First post, my story

Alicia_03

Hi, I'm Alicia. At age 17 I was diagnosed with Rheumatoid arthritis and it's taken me 3 years to have the courage to even open this website! I felt like looking at this site meant admitting and accepting that this is a condition that is very real and that I will have for the rest of my life. However now I have realised just how isolating this condition can be and how this might really help me to share my experiences and read others!

It took doctors a long time to realise something was wrong. It started with realising I no longer had the hand strength to open sealed bottles or stand up from sitting on the floor. I finally realised something was seriously wrong when one day I woke up to my hands being completely inflamed and stuck in a claw like formation, along with my knees being stuck bent. The nail in the coffin was seeing my 80 year old grandma with Rheumatoid arthritis manage to open a sealed bottle that I couldn't which flicked a lightbulb in my head. It then took weeks of crying and begging to be seen by the GP as it was during covid and they didn't want to see me in person. Thankfully now my arthritis is somewhat under control. However I cannot remember the last time I wasn't unwell or in pain. I have had a consistent cough for months now. I think due to the methotrexate and hydroxychloroquine suppressing my immune system.

The rheumatologist has been pressuring me to switch my methotrexate from pills to injections and has also suggested I try adalimumab however I'm very cautious about starting with needles as I don't know if I'll have the mental strength to do it myself and I've heard of bad side effects. It's taken a long time to get used to regular blood tests and now I'll have to inject myself weekly?? I've tried Rituximab IV drips which took shifts of 7 and 5 hours twice. I don't know if I feel much difference from them. I'm keen to hear peoples experiences on injectable meds and maybe make me feel less scared to try them…

Last December I was hospitalised for a week due to being neutropenic (lack of white blood cells). I had never felt so alone and depressed in my life. In a white room with the constant beeping of machines and several blood tests a day, lying next to old people wondering how I got to be so unlucky as to being 19 and stuck there.

I always try to remain upbeat and not let on how much I'm struggling to those around me however I often find myself struggling in silence and neglecting my mental health. So I'm hoping to connect with people here. I don't know anyone similar to my age with arthritis. I'm 20 and at university. I would love some advice or just be able to talk about my condition to people who are going through similar things… Thanks for reading :)

Baloo

@Alicia gosh yes. When I was admitted to the acute ward it was a mixed blessing. On the one hand the treatment was second to none, it was like falling into a nest of angels, and on the other hand having to share with others in acute conditions moaning and groaning. Looking back it was actually a whole range of conditions and ages.

jamieA

Hi @Alicia_03

I don't know if my experience would be relevant to you as I'm at the other end of the age spectrum - I'm 68. Like you I took ill during covid and was diagnosed with a different inflammatory arthritis - psoriatic arthritis - in October 2020. Like you it quickly affected my hands - as well as my shoulders, hip, knee and ankle. Like you I also ended up with a blood problem - though in my case it was anaemia due to a lack of red blood cells.

I know everyone is different and how they respond to drugs may also be different so my experience may not be how you respond. I was started on sulfasalazine which didn't help and then methotrexate was added and the combination didn't work. Finally the adalimumab biosimilar Amgevita was added and the combination of the 3 drugs has helped significantly. My rheumatologist describes the drugs as working synergistically. I'm not cured by any means but I am far more functional - I'm now walking my dog 50-60kms a week whereas before adalimumab I could only walk with 2 elbow crutches. I've had a few flares in the last 3 years and my rheumatologist has prescribed steroid injections and the flares have dissipated.

I've found the adalimumab injection fairly easy to do - it's every 2 weeks which I think is the norm. Mine is provided as an enclosed pen - like an epipen - so you don't see the needle. I find the injection itself is a little uncomfortable - a bit like a nip but nothing more than that. I've not had any side effects of adalimumab in the 3 years I've been on it. I do recognise that adalimumab and MTX leaves me immunocompromised and I just make as sure as I can that I don't leave myself open to catching anything. I don't eat any of the foods that are proscribed, I try not to get into crowded spaces if I can avoid it and I always use antibacterial soap and hand sanitiser. However I still travel by bus and train and my wife and I look after our toddler grandson 2 days a week - with all the exposures that entails as well as having a dog.

I hope adalimumab works for you and you are able to use the pen injectors satisfactorily.

Baloo

@Alicia_03 @jamieA snap in regards to the cough.

Immune system wise I am fairly certain I have the immune system of a horse. If I catch a cold it clears up in a few days but ever since Covid a cold has been something I don't want, each cold leaves its mark and I don't want it.

The most I do at the moment is don't touch things unless I must, and keep up with the hand washing. I caught one cold since Covid, and it was Covid, and I know exactly how. Just when I seemed invincible, my supervisor was unwell, and I picked up the fidget spinner on his desk. Big mistake.

Can I suggest Alicia_03 if you find someone you relate to in searching the posts, maybe take the bull by the horns and introduce yourself in the messages icon. Or jump into the young peoples community. There are folks in there diagnosed from age ONE. Excuse me now but I need a moment.

Naomi33

Morning @Alicia_03 and welcome to the online community.

Sorry to hear your concerns and glad others have reached out to you.

I personally had a fight at the beginning and was advised to take photos and log all my flares up which I did as evidence. This helped me get to where I am today !

I was put on hydroxychloroquine which settled me down a lot but still had flare ups. I was having steroid injections to help through them. Three months ago I was put on Methotrexate injections after 12 weeks blood test came back with liver problem so off now to see if he corrects itself and taking daily folic acid.

Keep positive and keep posting you are not alone ❤

Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

Best wishes @Naomi33

Woofy

crikey Hun, you have had a rough ride through your teens.

I was diagnosed with RA two years ago, I am now 66. I have been doing the methotrexate injections for 8 weeks.

The injections are easy to do, you can’t even see the needle, and I promise you I don’t feel the needle go in.

I do feel a little stinging sensation after it’s done, but it passes after a minute or so. The hardest bit is getting the used metoject pens in the sharps box lol. Bit of a tight squeeze. Go for it. My rheumatology nurse told me the methotrexate injections get into the system a lot quicker, as they don’t have to bypass the stomach as with tablets. It was weird doing the first injection, but I just sat at the kitchen table with a cup of tea, read the instructions twice, then went for it. I was quite proud of myself.

I reckon you’ll be fine. I bought a pretty wash bag to keep my injections in along with some medi wipes to clean the injection site, and some little round plasters.

MollyABE

Hi @Alicia_03

I’ve just turned 29 and was diagnosed with inflammatory arthritis just over 3 years ago and like you avoided this website at all cost until recently, I haven’t posted much but actually just being able to read other people’s experiences with meds/docs or just tips on dealing with everything has been so helpful and 100% makes you feel less alone!

In terms of medication I’ve been on hydroxychloroquine since the start but then due to the worse flare up to date a year ago, a whole load of steroids and trying so many different anti inflammatories and anything and everything under the sun to get over that flare, I was finally prescribed MTX which I started in Jan of this year, I started taking it orally but for me the side effects were awful even with taking folic acid 6 days a week. I moved to the injections in June and like yourself super nervous, hate blood tests and just thought I wouldn’t be able to do it, but honestly don’t think of it as an injection, you don’t see the needle, you press it in to your leg and there is a little click and it’s done! The nurses will go through it all with you and there is a really helpful how to video on the metoject pen website. Honestly it’s now just part of my Monday evening routine I hardly think about it and feel like a pro at blood tests as well now!

Hope this helps :)

Hope767

Hi @Alicia_03

I’m glad you shared your story, it is hard opening up at first but there’s so much support here for you ❤️

I wanted to let you know I agree with @MollyABE and @Woofy .

I was diagnosed RA in March this year , I tried methotrexate orally for 10 doses and found the side effects awful.

Given I was taking steroids and NSAIDS orally I decided to protect my digestive system from the further task of processing Methotrexate.

So I opted for injections. I was concerned about having to inject but I can honestly say the design of the pen is brilliant (doesn’t even look like a needle) I don’t feel it going in. Sometimes there’s a little feeling afterwards (like a very mild sting) which is gone in minutes!

I imagined the injections would be a million times worse but the reality is it’s quick , easy and relatively painless.

Wishing you success with your University Studies!