Meds : Hi just wondered how people get on when been of... - NRAS

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nanawilson profile image
18 Replies

Hi just wondered how people get on when been of meds for a while. I have been of mine from around 13th October due to having Covid and then surgery and to be quite honest I feel better not taking them . I do know it won’t stay this way and I would

Hate to go back to how I was before I started medication but I honestly

Feel so much better without . I’m interested to know peoples views on this thanks 👍

.

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nanawilson profile image
nanawilson
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18 Replies
Neonkittie17 profile image
Neonkittie17

Sorry to hear you’ve had such a bad time. Hopefully you’re well on the mend now. On my past experience coming off meds for whatever reasons (for me it was between finishing one and starting another) means you run the risk of fresh RA inflammation coming back in before you restart on RA meds. You always hope to catch it before it sends you downhill. Some meds last longer in the body than others so you hope to start a new RA med before you’ve had chance to start to feel bad. I’ve also had that too that I’ve felt fine and wished it would stay that way, but it seems inevitable RA is going to reappear without anything to suppress/control it. 😑

bpeal1 profile image
bpeal1

As you know if you stop medication for whatever reason you run the risk of inflammation which may cause joint damage. However, if your medication is making you feel that bad maybe they are not the medications for you. Could you contact your rheumatology team and ask for a medication review, explain how you feel and ask if you could try something different. There are lots of different DMARDs and just because one doesn’t suit you doesn’t mean none of them will. Personally I couldn’t tolerate methotrexate but I swapped to leflunomide with no issues at all.

stbernhard profile image
stbernhard

Whatever you do, I strongly recommend that you don't do it without talking it over with your doctor. Good luck.

achyknitter profile image
achyknitter

Sorry to hear you had Covid and hope you are fully recovered. I was very unwell this autumn with a chest infection and missed four out of five weeks' doses of methotrexate. By week four my joints were quite painful and I was more than ready to restart medication. In the past, when I have had a bad virus, I have found that my RA turns off for a few weeks, could this be what is happening to you?

Leics profile image
Leics

I have been off meds for about the same amount of time and I have to say I’m not doing well at all. I did have a depo injection last Thursday which has helped somewhat but still not good. My suggestion to you is that you may find you could have a bit of a pain free holiday for a while but you may regret staying off the meds at some point and wham you’ll know about it too. Please consult with your doctors and take there advice you don’t need to go back to square one. I am pleased that you’re feeling ok though sounds like you’ve had a very challenging time.

AgedCrone profile image
AgedCrone

We can’t really advise you on this NW.....Speak to your doctors...they may decide you need different drugs after the Covid & having surgery.But as you do realise you need to control your RA ....unfortunately until you are settled on a drug that suits you it is often a bit of a roller coaster .

Try calling your rheumy nurse today so that you get a reply before the medics all go off for their Christmas Hols.

But don’t worry...I am sure your doctor will sort things out for you.

nanawilson profile image
nanawilson

I have been doing well on my drugs sulfasalazine methotrexate and Benepali and I will restart them when I can I have to let the wound heal . . I am really just surprised at how well I feel without them pain isn’t as bad as I thought it would Be and seem to have more energy this is probably because I am non weight bearing and not doing much of course . I just find it strange to feel so good as I have never been of meds this long . I will discuss this with my rheumatologist . Thank you very much for replies 👍

allanah profile image
allanah in reply tonanawilson

For me it's a long term thing. The inflammation if not controlled even if your not in pain can cause joint damage. Glad you had your surgery and continue to get well soon xxxx

Notabenenot profile image
Notabenenot

I agree with the others - get in touch with your doctor or rheumy. I was off MTX for 7 weeks once and have never been the same since. the damage to my shoulders was awful - I still can't reach to do my hair properly, among other things. At one stage I could not even dress myself, so I would try to get back on the meds asap!

nanawilson profile image
nanawilson in reply toNotabenenot

I can’t go back on meds till my wound heals I’ve had ankle fusion . However I am goin to ring to find out how long this will actually be Thank you for reply 👍

allanah profile image
allanah in reply tonanawilson

All my surgeries have been until the wound heals . Which fir my spine was 6 weeks and my hand was 8 weeks and foot was 6 weeks ...depends hiw you heal I suppose xx

nanawilson profile image
nanawilson in reply toallanah

Yes I’m four weeks today go back to surgeon New Year’s Eve where he says I may go into a boot so hoping x ray is looking good and wound healed to start meds again never been of themThis long .

nanawilson profile image
nanawilson in reply toallanah

You sound like you have been throughIt .This was my second surgery and I’ve got horrible feeling may not be

Last 🙈

nanawilson profile image
nanawilson

I do think I spoke too soon tho I had flu jab yesterday and every part of me is aching this morning. 🙈

allanah profile image
allanah in reply tonanawilson

😂😂😂😂😂well better than getting a big dose of real flu 😍

nanawilson profile image
nanawilson in reply toallanah

Yes definitely I’m late receiving it this year never flicker normallyHaha

allanah profile image
allanah in reply tonanawilson

Hugs xxxx

nanawilson profile image
nanawilson in reply toallanah

Thank you x

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