I have had RH for 3 years, and I am getting worse.
I attended the hospital every 6 months, I have been on 13 different medications and nothing has worked tablets and injections.
So just now I am on rituximab, this is done by infusion you go to the day unit, I have had one round of it already last year it never worked, you get it twice with a fortnight apart.
So I back again getting more, I have been for one and tomorrow the other one.
I suffer from severe fatigue, I have stopped going out as I don’t have any energy , sometimes don’t even want to eat, as I don’t have any energy for that.
My family tell me I am going down hill.
Just because I am like this, it’s not everyone is.
I can not praise my doctors at rheumatoid clinic enough , they are trying, one day they will find the right medication for me 😊
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auldreekie2
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Welcome auldreekie2, I am glad you have found this friendly informative group.
That is a lot of different meds to have been on in 3 years. Sadly it does take some time for some of us to find the right meds or combination that works for us. Heres hoping that Rituximab is the one for you.
If you type Rituximab into the search box and filter it for NRAS you will come up with posts from people on that and of their experiences. Good luck 😊
I feel your pain here. My RA journey is very similar. After my 4th infusion (about a year into Rituximab treatment) I am happy to say my blood work is all coming back great and I feel much better. I hope your body decides to kick itself into action soon.
Hi Auldreekie were all in this rollercoaster together ,hopefully this is the magic one ,I’m on my 4th biologic An-acterma (Toxilminumb) alongside methotrexate 20mgs so here’s hoping this is the one for me, I get you regarding the fatigue I can get it quite bad as well and you just haven’t the energy to do anything good luck
Hi Auldreekie. This awful disease makes life hard for us but most on here are determined to make the best of it.
I’m on Rituximab too and due my second cycle in a week’s time. My consultant told me the second and subsequent cycles often work better than the first. Here’s hoping for both of us! 🤞🏻
Someone here suggested increasing my vitamin B12 intake to counter the fatigue. It made a big difference for me and hope it does for you too.
Hi Lolabridge, my consultant told me that as well, so fingers crossed, if it doesn’t work least I got mushroom soup and a sandwich out of it, and a cuppa for my lunch 😄
Your consultant is right....I’ve been on Rtx since 2016 & the first duo of infusions only had minimal effect....but thereafter everything fell into place, & now I rarely need any painkillers....& biggest bonus of all- no side effects!
On my rheumy’s advice I use a VitD spray between October & April...otherwise I need nothing except the Rtx.
I look at my Rtx day as a Duvet Day....feet up,cuddle under nice cosy blanket & have someone briing me tea & biscuits plus soup & a sandwich for lunch!
I think twice every six months is a nice little break.
Hope your October Infusions set you up well for Christmas🎄!
My B12 got tested it came back ok, so I could not go on injections for that, a couple of months agothe GP put me on iron tablets, no joy with that, it’s just all part and parcel of having RH , your body is fighting this infection all the time, my doctor informed me .
Hi Auldreekie - loving your positive spirit despite what you are going through.... I too have had RA nearly 3 years, it seems like yesterday 😗- I have been on 7 biologics 😬
Although I still have symptoms things are bearable. I just let my body do it's thing !
You shall get that magic mix - a lot of us on here have been where you are, so don't despair.
I found becoming my own consultant works for me -from meds to food to lifestyle. Wishing nothing but wellness! 😌
Thank you every one, it’s so encouraging, the good thing is we all understand what each other are going through, I read on line, 3 ways we can get RA bereavement, virus or we inherited, I think we’re i am concerned, it was brought by a virus, or maybe bereavement. It’s a funny illness, I tell my GP I am healthy apart from having RA, she just laughs.
Also one good thing about having RA, it made me stop smoking 😂
Hello auldreekie2 welcome and staying positive can be hard but a key thing to me so on a bad day I always try to find something to laugh about. It was also good to hear you are with good Docs as this too helps.
Checking in on this site has been a godsend for me.
Oh you sound like you've gone through loads. Fatigue aspect of the condition cannot be
underestimated, we all get it. Even trying to get mental energy to get ready to do simple things, trips is hard for us.
I was sent a booklet about managing pain which had good practical tips for me, especially how to pace myself. I'm having to be very disciplined about stopping an activity way ahead of my usual time.
One problem is my brain is still in youthful active mode when my body isn't.
Family expressing you're going downhill born of concern so hard for love ones watching us struggle. I sent a link to my hubby to help have insight & knowledge how to assist.
Now I have a "to do@" list of 3 things and tell myself well done if achieve 1 . Things like empty & reload dishwasher, get clothes or bedding wash done, cook a meal from scratch, meet friend for coffee.
Research and use as much help from support orgs/groups as possible.
Hi aukdreekie2 I don’t often post anything on here but just wanted you to know I have had RA for 36 years and am now on methotrexate which has worked for me. I had tried different meds over the years but was allergic to most of them. Unfortunately my feet have been damaged which happened before I was put on methotrexate and I’m waiting for a foot operation but apart from that and tiredness I am not too bad. I wanted to reassure you it is possible to live with this horrible disease and have a fairly normal life. I hope you find your meds start working and please don’t despair as it takes time for your body to accept them. Take care.
I too have had this disease for 3 years my husband has told me that I’ve deteriorated massively this year. Fatigue!!!!! A word that doesn’t even come close to explaining it.i try to exercise a gentle walk exhausts me anything more wipes me out. 2 spoons of a meal I need to sleep. Joints painful and stiff all the time. Meds not working need some tests before I have anything new. A 🤬of a disease
Hello All, thank you for your messages, so today I was going to get my last infusion of 2, I could not get it, as my temperature is high and heart not right, so I could not get it done, came phoned my doctors surgery, went along she could not find anything wrong, apart from the heart, so I could not get any antibiotics. And the thing is I feel fine, don’t feel ill, so I don’t know.
Welcome to this wonderful blog pf people with the same struggles and we all encourage each other. Nive to have you with us and may the drs continue to find the right treatment. 😊
My fatigue comes and goes, sometimes for a long time sometimes a short time. I’m sure some people it goes completely for. That’s the frustrating thing, it affects us all differently.
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