RA relapse

[louislong]

Hi,

I am having a really hard time at the moment due to a relapse . I haven't been diagnosed long , maybe 2 years, however it's hereditary in my family . My dad had it as a child then my youngest sister got her first symptoms when she was 10. She was in hospital for 3 months until they found out what it was . ( that was 30 years ago) . More recently my niece has been diagnosed too. So when I got the symptoms I wasn't shocked . Angry but not shocked.

I was angry because I am already battling bipolar, ptsd and anxiety but this really stopped in my tracks . The inflammation caused me to stop doing things I needed and wanted to do .

I care for my mum who has Alzheimer’s, I share this with my 2 sisters . I find this really hard work , although I would never stop this . My mother in law has been diagnosed with terminal cancer (asbestos related ) she has months to live, I share the care for her too.

Every night my joints feel like they are on fire . My feet , toes, ankles are sore ( swollen on occasions) but the joints are stiff that the pain is too unbearable to sleep.

I am on medication, paracetamol so much x a day but it doesn't work so I went back to see my rheumatologist. . This time he gave me steroids tablet form as the injections don't work for me . The first week after a day and a half I felt like I was walking on clouds , my pain went from 15/10 to 0 . I couldn't believe it ! That was on 4 tablets a day . The next week , this week , I started 3 tablets a day , that was 3 days ago . It's like someone had taken a sledgehammer back to my joints again . The pain has crept up again with the highest pain yesterday being 12/10 . Now I am in the bathroom writing this so I don't disturb anyone , wide awake with throbbing ankles , my feet feel like they are on fire and my knee joints are creaking . My pain currently is 10/10 . Next week I reduce it again to two tablets for a week . I have a blood test for 1/9 to see how my inflammation factors are he is hoping the steroids have worked. Then on the 8th I see him again to discuss medication as he will have to change or mix brands he told me !!! Being on strong meds already limits my choices !!! Which increases my pain , that's how I see it ....


Now Do I go back to bed watch something on my iPad , fidget around because my ankles hurt , probably wake my husband whose birthday it it is now , because it is 2.37 am or do I do what I normally do , which is go downstairs , watch something on mute and subtitles and go up at a reasonable time with some hope I will sleep inbetween ???!!!'

[Redab]

I was on hydroxychloroquine for years and it controlled my RA well.
Then in 2020 I had a massive flare following an illness.
My GP gave me Naproxen which is basically a painkiller and that helped until I could see rheumatologist. He then gave me prednisolone which helped but not enough. Eventually (due to pandemic) I was started on Sulphasalazine.
It took about 10 months to calm down and then another 18 months to come off the steroids.
I wish I had never taken the steroids. They are evil drugs that make you feel better but can cause long term damage and are very, very difficult to wean off. Each time you reduce the dose the pain and other side effects are awful.

I would advise you to ask GP for better pain relief, use diclafenic gel as much as possible (volterol) and ask to see your rheumatologist asap.

[louislong]

Froodledo I don't know what that is ? Can you explain please . I am seeing him on Thursday .

[louislong]

Currently I am on Hydroxychloroquine but it's not working hence the prednisolone which hasn't touched the sides . He's hoping it will work as the injections (steroids ) didn't . I had a blood test last week and it has marginally brought down my inflammation factor but I am still in a lot of pain . He did say he was looking to mix brands because I am on opioids already for another condition my options are limited.
I forgot to take my steroid tablet last night what with stress of my mum and MIL being moved into a nursing home yesterday and have been up since midnight with 2 hours sleep, if that . All her children , my husband , her daughters are at work today so I am off there in a moment to check she's ok .

[MXThelp]

I am in a similar position OP. I am now on methotrexate injections and suffering side effects. I too reached a stage where the prednisilone did nothing. Phone the rheumatology nurses and tell them your situation. I found the MXT controls the pain, but I am having nausea and head aches.
Unfortunately the way the NHS works is that you have to struggle through the cheapest treatments first with all the relapses, pain and side effects, before you are allowed the better drugs.
I have no doubt the stress of your situation is triggering your flare up. I hope you can get some help.

[Losingthewill8]

This sounds so painful for you, I hope that they manage your relapse quickly and efficiently. Maybe Froodledo’s advice can help in some way.

if anyone is still reading this thread, how do you get a definite result for RA. My dd had various tests recently as they said she was hyper mobile, something that we had been told years ago, but she was having some achiness and the dr referred to see a rheumatoid specialist who ordered some blood tests.

after a couple of weeks the results came back and dr said there were antibodies that could be affecting the joints and to wait to hear from specialist to see what he suggests. She still hasn’t heard anything from specialist. Bloods were done 3/4 weeks ago.

my fear is that it gets diagnosed properly, or not properly. And that if it is an autoimmune disease that they figure out the correct one.

I know that hashimoto disease shows similar symptoms. Does she ask for specific blood tests for both or do we get a second opinion?

it seems to be taking a long time for specialist to contact her. Is this normal?

thank you

[Froodledo]

Aren't you taking something like methotrexate? Seems to work for many people, and seems to be the first thing that the doctors give you. Didn't for me sadly.

Hasn't your rheumatologist suggested biologics? They are literally life changing with RA.

I may have misunderstood: when you said injections didn't work, I took it that you meant steroids, or did you mean biologics?