Quick Sanity Check...Am I Missing Something... - LUPUS UK

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Quick Sanity Check...Am I Missing Something...

Foggyme profile image

Hi All

During a recent rheumatology consultation, I was told (not in a nice way) that Azathioprine is not an immunosuppressant drug.

Says it is on the Patient Information Leaflet...and multiple elsewhere's too.

Now doubting what I'm reading and my own sanity too...anybody know if I'm missing something?

Are there any ways in which azothioprine can be said not to be an immunosuppressant drug?

Incidentally, when I also stated that I was using ciclosporine (Ikervis) eye drops, I was told that ciclosporine is not used for eyes! The implication being...

Still de-looping from that appointment...have to say not good (probably one of the worst because my expectations were high).

Will do an update post when I can think about it without wanting to burst.

👍

65 Replies

Foggy, your sanity is intact. Azothiorprine is an immunosurpressant, as you say, multiple hits on Google state that is so. I wonder if there could be medical conditions where the label immunosurpressent does not fit.

Foggyme profile image
Foggyme in reply to LupusKaren

Hi LupusKaren. Phew...so not (entirely) mad then.

Azathioprine was originally prescribed for UCTD...so, prescribed for it's immunosuppressive functions. So to hear a consultant rheumatologist categorically state that it's not an immunosuppressant drug was disconcerting, to say the least. Did he really not know? Or worse, is this gaslighting ('cause that’s what the whole appointment felt like)?

Good point about other medical conditions. However, I really struggle with the notion that a drug that has immunosuppressive functions can lose those functions simply because it's prescribed (off label or otherwise) for another medical condition. So hmm.

Really appreciate your reply...reduces the amount of times have have to pinch myself (in 'did this really happen' mode).

Hugs x

LupusKaren profile image
LupusKaren in reply to Foggyme

Foggy, I am so sorry that you had such a unsatisfactory appointment, I cannot tell you how much that word 'gaslighting' has figured in my world this week in conversations, having experienced this myself, by several disciplines in Dec/Jan, I know how soul destroying it is, and these consultants simply do not understand, nor comprehend the damage they do to us. It makes me livid.

But as your consultant clearly has such poor knowledge on drugs, I wouldn't trust them to look after my Lupus period.

Scratch it off to experience, frustrating as it is Foggy, and find a new consultant who knows their stuff. Are you in the UK, if so, you can choose and book, via GP where you would like to go, happy to PM you the details of my Rheumatologist.

Foggyme profile image
Foggyme in reply to LupusKaren

Yes...it makes me livid too LupusKaren. Gaslighting as a form of medical abuse happens so often and across so many disciplines. And like all forms of abuse, it's so very often 'hidden in plain sight'. Really sorry that it's happening to you too (and that's an understatement).

Yes, I'm in the UK...and will now be looking for a new rheumatologist - for the third time (my GP will not be happy). So yes please, if you could PM details about your rheumy that would be great. Happy to travel almost anywhere (though out of area care may be an issue so will,have to get my head around how that'll work).

Hope you’re past the 'livid' stage after your recent appointment horrors...though on what planet is it ever right for us to be made to feel like that. By the caring profession.

Thank your for your support and lovely word. Really means a lot 🙂

KayHimm profile image
KayHimm in reply to Foggyme

Hi Foggy — I am perplexed by this statement about the azathioprine. Did he say what category of drugs it falls under? If you can find an article entitled “Immunosuppressive and anti-inflammatory properties of Cyclophosphamide, Azathioprine and Methotrexate” it may provide a clue as to what he was talking about it. The mechanism of action of these drugs is not fully understood and may be different depending on the dose. The doctor should have explained to you why the Azathioprine was not an immunosuppressant and why he did not want to replace it with something else. He may not be the right doctor for you — you need to have a rapport — but I would not worry he does not understand his medications, particularly these that are commonly used in rheumatic illnesses.

Foggyme profile image
Foggyme in reply to KayHimm

No KayHimm. He didn't say what he thought...just backed up my original rheumatologist and said no reason to change meds because bloods were okay.

I was so stunned that I couldn’t think of a what to ask him (always thought AZO was an immunosuppressant).

In context, it was said when I tried to explain that I thought I may be hypersensitive to the immunosuppressant I was taking (Azo) and was there something else I could try instead (his comment - 'Azothioprine is not an immunosuppressant'j...

Lots of other things went wrong is this appointment (wouldn't look at medical history, symptoms to check disgnosis, symptoms I have now and newly developed symptoms, blood in urine since Christmas, continued decline in health (including the SNF diagnosed by neuro)...really dismissive throughout. Basically, he'd only read previous rheumy letters (largely incomplete and inaccurate and made his mind up before he even met me!

In short...will only treat on blood test results and if Azo is not 'suiting' me...reduce or just stop taking (leaving me with nothing at all but 5mg steroids daily....and everything flaring up again).

Really frustrating because you can't capture the dismissive tone and non-verbal stuff that clearly shows that they’re not going to help you.

Don't know how it is in the USA but unless you get a good one, NHS doctors will rarely challange what another one says! Getting an independent second opinion will be a tough call - that is, unless or until I can find the right rheumatologist.

And yes, you’re right...this is not the right doctor for me 🤷‍♀️😐.

Will track down the article and read...thanks KayHimm 👍

KayHimm profile image
KayHimm in reply to Foggyme

It sounds to me like, even if he made the right medical decisions, he did not explain his reasoning to you. The neurologist told you about the neuropathy. You want to know if there is treatment for it. I suspect there is not and that is why he didn’t add anything. The nerve stuff is not easy to treat. My doctors explain to me that they are weighing out the risk/benefit and why they are reluctant to prescribe things. I really think you deserve to know that decisions are well-thought out. Would you consider writing down your concerns and expectations before your next consultation and posting it here? Others may disagree, but you might want to go alone. After all, with a chronic illness, it is your relationship with the doctor that is most important. It could be sort of distancing to have your husband there. I would not say that when major decisions are being made about cancer treatment, as an example. But this doctor may have have viewed your husband’s presence as slightly adversarial. Hard to know. Maybe there are people here who can recommend a rheumatologist with a much better bedside manner. K

Foggyme profile image
Foggyme in reply to KayHimm

Hear what you're saying KayHimm. So, to clarify...

I did write down concerns, expectations and question prior to the appointment (very concise, not a lot to read). Placed it on his desk and did'nt even read it. Didn't even get to ask the question I wanted to ask. Handed back unread at the end of the consultation. Told him that was his copy and please could he put it in my medical notes (in the vain hope that someone would read it).

About the neurological symptoms. Yes, get that they're very difficult to treat. However, it wasn’t just about that (blood in straw colour urine, pain in kidney region, itching skin, breathlessness on exertion, red hot swollen knuckles with skin split and bleeding, painful bones in feet causing difficulty in walking, rashes and bruising... so, neurolgical issues aside, don't feel that my AI condition is well controlled...nor ever has been. Nobody in their right mind wishes to take powerful drugs. I'm just looking for someone (anyone) who is prepared to treat the whole me, aim for better symptom relief and most importantly, try to help me improve the quality of my life. (It's currently zero. It's a good day if I manage to shower and take a couple of short (getting shorter) walks.

As to him viewing my husband presence as adversarial...hmm 🤔.

I have to take him in to make sure I keep on track and don’t forget things (I often cease up). And despite trying to note things down, I often miss things...so he's my aide memoir. Plus...and this is a shocking thing to have to say...in the UK patient’s often get treated with more respect and doctors tend to be more attentive if there's a 'witness' present. (Not that that was the case here). And no, it shoudn't be like that. But it so often is. For far to many people. Unless you manage to find thwt increasing rare gem...a 'good' doctor. And yes, they do exist - I want to leap and shout for joy when I read here of someone who is getting good care - but for far too few people.

But it's an interesting point of view...may put up a post and see what others think 😉.

KayHimm, I'm an ex-nursing professional and I have to say that what happened in that consulting room had nothing whatsoever to do with poor communication or lack of bedside manner. I really don't care about bedside manner...what I'm looking for (like everyone here) is good doctoring skills...and these are not evidenced when doctors simply choose to rely on blood tests. Many here have that experience and it's really not good enough. Anyone with an aytipical presentation (not being able to 'get the right bloods') does not fare well in the UK medical system. Really hope that it's better in the USA 😉.

Having a good relationship with a doctor...oh what a joy that would be! In my defence, I feel bound to say that I don't have problems with any other relationships (though I am so often forced to ask myself, where doctors are concerned, 'what am I doing wrong...is this my fault').

Anyway...sorry if it sounds like I'm having a rant at you...yes, having a rant...but not at you personally. Just totally frustrated with the whole medical system in the UK. Where the chronically ill are concerned, it's not fit for purpose (in any shape or form).

So...searching, once again, for another rheumy...and will keep on until I find one of those rare ones who treat the whole person and don't just focus on blood results ('cause we all know how tricky they can be where AI disease is concerned).

Onwards and upwards 😉😀.

KayHimm profile image
KayHimm in reply to Foggyme

I think what is going on is that you have life-altering symptoms that they either cannot treat successfully or where the risks are too high. If your doctors could be honest, they may acknowledge that your symptoms are terrible but that they do not have a solution. I have been in the same place in my younger years, but my rheumatologist is more empathic and explained how hard it is to treat the fatigue, muscle ache and other symptoms that makes it hard to work or enjoy life. I don’t know if this will be helpful to you but he said people like us are the most difficult to treat. Lupus kidney disease, he said, it is clear, cook book. But with so many other non life-threatening symptoms, they do not want to give us a new disease with the medications. You sound very debilitated. Maybe you could just address that one issue in your next consultation. Many doctors do not review the chart thoroughly until after seeing the patient. So many of the other issues may get reviewed. I would maybe just plainly state what you are able to do and what you cannot do — clear functionality. Then ask if there are any medications that would help or an increase in steroids. Would a biopsy help to confirm small fibre neuropathy? Would that change the treatment? I just don’t hear that anyone is really being clear and honest with you. When I said “bedside manner” I was referring to his total attitude. Message me if you want to hear how my doctor explained the UCTD diagnosis even though I meet lupus criteria. It may apply to you. Hope I don’t sound unsympathetic — been very frustrated myself over the years — but just trying to help you to get the most out of visits with pompous doctors. Hope you find a good one soon.

Foggyme profile image
Foggyme in reply to KayHimm

Yes...I've asked those questions KayHimm (medications etc.).

It's not just the case that nobody's been clear or honest (oh if it were only that simple). We AI people travel around multiple 'ologies', rarely see the same person twice, nobody takes responsibility or does joined up thinking. And they rarely communicate with each other (except in largely incomplete and often in in accurate letters.

I say all the things you suggest...but it falls on deaf ears...I usually get a 'we'll see how it goes' and think about it next time (next time usually being six months hence...if you’re lucky).

I doubt the kind of review you speak of takes place...doctors are so pressed for time they simply move on.

And once any appointment is swiftly over...it's a six to nine month wait for another one (it took my rheumatologist one year to arrange a steroid injection for my frozen shoulder).

Yes...I've been waiting for a biopsy since December...and nothing in sight yet. Neurology is 'backed-up' so it's not going to be quick (had to wait five months for my initial appointment - and it would have been nine had I not complained to the service manager when that appointment was changed and put back for another four months). The neurologist expects the biopsy to be positive and has been clear about this in her letter to rheumy. Interesting to note that they are doing the biopsy purely so I'll have evidence 'for others'!

And no, you don't sound unsympathetic...all the things you say are sensible and valuable - and linked to the idea of best practice. But here's the rub...they just don't map easily onto the NHS set-up (though they certainly should). I just can't tell you - and it will probably be impossible for you to image - just how bad the NHS is when it's bad (the hospital in my area is listed as 'failing').

So hmmm...🤷‍♀️🤦‍♀️😀😀

KayHimm profile image
KayHimm in reply to Foggyme

These are the horror stories they cite here in the U.S. to warn us about the perils of single-payer health care. It really is a different world. We have waits for non-urgent things but nothing — and I mean nothing — like what you experience. I can get in to see my rheumatologist the same week. He called me back at 8:00 p.m. the other night. For the most part, doctors here seem to just get on the phone and talk. That is what you need — brain-storming — by the various specialists. I can see how the sluggish system and bureaucracy complicates things over there. We have our problems here too. But when you can access it, it is supposedly the best in the world. Would your NHS coverage work over here? I will take you by the hand to a great team of very sympathetic doctors in NYC! I really feel for you. That neuropathy must be awful. Hoping when you finally get that biopsy that they will start some treatment.

Foggyme profile image
Foggyme in reply to KayHimm

All UK 'bods' here would weep with joy at the thought of being able to see a rheumatologist within a week 😳.

And a phone call...only for the rare 'lucky' few, I think.

Would NHS cover work in the USA...not a chance 😢.

But if I ever have an unexpected windfall...I'd be more than happy to be taken by the hand to a great team of very sympathetic in NYC. I'd be ecstatic.

Much could be interestingly debated about our two different healthcare systems...both have advantages and drawbacks...shame we can't take the best of both and come up with a much improved hybrid system. What a fun exercise that would be 😃😃

KayHimm profile image
KayHimm in reply to Foggyme

Very true! We would probably do better than the American think tanks that can’t come up with a solution. Americans with chronic illnesses live in utter fear of losing their health care coverage. It is heart-breaking.

Foggyme profile image
Foggyme in reply to KayHimm

Indeed. Can't argue with thwt KayHimm (nor would I want too). 😐

JGBH profile image
JGBH in reply to Foggyme

Foggy, I totally agree with you regarding the UK medical professionals who are absolutely useless when dealing with patients who have AI diseases. It appears they have not got the education to deal with such chronic and complex diseases and they do not show the willingness to learn, to change their ways. It probably would be too much of an inconvenience to them. I have no or little respect for such people, as you know!

So very sorry you're still feeling so ill and down... So many of us feel the same, it's a vicious circle of hope when we see another consultant... there is some kind of hope then it all dashed in the first few minutes, if that, of the consultation. It also seem they do NOT want to listen to what the patient is saying to them, it's clearly an inconvenience to them because if they really listened and cared they would have to work much harder in order to help the patient. It leaves one feeling totally uncared for and that no one wants to help. Frustrating and depressing in equal measures. One feels so lost... Thinking of you. Keep fighting. xx

Foggyme profile image
Foggyme in reply to JGBH

Thank you JGBH. And yes, I will keep fighting.

So sorry that you’re one of the lost too.

Think this is the only time in my life I've ever wished for money...then you could see whoever you liked whenever you liked...keep going until the right doctor appears...get tests done quickly (oh the interminable waiting)...and then just pay for whatever needed.

And here's another thought...if someone had told me years ago that treatment was to be agreed on a cost benefit basis and that all funding had to be applied for on an individual basis...I never would have believed them.

NICE and NHS England are the worst things that ever happened to the NHS. Closely followed by Clinical Commissioning Groups... and where on Earth did thwt rant pop in from (I think I must be grouchy today). 🙄😉😀😀.

Take care x

JGBH profile image
JGBH in reply to Foggyme

Just have had more than enough... your "rant" is totally acceptable. Yes a money tree in the back garden would help in finding the best of course... but.

Indeed NICE and Co and the dreadful CCGs have destroyed the NHS. CCGs will offer money to surgeries who refrain from referring patients to consultants. Totally corrupt and nothing to do with the "Do no harm" motto doctors will often refer to when they don't want to prescribe certain drugs to patients, stating it would be too dangerous as in the case of B12 injections. It's scandalous! See I keep on ranting too and I feel quite justified as you should too. Take care x

Having been on azathioprine for last 8 years I assure you it is an immunosuppressive drug.

Shocking to be told otherwise by a doctor/ 'expert'. Why is everything such a fight for us???

Foggyme profile image
Foggyme in reply to whiteyswifey

Oh thank you whiteyswifey. Shocking...yes indeed. And I was...shocked, that is.

And you're right...everything is such a fight. For far to many of us from what I see here. I'm just so tired of continually having to battle doctors...four years on and still zero quality of life.

From where I sit now, back to square one and will be looking for another rheumatologist. Not going to give up - I owe it to myself and those around me to be get as well as I can.

I just wish 'they' could try and live my life in my body for one day.

Thank you for confirming that I'm not mad 😉😀.

whiteyswifey profile image
whiteyswifey in reply to Foggyme

If only we were able to swap places for just one day. We would definitely be taken seriously then.

Never give up fighting. Good luck x

Foggyme profile image
Foggyme in reply to whiteyswifey

Thanks whiteyswifey. I won't. Just need to take a few days to get back in balance and then onwards...😉

< deletes bad words > Are you able to change your rheumy? If you have an idiot that doesn't know the effects of the drug, that same idiot will struggle to monitor it ! xxx

PS happy to help with a letter of complaint!

Foggyme profile image
Foggyme in reply to eekt

Are these the words you deleted eekt ****** *******, ****, and more of the same (and I don't do bad words).

About monitoring...I suspect that I'm hypersensitive to Azathioprine (one of the things I went to discuss) and the response was just cut it down to tolerable levels or stop it. However, was absolutely adamant that he wouldn’t prescribe anything else...which would leave me on 5mg steroids daily and nothing else. And worse now then when I started treatment.

The whole appointment was so astonishingly bad. When we left the consulting room I looked st my husband (mild mannered, astute and well-balanced) to see what he thought before I infected him with my comments...and he said 'Stonewalling. I knew within 20 seconds it would be a waste of time. He'd made his mind up before he even set eyes on you. (He'd read my current rheumy's letters - largely incomplete and often inacccurate - and refused to look at information I took relating to medical history, symptoms, whether I had the correct diagnosis (think I meet the Lupus diagnostic criteria) etc. etc.

Sadly, this happened at my first appointment at the Lupus Centre of Excellence in Birmingham (asked for referral there because of appalling hostile treatment from my current rheumatologist). Which makes it even harder to bear as I was (perhaps naively) expecting better.

And yes...I think I do need to complain, not least because it's the only way I can get transferred to another rheumatologist. But at the moment, I have post appointment PTSD (worst ever) and a mushy head, to boot. So, any tips you could offer (via message) would be most gratefully received. But only if it doesn't use too many of your spoons

Lupus UK did try to progress this for me but the response from the hospital was that this was down to 'poor communication' and that the said consultant would make an effort to ensure that next time, I had a clearer understanding of what was happening 🤬🤬. So, they're trying to help but will have to get back to them about this. Though in reality, not quite sure what they can do.

So eekt...your bad words have given me a real boost. Thank you 🙃

LupusKaren profile image
LupusKaren in reply to Foggyme

Foggy, I absolutely understand your PSTD comment, and you have my full empathy on it, I have no useful tips, other than for me, on principle I cannot allow this to escalate, it is very hard, as you are on tenterhooks, for every appt we attend, fearful of yet another bad experience. I have to dig deep and I will openly challenge any bad appt now, if no eye contact, I ask if they would like to leave the appt and find me someone who will actually look at me, or if the subject of my past mental health issues come up, I terminate that line, as this is another favourite way to get you out the door, it is all your head.

I am only just about coming around from a very traumatic time, the trust I had built up over a few years, was wiped out in seconds, and transported me back to a place I never wanted to be again.

Your not alone in this, sadly.

Foggyme profile image
Foggyme in reply to LupusKaren

LupusKaren. I so wish I could give you a hug.

There just aren't words to describe the emotions and harm we suffer when treated so badly (abused) by the medical profession. Not to mention the feeling of abject horror and disgust that this so-called 'treatment' is allowed to occur.

I must admit that after the appointment was over, I did wish that I could have summoned the courage to walk out (within the first few minutes).

I'm going to take a leaf out of your 'dig-deep' book and next time anything like this happens, I'll challange (politely) and if that doesn't work thank them kindly - and walk out.

There's something deeply amiss in the way healthcare is being delivered if we have to fear going to hospital appointments...as we both do. And that makes me disgusted, angry, and sad - in equal furious measure.

Again, I'm so sorry that you've suffered such trauma and applaud the fact that you’re determined to beat it (I suppose 'cause you have no choice and you can't beat them 😐). (Not advocating violence (I think), in case anyone asks 🙄).

Hope you’re getting further and further away from the place you 'never wanted to be again'...and I'm sending everything warm and squishy your way, together with loads of virtual hugs. xx

LupusKaren profile image
LupusKaren in reply to Foggyme

And I would love to give you a huge hug too Foggy, thank you so much for your truly wonderful response.

I do agree with you that something has gone so very wrong with healthcare in this Country, and I am so very upset and deeply concerned at your experience at a Centre of Excellence, I can only imagine how devastated you were/are.

I have never ever been rude, blunt yes, but always with a little smile, praying like mad they cannot see the tears brimming behind my dark glasses.

I hope you can find the strength to carry on fighting Foggy, I know how easy it is to want to chuck in the towel, but in my case, I knew something was very wrong, as did my outstanding GP, and my rock, my husband.

I felt relief and vindication in equal measure when I got my diagnosis, in fact my Consultant had already got Lupus on her mind as my problem before she even saw me, based on recent bloods and other things going on. I want you to have this, truly.

eekt profile image
eekt in reply to Foggyme

Foggy, if you want to flush it out your system quickly with a swift complaint (and avoid flashbacks etc), copy it to the good doctor's GMC Responsible Officer, that's the one that does the annual revalidation to practice.

You'll find your doctor here (though going by what you've written, who knows... ?!?):

gmc-uk.org/registration-and...

and then click on Revalidation Information.

My rheumy wear brown trousers since I did that to my ex-GP! :) xxx

Foggyme profile image
Foggyme in reply to eekt

Oh love it eekt ...you are just wicked (in the very best of senses 🤣).

Just wondering if I dare...will certainly take a look...😀.

eekt profile image
eekt in reply to Foggyme

I had an audience with the revalidation officer out of it - the medical director of the local hospital 🤗 , line manager to my rheumy - and very supportive he was too...went off afterwards to have a word in my ex-GP's ear! 🤩 ...got to have some fun in life 😎 xxx

Foggyme profile image
Foggyme in reply to eekt

Well done you...and fun...what a bonus 🤗🤗🤗

Fennella02 profile image
Fennella02 in reply to Foggyme

Who did you see in B’ham? I saw a different doctor at each appointment and one of them wrote an appallingly inaccurate letter, 3 pages long in tiny font and actually contradicted her own observations in places. The professor, however, did concur with my diagnosis thankfully. I dread seeing another rheumy ever for fear of being ‘undiagnosed’ based on my unrevealing blood tests.

Azathioprine not an immunosuppressant? Staggeringly awful. Whatever it’s mode of action, it interferes with something or other that has a knock on effect on the production of WBC’s therefore your immune system is suppressed!! DOH! I think you should write to him and challenge the things that you don’t agree with and ask for clarity on those things that don’t make sense. Don’t email like I did on 2 occasions or it doesn’t go on your file and is kept nicely private in their personal inboxes unless you send it to the rheumy secretary/dept. I did email Professor Gordon’s secretary who forwarded my grumble to the relevant junior doctor but nothing happened so I think a good old fashioned paper letter that is scanned onto your file is best. Cc PALs perhaps? And your GP? How frustrating for you xx

Foggyme profile image
Foggyme in reply to Fennella02

Oh Clare 67. So disappointed to hear what you say...and from a Centre of Excellence to! Got to raise the question 'what chance any of us'...if this kind of treatment (or non-treatment) can occur there.

Good tip about paper letters...and I'll also ask for these to be attached to my medical records (if I go back there again).

Will PM you details of who I saw...be interesting to know if you’ve encountered this person...and what your experience was.

Wonder if any of these people stop to think about the impact they’ve having on us...and the amount of precious energy we have to spend chasing things up and protesting about poor treatment or care.

Very bad. Very sorry. xx

Fennella02 profile image
Fennella02 in reply to Foggyme

Have PM’d back xx

Thank you Louise-a. Have to admit that when he came out with that little gem I was stunned into absolute and shocked silence. It's very difficult to challange something like that instantly. Because they're doctors. You expect them to know. And you sit wondering if they know something that you don't that would make that statement valid.

Still pinching myself in disbelief. I really can't go back to see that person ☹️.

Think it is your doc who needs a reality check!!! Aza is a cytotoxic immunosuppressant drug.

Think there is a clear message there: beat a hasty retreat from his door and if there is a mechanism to do so: make a complaint.

Foggyme profile image
Foggyme in reply to PMRpro

Thanks PMRpro. That's what I always thought. How on earth can a consultant rheumatologist say anything different. Beggars belief!

Yep...complaint will be going in...not that I hold out any hope that it will make a difference, given the way the NHS closes ranks to protect it's own.

Nevertheless, complain I will.

I'm used to bad but this was so astonishingly bad it was truly shocking. Four days post appointment and my mild mannered, rational and very calm husband is still saying he wants to shout and rage (if only there was someone to shout and rage at). We've been married for thirty-five years and I've only ever seen him lose his temper once!

Can't tell you how good it is to have you lovely folk help me regain my somewhat shredded sanity. 😐😀😀

Sounds like your rheumy is insane..n u are understandably MAD!!! 😲😤🤪😵😡😠Xx

Foggyme profile image
Foggyme in reply to Krazykat26

Think you may be talking about my ex-rheumy Krazykat12 🤨😬😉🤬.

Appears to have lasted for about thirty minutes - wonder if that's a record? 🙄🤔🤷‍♀️

Mad - I'm seething, furious, disgusted, disappointed, belittled, devastated...but more than that, I'm ashamed of myself because I didn't deal with it better (going to take a leaf out of LupusKaren's book 😉).

LupusKaren profile image
LupusKaren in reply to Foggyme

Oh no Foggy you have nothing to be ashamed of, not at all, and it is not easy to make a stand, so many suffer from white coat syndrome, including me, but I know my body, and my taxes contribute to their wages, if they don't want to be in the job, which is supposed to be a caring role to a point, then leave, and take any ego you have with you. I know now the minute I walk in more or less how appts will go, if they sit at the desk without a nod of recognition, clipped tone, or worse arrogantly talk to you like your not in the room, then we are done usually.

Your not the problem Foggy, you have to believe this.

Foggyme profile image
Foggyme in reply to LupusKaren

Thanks LupusKaren...going to hold that thought....🙂

Krazykat26 profile image
Krazykat26 in reply to Foggyme

Never be ashamed Foggy..bless ya heart..this has wound u n your hubby up n really u cannot afford to stress yourselves out..we all know the consequences of that!! Stay strong n know that the force is with u 🏏..that's about the best emoji I can find for that laser thingy they use in star wars!! 😽Xx

Foggyme profile image
Foggyme in reply to Krazykat26

So...dig deep from LupusKaren and a 'laser force thingy' from you...armed to the teeth Star Wars style...staying strong and staying alive with a little help from my friends 🏏🏋️‍♂️🕺🗽😀😀😂😂🤣🤣 x

Don't know if I can see anyone else but certainly going to find out.

A mad moment - grief, as you say, basic stuff - how could he possibly make that statement - mad moment or not 🤔🤷‍♀️🤦‍♀️.

If I can't see someone else there, will find someone else, elsewhere 😉😀.

Yeah he's my daughter's cat but he's bigger than my Jack Russel n looks like a lion ginger Tom..so one Xmas she put a mane on him..took a pic .sent it to me..his name is maximus..max for short..he's huge!! Xx

Yep....sometimes I get so wrapped up in (and wound up by) all this that I lose sight of how much this impacts on him too. This one really hit him hard. Think I need to remember to give him a little TLC (now and again 😉).

And, yes, Foggy, it is much easier to get referred to another specialist in the U.S. In fact, depending on your insurance, you can refer yourself! It makes sense that the NHS doctors may see themselves as on the same team. Our doctors are affiliated with various hospitals and would not hesitate to challenge others’ positions if necessary. You are in a tougher position.

It is an immune suppressant. 100%. If it wasn't why on earth would they monitor your immune system with blood tests if not?

All DMARDs are essentially a form of chemotherapy (mild) and are in tablet or injectable form to suppress the immune system. Your sanity is intact. You are sane. Must have been pretty confusing to hear that from a medic! Worries me!

Foggyme profile image
Foggyme in reply to happytulip

Yep...confusing indeed happytulip.

And worrying...yes...how on earth can I entrust my medical care to a consultant who can make such a nonsensical statement!

Still pinching myself in disbelief 🤔😳😳.

If this is aimed at me (which is what HU claims) I didn't say azO, I said azA - a commonly used abbreviation for azathioprine. Someone else called it azothioprine.

Foggyme profile image
Foggyme in reply to PMRpro

Hi PMRpro...think it was aimed at me, since I did spell Azathioprine incorrectly (Azothioprine) and have been back and edited.

No excuse for bad spelling (other than the fact that I usually swallow it rather than read or spell it). 😐😉😀.

Won't be making that mistake again...🙄😃😃

PMRpro profile image
PMRpro in reply to Foggyme

No problem - but it is an example of something I have asked HU about - wrong assignment of posts, I've noticed quite a few. They appeared to totally not understand my point!!!!!! I was concerned that if I am being told there is a response to me - the person it was really to may not be told and miss it.

Foggyme profile image
Foggyme in reply to PMRpro

Yep...that's happening to me too. Also noticing that it's really difficult keeping track of replies with the (relatively) new layout (instead of appearing directly under the 'thing' you’re replying to, the responses often appear way down the page - quite difficult when it's a long string of replies).

Not to mention the fact the mail notifications often take me to the top of the post rather than to the actual response that I'm notified about. And Imoften don't get notified...so no idea that someone’s potential waiting for a reply from me!

All reported to HU...quite a few times 🤔

Sigh...not easy for the foggy of brain...🤷‍♀️🤦‍♀️😐

PMRpro profile image
PMRpro in reply to Foggyme

Thanks - not me being insane either then!!!!!

Foggyme profile image
Foggyme in reply to PMRpro

Certainly not PMRpro...at least not where this is concerned 😉😀🤣🤣🤣🤣...

I wonder if he’s decided you said a different drug which is no better as it shows he’s not listening to you at all.

I had this with the receptionist at my doctors last time I tried to sort a depomedrone injection. I left a message saying exactly what I needed. My lupus team contacted them to say exactly what I needed. He rang me back after taking 24 hours to check whether the GP could do the injection despite both the lupus team and myself telling him to just pass the message on to the doctor so they could plan an emergency appointment for it as all appointments were gone. Then he told me they couldnt give that injection anymore as the PCC wouldn’t let them. My lupus team rang the practice manager going nuts about why wouldn’t they do the injection. Idiot receptionist man told them I’d asked for a methotrexate injection ... umm no you looked at my normal prescriptions and decided I was asking for a methotrexate injection.

When I went in he was quite rude and adamant that I’d asked for metoject. I quite politely (through gritted teeth) advised that I know I asked for a depo injection as I already take metoject and am very well educated on my medications and even were that true if they had actually looked at my notes or passed the message to the GP as instructed they’d have seen that there is a dispensation from the PCC that allows them to continue prescribing me with metoject as a stand alone case so he was wrong whichever way he looked at it. As he’s not a doctor maybe the gp would have been better placed to deal with the query had he passed it on as requested rather than leaving me in severe pain for an extra 2 days.

The most annoying part is that when you get an idiot like yours does he really think that you just accept what you're told and have no knowledge of your health or the meds you take???!! You probably know more about your own health than he’ll ever know. Arrogance at its best. Geez

Foggyme profile image
Foggyme in reply to Mifford

No idea what he decided but he definitely said the words 'Azathioprine's not an immunosuppressant drug'. So whatever he heard, he said it right. And was so wrong, Unbelievable.

Doctors receptionist can sometimes be brilliant...but when they get it wrong it can be spectacularly wrong. And I strongly suspect that they’re now asked to do tasks that they’ not trained to do (my pet hate - giving blood results over the phone and saying they’re 'normal' when they're not).

Disgraceful that you were left in pain for an extra two days 🤬.

I think some doctors don’t think. They just doctor on in their God-given way and expect us wee small people to fall in behind (tugging a forelock as we fall).

Sorry you has such a bad time...hope they've got it worked out now.

Mifford profile image
Mifford in reply to Foggyme

Funnily enough I had to get an injection this morning .. I bypassed the lot and just made a doctors appointment and told him why when I got there. Worked much better.

I would certainly ask to be seen by a different doctor if I were you. I’d even make sure I told the gp why and explain that even if it were accidental or confusion you have lost faith in that rheumy’s ability to properly treat you and as this is a lifelong condition requiring a good relationship between the consultant and the patient to be able to treat you as a whole you don’t think that he's the right one for you. I’m sure your gp will understand and be happy to send you elsewhere in future.

Good luck x

Foggyme profile image
Foggyme in reply to Mifford

Yes...I agree Mifford. No basis for a trusting long-term relationship. Just going to keep searching until I get that.

Pleased you got your injection without any hassle 💉😀😀

On a lighter note I have just remembered a similarly arrogant twonk I saw when I was misdiagnosed with pcos. He was a junior doctor and had an unbelievably superior attitude.

He sat and told me that, among other stupid statements, he didn’t believe in pms. I couldn’t stop myself from replying “really? and when exactly was your last period” ... followed 2 seconds later by hearing the main consultant burst into laughter in the corridor as he had heard the exchange as he walked past. It still makes me laugh how red faced and flustered he got trying to come up with an answer but hopefully he never did it again 😂😂

KayHimm profile image
KayHimm in reply to Mifford

Touché! That takes the cake.

Foggyme profile image
Foggyme in reply to Mifford

Love it Mifford...well done you 👏👏👏🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣

Hello Philippo,

Poor you having to cope with so many debilitating, scary and frustrating health issues, as so many of us with multiple complex AI diseases only know too well.

Indeed, one wonders what exactly GPs and even consultants are being taught at medical school. I have the feeling nothing changes very much in their curriculum from year to year. They rehash the same old things years in years out, without taking into account the evolution of diseases. Furthermore, they all work in their little-restricted corner/specialism - in the case of consultants - and do not seem to make a connection with other specialisms... and they do not communicate with each other. It's a wonder how patients survive with just a disjointed approach, and it explains, perhaps, why patients always feel so ill because the patients are not viewed as a whole, just "bits here, bits there, etc...). Admittedly, the evolution of diseases is increasing fast and it can't be easy to keep up with the latest trends and required approaches, but a concerted effort would not go amiss.

Unlike you, I do not have lupus (well, I hope not) but have had rheumatoid arthritis since my late 30s (72 now) as well as Sjogren's syndrome, Raynaud's, had papillary adenocarcinoma and nearly all my thyroid gland was removed (in 1980) and have been on Levothyroid ever since. I was never referred to an endocrinologist, it was surgeon of general surgery who operated. Not one single doctor even told me there was an alternative to T4... am very ill now and refused T3 from GP who keeps on telling me she is not allowed to prescribe it to me (local CCG refusal)and that no NHS endo would prescribe T3 to me. Patients are left untreated with conditions that will bring on premature death. But what do THEY care? So I also have autoimmune Thyroiditis...

As for educated ignorant and arrogant GPs and endos.... well, not an easy task at all. I certainly do try but they believe they are superior intelligent beings (excuse me if I laugh, and you may call me cynical if you wish). When I tell my GP about certain reputable research I have done, she looks blank... and am not sure she understands what I tell her... probably does not care because "she is the all-powerful doctor"... they are all the same. I have no or little respect for the medics. After all, respect is earned and not given ... and it works both ways. Sadly this does not really help us. It just feels like I am banging my head against a concrete wall, time and again... have done this for so long I am getting exhausted in trying to get the correct sort of medical help. Plus when feeling so unwell, it's so very hard to have to fight for the right to be helped by medics. No enough energy left.

As for your question "What types of patients do doctors want?" Very simple: Docile, unquestioning and subservient patients. The kind that accepts to be fobbed off, ignored, neglected, accepting antidepressants instead of the GP trying to find the root cause of the problems. They do not like it when patients are educated, aware, questioning and refusing certain drugs that would certainly not help with the problems presented by the patients. Basically, they do not like it when patients expose their lack of knowledge and uncaring nature.

With best wishes.

Hi Phillips and thanks for replying.

Poor you! Do hope you can find a way forward.

I do sympathise with your wife too as I too have also Sjogren’s... on so many drops and yet not really controlled. Am surprised your wife still gets mouthwash and gels from NHS as my gp told me 3 years ago she couldn’t prescribe those anymore.

Best wishes to you and your wife.

Thanks for suggestions. I will contact BSA. Worth checking.

Thank you Philippo.

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