is it norming to have pain while on a biologic - NRAS

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is it norming to have pain while on a biologic

pau1 profile image
pau1
24 Replies

I was diagnosed with zero negative Rheumatoid Arthritis and have been on a biologic for 3 months and take sulfasalazine. My blood test has shown my inflammation markers are at 1 which is very good however I am in constant pain with hands, wrist and shoulder pain is this common trait with RA.

24 Replies
Neonkittie17 profile image
Neonkittie17

Do you have any old, meaning historical trouble as such from osteo arthritis as it may be that you are feeling? .. or possibly over use of joints when we have an energetic spell and do a bit too much especially with the hands? I can get pain in the soft tissue/non joints of my hands which I call electric shocks, when my RA is trying to come back when my infusion is needed again and it’s a very specific acute stabbing across the backs of the hands and unlike the pull and drag I feel of the osteo/joints and tendons attached, but my medication keeps it all very much under control these days. Good that your RA inflammation levels are very well controlled on your biologic and Sulpha given your blood result. Keep a mental note or jot down when and where it hurts/happens and see if it relates to anything you’re doing? I get old damage/osteo pain when sitting for periods of time, so I try to be on the move as much as I can.

Barrister profile image
Barrister

I still get pain most of the time, sometimes worse than others.

Neonkittie17 profile image
Neonkittie17 in reply to Barrister

Doesn’t sound too good 😑. Sorry to hear that. Is this the osteo type pain? As I says it is very distinguishable for me between OA and RA pain but not always obvious to others.

Barrister profile image
Barrister in reply to Neonkittie17

No it’s definitely from my PsA.

Neonkittie17 profile image
Neonkittie17 in reply to Barrister

Yes as HH says the sore joints can take time to catch up with the blood results in terms of healing and feeling better. I find for myself that soft tissue has been a devil to heal in the past. Hurts more for me than the joints as that soft tissue pain tends to flash through you even when you’re not moving. ⚡️ I hope for you now your biologic med is doing its work that your muscles will gain strength and support the joints and hopefully less pain. 🤞🏻

Lolabridge profile image
Lolabridge

As Neonkittie suggests the pain you still have could be osteoarthritis. My RA is well controlled with my biologic and, like you, my inflammation markers are low, but I still have a little pain from time to time. It occurs in my ankles, that I used to sprain fairly frequently, and also in my thumb/wrist joint on each hand.

Neonkittie17 profile image
Neonkittie17 in reply to Lolabridge

Exactly, Lola. There are still weak spots that tend to remind us. 🤨 Even when our inflammation levels are great. x

helixhelix profile image
helixhelix

It can take longer than 3 months for the biologic to control things enough. Even though your inflammation markers have dropped it can take a while for the over inflamed and swollen joints to heal.

Neonkittie17 profile image
Neonkittie17 in reply to helixhelix

Indeed .. I have had ligaments and soft tissue take an age to heal as you keep thinking you’re fine and then overdo things .. as we tend to do! 😳😁

pau1 profile image
pau1 in reply to helixhelix

thank you I guess i have to be a bit more patient to give the drugs a chance to work

KittyJ profile image
KittyJ

I still have a lot of pain but it is from damage to the joints by my RA whilst it was uncontrolled. Do you have joint damage? As has already been said you could still see more improvement as you’ve only been on your biologic 3 months. The effects from my biologic was gradual over the months so I hope you improve more as time goes on 😊

pau1 profile image
pau1 in reply to KittyJ

thank you will wait another three month hopefully my biologic will kick in by then

Eiram50 profile image
Eiram50

My rhuemy once told me that even if/ when they got my RA under control, I would never be Paine free - this is due to the damage that had already been done?

Made sense to me.

Hoping you begin to feel better soon . Hang on in there, 3 months isn’t too long to have taken the biologic. It will get better x

pau1 profile image
pau1 in reply to Eiram50

thank you for your reply I am trying more pain killers so hopefully should be less painful

Eiram50 profile image
Eiram50 in reply to pau1

Fingers crossed.

I have had many, many joints replaced and take painkillers daily. Alongside this, I take biologic ( weekly), methotrexate and leflunomide, as well as 90 mg daily arcoxia ( etoricoxib). Out of all, it is the arcoxia that I note as making a massive positive difference to my pain levels. If I forget it for even then one day- I know about it!

Are you in on anti inflammatory?

pau1 profile image
pau1

I think I have both rheumatoid and Osteoarthritis arthritis . I am on sulfasalazine and biologic and I take painkillers . I think from x-rays Osteoarthritis is in my hands and wrists and shoulders.

Fra22-57 profile image
Fra22-57

I too have RA and been on biologic over 2 years but still get pain and bloods are ok.Its more in my hands.Consultant just said bloods are ok so I soldier on.I sympathise with you as it's never 100% pain free

lilyak profile image
lilyak

Please understand that some people (up to 30%) of people with RA have completely normal inflammatory markers (CRP, ESR) yet there is active inflammation, as seen on ultrasound.

So that means that you may have active inflammation, which means pain and potential joint damage, but your blood tests (CRP and ESR) are completely normal. This is also more common with seronegative RA (not zero negative, just by the way). "Seronegative" means that antibodies aren't detectable in your blood, and this is the case for up to 70% of RA patients.

Any doctor who declares that you have no inflammation based on blood tests alone is a lazy doctor. You simply cannot tell reliably from blood tests alone ,across all patient populations, how much joint inflammation is present.

If you're still in pain, talk to your rheumatologist and be sure she knows this. Some rheums see normal inflammation markers and assume all is well. Most are overworked and pressed for time. But if your rheum dismisses you based on blood tests, then you need a new rheum.

As others have said there may be pain due to osteoarthritis, or RA damage. It is your rheums responsibility to determine which, and your rheum has the appropriate tests and tools to establish this.

Normal blood tests do not mean no inflammation, or no pain. Ideally, your treatment should reduce your pain to minimal, or completely absent. Obvioulsy not everyone achieves this, but if you are still relatively recently diagnosed, remission or low disease activity are the goals, and a blood test is not enough to establish that.

So no, having ongoing pain is not acceptable and not normal. Three months may not be long enough to ascertain if this biologic is effective however, and you may need to give it more time. But most important is to talk to your rheum, and let her know you have ongoing pain and that your blood work is not indicative of how you are feeling. Because what really matters is how you're feeling, and how you're functioning. I hope your rheum listens. Wishing you the best.

pau1 profile image
pau1 in reply to lilyak

Thank you so much for the reply I understand a bit more and I am waiting a couple of months to see if this biologic works for me and then proceed further in regards to further pain relief. I think I have more Osteoarthritis in shoulders and wrist and hands from recent X-rays . I was diagnosed with seronegative arthritis and was hoping that this biologic was going to take all the pain away but realistically I am going to have to find ways of coping with the pain. Its a long road and the impact has changed my life completely from what I was a year ago . I think more exercise routine is needed to strengthen up muscle tone and looking towards yoga for arthritis. Thank you for the information and hope.

lilyak profile image
lilyak in reply to pau1

Exercise is absolutely the best thing you can do for yourself to help your arthritis, inflammatory or osteo. If a tablet could do what exercise could do, we'd all take the tablet. But sadly most patients refuse to accept a little extra short term pain for the long term gain. Pain is a given, how disabled you become is up to you. You have excellent instincts and you seem like you know in yourself whats going on. Trust yourself, and keep doing what you're doing. Yoga isnt a cure as we all know, but the people who do the work, do the exercise, strengthen their muscles and increase their fitness do much better than those who don't (all other things being equal).

MJSlide1958 profile image
MJSlide1958 in reply to lilyak

Hi, What sort of exercise is best? Weights? high impact? or just Yoga. Any advice is much appreciated. Thanks

in reply to MJSlide1958

I have done all of the above and more. When first diagnosed I was a HIIT fan . In fact this is what alerted me to realise something was wrong. I got diagnosed started MTX and was doing ok for about 9 months but it was taking so much longer to recover and my joints were not happy. So I started swimming ( not keen) then a pump class ( weight class) loved it could adapt this to how I was feeling. Was doing this for about 16 months then all hell broke loose and disease took control. Tried to keep going eventually down to one class every 2/3 weeks. Tried swimming again but couldn’t get up the steps to get out. Wasn’t going to use the hoist . It required 2 staff as it was manual( too humiliating). Tried walking , rowing , Pilates for arthritis) there are spastic classes online for arthritis these are good) I’m still struggling with different joints so nothing is consistent . Can’t wait to get back on my feet and covid to b***** off soooo miss exercise.

MJSlide1958 profile image
MJSlide1958 in reply to

So sorry, hope all settles soon. I hate RA. Good luck

Twitty999 profile image
Twitty999 in reply to lilyak

Lilyak… I just want to say that was a brilliant reply…exactly right!. You’ve encouraged me to have a serious talk with my Rhuemy.. thank you 🤗

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