāre talking about. In real terms itās for them to prove that to me, rather than for me to blithely accept their expertise. So I question everything, more so I can understand too. But I run fast over any arrogance and sloppiness too. I donāt do āpedestalsā so no one I encounter gets put on one. I find it grossly ridiculous weāve spent centuries putting doctors up on pedestals like they are some type of demi-god.
It is exhausting being ill, like we all are. But itās more exhausting feeling like no one has a handle on whatās wrong with you either. I cope better with the being ill part if I know my medical team are working their socks for me. So I suppose being on top of what is gross misconduct like both you and @Amos described helps me cope better. All ways.
I also choose my battles as wisely as I can. And Iām a good patient. I research, I help them, Iām compliant and I always but always attend the appt rarely changing them about or whatever. But I demand to be heard if things arenāt going to plan and Iām now more ill or things arenāt going well. And I wonāt tolerate a disinterested brush off. My quality of life is really important to me. I canāt do the āillnessā thing that others do with gay abandon. I remember being horrified the first time I had to spent virtually a whole day in my hospital getting blood tests, x-rays and whatever else. So I spent lots of time sitting around watching other patients. It was a day out for them, which just simply horrified me. They loved reeling off all the things that was wrong with them, They loved the attention. It validated them. I came home and cried my eyes out. There and then I promised myself I wouldnāt be one of those patients despite how clear it was I now have one helluva chronic illness. Six years on, I hope Iām still not one of those patients. Hence I hope Iāve remained strong. My only goal is ensure my doctors hone all of their medical expertise and intelligence so that I remain as well I can possibly be. Then itās a win win for both of us. Hugs @Jen75
Hey Jen,
If youāre not happy with the service you are receiving, then itās time for a change. It doesnāt matter why you are dissatisfied and although they may ask why, you do not have to disclose the a reason. You MUST feel comfortable and happy with the service and the Dr. For many of us stress only serves to exacerbate symptoms and stressing over the medicos, who are supposed to assist, defeats the whole purpose.
Prior to making any change Iād be recommending some investigations:
Which Drās have a āworking knowledgeā of PSA? Not just a book knowledge (We can ALL read a book)
Which Drās have experience with PSA specifically? Some may say āWe treat ALL auto-immune conditionsā¦ā but thatās too generic in my humble opinion.
What do other patients report? Some drās have the bedside manner of a house brick, very clinical. But then have a great knowledge. You have to decide which is more important to you. If you find a specialist with great knowledge and bedside mannerā¦GRAB A HOLD. They can be SUPER rare.
But if youāre not happy, thatās enough. Itās time for a change.
Merl from the Modsupport Team
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Yes Merl @ModSupport, I am really happy with the private consultant I selected - the main reason I ended up in the public system was that she thought it was complicated enough to get a second opinion, and consider heart biopsy (which is only done in the big city public facility). Whilst apparently literally no-one actually has experience in this disease in Queensland, she has the background from an international centre, and the skills to be able to extrapolate processes sheās seen in other diseases to this one. Sheās also wonderfully patient and very good at explaining things, assuming I have a brain and actually showing me the correlation between the imaging and report and implications of that. So sheās worth the risk of the guys in the public system having their ego dented because I asked for a second opinion. I honestly donāt think they could do much worse by me if they were trying anyway
Thanks for the hugs @Poo_therapy, most gratefully received!
Yes, as I was saying to my psychologist today, whilst it is a frustrating situation, I feel like Iām being listened to by both my gastroenterologist (who treats my PSA and my heart too ) and my GP. And now I have made arrangements to see the private consultant (who is actually a cardiologist) I feel confident Iāll be listened to there as well. So overall, I definitely feel like Iām headed in a winning direction.
In the last few months though, Iāve really been able to pinpoint what it is about doctors that makes them special - itās the ones that take responsibility for your recovery, for you personally. When you find one of them, donāt let go 
Very helpful dialogue from all of you! Maybe @Poo_therapy could come up with a generic peel paint letter that we can all use by just changing the names accordingly? 
I tend to lean in to conflict when pushed but with the state of our health care system, there is a fear of being dropped by a specialist and then the waiting list to start over is horrendous. While Covid has trashed many medical things, it seems to be used as an excuse for unprofessional conduct. Like many experienced medical professionals, my rheumy seems to be in a rutā¦same prescription, same answers to all problems, and if I disagree, he gets out of sorts. When my symptoms donāt fit his rut, I get blamed for not wearing the right shoes. They only want success stories and Iām only part way there. So which is betterā¦see as many patients as possible with a surface diagnosis and treatment or see less patients but with proper follow through?
My Psoriasis has been under control for over three years and other than itās original manifestation, has been mild. But he told me my flare up of systemic pain doesnāt make sense because my psoriasis should have flared at the same timeā¦which is terrible logic in my mind. So he concluded that I am making it up as he trusts what Rinvoq is SUPPOSED to do over what I am going through.
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Oh goodness, yea the old āwell this part of you is responding, so the other bit must be too!ā
Mine has almost NEVER worked that way. Itās more like whack-a-mole; no sooner than you suppress one issue, a new one pops up, often accompanied by some random old one.
I so hope some of it lessens for you soon.
Sounds like you need to start the hunt for a new rheumy now. Can you do that without old rheumy knowing? No oneās psoriasis also always flares when your joints do. Just no oneās - that not what happens. So heās talking out of his hat, silly man! I had severe psoriasis as a teenager. It fled in my 30ās because I badly fractured my shoulder. I got PsA when I was 54, badly. My psoraisis has never come back, not even during the most hellish times of intense disease activity.
Now if I was in your situation, Iād say thatās interesting - please show me in the research where that happens, because all my research indicates that is not right. Maybe youād like to review that statement? And when youāve done that - please then can we have a coherent conversation about whether Rinvoq is medicating me optimally for my level of disease activity please?
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Hey Jen
Thatās fantastic, having confidence in your medical team can really help. You say āwhich is the heart oneā I wonder if having a conversation with someone like the Heart Foundation, who would have their own network of specialists and specific support services might also be an avenue of assistance. Itās my view that thereās no such thing as having too much information
Well, you must be thenā¦ (JOKE)
The line one of the neuroās gave me was 'Well, MY treatments have worked for others, so itās not the treatmentā¦ It must just be YOU thatās the problem". Patient blaming is always the final answer.
Ohh, that is a very polite English way to put it . Iām in Australia and weād (OK, Iād) likely be much more direct and use more ācolourfulā language 
Now, please, donāt get me wrong here, my ādirectnessā has come after many years of going āYes Dr, whatever you say Drā¦ā only to be repeatedly misdiagnosed, misdirected and mistreated. I donāt play those āYes Drā games anymore. I am direct, very direct and some drās donāt like that, but this is my health, it is not a game. āDonāt be playing games with me, 'cos I donāt play nice.ā
Merl from the Modsupport Team
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Youāve made me laugh. Iām Irish - my language is probably too colourful however if I expressed it like I thought it, the mods including you would probably have to ban me!!! 
Talking out of his hat was the best translation of what I was thinking but at the other end of his body plus some.
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I would not want to come across you in court. Not that i wasnāt already impressed, but wow!
@Seenie I feel like @Poo_therapy could help us with an article on self advocacy. Weāve all faced this type of behavior at some point, and itās a real challenge
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I second that motion, Stoney!
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