How long

[Longlocks]

I’ve had to stop all my meds (MTX and Hydroxy) due to a blood issue. Does anyone know how long it would take for my RA symptoms to return. I’ve been lucky (I think🤔😂) that I was virtually back to my normal but only 5 days later I’m feeling REALLY tired and my hands are starting to stiffen and feel a bit achy. I’m not sure if it’s my imagination. X

[charisma]

I usually was told to stop MTX only (and folic avid), keep taking the Hydroxychloroquine/HCQ for a week to allow neutrophils to replenish. Have they told you to schedule a blood test to check levels after a week?

Sorry, I don’t recall how long you’ve been diagnosed and taking DMARD drugs. But if told you were in ‘remission’ ie drug induced, I’d not expect such symptoms of pain in joints to reappear so soon.

I did feel that the Hydroxychloroquine was very effective at holding the fort temporarily.

Best talk to Rheumatology professional! 🙂

Update a while later: I looked at your recent posts and see you’ve not been on DMARDs long enough to achieve ‘remission’. Definitely watch that pain and if it gets beyond bearing do ask for relief! 🙂

[Longlocks in reply to charisma]

I’m seeing Rheumatologist on Thursday. I’ve only been on DMARDS for about 6 weeks with blood tests every 2 weeks. Started with neutrophils at 0.97 they then dropped to 0.5 and now 0.3. I was just interested in how long symptoms return as I’ve suddenly seemed to slump energy wise and I’m getting twinges in my hands but I’m not sure if I’m looking for it lol

[charisma in reply to Longlocks]

Very early days, and with a pre-existing low neutrophil count, I’m sure your Rheumatology team will be alert to a possible flare or other complications (like low neutrophils). It’s unpredictable but since your symptoms are not ‘under control’ yet, it could mean a delay in attaining ‘remission’.

Pain relief is likely needed; I had Tramadol (opioid akin to morphine) but stopped it as soon as MTX and HCQ began to show benefits.

I think you need extra vigilance with pre-existing low neutrophil count. Take care, hope your team give you sound advice soon.

[JFlay]

Hi, I took MTX for nearly 6 months but was then taken off it due to side effects. I wasn't on anything for 9 weeks waiting for my next rheum appointment. I started to get all my RA symptoms back after about 6 weeks and felt rotten 😕

[nomoreheels]

It's a horrible situation to be in, especially when they were both helping. Well, it's 3 weeks for me, day by day symptoms creep in, by 2 weeks I'm really not good & the following week I’m in full flare. I think I’m pretty normal in this, upon halting/stopping them both DMARDS are symptomatic sooner than when we start them. Hopefully it won't amount to that for you & they can find what's making your neutrophils drop so low.

[Hidden]

I had a major operation 4 weeks ago and had to come off Mtx for 2 weeks before that and was supposed to go back on it 2 weeks after the op. However, I have had an infection and am taking antibiotics so am still off the Mtx. I hope to goodness that I can go back on it this weekend as I am in really bad pain in my knees and feet, but worst of all it is the pain in the bottom of my back (coccyx) and I can hardly walk for it. I also feel very tired but don't know if that if from being off the Mtx or from having the op.

I thought that Mtx wasn't helping me but now I think that perhaps it was. I have also had some patches of psoriasis come up as well.

[Longlocks]

UPDATE- I saw my rheumatology doc yesterday and he’s decided I stay off meds till after Christmas and see what my bloods do. Then go back on a lower dose. Apparently it takes around 5 weeks for MTX to leave your system. Alls fine with symptoms at the mo with just a bit of an ache stiffness in my hands. Think I’m coming down with a cold in the last day so I’ve been told to watch and take my temperature so I’m off to get a thermometer 🌡. If temp goes over 38 for a time I’m to call my Rheumy.

Thanks all for the info and support as usual you’re all fab 💋