Rheumatoid arthritis advice please

Hi. Sorry to hear you have this horrible condition.

I was diagnosed in 2020. I was crippled at first. It took 18 months to get on the right dosage of Methotrexate - 25mg injections once a week. I’m now pretty fit and well. That 18 months was dreadful. I was in constant pain, couldn’t do anything for myself. Squeezing toothpaste from the tube was even impossible.

I’m grateful every day and exercise regularly to keep as well as I can. I do hope you find the right medication for you soon.

You are really going through it aren’t you?
I have no personal experience of RA but my DH was prescribed Rituximab some years ago for Lymphoma and it worked perfectly.
D3 also suffers from Psoriatic Arthritis, diagnosed 10+ years ago and did a 5 year drug trial of (I think another) “-uximab”, ie monoclonal antibody and it was like magic. Her Psoriasis disappeared, she was no longer in pain, and stopped limping , it was amazing.
Best of luck!
These”-uximabs” sound like a wonder drug.

My DD has Retuximab infusions every 18 months or so. The infusion make take several hours so a good book recommended! In her case an anti histamine was given at the same time which may make you sleepy.

I have had RA for nearly forty years.

I self inject weekly with biologics, as my RA had become unmanageable. Weekly injections are more suitable than infusions for me.
I am on my third type, as I can only tolerate them for so long, then need to change, due to sensitivity to various medication.
They were a game changer! However, I still suffer dreadful pain, but much less than previously.
Recently, I had to take break for medical reasons, and my RA spiralled out of control. I then realised, that they were indeed dampening down this cruel disease

Initially, you will probably experience side effects, but don't give up. You cannot expect miracles , nor improvement immediately.
It took about six weeks for me to get used to them and start to feel the benefit. A kind Gransnetter talked me through what to expect, including awful night terrors, where I was convinced, Mr MD was trying to kill me.

You will find that there are many on here, who have RA and are always willing to offer advice and support.
I am fortunate in having access to a team of specialist RA nurses, who are at the end of a phone and alert my consultant if necessary.
I wish you all the best with your new treatment.

Thank you everyone who replied, really appreciated. Am I being unrealistic in hoping that if I find the right drug I could be pain free? As luvlyjubly mentioned it would be nice to be able to squeeze a tube of toothpaste again without terrible pain and pick up my grandson when he puts his arms up .

I have times when I am pain free or have minimum pain. In saying that, I have to take opiates to ease the pain.

The nature of the disease is that it can be unpredictable and one has to expect flare ups and pain.
However, I think you can be optomistic and expect a better quality of life.
I eventually went from wearing hand to elbow splints and ankle supports, to wearing no appliances!

Oldmum33

Thank you everyone who replied, really appreciated. Am I being unrealistic in hoping that if I find the right drug I could be pain free? As luvlyjubly mentioned it would be nice to be able to squeeze a tube of toothpaste again without terrible pain and pick up my grandson when he puts his arms up .

You are not being unrealistic. I take Methotrexate and also inject a monoclonal antibody, Adalimumab, every 2 weeks. Apart from the odd little flare-up which lasts a couple of days, I am pain free and can lead a normal life.

Thanks shysal. I am currently on exactly what you are on and the pain, swelling and exhaustion continue to get worse. I work full time and every step I take is like walking on pebbles, I live on painkillers to get through the day and fall asleep as soon as I get home and can sleep 12 hours. I feel like I have lost my old life and have moved from a healthy, youngish 60 year to an old woman.

No two patients are the same. Look at Shysal and I. It is a case of trial and error and tailoring the treatment to the individual patient.

My RA has been very difficult to manage and at 59, I had to retire from teaching on health grounds. I was like you Oldmum.
I thought I was useless and would never lead a normal existence again.
I now have my life back and so will you! 💐

The '------ab' biologic treatments are miracle drugs as far as I am concerned. I have moderate osteoarthritis in my knees, and the Adalimumab has not only calmed down the RA but taken away all the knee pain! There are several different ones to be tried, hope they will find one that works for you.

Thank you Marydoll and shysal, you give me hope which I haven’t felt for a while. Feeling useless is a real killer on top of the pain and exhaustion. Roll on the new meds!!

I agree that the new RA drugs are a miracle. My daughter developed RA at about 45 and her consultant told her they treat it fast and aggressively to avoid damage to the joints.
She’s on weekly injections, has no pain and no mobility problems.
When I had a hip replacement at 50 for osteo arthritis I thought the only options for any arthritis were Ibuprofen or surgery. I didn’t know what research was being done, it’s wonderful.

That’s wonderful watermeadow! Unfortunately the weekly injection of methotrexate plus bi weekly injection of amgevita haven’t worked. Fingers crossed for the next drug.

I was diagnosed with psoriatic rheumatoid arthritis in my forties, after years of exhaustion, swollen joints and negative blood tests
I took increasingly large doses of methotrexate until I was 61 by which time the effectiveness had gone
I retired on health grounds after twelve months of constant pain and fatigue behind description, I was prescribed Humira, one of the new injectables, along side a lower dose of methotrexate. It was like a miracle, within a month I was walking my dog three miles,

Sadly, I reacted to the Humira after a year. Was off biologics for a year while I recovered, then prescribed benepali another injectable biologic. I stopped methotrexate about four years ago, it always had me feeling hung over three days out of seven,
I’m so grateful to the nhs and the rheumatology consultant and her team. Initially I was anxious about side effects. She convinced me this aggressive disease needs aggressive treatments.

Good post, Iam!.

I recommend a book called "Treating Arthritis: The Drug Free Way by Margaret Hills. I used this many years ago when first diagnosed with RA and found the diet advice really made a difference.

Thank you everyone for such sound advice. My only worry going onto Rituximab is it can have a (rare) side effect of loss of sight which is my worst fear. Have any of you been on it and if so what were the side effects? My RA nurse also mentioned IL6 drugs could be an option. Any thoughts please?

Hello there, I have had RA since the age of 26 and been through numerous immunosuppressive and biologic treatments during that time. After 40 odd years I was prescribed Rituximab infusions every six months and it was amazing, put me into remission. unfortunately I have lots of joint damage and surgeries but the inflammation has gone. Higher risk of infection as with all these drugs, but so grateful for Rtx. Good luck.

I agreed to try an R.A drug called Leflunomide, I has reservations, but was desperate.
It turned out, I was allergic to it, ended up in A&E, with a severe reaction and a silent heart attack, after taking only one tablet.

I don't regret trying it, it is the same with taking biologics. Initially I was wary, but weighed up the pros and cons.

I am on my third biologic, because I can only tolerate them for so long. However, I am glad I made that choice.
All medication comes with risks and only you can make that informed decision, by researching all you can and discussing it with your clinicians. It is your choice, no-one else's.

Hello Marydoll, it’s always good to meet up on these discussions. We keep on with a positive attitude and smile as often as we can x

Thank you for all the stories and advice. Seems it’s all trial and error and what doesn’t kill you could help you (grin).

Iam64

Hello Marydoll, it’s always good to meet up on these discussions. We keep on with a positive attitude and smile as often as we can x

❤️

Oldmum33

Thank you for all the stories and advice. Seems it’s all trial and error and what doesn’t kill you could help you (grin).

That’s exactly it Oldmum33. I trust my consultant. When I suggested using diet to control the disease, she said worth a try but remember there’s no blanket advice, we all react differently to food as we do to drugs. Take the meds as well - it’s an aggressive disease, needs treating aggressively. I’ve not ever had a patient in a wheelchair and I don’t want you to be my first

I have had Rheumatoid Arthritis for quite a few years and have always been prescribed Codydromol up to 8 table a day. I rarely take that quantity. Morning and Afternoon I have 1 tablet .At teatime I might have 2. Bedrooms is always 2 tablets