Medication limbo - how long does it take to work?

[Abbi_080]

I'm 28 years old and was diagnosed with inflammatory arthritis last year following years of difficulty with my knees in particular. After being on Methotrexate 15mg pills for over 6 months with no benefit I have just been moved onto the injectable solution and had my dosage increased to 20mg. I've also been given Hydroxychloroquine to take alongside it.

The issue is that I seem to be going through a phase of really increased disease activity because my symptoms have spread from mainly just my knees to my spine, pelvis, shoulders, ribs and wrists. I'm really struggling on a day-to-day basis with caring for myself and keeping active. I have had 2 steroid injections within the space of 3 weeks (both into my knees following fluid draining) but the relief only lasted about a week each time. Due to the Covid-19 situation I am not working or studying at the moment but if things don't improve soon there is a very real possibility that I will have to stop working and potentially put my studies on hold - I am about to go into my second year of a Sports Therapy course which is very hands-on and physically demanding. I'm just feeling really down and feel like my whole life is being put on hold. Alongside the huge effort it takes just to get out of bed and do the most basic of self-care tasks, I feel just a bit hopeless and like I'm not really myself anymore. Because the lower dose of methotrexate really didn't make a difference to my symptoms, I can't help feeling like it won't work this time either and I will have to spend another 3 months+ waiting for something else to work.

I'm just wondering what other people's experience was of waiting for drugs to work. How long did it take before you started to feel a benefit? How did you cope in the meantime?

I'd appreciate any advice

[FunBalloon]

Hello, I'm sorry to hear that you are suffering this much. I'm actually on the exactly same medication regime as you. My hydroxychloroquine was added about 2 months ago. I've only just started to feel better. So I'd give it some time because the dose increase could really help you and make a difference. I'd also phone the nurse just to let her know how you are doing. In the meantime I'd use ice packs for the knees and possibly ask the GP for some pain medication. If you'd like you could send me a Pm to talk a bit more about work. I might be able to help a little bit. I hope you feel better soon x

[Abbi_080 in reply to FunBalloon]

Thanks for getting back to me, it's great to hear that you are feeling the benefit from the same drugs! Hopefully they will suit me too and start to kick in soon. I've left a message with my rheumatology nurse so I can catch her up with how I'm feeling, and will definitely give ice packs a go. I've been using a heat wrap over my neck and shoulders which has been really helpful in the mornings. Again I'm glad you are starting to feel better and I hope it continues that way for you

[charisma]

It is a difficult journey, Abbi. Methotrexate along with Hydroxychloroquine is a good combination.

I had it not long after diagnosis. It took the usual 12-16 weeks for me to begin to feel a lot better.

Meantime, I had Tramadol painkillers and steroid tablets but had to taper the latter. I reduced Tramadol too, not wanting to take it if not in agony.

I hope it works for you. 🙂

[Abbi_080 in reply to charisma]

Hi charisma, I think i will end up doing the same! I have some painkillers (Meptazinol I think they're called) which I was prescribed a few weeks ago as a one-off for my knee which had ballooned, I'm trying to just take one before bed each night as they really make a difference and help me get a decent sleep. I will need to phone GP and ask if they are ok to take long-term and ask for some more.

Thanks for getting back to me and glad the methotrexate and hydroxychloroquine worked well for you, trying to keep positive that this part isn't forever!

[oldtimer]

Methotrexate by injection is more effective - you may well see a better response than with the tablets. And hydroxychloroquine is very helpful for some people (I was on it for years!).

Unfortunately the only way currently is by trial and error and that takes time. New techniques of identifying which particular part of our immune system is causing the problems are coming - but not yet.

This is the worst time for you when you have yet to have success with medication and you feel terrible. But there is a solution, it just takes time to find it, as so many of us have discovered. All we can do right now is understand how depressing and difficult it is for you, but that won't last for ever.

[Abbi_080 in reply to oldtimer]

Thanks oldtimer, it's been so helpful just reading through a lot of the posts on here. I don't know anyone in my life that has experience of RA so it's just so nice to read the experiences of other people here and feel less lonely about it. Hopefully this combination of drugs will work for me!

[Hidden]

So sorry to hear you are feeling so down. It's totally understandable given what you are going through, especially in these strange and depressing times. Oldtimer is right; there is no instant solution for this disease. The best advice I can give is to keep moving, however little you can manage. Everything seizes up more if you are immobile.

Everyone here understands how hard this is for you, but you are young and that is in your favour. Let us know how you get on.

[Abbi_080 in reply to Hidden]

I have definitely noticed that the less I do, the worse I feel! I'm a really active person so it's been difficult to accept that I can't do the sports that I would usually (hopefully temporarily), but I've been doing my best to get out for a shuffle around the block everyday and that really seems to help.

[Hidden in reply to Abbi_080]

It's great that you make yourself go round the block. Determination helps a lot. I was 70 when diagnosed and at my worst, I couldn't get up from a chair, let alone walk. I had a hospital appointment coming up and sent my husband out to but a wheelchair (all those corridors!). However, I was so mortified at the idea of using it in public, I made myself walk, with a stick on one side and my husband on the other.

I'm not saying anyone should push themselves beyond their limits, but up to the limit is good sometimes.

Don't despair about ever doing sports again. The drugs aren't working yet for you. There will be a big difference when they do.

[Notabenenot]

Oh, Abbi, I just read this, your previous post. Didn't realise it was here. I see you are on Metho as well as the Hydroxo. I'm so sorry you are feeling so bad and struggling so much. The Metho takes quite a while to kick in, but it helps me no end. You don't realise how much until you have to leave it off for an op or something. I was without it for 7 weeks once, and it affected me so badly, I have never been the same since, so I would persevere with it. As someone else said, speak to your Rheumy nurse if you can. Are you on anything for the inflammation? It might be worth asking about it if not.

[Abbi_080 in reply to Notabenenot]

I'm sorry to hear you had such a rough time after you came off the meds for your op, I hope you are feeling better! I take Naproxen for the inflammation (with Omezrapole to protect my stomach) but the nurse recently did an ultrasound on my knees which still showed a lot of inflammation in the joint, despite taking the naproxen for a few years now. So not sure if I should mention that to the nurse again, I'm still trying to learn about what the inflammation means in terms of pain and joint damage!

[Notabenenot in reply to Abbi_080]

I would speak to the nurse again if the inflammation lasts more than a few days. It may be causing damage. I've no experience of Naproxen & Omezrapole at all. I take an anti-iflammatory that's not recommended nowadays, but which works for me. It's probably a matter of trial and error and, as *oldtimer *said, upthread, time. Good luck.

[Tjmu]

Hi Abbi, hoping you find the right mix soon. I started on methotrexate in 2017 and was on prednisone to get though the rocky adjustment period, hips, knees, wrist, fatigue. Hydrochloroquine added after some time and weened off of prednisone After a year. The first couple years were up and down but feel really good now majority of time. Still on oral methotrexate and hydrochloriquine. I wish there was a perfect recipe for all but it seems everyone is different. Wishing you the best. Hang in there!

[Abbi_080 in reply to Tjmu]

Thanks for sharing your experience, it definitely makes me feel more positive to hear quite a few people say they've had a lot of benefit from methotrexate! It's great that you seem to have found a good mixture for you. I've been doing some reading on the NRAS website about other drug combinations so at least if this doesn't work for me, I have plenty of options going forwards

[Brychni]

My heart goes out to you. It sounds as though you feel your future is threatened because of debilitating pain. Similar situation although not in as much pain as you. Been taking hydroxychloroquine since March for Undifferentiated inflammatory arthritis which was found in my wrists. I was warned it wouldn't start working for at least 3 months possibly 6. I haven't felt any benefit yet and although my symptoms were at times excruciating before diagnosis, they were sporadic. Since diagnosis though, the pain is more widespread and more constant. So things are getting worse while I'm waiting for hydroxychloroquine to work. I had pain in my ankles and coccyx when I was a child which may have been early symptoms but I just lived with it and it went away.

Keep on at the healthcare professionals, I did and feel it's been caught early. Good luck.

[Abbi_080 in reply to Brychni]

Oh that sounds awful, I'm really sorry you're having such a rubbish time. That sounds very similar to how I'm feeling in that my symptoms are getting worse and more constant while waiting for the meds to kick in - it would be so great if there was a quick fix!! When I wrote the post I did feel very down about how my future was looking but I've since spoken to my guidance tutor at college and been reading lots on this website and starting to see that there are definitely options, I'm feeling more positive. I guess I just need to accept that this period of my life is going to be a bit difficult and uncertain. I really hope your medication starts working soon and you can get some relief!

[Badger22]

Hi Abbi

So sorry to hear about your situation. If it helps at all, when I first started Mtx it didn’t do anything until my dose was increased to 20mg. That was orally but eventually switched to injection. I was also on 400mg hydroxy daily. Stick with it! I know it’s frustrating, especially if your work is physical, as mine is, as it adds an extra layer of worry. Whatever you can do to help maintain your mental health is equally as important as the arthritis meds. (Staying the obvious a little I know). Fingers crossed the meds start working soon!