when in remission ...............

[lizziebrush]

I am now in remission after 1 year on methotrexate by injection. Just wondered if there is anyone who now tweaks re the injection eg not every week and not always 25 mls. When I went abroad I did not take injections with me and was fine for the 2 weeks. Its just that I can not stand the side effects every week. Can anyone relate to this and understand and have been tweaking and everythings ok?

thank you

P.S I do not get a lot from the consultant, and all the rheumy nurses say oh! I will have to ask the consultant and get back to you. Feel very much on my own so hence the blog

[watson3]

Yes I can understand this. Rd side effects. I plan to withhold mine this week. Had such a rough week this week. No mxt for me at my request.

Carole

[Hidden]

Completely understand this. I haven't been told I'm in remission but elected, with the support of one GP, to come off injectable MTX for 4 weeks to see how I get on with side effects. I have found that most of the stuff I was blaming on MTX and Hydroxy combination have not been caused by the medications. I am also stiffening up now and feet and hands/ wrists ache so have reconciled myself to going back on the MTX in a week's time when four weeks are up. The only side effect that I'm sure is down to the drugs now is the nausea (despite extra folic and switching to injections) but I am now convinced that it was the combination of Hydroxy and MTX and I think the doctors will be okay with me stopping this additional dmard now. If I get back to feeling in remission and my rheumy agrees then I'm going to ask to drop doses slowly - hopefully with his support.

I understand all the arguments that say we are so lucky to be in remission that we should just put up with the side effects. If you're struggling with uncontrolled RA it must seem very strange for others in remission to contemplate coming off or skipping doses. But these are drugs we are expected to remain on for a long time, very possibly for life, and I think it's natural that we want to make completely sure we do really need them still and to have the odd break. It stays in your system for up to 6 weeks so I really don't think it will harm to drop doses occasionally. Not sure about more often - probably better to take less every week instead?

The human mind is very complex and it seems quite reasonable to me to question and sometimes to tweak. Our reasons for doing so are our own and it is not for others on here or anywhere else (including our medical teams) to obstruct this - but I do think it's better to do this with support from your medical team if possible. For what it's worth I've heard that some rheumatotogists actually advise patients to have breaks because they understand that it's very difficult to continue taking them without any evidence that the RA still exists. It's one thing knowing it rationally but another thing knowing it in your heart.

Could you not ask your rheumy if you could try reducing MTX slowly? I'm not surprised that 25mg of injectable MTX is giving you some side effects - it's a high dose. I've not made it over 17.5 yet. A rheumy told me that 15mg of sub cut MTX = the equivalent of 25mg of oral MTX in terms of effectiveness. I'm surprised that more people don't get switched or even take it this way from the start. Tilda xx

[Hidden]

Hello there,

for obvious reasons I find remission very fascinating! It's not a subject I know much about so I can't answer your question but hope you don't mind me asking you one. I suppose what's puzzling me is whether your Rheumy declared you to be in remission and, if so, what they advise re. your mtx dose? As Tilda says, 25mg sub cut mtx does seem a high dose for someone who is in remission.

I was kind of hoping that if I went into remission then my drugs would be lowered to maintenance dose levels.

Luce x

[lizziebrush in reply to Hidden]

HI Woolly,

I too was hoping that once in remission, then maintenance only dose levels would suffice. No one can give me an answer when I ask the rhemy nurses. I want to take the minimum dose for the maximum benefit, as after all it is a drug and one I am told I have to stay on for LIFE!!

[caggy]

Umm! tweeking! I'm not sure but as I injected my 20mg MTX this morning the thought did cross my mind "how long?"

we are all told we will be on the meds for life/long time, but I agree we are NOT told if by taking meds that long if we are ever free from RA?

Is remission just a time when its quiet?

Does it ever go away completely?

When or do they retest? and if so what?

We know that the bloods stay stable when we do, like the CRP's and the ESR's But do the RA factor or the anti-ccp?

I was told by my GP nurse that they would consider reducing meds if and when I had no symptoms for over 6 months to a year.

I nearly make a month then I over do something and can't move my wrists.

Then, like now I haven't taken one painkiller for a week, long may it continue.

Sorry I seem to have more questions than I first thought.

Oh and I don't think I have any side effects apart from a sore place where the needle goes in, and today I think my skin was made of rubber I had to push it so hard it hurt.

Continue the dabate

interesting, Carol

[Jan66]

Hi, I use sub cut 25 mg MTX once a week and guess I am really lucky that I do not suffer any side effects, thank goodness.

I do "tweak" though, just by moving the injectable day forward by one or two days on occasion, have also missed a week now and then especially if I feel even a bit under the weather. This doesn't cause any adverse effects and I am grateful that the weekly regime is under my control.

Hope this helps, jan

[selina]

I do think it would be useful to have some study information on how disease activity is affected by reducing/varying doses of an established drug regime over an extended period.

I, for one, am grateful to be "in remission" (although I don't have a clear idea what this means) and would hesitate to take maters into my own hands. I suppose I just trust my rheumy team to know best! Probably naive, I know.

Good luck to the brave ones!