Rheumatoid arthritis advice please

Thanks Scotsmum, seems you already had a LOT to deal with and then hit with RA - really sorry.

The steroid injections were like a miracle the first few times I had them but now don’t seem to have any effect sadly.
I had a review today and I’m now being changed from the adalimumab injections to rituximab infusions. The strange thing is all my blood tests come back clear of the inflammatory markers but my joints are swollen, red and very sore, struggling to walk atm as I’m walking on sharp pebbles! I should hear this week when m6 first infusion is.

Please keep me updated on how you’re getting on with the infusions, I live on my own with no family near by so just as well you alerted me to the fact I may not be able to drive myself home from the hospital!

So good to hear so many people’s stories and experiences.

Marydoll - it’s always positive when someone finds relief. It’s important to remember, these awful auto immune diseases have periods of remission, only to return with vengeance

That's excellent that this lady has found relief.
However, as RA is a systemic condition, which not only causes extreme fatigue, brain fog, but attacks interal organs, I can't really see acupuncture helping with this.
Sadly I know this from experience.
Presently, I am awaiting scan for digestive issues, possibly related to my RA.

A local person who has RA has had her life transformed by acupuncture. She has a treatment which seems to remove most of the pain and stiffness, and lasts for a time. When it is wearing off she goes for another session. Obviously this won't work for everyone, but I thought it worth mentioning, as she has had such relief.

This topic has come at the perfect time for me. I was told by my new rheumatologist that I had RA, just 6 months ago: nobody had ever told me.

I already have Hashimotos Thyroiditis and Sjogren’s disease, so one more didn’t seem like a big deal. I know better now. I had been on a trial of methotrexate for several months last year, but as a pp has said, it left me feeling like a zombie for three days after the injection. I had extreme brain fog and even more fatigue than usual. I was sorry to have to give it up because suddenly I didn’t need the hand splints - and still don’t, a year on, plus the Rosacea cleared up.
My then consultant proposed leaving me on my regular Hydroxychloroquine so when I expressed my unhappiness, she offered me a trial of Leflunomide. I can tolerate this on the lowest dose.
New Dr also gave me Pilocarpine for the dry eyes but it doesn’t agree with me and so I stopped it

He then organised a long lasting steroid injection to tide me over until he could get approval from the review board for me to have an infusion of Rituximab. He also told me to ring to get another one in six weeks when it began to wear off, which I duly did.

It takes a long time, my first infusion was about 7 hours. I was told that this was a safety measure because reactions were so common. It would be quicker next time. Pre-meds were paracetamol, antihistamines and some more steroids . The antihistamines knocked me right out. I’d been told I’d be fine to drive myself home after but I had to get my husband to get the bus along and drive me back and went straight to bed.

I was very drowsy for a few days but then I was fine. Two weeks later - two weeks ago - it was time for the second half of the dose, and it was quite a bit quicker. Still had my husband on hand and had the same drowsiness as before.
The very next day I went down with a cough, cold, sinusitis and then conjunctivitis. I’m barely able to see to type this 😂 the joys of autoimmune!

Best of luck @oldmum33, keep us posted.

Good to see many of you with positive results from your medication.
It's always a trial and error process with lots of lag time whilst we wait to see what works, but new drugs are being identified all the time, so don't give up hope.
Please look at NRAS.ORG.UK for information on meds and other aspects of living with RA.

My daughter has Crohn’s arthritis, which is similar to - these autoimmune diseases often seem to overlap. Biologics have helped her at times - she has tried almost all of the ones licensed for treating Crohn’s. Sadly she is one of those unfortunate people whose disease is very resistant to treatment.

They can be amazing and I wish you the very best of luck with them. Side effects seem fortunately rare, but like others have said, your body builds up resistance to them and they stop working after a few years. Luckily though, new ones are being developed all the time - they are widely used for treating cancer.

New understanding of autoimmune diseases is emerging as a result of research into cancer and hopefully new treatments too.

That's very interesting ZoeB, but when you take certain painkillers, for example ibuprofen, you have to take them with food or risk a tummy bleed, which can be fatal.
Sorry to be so depressing, but it does happen.

I've been living with RA for several years and rarely need meds now. I spotted a paragraph in a Michael Moseley book (can't remember which one now) which suggested fasting and, being desperate, I immediately fasted for 5 days and all my symptoms disappeared....I could walk downstairs in the morning, turn on taps etc. I continue to only eat once a day and manage my symptoms reasonably well.
I have also had a food intolerance test (Yorks) and discovered a lactose intolerance which apparently 70% of grownups have and avoiding lactose has increased my grip strength and eased my symptoms too.
Worth a go, I appreciate it won't work for everyone but it's changed my life for the better.

Some of these medications are like knock out drops, but better than the pain.
Have you never been offered steroid injections, just to give the tabs some time to work?
You all deserve some flowers.

It takes time to get the medication right - I inject Methotrexate 17.5mg weekly on a Monday and now take folic acid 5mg on all other days - that has helped increase my energy levels. I also started yoga and Pilates - both classes are gentle ones and they have helped with mobility and balance. I have good and bad days and flares but slowly realised the need to listen to my body and on the bad days rest as the fatique and pain is high and then enjoy the good days - I hope the medication starts working for you soon

I am 73. I was diagnosed with RA 46 years ago. I am on biologics and have been for about 15 years. Currently I am on Rinvoq. Unfortunately joint damage because of the inadequate medication available in the early years. Elbows both replaced, wrists fused, one knee replacement other one planned, both feet rebuilt. I cannot stress more that if you are offered biologics take them as they definitely help to stop joint damage.

Thank you Marydoll. You really have been through the wringer with this awful disease and have a huge knowledge on all aspects of it. The brain fog is another scary part of it, I have always had a good vocabulary but these days I struggle to find simple words which scares me.
Good luck with being a guinea pig next week, you will be helping the students to better understand this disease!

Good points to Fidelity, Marydoll

I’ve been the guinea pig for medical students a few times. It’s great to see some doctors being given training in spotting our often invisible but dreadful disease

Fidelity, Codydrojel is a painkiller, do you not take any disease modification medication specifically designed for R,A.?
Pain relief does what is says, but does not manage the actual condition.

RA is a systemic disease, which attacks the whole body, not just joints and RA medication helps to dampen down the disease and lessen damage.
In my case, RA has affected both my heart and digestive system and my lungs have to be monitored for fibrosis, which is terminal.
Also the brain fog and debilitating exhaustion, wefe awful, until I started biologics. It took about six weeks, but the improvement was amazing.

I had a break for a few months recently, because my clinicians were trying to work out, which RA medication was causing serious side effects,
You don't know what you've got until it is gone! How I missed them.

Going off piste, I have been invited by my GP to be a guinea pig next week for medical students, to discuss my condition and examine my joints.
I am extremely fortunate in that my joints, although extremely painful, show little signs of outward damage. You would never know I had RA, until you examine my hands and detect unseen nodules.
It should be interesting. I have done this for a number of my conditions and the university trainer and I are now on extremely good terms! The last time he burst out laughing, when he saw it was me again. 😉

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

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

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

❤️

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).

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

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 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.

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?

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.

Good post, Iam!.