Long time : Hello all, It’s been a super long... - LUPUS UK

LUPUS UK

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Long time

LouLamb
LouLamb

Hello all,

It’s been a super long time since I’ve been on here. It’s crazy how fast time goes. Thought I’d give you all an update how things have been going.

I did the metho injections for about 8 weeks. I have now stopped as of maybe 3 weeks ago. I was getting a sick feeling but my head was making it worse. So I decided to stop because I need the head sorted out first before I can carry. It’s more of a head problem than an injection problem really.

I had an appointment with consultant 2 weeks ago. Took me a long time to calm down after that appointment. My last 2 blood test have shown a liver result. No one thought to ring and tell me that. So I went to my appointment month after the last blood test and she wanted me to get one done straight away to see if it had gone down. I told her if someone had bothered to ring me before the appointment I would have had one done.

She completely didn’t listen to me about the head stuff and feeling sick. She told me I need to get back on injections if bloods came back fine.

She also told me that by taking the injections everything will go back to how it use to be. Biggest load of rubbish I’ve heard. I’m not going to be able to make a fist again or do certain stuff by just taking the injections.

I saw my gp in the week. She has given me a self referral to some counselling. So I’m going to ring up for that soon.

I’ve also asked her for a referral to the lupus clinic in London. I want to go somewhere that actually might care. I’ve had enough of my hospital and the rheumatology team now.

In July i brought myself a Sociology level 3 course which I get a year to do. I’m currently behind schedule but hoping to find some motivation to do it from where.

I have a nurse appointment at the hospital tomorrow so hopefully she’ll tell me my bloods are fine now. Not optimistic for the appointment.

I have an occupational health appointment on the 15th. As at work I changed classes this year and now work with more able students so not a lot of hoisting. I can’t do certain things and my works moving and handling lady did me a personal risk assessment. The head wasn’t to happy about it so wants me to go for an appointment there. She’s told me not worry as she just wants to know what they can do to help me. I’ll update on how that all does when it happens.

On a more positive note my driving is going amazing. it was a whole year since I passed on the 22nd sep. My car passed it’s mot. My birthday is on Tuesday !

I hope everyone is keeping well. I’m going to re some posts now to see how everyone has been getting on xx

26 Replies

Hi LouLamb,

Sorry to hear things not going so well, hope things improve.

A year driving, it’s gone fast - well done, all those posts after each lesson I remember them well. Glad the car has passed it’s MOT.

Happy birthday for Tuesday 🎂🍾

LouLamb
LouLamb in reply to MEW53

Hey .

I remember writing all them lesson posts!! Seems like forever ago now. My life has changed so much because of it for the better!

Thank you for the birthday wish ! X

Lovely to hear from you Lou - and you have done so well!!! A year since you passed your test - OMG! I remember the lesson posts so well too. Happy birthday when it comes.

That consultant would be a no-no for me. Not telling a methotrexate patient they have raised liver values is downright negligent - to miss it once is bad, 2 is unforgiveable. I took mtx for 4 weeks - and the main reasons I refused to continue were the fatigue and the brain fog. It was worse than the PMR was BEFORE I even went on pred! I didn't feel sick - but that was the only positive for me. And to insist you will be back to how you used to be is very unprofessional - because you know it isn't going to happen until they produce a miracle drug. mtx may be good - it isn't that good!

Fennella02
Fennella02 in reply to PMRpro

Likewise! I was worse on the MTX than I was with the uncontrolled Lupus. Adult tantrum and total refusal moved me swiftly on to Mycophenolate.

LouLamb
LouLamb in reply to Fennella02

I never had bad results for bloods when I wasn’t taking any meds .x

LouLamb
LouLamb in reply to PMRpro

Hey,

That’s why I’ve asked to go to the one in London now. As they might actually keep track of me and care.

AgedCrone
AgedCrone in reply to PMRpro

I'm surprised with raised liver values the doctor wants LL back on Mtx aren't you?

LouLamb
LouLamb in reply to AgedCrone

I’m thinking about not going back on even if the result comes back normally this time. I need to sort my head out first x

AgedCrone
AgedCrone in reply to LouLamb

Just say calmly you'd like to try another Dmard, there are lots more to try......you can't go on with your head feeling like that.

LouLamb
LouLamb in reply to AgedCrone

I don’t know why I let so much time go by with out being on here.

I forgot how much I love the support from you all.

I will ask for different meds! I’ve been doing this alone for the past few months when I should have been on here with all you amazing people. This helps me so much 💖💖 xx

AgedCrone
AgedCrone in reply to LouLamb

I think we sometimes think " Oh I'm OK now" when we get on some meds that suit us...the we suddenly realise we need back up!

But you have done so well LL. You worked really hard, passed your test, bought your car....you should be very proud of yourself.

Well done!

LouLamb
LouLamb in reply to AgedCrone

Thank you so much.

I always thought with lupus my life was over.

I’ve realised it’s only just starting

AgedCrone
AgedCrone in reply to LouLamb

Yes life's a bummer sometimes but you are proving you've got the right attitude to soldier on. It probably won't always be how you expect....but just look how much better you are ......& you are young so hopefully better drugs will come along for you soon.

Take care.

PMRpro
PMRpro in reply to AgedCrone

Very - trouble is, so many don't think the patient's complaints are justified. The brain fog was awful - thank goodness I don't have a proper job to hold down because I couldn't have, especially once the fatigue icked in. I kept a note of the side effects as they started when I tried it and he accepted that it wasn't worth it for me but I'm pretty sure that raised liver values would have been enough for him to say no more, stop now.

But I do know of places where the patients aren't monitored properly and the worse side effects don't appear for a long time. It goes for lungs as well! And almost a third of patients have to stop mtx because of side effects. So kindly don't tell me it is safe and well tolerated. If you can take it - great. But many of us don't get on with it.

louise-a
louise-a in reply to PMRpro

Good point . My breathing got really bad after starting mtx. Off it now and will NEVER take it again. xx

Happy birthday Loulamb xxx

LouLamb
LouLamb in reply to louise-a

Thank you xx

Happy Birthday! Have high hopes, it helps me get through each day. Even if it ends up not being so great, at least in the morning I'm smiling!!!

LouLamb
LouLamb in reply to pmrkitty

Thank you !

I take each day as it comes x

Lovely to hear from you.....definitely try to see another consultant....I had that really bad head feeling after 7 years on Mtx...my consultant took me off it straight away as soon as I told him,.....it took a while to clear.....but I couldn't think straight.

Explain to your GP...I,m sure he'll get you a referral to someone else.l

LouLamb
LouLamb in reply to AgedCrone

My gp was just waiting for the latest consultant letter to come through then she’ll sort of referral. x

Hello Lou!

Sorry about the Rheumy team being rubbish, you would hope if there was something up with your bloods they would tell you.

I really hope there is more positive stuff coming up and you can have a fun relaxing birthday X

LouLamb
LouLamb in reply to Penguintaz

Thank you.

I’m just at my nurses appointment now. So I’ll do an update on it later when I get home. I’m going back to work after x

Penguintaz
Penguintaz in reply to LouLamb

Hope work is alright, I'll keep an eye out for that update :) X

Hey LouLamb

Well done on the driving time has really flown by. Sending you happy birthday wishes and gentle hugs. Are you doing anything nice? I hope that you are able to and enjoy it whatever the day holds.

I'm sorry to hear that the injections are not treating you well but you will find time and get motivated to complete your course. Sometimes you got to see through the fog and be in the right head space. You know you can do this?

Take care and good to see you back online xxx

LouLamb
LouLamb in reply to kitkat74

Hey,

Thank you for the birthday wishes. I’m having a pizza at home tomorrow with my mum and brother. I’m going to a Carvery in Wednesday with my friend and her parents and my mum.

I did a good 30 minutes of my work this morning because I got to work early!! I achieved a bit in it. So I think maybe 30 mins is long enough for me in one go !

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