Hospital visit.: Well i just got back from my rheumy... - NRAS

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Hospital visit.

sylvi profile image
18 Replies

Well i just got back from my rheumy appointment. I saw the consultant today and things will be changing. He is reducing my steroids from 2 to 1. Mt mtx is being raised to 10. He wants me to reduce my sulpha as well. My amitryptaline he wants me to come off it over time.

I have told him every dr i have seen thinks my weight is no problem and my joints are the RA. He says not as my bloods show that it isn't RA. He is going to get me x-rays done on my hand and my ankle and he is going to order a scan on my hand as well. He wants me to go to an eye clinic and an obesity clinic as well. He also thinks i might have sleep apnea. I'm not sure what he is going to do about that. He is sending a letter to the drs and he is sending me a letter as well.

Well thats me all done,we will have to see when things start to change. I will make a appointment with dr when i get his letter.

Hope everyone is painfree and happy.

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sylvi profile image
sylvi
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18 Replies

With the sleep apnea, I think you have to go at the hospital in a special room where you are monitored on your type of sleep. At least you are getting scans and x-rays to on your hands and feet, you will at least know what is going on there.

As to weight watchers well we could all do that, one of my previous blogs was about Blood Pressure. Speaking to my sister (she was a great weight at one time), she advised me to loose some weight as her bp came down when she lost her weight. Maybe we ought to set up a blog for loosing weight, and see how much we can achieve in weight loss all told. No cheating mind! My problem would be weighing I threw my scales out years ago, and only weigh when at the hospital.

I think all told you appear to have had a positive meeting today, rather than negative. Has it made you feel more positive and upbeat than you have been feeling off late? I know your pain threshold has been at rock bottom with your knee along with the rest of your body, so we will discount that score.

Take care my friend. xx

sylvi profile image
sylvi in reply to

Georje, yes i feel more positive as things seem to be happening instead of being told i have ra. I don't possess scales either. I would always be on them anyway. I feel ok regarding my mental side of things and i have been told today by the nurses that i look so well. Yes looks are so decieving aren't they. My rheumy also suggested i try and get a left handed mouse,is there such a thing. I feel so much happier than i have been.

Sleep apnea,now that would be interesting. Obesity clinic, do you think i might get a gastric band out of it. Now wouldn't that be something!!

Take care, love sylvi.xxx

in reply to sylvi

Yes there are left handed mice, I used to order all the stationery items for work so know they are about.

Gastric band, you have to go through far more tests than ob. clinic. they are not the quick fix everyone thinks unless you pay privately. This was what helped my sister to loose weight, she had hers done on the NHS but it took five years, by aiming to loose a certain amount herself to prove that she wanted to do it, psychology tests which found the root cause of her problem, gym work, before finally having the operation. At one point she was on Meds, for BP, diabetes type 2, water tablets, epilepsy, tia's. Since the op she has lost a further eight stone, and off all medication, although will be classed as a diabetic for rest of her life. The downside is she has lost the funding this year for her 'tummy tuck', where she would loose another two stone straight away from the 'apron'. Her surgery is fighting her case, to see they can get the funding back, as they say she has done everything that was asked of her. The impetus that made her want to loose the weight, her first granchild, when she saw her that was it, a reason for living again, suffice to say up until that point her life ....................... another story and not for this open channel.

Good news that your mind is in a good place now.

Take care and enjoy the rest of the day. xx

sylvi profile image
sylvi in reply to

Georje gastric band is just a pipe dream really i can't see that happening. I am pleased your sister has had success with hers.

Love sylvi.xxx

allanah profile image
allanah

good news about trying to get the steroids down, that usually helps me lose a bit of weight. and the increase in the rheumy meds too, heres hoping this does the trick for you. Ax

sylvi profile image
sylvi in reply to allanah

Yes Allannah, i will be glad to get off them as they are the reason i am so big. Overall a positive appointment. Sylvi.xx

Sylvie, you can usually change your buttons on your mouse from left to right by going to your control panel on your computer and you should find a box with mouse buttons where you can choose which side you want.

Good news with all the other stuff re your meds. Weight is my problem but I can't see me losing much any time soon!!!

All the best

Love

Carolyn x

sylvi profile image
sylvi in reply to

Thank you Carolyn, i have just done it. Your so clever. I can't see me losing much weight either.

Love Sylvi.xx

sciqueen profile image
sciqueen

Hi Sylvi

I think reducing the steroids and eventually stopping will help with the weight loss over time (its not immediate). I think I am slightly lighter and my moon face has reduced significantly. I think steroids make you bloat as well and that was the first thing I noticed as I did not look so big in my dresse's at the front - so my shape improved considerably.

It sounds as if its good news all round, with the reduction in drugs. I hope the sleep apnea peps can help you, but peps on here will miss your twilight blogs :D

Good luck with your gp when the letters come

Take care Joanne x

watson3 profile image
watson3

Glad you had some positives from your appt. I agree when you decrease your Steriod dose, your weight will also decrease.

Hope your mood stays light and calm.

Love and hugs to a diamond friend. :-)

sylvi profile image
sylvi

Thank you ladies for all your kind comments. I am looking forward to being a bit thinner at least. Carolyn showed me how to change the buttons on my mouse so i can use it in my left hand,boy is it hard to do. It is going to take a long time to get used to it. Thanks everyone. Sylvi.xx

sheenerweener profile image
sheenerweener

wow i thought it was only me that gets told loads at appointments that sure was a load for you to take onboard think you shoud have a little get away to get over it bless ya not always easy losing weight when you can hardly move some days? good luck with it all and hope you stay your lovely happy self gentle hugs xxx

earthwitch profile image
earthwitch

re: the mouse - if you go on amazon and search for "3m vertical mouse" you will find one that is a whole lot easier to use than the traditional ones. I can't get used to a left handed one, but the vertical one is wonderful. There are also loads of other types of "mice" that you can use with disability as well - you might want to see if you can try out a roller-ball one too.

I got to try some of these at my local college (the disabled students support person had some to try). You could always phone them and see if they could let you try them first before you buy, or at least suggest where you could try them.

sylvi profile image
sylvi

I have been trying using the mouse in my left hand, have to say its not easy. This is only the first time i have tried this way. We will see how it goes before i switch it back to my right hand and then i will look at other types of mouse. If only there was a way that would stop me pressing the wrong buttons all the damn time.

I am being upbeat and hopeful.

love to you all. Sylvi.xx

Sounds like a very interesting appointment and yes, you'll find out in time whether your Rheumy is taking things in the right direction.

So glad that you are having x-rays and the scan and that you're cutting down on the steroids. I know you just keep going despite dreadful tiredness & the sleep apnoea line is so interesting, if it explains your tiredness and they can fix it that would be brilliant wouldn't it?

And maybe weight loss will be easier on a lower dose of steroids?

All the best to you Sylvi,

Christina xx

sylvi profile image
sylvi in reply to

Thanks christina, just got up and the swelling round my knee is very sore and iot nearly let me down this morning and i know its not the joint that is letting me down. I would liike to think its the answer,last night i slept very well and i only got up once i think for the loo.

Perhaps with the steroids gone i might actually lose weight.

Love sylvi.xxx

helixhelix profile image
helixhelix

I'm really glad for you that consultant is thinking about what could be better for you, and not just leaving you to continue as you are with pain, and poor sleep and so on. I've managed to lose 2 stone in past few months, mainly just by being a bit more careful about what I eat, and being off the steroids certainly helped so I hope same applies to you as it does feel good not to be carrying quite so much around with me. Polly

sylvi profile image
sylvi in reply to helixhelix

Polly, i had a good day yesterday, today i'm back to square one again. I am so out of sorts. I endd up hitting my head in the car and that finished me off so i wept. Now i am home having ben to the hospital to get my x-rays done and my daughter has got to have her colonposcopy done again so we were down there with her for her pre-op clinic as well. I think i have overdone it again today. I have been to bedworth to get some money out of the bank and then i went up the village to pay the council tax and get the lottery and pay my papers as well. So all in all i have done too much i think.

Yes i hope coming of them steroids will certainly help. He told me so much yesterday that i can't remember half what he said.I would be very happy to lose 2stone so well done to you.

Love sylvi.xxx

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