Rant warning......

[Spanielmadlady]

Morning my friends.

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.

[bookish]

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

[Spanielmadlady in reply to bookish]

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

[bookish in reply to Spanielmadlady]

Absolutely agree. Will be thinking of you - hope scans are useful and as stress-free as possible x

[Spanielmadlady in reply to bookish]

Thanks I'll let you know x

[Numptybrain]

You have every right to rant away, nothing worse when they don’t listen! Good grief that’s a strong part of their training. Sending hugs.

Take care

Wendy xx

[Spanielmadlady in reply to Numptybrain]

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

[CecilyParsley]

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

[Spanielmadlady in reply to CecilyParsley]

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.

Take it easy xx

[honeybug]

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.

Take care of yourself hun.

Love and prayers sweetie.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[Spanielmadlady in reply to honeybug]

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

[Krazykat26]

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

[Spanielmadlady in reply to Krazykat26]

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

[MEGS53]

hiya

You’re being very reasonable and wise to ask Qs!

Sending supportive hugs 🤗🤗🤗