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Managing a RA flare-up

(31 Posts)
Seabear Thu 31-Oct-24 11:09:29

I have had rheumatoid arthritis for many years, mostly managed successfully with medication. However I'm currently in the midst of horrible flare-up which I can't attribute to any trigger in particular. Fortunately I'm retired, and I've got an appointment with my rheumatologist in a couple of weeks, but if you have RA how do you manage this? It hurts to hold a book, I can't garden for more than about 10 minutes, or use a pc, or bake or drive comfortably or walk very far, but if I sit still for too long and binge-watch telly I sieze up. It's really miserable. sad

Iam64 Thu 31-Oct-24 11:19:07

I’ve been there a few times Seabear. Each time my meds have been tweaked, to good effect. The last bad flare was 12 years ago and stress related. I was just as you describe, every aspect of life restricted, constant debilitating pain and exhausted no matter how long I slept.
I managed because my husband took over and I lay around. I’d fall asleep about 2pm on the sofa and didn’t wake till 4 when I’d feel groggy and exhausted. I was reviewed and prescribed the next level of drugs, injectable biologics. It changed my life by modifying and controlling this aggressive disease.
If you’re already on them, maybe your rheumatologist will switch it

Meanwhile I think you’ll have to be advised by your body and rest but try and fit in short walks, fresh air, eat well and try not to feel wretched. Best x

Marydoll Thu 31-Oct-24 11:26:21

I'm just out of the surgery, being interviewed by students about my RA.
I too am having a flare up today. I'm on my third type of biologics and was doing well. Something has triggered off a flare up, every joint aches.

Ditto to what Iam has said.
Biologics have changed my life, just not today.
Good luck with your appointment.

Iam64 Thu 31-Oct-24 11:28:13

Marydoll, do you find the changing seasons affect it>. I’m achey, stiff and tired and this often happens in autumn and spring.

madalene Thu 31-Oct-24 11:30:17

Get well soon Marydoll flowers

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Iam64 Thu 31-Oct-24 11:35:12

Reported irritating scam on an important thread

madalene Thu 31-Oct-24 11:36:12

Thanks Iam

Georgesgran Thu 31-Oct-24 11:36:19

REPORTED!!!!

Shame to derail such a worthwhile thread!

Seabear Thu 31-Oct-24 11:52:02

Thanks for all your comments (and I hope all the spam gets deleted) I've been on a biologic for a year and it's been wonderful, which is probably why I'm so down at the moment sad

Liaise Thu 31-Oct-24 12:12:44

We have just had our kitchen replaced. I think it has caused my RA to flare with the work and stress involved. I am lucky that Naproxen seems to help. Try not to overdo things and take life more slowly. DH has taken over more of the running of the house and garden. Delegate if you can.

Iam64 Thu 31-Oct-24 12:53:54

Sympathy Seabear. I developed a significant rare reaction after twelve months on my first biological. One in ten thousand and I was the one. I’d felt so well, sleeping without pain waking me, active again. My biologic was stopped and I had a miserable year during which the reaction thankfully disappeared but the flare up returned. Then another biologic and so fat, so good
I have to bite my tongue when people tell me oh I know how you feel, I’ve got arthritis in my knee 🌞🙈

crazyH Thu 31-Oct-24 13:16:56

My friend has had RA for the past 40 years. She has an injection once a month , on top of other medications - 13 in all. She has also had a heart valve replacement (no connection with her RA).
She travels everywhere - her life doesn’t seem to be much restricted.
One of my sons had Juvenile Rheumatoid Arthritis when he was 10 years old. Naproxen helped him. Fortunately, he has grown out of it. (52 years old now).
So sorry that you suffer from this. The flare-ups are awful I’m sure. I hope you have help at home flowers

shysal Thu 31-Oct-24 13:30:25

I am sorry you are having a miserable time Seabear. Having taken Methotrexate for several years, I have now also been on a biologic, (Adalimumab), for a few months and haven't had a single RA flare up since starting. My blood inflammatory marker has come down from 20 to 7 (normal is 5). I had to miss one dose due to breast cancer surgery and certainly noticed a difference, but that was to the OA in my knees. I was very relieved when the effects kicked in again. I was hoping for a pain free time for the rest of my life so disappointed to read that it doesn't always last!

Marydoll Thu 31-Oct-24 14:25:28

Iam, I too had a rare reaction with my second biologic.

I am now on my third, Benapali, it had started to kick in, but today I am feeling miserable, my whole body aches.

I inject once weekly and also am on the highest dose of Sulfazalazine, eight daily.
I can no longer tolerate any other RA medication or it contraindicates with my heart medication or COPD. One caused such a severe reaction, that I ended up in Coronary Care.
I was totally unaware that RA and heart issues are not uncommon. In fact I was unaware I had a heart condition.

On top of that I cannot have most of the usual painkillers, so I have a Fentanyl patch and eight paracetamol daily.

I had to laugh when this morning, both the student and GP said that I looked so well and certainly didnt look sixty nine!
The student asked what my condition was. Both the GP and I burst out laughing. Where do you want to start?, she asked.

I was just saying to DH, that I think the weather plays a huge part I'm my pain.It is damp and miserable today.

Iam64 Thu 31-Oct-24 15:57:12

I’m now on benepali Marydoll. I have permanent af, picked up when I had a really bad chest infection 9 years ago. So blood thinners mean no anti inflammatories and paracetemol does little.
Good to hear you feel the weather contributes. Chin up 🌞

Marydoll Thu 31-Oct-24 16:09:02

Iam, my R.A twin.😘

When I saw the cardiologist after the Leflunomide episode, he left the room with his team, then walked back in on his own and said: Your RA won't kill you, but the majority of RA patients do die of heart failure. He then walked away without another word.
Talk about being blunt! 😱

Iam64 Thu 31-Oct-24 16:59:46

Marydoll, fortunately that style of consultant is becoming rare. My rheumatologist insisted I take statins though cholstorol was 5, that she said is alright for ordinary folk, but not for you because the biggest cause of death in my patients is heart disease linked to inflammatory arthritis. Needles to say, I took the statins

My diagnosis took 15 years because a series of blood tests came back ‘normal’ despite classic symptoms. I had uveitis/eye inflammation in my left eye when I was 43 . I was seen daily at the eye clinic for treatment and oversight. It was initially astoundingly painful and extremely light sensitive. Treatment was passed back to my GP, who, I told the eye surgeon had suggested the inflammation might be linked to arthritis. His snippy response ‘Of course it is. Your right eye is already permanently damaged and now so is your left. You’ll be registered partly sighted and disabled within ten years’. With that, he turned on his heel and left me reeling. My children were 8 and 6 at that time. My gp was brilliant at reassuring me and here I am doing ok

Iam64 Thu 31-Oct-24 17:00:43

Sorry Marydoll - my eye consultant experience was added as a twin to your cardiology one

Marydoll Thu 31-Oct-24 17:15:09

As was my pain consultant appointment! Horrible man, I refused to go back.
My eyesight is failing too. Secondary Sjogens means I no longer read books. 😢

It took fifteen years to be diagnosed. High doses of steroids for COPD were masking it. I also tested seronegative. Strangely, I am now seropositive.
What a pair we are.
However, we are still here, alive, but perhaps not kicking.

Iam64 Thu 31-Oct-24 17:23:56

We really are inflammatory twins. I have Sjogens along with other debilitating auto immune friends. I had cateract surgery a couple of years ago. The (very lovely) surgeon said he’d only do my left eye under general because things were stuck together and he anticipated it taking an hour. He did the right eye another day under local which he anticipated taking 30 nit the usual 10/15 minutes. It took 50 mins as it was so like the right eye, all stuck together 😵‍💫.
I also have (mild) copd . I was very relieved to have copd rather than methotrexate triggered fibrosis
Yes alive and I was kicking a ball for my labrador earlier