A very brisk young lady saw me. Unfortunately there was a long wait, so son had to get back to wotk before I was seen. I was asked why I had made the appointment. Through gritted teeth I said it was my GP, then she asked what was wrong. We went through various things, she cheerfully said the Raynaud's would be so much better now the sun is coming out, so I showed her my butterfly rash selfies. I was asked sternly if I had SP50 on my face at the moment (yes). Some muttering from her about lupus. I enquired about the hydroxy and was told I couldn't increase it because of my low body weight. I asked why they put me on hydroxy in the first place as I haven't had a follow up. Explanations of how safe it was, but have an eye check every year. I pressed that I knew it was quite safe, but why, in her opinion was I taking it? She confirmed that blood tests show I am ANA, RNP (and something else) positive, though lots of people have those results and are not ill. Hydroxy to be on the "safe side".
So, another armful of blood tests, with anything problematic, I'll be contacted immediately, otherwise another appointment in four months. I did query their waiting lists, as politely as I could, and apologised if I was appearing offensive. Reassured they are rapidly getting on with sorting that problem out.
I simply have no idea if I'm being treated like a nuisance, worried well, or being patronised. I suppose I should be assured that they are doing the tests, and that I have meds.
One last thing: the Raynaud's in my hands are "OK" as long as I don't get pitting in my fingertips, but I may not be responsible for my actions if one more person advises me to wear gloves and socks as if I've never heard of them 😱
Crawling off to lie down now. Getting up in good time and enduring shower horror before going out is quite enough for one day x
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Lupiknits
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Get some rest - you are not a nuisance so stop that immediately!! I wish I could give you a hug so I'll have to send you a virtual one. I'm not much use at the minute - brain's gone AWOL.
let's hope the blood tests show something problematic..wow, way to put your mind at rest, huh?
Sorry for delay in replying. Read your post but had to do school run etc. Now trying to take it all in. What a shame your son had to leave before your appt, best laid plans and all that! She mentioned positive ANA and others? Do you have copies of your blood test results? I recently wrote to my hospital, asking for copies and asking how much they would be. They popped them straight in the post and didn't charge me. Would you like a copy of the letter? At least then you would know what the tests showed? Hate being kept in the dark when it's our bodies, illness and lives! 4 months I guess is the follow up then for these new bloods. Better than waiting to go on the waiting list list?! Or whatever it was. But not any real progress for your peace of mind. Did she come across knowledgeable efficient? If you get my drift? I hope you are resting now. Such a rushed appt for you to deal with. Let me know if you want me to message that letter? I used to get clients medical records when I worked in PI and used a similar template for my own personal records. Sending you strength and a well done hug. Wendy x
I had to halve my dose due to being slight - I'm 51kgs/170 cms which gives me a BMI of 17 - 18. It can cause weakness and other stuff if you take a higher dose.
OH......GRRRRRR..... here I go again.....my interpretation:
YOU were great!
SHE sounds like one of those scardy-pants immune dysfunction+Connective tissue disorder-inexperienced medics who don't have the confidence to collaborate with a clearly intelligent & self aware & well informed patient on treatments trials during provisional diagnosis....how many times have I heard of medics patronisingly assuring patients they are lucky to avoid the heavy duty meds that come with labels like systemic lupus or whatever...ok, she didn't say this to you, but I bet it was on the tip of her tongue
I won't vent on...apologies if I've misunderstood anything...it's nap time 😴😴😴😴
For what it's worth: apparently at approx 60kg & 170cm I'm ok for 400mg hydroxy daily
Thanks vvv much for posting news right away...you were on my mind
Get you with your metric weight and height! At 42 I should be doing it that way and not imperial! Shame on me! 😂😂 according to the google app thing I'm 82.5Kg and 1.75m. 😘
😆 YEP, am metric...I refuse to check my weight @ home (due to history of youthful eating disorder) so I rely on stats from clinic visits...usually I ask the nurse to give me all stats EXCEPT weight...I jot it all down on my sheet of appt notes...🙄 Well, last month she very conscientiously told me everything 💁🏼inc my weight: Check Mate 😆
🍀😘🍀😘🍀😘
PS I like rounding to the nearest 0 😉 easier to remember
Yes coco. You have more experience than me. Taken the words out of my mouth about her possible inexperience and approach. Not one size fits all, but there you go. V interested in the amount of hydroxy you take. Will bear that in mind x
Thank you for responding x i've just been flat out under a blanket with the dog to warm me up! Now that my head is a little straighter, I think I was initially feeling a bit downtrodden at the appointment, but that's because I was expecting it and looking for it ☹️ Thinking it over, getting an appointment to follow up in four months is like being given top prize! My last rheumy appt was Oct 2015. The young woman was brisk and crisp and my impression is knowledgable enough. A lot of her simple explanations might well be an automatic baseline to help the nervous. I'm surmising that there may be some management supervision going on there, because the same chap who seemed to supervise an osteo appintment I had last summer was supervising again. That is complete supposition and slightly based on young lady's proud assurance she had reduced waiting lists enormously.
I do have my bloods but can't remember them clearly. Easily supplied by new GP. I'm feeling better that I've been seen at last, and more bloods will be checked.
Oh dear, wendy. I've 5'7" and struggling to keep above 7st 2lbs. Lots of upper gastric problems have made it very hard to swallow and keep food down. That was the beginning of all my symptoms, and I'm 2-3 stione below my best weight. Went down to 6st 12lbs at Christmas, which was scary. My BMI must be very low, so I think I agree with her about increasing hydroxy x
OK. Your weight is obviously low. Mine has crept up and up. Heaviest I've ever been, even after 3rd child. So I can see why she doesn't want to up your hydroxy. It's always difficult to process these appts. They are SO important to us. We prepare mentally and have our lists. But like you said they are over in a whirlwind and our initial analysis might change as we mull it over. Despite everything, you're back there in 4 months. Let's see what those bloods tell you. Keep your chin up. X
LK you did fabulously well under the circumstances and I think this counts as an okay/ quite good appointment really. I've come across her type before and can't honestly say I approve of this type of doctoring. But the important thing is that the follow up time is in four months and that they took lots of bloods and are aware of the severity of your Raynauds and keeping Hydroxy to lower dose according to your BMI. This is important as first rheumy explained to me that Hydroxy builds up in the body slowly and can cause toxicity issues over time - these are the ones that can affect the eyes. So body weight is an important thing to factor in with Hydroxy dosage he told me. I know exactly what you mean about socks and gloves advice - it's like being at kindergarten!
Take care and give yourself a big soft pat on the back.
It does sound as though she favours the 'sitting-on-the-fence' type of approach, doesn't it? I thought anti-rnp +ve pointed to likely MCTD but what do I know, I've rarely mustered an antibody to anything!
At least she is keeping you in the Hydroxychloroquine - she wouldn't if she didn't think you something AI going on. Stay positive x
I'm guessing there was no mention of your nailfold capilliary test then? I've read this is usually fairly definitive for the various CTDs and she wouldn't be able to tell you that healthy people can have this too.
Maybe for next time if you didn't ask this time? X
I know - especially if the last minute consultation is running so late and the young woman you've never met before is brisk! Bullet point lists work for me though so you have four months to draw one up now! X
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