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.
👍
xxx
Am I pushing my body too much?
Life is hard but I am harder :P
I am in total shock!!! Did not know That lupis is genetic.
Why am I hungry all the time?
Should all Lupus patients have Vitamins and minerals checked as Vit D deficit often missed?
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.
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
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.
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 🙂
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.
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 👍
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
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 😉😀.
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.
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...🤷♀️🤦♀️😀😀
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.
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 😃😃
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.
Indeed. Can't argue with thwt KayHimm (nor would I want too). 😐
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
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
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