What was it like when your RA meds started working?

[Theoddjobman]

I have been on what I think must be a similar meds journey as everyone else in the hope of finding the right one.

diagnosed with seronegative RA I have had a few different ones.

latest is Methotrexate and Adalimumab injections. Weekly and fortnightly respectively.

Now moving to Methotrexate and Benepali both weekly.

Does all the aching vanish? What was your experience when the right medication was found?

I started in 2019 and so far have had more success with naproxen but this doesn’t treat the cause and I have stopped taking it now due to it masking symptoms and gastro issues.

[medway-lady]

I’m sero positive and remission is the aim. That means, pain gone along with swelling and hot joints. I use Benapali along with taking Azathyoprine and my life is normal. I’ve have some other issues but they are down to CKD. It might not be the same for you though and I only took MTX for a short while a long time ago. I’ve not had many RA medications and now due to age won’t get JAKs but only MTX was bad although Abatercept was stopped as it caused me dreadful eczema which was sore and spreading. I like Benapali as it does work well but prefer syringe delivery rather than the pen which I found painful and hard to administer.

[mmb50 in reply to medway-lady]

I too inject Benepali and find pen painful so thanks for sharing your experience with changing to syringe. I will look into changing to syringe too

[Gottarelax]

I'm just on methotrexate. I still ache but I can move (some limitations in shoulders and knees) and the pain isn't enough to disrupt sleep. I can't do all the activities I used to do. My CRP is normal and hands don't show signs of deterioration so as far as my Rheumy team is concerned I'm OK on the medication I have. Unmedicated, I was completely seized up to the point of only able to shuffle and the pain was excruciating so while not perfect, its a huge improvement.

[Theoddjobman in reply to Gottarelax]

I feel very fortunate that mine does not seem to be as bad as many. I’m only 57 so still have a good few years of work ahead of me.

As it’s relatively early I am fortunate enough not to have significant swelling and redness.

Blood tests are not very helpful for seronegative I understand .

Beginnings and end of the day are worse. I was just starting to wonder if the baseline I am at is as good as it’s going to get?

What I have been hoping for is to lose the fatigue and not be aching everyday

[Gottarelax in reply to Theoddjobman]

Yeah, I'm around the same age. Fortunately my job is sedentary and I am able to walk about 1.5 hr a day (dogs force me out however I'm feeling). Fatigue is an issue and when I'm busy, I find I have to break more often, which can be frustrating. Where I used to take a whole Saturday getting stuff done, I'm resting every hour. Getting to bed and having a good night sleep is important and fortunately, since the medication started working, at least I sleep much better. I may not be a good example and I'm sure others have got back to nearer to normal than me.

[hazelcats in reply to Theoddjobman]

I am also seronegative inflammatory arthritis, diagnosed in April, but delayed diagnosis as of course blood tests arent as helpful. On mtx jabs and hydroxy tablets.I still cannot work out how seronegative patients are monitored. Cant get a follow up consultant appt about my diagnosis and progression\improvement, but have a nurses appt Fri to ask such questions.

Scans and xrays showed damage to my hands, wrists and fingers which I think may be due to delayed diagnosis?

I am in pain 24hrs a day, but also have osteoarthritis and fibromyalgia so its sometimes hard for me to know which is causing pain sometimes. I do still take naproxen and cocodamol as well. Tricky isnt it?

[Gramma3 in reply to hazelcats]

Very similar story to you, I was diagnosed in Sept, but I think I have had it for 3-4 years. They kept saying RA negative blood tests, finally got referred to Rheumatology and confirmed I have got RA. A few wasted years of treatment have not helped. I am taking codydramol or Tramadol depending on pain levels.

[hazelcats in reply to Gramma3]

Yes, much the same in a time span. I was in perimenopause and it was assumed lack of oestrogen was to blame. I do feel too much time was lost due to the inconclusive blood tests.Am trying to avoid tramadol atm. Hope you are getting some relief

[Hisue in reply to Theoddjobman]

Yes- The RA fatigue is awful.

[fred42 in reply to Hisue]

Briefly, I have a similar history to yours with sero-negative RA. It took a few tries to find the right biologic for me but when I found it the stiffness just disappeared and also the pain from affected joints. I have been taking Cymzia for nearly 3 years now, no other meds as they all give me other issues. Still have fatigue but just have to manage that.You will know when you find the right one.

[Hisue in reply to fred42]

Thanks for your reply. I'm in the USA. After a string of bad drs- 10 yrs of pain, damage, multiple drugs- a kind PharmD intervened (saved my life) & got me on a JAK. Much better now - recently added LDN to see if it will help with the severe fatigue.

[Fruitandnutcase]

I have sero negative inflammatory arthritis. First of all I was prescribed a three month ever decreasing programme of steroids.

When they started to kick in I felt like superwoman, once they started to work I started taking hydroxychloroquine. It works fairly well and I top up with a couple of paracetamol should I feel the need.

The downside of the steroids was that I developed steroid induced T2 diabetes. Fortunately I was taking part in a medical study and it was discovered very early on but that has put me right off taking steroids again.

[pammi2]

i used benapali for 10 years and it worked so good, had the occaisional flare but had a NORMAL life, you know the one you had before RA.

[Blackberrywine]

Meds didn't really work for me (apart from steroids). I tried many, but either had zero effect, or terrible side effects. That said, things seem to have improved with a dietary change and exercising muscles. I still get some pain and stiffness, and have to rest but in comparison to just a year ago life is better. That may change of course but I'll take it!

No one knows why inflammatory arthritis rears its ugly head or why some folks do well on drugs whilst others don't. It's a weird disease. Lots of people do amazingly well when they find the right drug for them. It's not a one size fits all. There is hope though that one way or another things can improve. When I first got arthritis I was suicidal with the pain and lack of mobility. Partly because it was difficult to get treatment initially. I'm also seronegative. I did have very high inflammatory markers, low iron and dodgy white cell count. Still found it hard to be taken seriously. That was depressing. I'm loads better now and very proactive in trying to stay well.

[Gramma3 in reply to Blackberrywine]

What dietary change did you do?

[Blackberrywine in reply to Gramma3]

Quite a drastic one! I cut out all grains, dairy and went very low carb. I eat mostly meat and fish with a few greens and berries. I cut out sugar and coffee. Not for everyone, but it worked for me. I do have the odd lapse, for instance when family visit otherwise it can feel a bit antisocial. Otherwise I stick to it.

[Cat-E]

I am one of the very lucky ones that the first meds (mtx) along with a couple of steroid injections to kick start them worked for me and a year on from thinking I was near to death I am doing well. I get up in the morning and my knees go ouch a bit and if I sit for too long I am a little bit stiff but no worse than anyone else my age (53) I don't think. The only thing that I am finding it a bit hard to come to terms with is the occasional flare of fatigue if I do too much, I'll never decorate a room in a weekend again 😞 But, in answer to your question, yes, the pain, the burn, the swelling and the sleepless nights have gone and I just hope that continues to be the case for many years.

[Gymcactus in reply to Cat-E]

I too was lucky to find that methotrexate suited me then had to have sulfazalazine added to help with morning stiffness. 7 years on both still working well, no joint damage but I do have to remind myself not to overdo things. I am RA positive.

[Cat-E in reply to Gymcactus]

Hi, how did you know that something needed to be added to your meds, did things go down hill rapidly or flares happen more often? I too am RA+ but all my bloods are in normal range now but my big fear is that I go back to where I was a year ago at some point 😬

[Gymcactus in reply to Cat-E]

I was still very stiff in the mornings so consultant added sulfazalazine to combat this, which h works. I only take 15mg Methotrexate .

[RAat13]

I have Seropositive RA, I'm in Remission after 22 years and it's bloody marvellous 😊I'm on Rituximab.

I also have other things too, type 1 diabetes, stage 4 CKD, lung disease and Chronic anemia, funnily enough RTX actually helps with most of those too.

I decorated my dining room by myself and I cried because I've never been able to do anything like before.

Good luck on your journey ❤️❤️

[Cat-E in reply to RAat13]

That's amazing, I hope to be able to decorate once again! (But not paint the woodwork, I hate glossing!!)

[RAat13 in reply to Cat-E]

Sameee, I get my husband to do that part 🫢

[Hidden]

I had Benepali on its own no MTX and it was great the only way I can describe it working. is when you wake up in the morning the shuffling and stiffness stops, you feel like you have slept well, you can open jars, walk the dogs. You start to behave like you did pre RA and you get into bed and think Ahhh instead of Ouch. I stopped taking MTX as it affected by gums but Benepali put me in remission until gp responded to a low neutrophil count and took me off. I have been flaring for 2 months since and back where I started as Benepali seemed wonderful the fatigue went but you may still have that due to MTX.