When will I know if the drugs are working?: I was... - NRAS

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When will I know if the drugs are working?

phil76 profile image
10 Replies

I was diagnosed with RA in October last year and have seen taking sulfasalazine and hydroxychloroquine at recommend levels since Christmas. I also take Naproxen every day.

I am still in some pain and currently just walking hurts my knees 😞

I know this was never going to be a quick thing but how do I know if these drugs are working?

I am finally seeing my Rheumy in a couple of days and I've just had some blood tests, so hopefully that will tell me, just frustrated, thought things would be easier by now.

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phil76 profile image
phil76
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nomoreheels profile image
nomoreheels

Hiya Phil76. I'm sorry to hear you don't feel any differently yet but really the only thing I can think to suggest is do you feel any benefit than before you started on your treatment? Less inflammation, less tired, less pain? I know this sounds a bit simplistic but it's not easy for someone else to know except your Rheumy who will examine you as part of your DAS 28 & determine if your swollen & tender joint count is less or lower than your initial score. It can be a case of suck it & see in the early days of treatment unfortunately, but sometimes the meds can just suddenly kick in & you notice a big difference. I haven't taken sulfasalazine but hydroxychloroquine was my first DMARD. Both can take up 12 weeks to feel full effect, sometimes longer, but that's down to how your body reacts to the meds I'm afraid & how much work they have to do as well. I had the benefit of oral steroids as well as a couple of NSAIDs when I started treatment so my inflammation was brought down quickly & I did notice a difference almost immediately but not all Rheumys prescribe the same.

On a positive note you've not long to wait before you'll receive an answer to your question from the person who can determine if they've been of benefit. I'd use that time to write down any other questions you want to ask. I hope the answers are the ones you're looking for!

Chappy1 profile image
Chappy1

Hi. I am on the same regime of drugs as you are after a disastrous time on MTX.

I've been on these for nearly 3 years now and I feel they are really working. I've had no side effects, which in itself , is a blessing.

It did take a while to reach this stage but I'm glad I stuck with it as now I feel almost like I did pre RD.

As for your knees, if it's any help to you, when the RD calmed down I too noticed my knees felt worse. But in fact it was the realisation that I actually had osteo arthritis in my knees, which is now the pain I feel.

dazzlebandit profile image
dazzlebandit

I would have a discussion with my rheumatologist!! If you are feeling no benefit, it might not be what you need! Have you added steroids to get you through until it does help? You would have to stop taking the naproxen but it might be worth a try. Good luck!!!

allanah profile image
allanah

Yep agree with the others do chat with your Rheumy nurse or doc, as you have a long term relationship with them you do need to be able to say, actually I still have pain ... In my knees for example. Often then mine will give me steroid injections or arrange physio or occupational therapist help depending what I needed. Xx

phil76 profile image
phil76

Thank you all for your words of experience, I have never seen my rheumy doc before and feel like I am cheating by getting steroid injections, but they do make my life soooo much better for a few weeks at least.

I also have type 1 diabetes and MS so there are other issues with what I can take for the RA.

Thank you for letting me vent a bit on here, you always give such great advice and sensible suggestions, I am just impatient and want to be better now!!

Phil xx

nomoreheels profile image
nomoreheels in reply to phil76

Phil, I'm a bit lost here. You say you've not seen your Rheumy before yet you're on meds for your RD. Is that right?

phil76 profile image
phil76

Sorry nmh, I am on meds having seen one of the rheumy team and then amazing rheumy nurses who have been great but haven't met the doctor yet, not sure what I am expecting really, maybe she will be able to make it all go away.

Just writing this has made me realise that maybe I haven't accepted this as much as I thought I had, need to take it a little more seriously and go to my appt with that list of questions and not expect her to know how I am feeling as we are all different.

Thank you

nomoreheels profile image
nomoreheels in reply to phil76

Ok! I understand now. You're not unusual feeling that way many do when diagnosed so don't worry! I think writing down the questions you need answering is an excellent idea but do try to be succinct, you don't want to find you're halfway down your list & find the appointment time is up. Your Rheumy needs time to examine you & discuss her treatment plan for you. Been there & learnt from it!

You understand that it's an individual disease & also that there's no quick fix so that's a positive. A little patience is needed is all.

Do keep us updated won't you?

Karen77 profile image
Karen77

Much as I know you just want to feel better NOW, experience tells me that this is meant to test your patience... I mean this without any judgmemt, but based on my own experience. I weaned my youngest "against my will" so that I could start MTX and get better so I could actually lift and hold my son.... Instead, as my MTX was increased every 6 weeks, my symptoms got worse and worse. It was only after 8 months of this, when I finally started Humira, that I began to feel better. My suggestions to help you get through this period are to try mindfulness based stress reduction and consider reducing stressors, even if it means taking some time off work. This was hard for me because my mind was still sharp, even as my body was weak, on fire and in pain, but it ended up being a necessary measure - I was off three months and returned gradually over a fourth month. All the best to you as you sort through this disease and get through this time. There is light on the other side of the tunnel.

phil76 profile image
phil76

Thank you Karen. I think I am just going through a low patch at the moment, I know it can take a long time and it will be worth it in the end (hopefully) but sometimes it gets a bit too much and then I come on here and have a moan and lovely people make me realise that it's ok to sometimes not be full of the joys of spring but I will get back to staying positive in a few days x

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