Nurse visit and medicine options

[Gottarelax]

I've been on oral MTX (25 mg) for 5 months and added sulphasalazine in February. Also just finished a short prednisolone course. I get better when on pred and decline straight after. While anti-CCP positive, my symptoms aren't really typical of RA. I don't have swollen or particularly painful/stiff hand joints though some are described as spongy. My main problem is my large joints which are symmetrically stiff and painful. When I first got sick, I went from active to crippled within a few weeks. Since my first pred course last year, I have not become so disabled again but still get a lot of pain and stiffness as well as fatigue that I try to ignore and carry on as close to normal as possible. When the nurse feels my joints, I don't get any pain but it rather builds and by night time I can't sleep with the pain. I then just feel general aches and pains all day. At each appointment, the consultant or nurse seems to be confused that I'm not sensitive to squeezing the joints and makes the comment 'but you are anti-CCP positive' as if my symptoms don't quite tally. Sometimes I wonder if I have 2 conditions going on in parallel.

In my latest appointment, the fact that the medication without pred was only about half effective was noted and the next steps are to change to injected MTX and perhaps add Hydroxyquinoline after giving a few more weeks to sulphasalazine.

Firstly, I wonder whether anyone has had improvement from a change to injected MTX. I don't get side effects with MTX and while my liver test was abnormal one time, it went normal again the next test. I'd rather not inject if there is no reason to but the nurse said that for some, injection can be more effective than oral.

Then I'm concerned about adding yet another drug to the mix. I feel that I've been lucky so far but adding more toxicity seems to be asking for trouble. I'm a little concerned about the eyesight issues with HQ as I am not coping very well with normal reading eyesight loss that comes with age. Also my eyes are really dry all of the time already so I do have concern about my eyes.

I know we all react differently but if you have any experience of mixing all these drugs and also your treatment if your RA symptoms are more large joint oriented, I'd be grateful for any insights.

Thanks for reading!

[Neonkittie17]

Hi, when Mtx started to not be as effective for me back in the 1990s I started the injectable version and it worked so much better. I know it has been the same for others too. Sub-cut can increase blood levels of Mtx therefore increasing responses to control the RA and be more effective.

[Gottarelax in reply to Neonkittie17]

Thanks Neonkittie, that's really helpful to know. How did you find the injections? were they painful and did you get any side effects that you didn't get with oral MTX (or vice versa).

[Neonkittie17 in reply to Gottarelax]

None at all and not not painful. All good!

[Gottarelax in reply to Neonkittie17]

thank you, that’s so reassuring 😀

[Neonkittie17 in reply to Gottarelax]

Good luck! 💗🙏🏻

[Newbie73]

I moved from 20mgs oral MTX to 20mgs injections early Jan and had hyrochloriquine added late Jan. initially no difference and thankfully still no adverse effects which was a concern.

Similar to you my larger joints, my hips, shoulders elbows and wrists and what I now know to be my sub-talar in my heel were generally quite sore and randomly my jaw. But usually not enough to continuously take pain meds.

Hips and shoulders did flare and wake me up several times in the night and I would take naproxen and co-codamol if this continued for several days.

The rest of my joints were only painful if I squeezed them / shook someone’s hand etc. it was at this appointment I discovered that this was active disease. I thought I needed to be taking pains meds for it to be worth a mention. The consultant advised that he expects me to need to progress to biologics and added the 2nd DMARD and ordered a review in 3 months.

Around 8-10 weeks in most of what I describe as my joints humming all but stopped. This is the closest I have felt to when I was on pred when I was first diagnosed just over a year ago. My feet and hands are still full sore and stiff when I get up first thing in the morning and my feet are still sore when I have been sat down for a while but they resolve fairly quickly. For for the first time in quite a while I am able to do my stretches including putting some weight on my wrists. My hips do feel tight and tender but very manageable. A lot of joints are still sore if I squeeze them but fine (most of them) if I don’t.

I was beginning to think the increase in meds were not making any difference and expecting to be put on a biologic at my review next month. Around /just after the 2 month mark it was like a switch had been flipped. I am expecting my ESR to be normal or close to it - I feel so much better.

Of course everyone is difference, I mustn’t have been absorbing enough MTX in oral form.

hopefully you will get a good outcome if switched

[Gottarelax in reply to Newbie73]

Thank you for your detailed reply Newbie. It's good to read that the transfer to injections for MTX made a difference to you. Like you, I feel like I shouldn't complain when I'm not in agony all day. I don't bother with pain relief because it's never really done much. The thing is that when I look at quality of life, it's not what it was. I am restricted in a lot of activities that I used to enjoy and sometimes I wonder whether I should just be grateful that I can manage what I do compared to being completely disabled as I was at the beginning. It feels like I'm wearing a suit of armour that is heavy, restrictive and digs in awkwardly when I'm trying to lay down in it (I should use that analogy when I see the nurse). Hopefully the new treatments will do the trick!

[virtualreality]

Hi Gottarelax , sorry to hear how difficult it's proving to get the disease activity under control. I take these three meds (MTX, SSZ, HCQ) and did see an improvement from combining all three, though everyone's different of course. I was started on MTX and HCQ, then SSZ added later because I wasn't keen to go down down the biologic route. The effects weren't quick, though - at least 3-4 months for the MTX+HCQ to show clear effects then another 3-4 with SSZ. Still on pred though a much lower dose now. Personally I did find switching to MTX injections from tablets helped - there's often a higher effective dose with the injections because they bypass the digestive system so it can be like having an increase. I use a metoject pen and it's fine - quick and painless. It felt like quite a thing to start injecting myself at first, but soon got used to it. If you're not sure about adding another medication, trying injections might be a way of escalating treatment without needing to do that. Working out the right approach to treatment and finding what works feels like such a complicated puzzle some times though doesn't it, they're not easy decisions to make. I hope you do find a more effective combination very soon.

[Gottarelax in reply to virtualreality]

Thank you for your encouraging reply. Sounds like the injections are going to be manageable. I was concerned that it would be like having a vaccine once a week. Hopefully it will work for me too! It is good to know that the nurse is still looking for solutions and isn't letting me settle for where I'm at.

[virtualreality in reply to Gottarelax]

Absolutely, it's really good that your team are looking into other options and ways to make your medication regime more effective. They'll be keen to get the 'disease activity' better-controlled than it sounds like it currently is, and asap.

With the injections, mine's an injection pen rather than a syringe, so it's much quicker and simpler to use - and not like having a vaccination, you'll be pleased to hear! The needle is so fine you honestly don't feel it. If you're interested, there are quite a few videos on youtube of people doing MTX injections; personally I found watching them very reassuring before starting with them myself. Here's a few search results for 'methotrexate injection' if you think it could help allay any concerns: youtube.com/results?search_...

The prescriptions are easy to deal with in that they're prescribed by a GP and dispensed by a pharmacy just as tablets would be - it's usually handed over from the hospital/rheumatology team once you're settled on a dose (biologics tend to be dispensed via a different system involving deliveries, but generally that's not the case with MTX). I haven't done any international travel since starting on the injection pens so can't speak from experience there, but I have seen other folks here talking about managing that scenario so no doubt it can be done.

It's just so much to take in at first, when you're still dealing with the worst of the symptoms, and the uncertainty of not knowing when it's going to reliably improve, isn't it. At times I've found managing the medication and the decisions and side effects that come with it almost as complicated as RA itself! It does settle down in time, though. Just hope you find the right combination of meds to get your quality of life back very soon.

[Gnarli]

Like you, I worried about adding in more meds each time the symptoms showed I needed something more effective. Still do, in fact. However, it's surely better to take the meds than to be uncontrolled? Vivid memories of a half life between the doses of tramadol and finding that after three hours the pain became unbearable keep me from ever wanting to be like that again. I hope the new cocktail works pdq

[Gottarelax in reply to Gnarli]

Thanks Gnarli. I don't mind taking the risk of side effects if the meds are going to work. It's that waiting and watching that can be frustrating. Hearing that others have had success with my recommended treatment pathway gives me the confidence to give it a go.

[Gnarli in reply to Gottarelax]

Yup. I understand as am in a similar situation at present. I'm sorry if I came on a bit strong. The frustration is a killer isn't it?

[Gottarelax in reply to Gnarli]

You didn't come across too strong - no need to apologise. I totally agree.

[Hidden]

Hi. I also take Mtx and Sulfasalazine. My Sulf was added to incrementally. I now take 2 tablets with bfast and 2 with my evening meal. I tried Mtx injections several years ago but they really freaked me out and made me poorly 🥹. Each to their own. I had my oral Mtx increased instead (to 25mg).

It does take a while for everything to work. I would also ask about Osteo Arthritis. My R knee is my ‘problem area’. I have RA, OA, Fibro & HyperMobility, so unpicking the culprit can be difficult…

Good luck x

[Gottarelax in reply to Hidden]

Thank you for your reply. I'm on the same dosage of MTX and SSZ. There is still time for it to really kick in and I'm to be reviewed in 6 weeks although I can go ahead and ask for injectable MTX now. If oral MTX is going to work, I think (just an assumption) that getting my prescriptions will be more straightforward and travelling with medication will be easier so I'm going to give it the 6 weeks. I do know that I have a little OA in a couple of joints but I don't think it's my main joints. I do also wonder about Fibro or PMR which are also in the family and seem very similar to what I'm experiencing though the rheumatologist didn't take much notice of that.

[Hidden in reply to Gottarelax]

Same. My MSK Physio (I self referred) diagnosed me with Fibro. I take Amitriptyline 20mg at 7pm for that. It works a treat.

I think a few of us have several things ‘going on’. My fatigue is still an issue but I can do one day on one day off now which also makes a huge difference. If I do ‘too much’ and break from this I am poorly for a week.

We are complex creatures 😀🥰

[Hidden in reply to Gottarelax]

Whilst I remember… I had to pick up my Mtx syringes from a hospital. They do ‘pen-sticks’ now, for want of the elusive term, so that prob would cause issues with travelling… Many posts on here about travelling with meds for you to look at (search engine).

[Monkeysmum]

Hi Gottarelax. Just a vote from me for the switch from MTX tablets to injections. I find that the side effects virtually disappeared on injections and I do think they are more effective for me - I stayed on the same dose as the tablets but believe the absorption is more effective for me injecting rather than oral, so effectively more medicine in the blood. It did take quite a while for me to see that improvement when I switched though and it was a very gradual thing, maybe three months or so the same as when I started on MTX. The injection device itself is really simple and basically painless to use, especially if I inject into my stomach (more padding). You get used to doing it really quickly. I’ve travelled abroad with them several times and although needs a bit of planning in terms of letter from the Drs/suitable bag to put them in, it hasn’t been a big deal at all.