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PMRGCAuk
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Azathioprine

Hi Lovely People

I have seen my Rheumy today -and up to is usual standard he was uncommunicative and uninterested .... no eye contact etc.

I was the second appointment of the day, and he had not arrived when I got there. Finally turned up, spent half hour with the first appointment, so I thought, good he will still give me some time ........ I was in with him for 4 minutes!

I commented i was down to 8/8.5 mgs but still ached. He commented something else like OA going on. You are a bit of a mess. I will start you on Azathioprine, I queried helping it with my aches and pains and was told no it wouldn't. It was a steroid sparer, when I tried to question the side effects and how useful he said he was running behind and didn't have time to talk any further .... 4 minutes..... complete wast of time.

Has anyone found Azathioprine useful? I thought, as he said it would be a minimum of 3 years treatment, being at almost 8 mgs two years in with PRM&GCA wasn't too bad.

He had no interest in the fact that when diagnosed I had no arthritic changes apparent and now x-rays have confirmed both knees and shoulders , it the same pain in my neck, back, hips and ankles so I fear it maybe throughout - so I will see my GP once letter from Rheumy has arrived and hope he can help me with my situation. Oh he suggested anti-inflammatories for the pain even though I had just told him I stopped Arcoxia because I had a stomach ulcer.

I felt completely depressed and disheartened by his manner.

Anyway, in reality I am no worse of than I was yesterday, just a bit grumpier!!

Thanks as always

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Hi Lesley, how depressing. I know what you mean though. It will be interesting what the rheumie's letter says. I have found that a lot of these letters seem to have been written in fairyland. I do not recognise them at all.

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I know Piglette, I am sure he is a really intelligent, informed professional, but if you cant speak to your patients there seems little point in choosing to be a consultant.

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Hi Lesley,

My father is a doctor and also a lot of his friends. I think in general they tend to not be particularly personable as a group and tend to be academics. The trouble is this is not particularly good for the Patient/doctor relationship. A lot seem to be fighting to keep the days when the doctor was king.

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Yes, well they are not Gods, that is for sure! I have had some honestly wonderful ones, but my family doctor just doesn't listen. I don't think she's too bright. I always speak French to her ( my French is not great) but she doesn't speak English, or won't? Half the time I don't know if she understands me. However it is hard to get a doctor in Montreal, so I am a bit stuck with her. Take it as it comes I guess. Whatever.

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Don't let someone who is very poor at his job or was on that day,upset you. Who knows, the patient before you might have had something dreadful and it drained him. Or maybe he's just not very good. Why we expect people who excel at science to be emotionally intelligent, I don't know!

You have done well to get to 8.5 mgs when the disease is clearly still active.

I am afraid I haven't heard of Azathioprine, someone on here might have. Do some googling and discuss it thoroughly with your GP.

I wonder if Tramadol might help your arthritic pain? I have cervical spondylitis and I suspect arthritic knees and it helped today in all the rain.

I would sack that Rheumie off. He's paid to make people better not to crush them. Never in all my working life have I ever treated anyone badly or with neglect. It is not that hard to achieve.

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I often wonder why we do not tell these so called consultant 's a truth or two?! Why do we tolerate the awful pain,the let them patronise us in this manner...I'm brewing myself up,the next time,they had better be prepared for a screaming banshe ..we souldnt put up with them treating us in this manner.grrrrr.rant overgrrrrrrrrrrrrr

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Hi Sheila39

I can speak up for anyone else, but when it comes to speaking up for myself I often fail miserably, not wanting to take peoples time or attention etc. ........ or seem to be moaning etc.

I frustrate myself!

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Sheila39

Simple answer: because we, the patients, are not allowed to treat NHS staff in an abusive manner! , the signs are up all over the place in hospitals. So we are afraid to make suggestions, which are poo pooed in any case. My rheumy has written on my notes that my PMR is no longer active? Huh? spend an hour in my shoes Rheumy ( if you can get them on with the swollen feet), and then speak!

Cross? Oh yes. I have now been prescribed antibiotic bombs for a Krill induced UTI, which can cause painful muscles, joints, neurological problems, disability etc! Oh my goodness, I refuse to take them but must confront my doctor today. scared.

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Good luck! Hope it works out.

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Hi Lesley, your symptoms are so like mine I could have written your post about myself, also the Rheumy situation , had exactly the same problem , I am now back under my GP as I had no confidence in the Rheumy . He tried to put me on Aza also and I refused to take it as the side effects where just as bad as I was already getting, long term it just would have meant more crap to deal with I got down to 1 mg earlier this year but tried a little to hard to get of pred and ended up having to go back to 5mg that's where I am now , not a Lot I can help you with as I am in the same boat taking Arocoxia when pain gets me down and trying not to feel to depressed about it all , hope you find an answer to the way forward and if you do post it as I will. Good luck on your journey πŸ‘πŸ˜€ try to stay positive

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What an awful experience, i don't I would be going back to him. Have a word with your GP and ask to see someone else. As for azathioprine it made me very poorly and I have put down as allergic to it. Been on methotrexate, leflunomide and mycophenalate as steroid sparers non worked. Now on hydroxychloroquine which I don't think is helping either. I'm currently on 10mg oh pred but have quite a lot of hip and shoulder pain. Really think I should increase again but grinning and bearing it at the moment hoping my body will adjust. Not been able to get below 12mg over the last 3 years and even at 12 I still have pain.

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Thanks Griggser, seem to be an ongoing battle doesnt it? Thank for sharing your experience - I think I shall decline and just stick to the preds!

Best wishes

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It's a buggers muddle if you ask me. I told my rheumy I was stopping taking alendronic acid after 3 years, he wasn't particularly happy but it's my body and on balance with everything I've read and my level of activity I concluded the risk of not taking it was better than the side affects. I think the same has to be said for any drugs your asked to take. It's not made easy as the condition of PMR is a fickle thing and I'm never sure if it's the PMR or the pred that is affecting me.

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Totally agree, sometimes the tablets make you feel rubbish too and the professionals seem unsure where its the steroids or condition! However, I certainly initially felt more comfortable on preds and of course it saved my sight - so not all bad I guess!

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Actually, Griggser, three years is likely the maximum anyone should be on AA before the bad effects start to outweigh the benefits, so you have done the right thing.

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Wow! Sounds just like my first rheumi.. completely useless! Just can't understand why they don't just Google a condition they clearly are unfamiliar with. Its so simple. This rheumi is just another narc , you should find a new rheumi.

Lately, I'm finding that medical doctors are like the middle man between Pharma and the patients. All they do is push meds.😀

Hope you get it sorted out soon.

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There are a few people for whom azathioprine does help them to get to a lower dose but it doesn't work for everyone and it isn't recommended by the experts in the guidelines - no DMARDs (aza is one) other than methotrexate are and even the comments about that are not confidence-building! I think where they work it is in patients who have a degree of inflammatory arthritis as well as or instead of PMR. I do know a few people for whom methotrexate works to achieve a lower dose - but they are still at about 7mg pred.

"Oh he suggested anti-inflammatories for the pain even though I had just told him I stopped Arcoxia because I had a stomach ulcer" - he obviously doesn't listen and isn't interested enough to do so. I would vote with my feet (I did with a similarly gifted rheumy). It is appalling he suggested adding a DMARD without at the very least making an appointment with a specialist nurse to explain it if he was using you to catch up on his being late - which to be fair was probably because he'd been doing his ward round and probably looking for patients on the wrong wards...

The first patient was almost certainly a new patient - there are only a limited number of these longer appointments available per clinic and are always early so they can be sent for some tests immediately (bloods, x-rays) which can be looked at the same day in some cases so something can be started immediately.

Discuss this in detail with your GP - with just pred they could manage you equally well and show more interest.

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Thanks PRMPro,

I will as you say have a chat with GP he does listen. I really don't want to go on another strong med, and would rather plod on reducing.

Thank you for the clinical information, it give me the opportunity to make more of an informed choice.

His first client may have been her first appointment, but he wasn't late doing his rounds he was caught in traffic apparently.

I was going to change earllier this year, but thought I was being overly sensitive ... not now though!

Thanks as always PRMPro

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Shocking story and lack of respect and proper care from the Rheumatologist, who doesn't deserve to be called a specialist. Your GP will give you 10 minutes and if you can book a double appointment, as I can, 20 minutes. PMRpro has been very generous in her comment ".....he'd been doing his ward round...." In that case he needs to reorganise his routine. Hopefully, you'll never know, as you won't ever see him again!

Breathe.....! Me and you!

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Whilst I recognise the utility of computer access records I believe that putting them in consulting rooms is the worst use of such technology. There is usually 10 secs of eye contact then the side of their head takes over with the clickerty clack of keyboards and mouse. At which point my mind goes blank and I lose all confidence in them. It's a complete disconnect of doctor and patient.

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Really does depend on the doctor - everything here is done on computer but it doesn't stop the doctors talking to the patient. Obviously there is the odd rude plonker but they are very few and far between - and most of them sit so both can see the computer and each other's faces.

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My late hubby was in and out of various hospitals both as an in-patient and out-patient for best part of 20 years with coronary problems. With only one exception, all consultants were great I have to say.

Maybe it's just a Rheumatologist "thing" - but there do seem to be some plonkers about! Perhaps it's not perceived as a "glamorous" job like a heart or brain surgeon!

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We both worked in the NHS, the daughters still do. There were some strange ones - surgeons were renowned for (to put it kindly) eccentricity! Our field didn't really include too many rheumies but David did work with one on some committee or other (ethics probably). She was the first rheumy to get my dx wrong - she was rude about it too when I got a recall the following year (not my fault, I had better things to do). And she knew who I was - pity help Joe public. The second? Well he was newly appointed - and arrogant. Wonder if he is still as bad?

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Dear Dorset Lady, I think you may be right that there may be more than the average not so good rheumatologists. Cardiology is much more elite along with being a neurosurgeon. Perhaps rheumies are considered on a lower level and it may attract people who are not so good. I used to be a trustee of an Arthritis charity and we had a few rheumies on our committees. They seemed fine, but I suppose they were in a different environment and were the sort of people who wanted to give their time for free.

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My suspicion is that they think it is a cushy number, very little on-call at weekends and while patients don't recover it must be easy to manage their symptoms with modern medication. But eventually - they realise there is no dramatic recovery event to make them feel good either...

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Snap! You got there first - as usual! But as we always say - it's not a race πŸ˜‰

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Yes think you might be right. Maybe they also consider themselves as not being as appreciated as other disciplines of medicine, by either their peers or patients.

Plus I guess they don't get dramatic results like in Neuro, Cardio or even Orthopaedic fields, so they don't get the same satisfaction from their work.

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I worked with neurosurgeons who were excellent and very caring and now work with colorectal surgeons who are little above themselves at times. They go from friendly specialist registrars to aloof consultants when they get promoted. I've heard that dermatologists get a bit of stick sometimes as their speciality isn't considered to be particularly "sexy".

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Not just the bum lot who are like that! It's the way they get so shirty about being called "Dr" when they're "Mr" that tickles me. Doesn't happen anywhere else besides the UK as far as I know. Here they tend to have at least 2 Dr titles...

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Yet Vets. even specialists are generally referred to by their Christian names .... strange eh. Mind you -working with animals keep you grounded!

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They have to have better clinical skills too - animals can't tell you where it hurts,,,

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I know!! They study for years to become "Dr" and then get offended when the poor patients say "Dr" when they are "Mr". The patients get even more confused when the consultant is female. Our new female consultant is referred to and generally known as "Miss", when she is actually "Mrs"... She's got round the problem by telling everyone to call her by her first name!

Just a little anecdote... I bumped into a consultant who had come across a spillage in the ward corridor and he had raced off to the sluice to grab a mop. There he was mopping away while his entourage stood there waiting for the ward round to continue. I commented on his helpfulness, and he said his mother was very strict!

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Oh yes, and the poor patients are expected to know that surgeons are "Mr" and physicians are "Dr"....

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And he probably wouldn't know what to do with a patient/member of staff who slipped on it and broke something...

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That made me laugh! You're absolutely right. This particular chap would have run straight back to the sluice if someone had slipped and broken something.

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My doctor is good and really has a great manner - but the Rheumy grrrrrrr not so much!

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Oh that sounds awful!! And he sounds worse than the rheumy I saw earlier in the year!! He obviously wasn't really listening to you when he suggested anti inflammatories when you had told him you had an ulcer!!!

On the Azathioprine front...I would only say..get your bloods done after a week!! My liver enzymes shot up in less than 10 days..as in ALT from 20 to 639! Alk Phos from 52 to 294 and best of all...my Gamma GT from 18 to 604!!! Surprisingly though, I felt ok. Azo was obviously stopped immediately and it took about a month for my bloods to return to normal. Maybe I'm just super sensitive to DMARDS as Methotrexate didn't agree with me either, but if you do start it make sure you get regular bloods. What dose does he want you on? I was on 100mg, but when the Methotrexate didn't work for me I asked if I could try Azo again...on a much lower dose..I was desperate to get off the steroids!! So they tried me on 25mg.....no go!! The reaction was even quicker.

So now I am going slow slow slow on my reduction and it will take as long as it takes!! :)

Good luck to you...maybe a chat to your GP would help.

Linda

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I'm in USA. Finding rheumatologists in sarasota Florida , are possibly disengaged in the horrible fatigue and inability to enjoy the slightest normal life when in a flare up. In addition , I'm told to go to ER where the staff there are not experts in PMR/GCA and possibly follow what info is taken in with the 'patient'. Seems very unscientific too me. I was a fully functioning, executive planning and carrying out person prior to this. I deserve expert, compassionate treatment, within easy geographic range, in my opinion. May God intervene in our favor.

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I had a terrible experience with a rheumy when I was first diagnosed in 2011 and I'm afraid I told her off. She was arrogant and insisted that I had rheumatoid arthritis and not PMR. She told me I had all my symptoms wrong (as if I was stupid) and if I didn't do what she told me I would wake up blind one day. I went back to my GP and have been under his care ever since and doing well. I've had a few flares but seem to manage them and recover fairly quickly. I will be 81 this Oct. and I am able to play golf 3 times a week (walking all 18 holes) swim, bicycle and walk 3.5k on the days I don't golf. Not too bad. So to all of you - there is hope - we just have to get over the bad parts and get to the good ones. This website has been a Godsend to me and I thank PMRPro and DorsetLady for their input. I have passed a lot of your info on to my GP. Thanks.

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I hope you made a complaint about her!

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Yes I did but there were a lot of others who complained. Unfortunately there are only 2 rheum. in the town and the other one is booked a year in advance. Some of the complaints were worse than mine. I've had to stand up for myself all my life so would not let anyone away with treating me like that. Some people are not able to handle the situation and let them get away with it. I guess it's my Scottish upbringing.

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Very likely!!!!

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Thank you all for your comments - as always this forum is so supportive and people are so willing to share their own experiences - which is wonderful because it seems it is a minefield of different information, recommendation for our professionals caring from us. Its great to have an unbiased, honest opinions and listen to each others stories.

Best wishes to you all

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I am very lucky in that I have a fantastic Rheumatologist, talk to your doc about your medication think I might give the consultant the push. All good wishes.

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As azathioprine has its own lovely suite of side effects, and you are at a reasonable dose of pred after two years it seems premature to suggest you add any other med to the mix at this point. Personally I'd think better ways to achieve successful tapering of pred could include advice about tapering methods, evaluation of your activity, diet, stress levels, etc. There is so much that we can do to work towards improved health, it's such a shame that the doctors, the friendly ones as well as the grouches, just throw drugs at us.

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Hi Lesley.... Suzanne here. Sorry to hear about all the frustration you have been having with some Doc's recently ! All you want to do is get better and FEEL better as we all do on this Forum. I can't help but wonder if some of these Medical Professionals don't need to go over AND review the Hippocratic Oath ( Modern & Classic) that they all took upon Med School graduation. Maybe some memories might be jostled.

Best thoughts,

S.

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Azathioprine made me ill, felt i was being posioned then after about 5 days i spent half an hour throwing up , then lying on setee all day recovering.Never took them again.

i have pmr nearly 2 yrs now and on prednisolone, omeprazole, vit d and iron tablets.

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Thanks rumbly, I am going to decline it and change Rheumy's - I think we get to a point where we are put on meds (in addition to preds, vid d and omeprazole), such as Gapapentin, Methotrexate - which have to some of us such nasty side effect that it makes life too miserable and detaches us from everything. I just want to slowly reduce .......

Thanks for your reply, its makes the decision easier -

Best wishes

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Hi lesley2015

I just like to add that i was then put on cellcept made no difference taken off it then cyclophosphamide and co-trimoxazole which i declined.

i like you just want to reduce slowly. I am not going to take any more steroid sparer drugs.

hope you feel better soon.

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High Rumbly, I too was given azathiprine, and like you felt I was being poisoned. Very poorly with D & V for 12 hours. I thought it was just me. Good to know I am not some kind of freak, with many drugs not sitting happy with me.

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So sorry to hear about your doctor. Really, a little more compassion and understanding goes a long way. Let us know if you feel any better with the

Azathioprine. Hope it helps.πŸ‘

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Thanks TerryOR, decided against it for the moment, it appears (fingers crossed) I have successfully got to 8mgs, so 'I' think I am doing pretty well and feeling more myself and not willing to rock the boat on just the suggestion they 'may' work as a Pred sparer.

Thanks fof your good wishes, I hope you are doing well too.

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Most sensible doctors stop panicking once you get to 7 or 8 mg. Mine here told me to aim for 8mg by the end of the summer when I had a flare last year, that was all he wanted.

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Hi All - I am so stupid! ............. I did only have four minutes (thats my excuse anyway) and did not remember the medication correctly is was actually MYCOPHENOLATE - (I recieved his copy letter today) any experience with this - looking at our wonderful google and internet, it actually seems worse than the Azathioprine - and info would be so useful

He justifies this because my ESR - was 30 albeit CRP 5

Thanks as always

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I started mycophenolate three weeks ago. First two weeks terrible nausea but seem ok now. Not that I like taking yet another med and I will suck it and see for now. I don't seem to be able to get below 13mg at moment. Got to 8mg last year but felt worse than at school and markers went up so ended up back on 15mg when I saw rheum. 1mg drop a month/6weeks but pain returned. Having bloods etc done on Monday and I will see what to do then. If anyone has had benefit from mycophenolate I would love to know!

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I feel for you, how long have you been on preds etc?

I am two years in and am finally down to 8mgs and feel quite comfortable and much more myself - I really don't want to rock the boat with a medication that may or may not help me reduce and possibly make me feel rubbish in the process. I am reducing successfully by half a mg a month - I am happy with that.

I will speak with my GP and get his opinion, but I will be starting 7.5 next week so I really cant see the point.

I hope it helps you and you feel ok on it ..... will be interesting to see what others say ...

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Thanks. I think if I was ok at 8mg I would definitely not take it either. I suspect that I came down too quickly initially as an obedient patient although I did reduce by .5 rather than 1mg each 4 weeks against drs wishes once I got to 12mg first time. Fingers crossed I can get it under control and start coming down soon.

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Sorry. Dx June 2016 but think started 3 years ago when my shoulder 'went'

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School equals diagnosis...πŸ€”

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