So I had an appointment at the kellgren centre last week a follow up on last year. Went well came out with a plan for my local rheumy which was nerve tests on feet due to altered sensation, chase up over due dexa scan and to start tacrolimus. Bloods and urine were done with the results on the My MFT app before I even got home.!
Off I went to local rheumy appointment yesterday and got lumbered with a registrar who irritated me from the off. She spoke too quickly and didn't listen. I'm relieved she's not my T&O surgeon as she was adamant its my left elbow that needs surgery when it's my right. She also couldn't grasp that I need surgery on my right elbow and my right foot. She kept taking about cyclosporan when it's Tacrolimus. I expressed concern about possible side effects from TAC and dealing with an op at the same time. She didn't take kindly to that saying im thinking about something that may not happen. I've had side effects with AZA ( drug induced hepatitis) ,HCQ and MMF. Granted they've passed but as you will know they give us several miserable weeks. We're not talking multi vit gummies here we are talking strong drugs so side effects are a real possibility and I'm getting a general anaesthetic,antibiotic cover,pain and increases risk of infection thrown into the mix too.eventually she snapped and told me to get back in touch when I have my surgery schedule.
Nurse wanted height and weight and i said no Manchester did them last week and I don't think I've had a growth spurt or shrunk in my last wash. Then they wanted bloods and urine which again were only last week but I obliged. By now my head was pounding and I was gritting my teeth when she asked for BP which seemed a waste of time as I'm not being prescribed TAC yet but again I obliged. Once done I was up out of the chair and off up the M6 before they had chance to say goodbye. 🚗 💨
Was expressing concern over side effects and op combo unreasonable ?
Anyone have experience of TAC?
Tale told rant over thanks for letting me bend your ears I know you all have enough on your own plates.
Love n hugs SML 🫂 xxx
Edit- just to explain ops.
I tore my ankle ligament in Dec 22 and was listed for reconstruction surgery in Jan 24. Due to its weakness I've now damaged the peroneal tendon and must wear an Orthopaedic boot for walking and a stirrup splint for driving. I have an mri on sat to see extent of damage for op.
My elbow op is for a non union fracture I sustained last Oct and Nov. I have a ct on Fri for them to plan surgery possible radial head replacement so both ops could be sooner rather than later hence my concerns about both drug and op at the same time.
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Just wanted to send supportive hugs. Nothing useful to offer otherwise, but I don't think it was even close to unreasonable to voice thoughts about side effects. Autoimmunity tends to make us more reactive to everything xx
Thanks Bookish hugs much appreciated. No ones concerns no matter how trival they seem to someone else should be dismissed..they clearly mean something to that person. X
Thanks Wendy. It has been going around in my head so was clearly bugging me. My Rheumy is lovely and I know I wouldn't of got that response from him. Have a good day be kind to yourself x
Dear God, the curse of the all knowing Registrars strikes again. When will they learn to listen and accept that you know your body best and you need some reassurance and support not it might never happen. Sod`s Law seems something that follows us so it is entirely possible that it could happen.
I was ranting when I challenged in writing the gynae registrar who wrote we discussed in depth my depression and anxiety. It was never me tinned because one it wasn’t true and two it wasn’t relevant. She responded that she had “misspoken”. No it was a lie. The lie might be withdrawn but the next specialist ie the Pain Consultant referred me to a psychologist for anxiety and depression 🤬l I had my psychological assessment yesterday and was told I showed no sign of depression and anxiety, that I was proactive in distraction from the chronic pain and there was nothing she could offer that would benefit me. Hoorah. What a palaver all for a lie.
You have every right to rant. You have had an horrendous time if it and you deserve to be treated with respect and have your questions answered and your concerns addressed. It worries me that these doctors can end up the Rheumatologists of our future. Clearly she needs some training in compassion and active listening.I am so very sorry that happened to you lovely. You deserve better. Big Cwtches xxx
Thanks CP .in the end we were irritating each other as she didn't like being corrected . Then they go and put incorrect info in letters and on records like theyve done with you.I'm pleased assessment went well and you proved her wrong.
Hi sweetie; oh how I hate it when you explain and they don’t listen. Sooooo frustrating that they tell you that you don’t know what body parts need surgery and argue you’re wrong.
I’m sending my support positive energy my empathy and get well soon wishes.
Thanks EJ. Nice to hear from you. She didnt like been corrected either so in the end we were irritating each other .I hope you are managing OK and keeping as well as possible big hug 🫂 xx
Get it off your chest Spaniel 😠 Obviously the woman was a complete waste of time and petrol! You have every right to be concerned about starting a strong drug like TAC especially as you've had bad reactions before..you're actually speaking from experience not overthinking it at all. Patronising doctors do my head in!! I'm on tacrolimus ointment for my skin and when I first got the accompanying info sheet out it kept unfolding. I kid you not it was about the size of the guardian newspaper!! (Other newspapers are available) There are plenty of side effects 😹 When I first started using the ointment (Protopic) it burnt my skin but I've gotten used to it over time and it is helping.
If I was in your boot I would probably postpone the whole thing until you know more about your surgery dates after the scans. I did have a quick Google and with the tablets kidney issues can be a serious side effect so you definitely need to be reassured. We all do when we're taking these strong meds..after all we are left to deal with the side effects NOT the doctor!
Best of luck with your upcoming scans 🍀I'm like a walking pin cushion too currently as everyone seems to be wanting bloods at the moment. 🤗💜🌈🦋Xx
Thanks KK. I have read some of the side effects and there seems to be quite a few. She said I could wait a long time for ops by which time id be over side effects which is true but I've already waited 8 months for elbow to heal so how much longer are they going to leave a fracture 🤷♀️.if side effects make me poorly like the aza did when it took 3 months to recover i could jepodize an op opportunity and end up further down the queue. All the while I'm trying to get through every day in a boot with a broken elbow. Have you tried that Doc !On the upside KK son was 21 last Saturday and we met daughter and grandchildren at skipton. Xx
Good morning Spanielmadlady, that entire appointment sounds like a waste of time 😤! I’m so sorry the registrar didn’t listen and didn’t answer your very valid concerns. I think you’re advocating for yourself and that’s to be commended. I hope the surgeries go smoothly and please let us know how you’re doing afterwards 🤗💕
Thank you graystar. I know I wouldn't of got that response from my usual rheumy who I've had for 6 yrs now.when you travel a distance it feels even more like a waste of time like you say. I said to the nurse I won't see her again.i appreciate treating us is complex so not listening and getting facts wrong makes make it even harder.thankfully i am very good at advocating for myself but on this occasion I needed some validation of my concerns from somewhere as she couldnt/wouldn't give any. Drs like her bring out my fiesty side lol 🤭🤨.
My foot I can cope with....I can still walk the dog but I really need some relief from my broken elbow .it prevents me from doing so much inc my stress relief distractions like crochet . Xx
Sometimes we need to be fiesty! Your elbow must be so painful!! I don’t know if this suggestion will help you destress but I play online sudoku which is easy to do one handed. I’m also on a mission to learn 3 languages this year for a trip I’m taking next spring. The app I’m using makes it so easy to follow. Hopefully you’ll be getting the surgery soon though. Take care 🤗💕
Well done you with the languages 👏 I do puzzles I sit and do a couple of daily ones in a morning . I quite like the find the difference one's.ive just had Hugo along the golf course by the beach its abit fresh but dry for boot. Have a good day xx
Sounds like an horrific consultation. I would be fuming. If we don't ask questions, express concerns or contradict evident errors then we are giving full trust to the Dr and sadly we've all had experiences when that would be an exceptionally bad idea! As in every area of life some people are just not suited to their chosen careers. Experiences like this leave us with unspent negative emotions that take time to get over. Let's hope we are all helping to clear the air.
I had a young wippersnapper of a GP explain that every year we have birthdays and get a little bit older and actually said - it makes you wonder about this diagnosis - his explanation of pains I was experiencing- I was going into a major flare!! He was ever so lucky that my hands couldn't reach his neck, but a spell at His Majesty's leisure isn't part of my life's ambitions., so I quickly remembered my manners but ranted like a trooper all the way home and then beyond.
I do so hope that you get to speak to someone sensible in order to put your mind at rest prior to all the surgery you face. Take care x
Hi Rosie. Thank you ive come down from my rant and I'm weary and weepy today not helped by Hugo who I've just spent an hr trying to get in the house. I know I wouldn't of got that response from my rheumy who I've had for 6 yrs and is lovely. Like you I could easily get them by the scruff. Ive got to appointments in the past and refused to see drs. 1 was in eye clinic she gave me the wrong drops and made my eyes worse and another was an endo who said I was hypothyroid and stopped my meds...I was on my knees when he sent a letter saying my bloods showed I was. I won't see her again.
The rheumy nurse is supposed to ring regarding the TAC . Hioefully I will get a schedule after scabs tomorrow and Saturday.
Glad the rheumy nurse is phoning. They can be so proactive and helpful. I'm in limbo waiting for my consultation in early August when I discuss meds, cardio results etc in more detail. Meanwhile trying to keep calm but have been fighting continued rib pain, very debilitating. Do let us know how you get on when you feel able. x
Rib pain is very draining isn't it you have my sympathy. At least Aug is just around the corner and fingers crossed its a better appointment than mine. Chin up lass...together we keep going xx
Hi SML- sorry I’m late to party so to speak. I despair for you / all of us when these things happen. It’s infuriating when a minority of the medical profession are condescending and forget their “learned” knowledge isn’t always a match for our lived experience. My worst experience was many years ago when a registrar laughed at me because I’m a childless midwife. I was distraught as of course lupus had a lot to do with me not having children. I do so hope he didn’t ever make it to consultant status. On the whole though my hospital experiences are good as my consultant is wonderful ! Knowledgeable, kind, compassionate, efficient, listens to me & treats me with respect. I’m VERY lucky.
Tacro was a game changer for me. I took it many years ago. I’d tried azathioprine & cyclosporines with horrid side effects and no benefit. Tacro dramatically improved my quality of life, symptoms improved enough to get me back to work. Side effects I can recall were quite bad tummy trouble, I didn’t dare be far from a bathroom 🥴I also had a notable tremor. Both of these things although bad were worth it because of the positive effect it had. I came off the tacro to try to have a baby but I flared very quickly once off it. My own consultant was on long term leave and the locum didn’t want to prescribe it again. I’ve now been on methotrexate for years. It didn’t work as quickly as tacro did but it has had a long lasting effect. My experience was positive.
Hang on in there - you’ve a lot going on! Sending you lots of get well wishes. Xx
No need to apologise flower all words are helpful. Nice to hear from a new friend.That is an absolute disgrace I hope you reported him. My usual rheumy I've had for 6 yrs and is lovely. I wouldn't of got that response from him. If side effects like tummy trouble coincided with my leg in plaster for 6 weeks non weight bearing could you imagine that.it would be bad enough wanting to be sick.plus I only have a son at home now.I'm pleased to hear TAC helped you . Mmf has helped me in some ways but it hasn't succeeded in reducing the steroid burden of over 10 yrs hence trying the TAC. Thank you for sharing your experience with me.
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