Snowed in & musing ...

Snow has put the kaibosh on our plans to go out this evening. Just have to put up with it. Woke up thinking about Methotrexate this morning (for a change!) and about all the fears and confusion surrounding it. (I know of course that a lot of us, a lot of the time, are just damn grateful for it though.) Was trying to explain to a neighbour the other evening why I take it - she had breast cancer many years ago and eventually refused any more chemo, she couldn't stand another round of it. Luckily her gamble paid off and she has been free of cancer for over 20 years. But she stubbornly maintains that I should get off the drugs or at least refuse to add in Sulphasalzine which is what my Rheumy wants me to do. I tried and tried to explain why I take them, but got nowhere. Alas, she's another one that doesn't understand RA no matter how many times I try to explain it.

But she's right on one thing, being on mtx annoys the hell out of me, as it does a lot of people. There's this feeling, often expressed here in various ways, that when it (or the other drugs) works you end up thinking that the RA's gone, & resentment at the pill popping or injections increases even more. Thinking about it, the drug treatment for RA is a funny business. With so many other illnesses drugs, especially the stronger ones with risks of serious side effects, are all about the promise of a cure. I'm probably showing my ignorance here, there must be loads of diseases that are kept 'under control' rather than being curable, but nonetheless there's this feeling that drugs are all about making us better - proper better, not just 'under control'.

My poor little brain struggles with this. I'm taking all this stuff - so where's the cure? Oh, there isn't one. Cue: 'well maybe I don't actually have RA then, seeing as I feel so good today / this week / this year.' But next thing, back to reality and mtx (or something) extends into the future, on & on.

I'm not complaining, just musing. I'm lucky with the drugs, I accept the need for them most of the time. But I'm stuck in a bit of a loop because the treatment these days is 'aggressive' (hopefully in a good way) and a part of me will always associate that kind of regime with a cure.

Well, that's 20 minutes wasted thank goodness. Hope everyone is cosy and less bored than I am!

Luce x

[Hidden]

Hi Lucy, You are right loads of us think we have not got the disease anymore when we go into drug remission. But you soon realise how much when you have to miss a couple of weeks and it all starts to come back, which is what has happened to me. Yesterday I could only type with a couple of fingers, whilst the rest of my body was in agony and I had to revert to my second stage painkillers during the day, something I had not done for several months. I am really looking forward to my next injection on Monday as I know it will be the start back to recovery again, and drug induced remission. x

[sylvi]

Luce i think when i'm having a good day that its gone away and then the next day i get up and its back with a vengance. Sadly there is no cure for us so i would take what your neighbour says with a pinch of salt. Cancer ther is a cure for it, and when the cancer is gone so do the drugs. xxx

[Hidden]

no cure unfortunately . i did manage near pain free remission for sixteen months

[Hidden]

Luce you know how I feel about this whole business so I won't bang on. Basically the same way of you with endless inner turmoil. Unlike you guys however we have no snow here currently although it's bitterly cold. I have therefore been really busy trying to get ready for community engagement week and trying to build a power point tonight to work with young people in our local gallery next week - all the day after my blasted MTX! Also been offline all day which was so annoying because when husband woke I had planned to watch Question Time and then last night's episode of Silent Witness in time to watch part 2 tonight - grrrr!

Now catching up and reading Cathie's great news etc and remembering that a week tonight I'm singing in a concert and have to learn 6 songs in Orcadian (Orkney dialect) so that when all these people come along to watch the bulk of my choir grappling with these wonderful broadly spoken words I won't look like a total twat!

I think feeling better (folic) and being really busy has helped me have a few days where I haven't been so worried about MTX. I think for a while I've rationalised it.

But I did want to tell you that yesterday we bumped into an old friend on the beach. She has Crohn's and has been in denial for ages about it. Over Christmas however she was rushed into hospital with lots of bleeding and in terrible pain and the doctor said that if the highest dose of Prednisolone doesn't kick in soon she's going to need to have her stomach and bowel surgically removed and have feeding tube and catheter inserted. She looked dreadful I have to say. My OH said that I have an autoimmune disease too and am often in denial about it. She didn't really know about RA but he explained it very briefly and I told her about MTX. She said that she is now going to ask if there are drugs which modify Crohns in the same way because of what my husband was saying. I think MTX might sometimes be used for Crohn's but will look it up now. Anyway the point is that we are lucky to have a drug option really and I am going to try my level best not to keep querying it endlessly because it's probably more disruptive than it is helpful sometimes - but that said it's also really helpful to have a fellow RAer who I can worry with sometimes!

Re cancer - I'm afraid I agree with Sylvi. There are lots of cancers that can be cured and many people who have chemo have hope that a day will come when they can stop taking drugs. And I just don't see how people perceive cancer as more terrible than a disease like Crohns or MS or Lupus or severe RA? I never will get why people put cancer up there as the most terrifying disease and fund cancer research to the skies whereas people on my local radio station make jokes about "my arthritis". I'm afraid it gives me total sense of humor failure - which really is unusual for me! Tilda xx

[fastball in reply to Hidden]

i have Crohns also and the fact that i'm already on mtx saved him the job of giving it me.The consultant did say if i need to he could change it as mtx is'nt the one they usually use. Mtx works for me at the moment .

chris

[Hidden]

Oops meant to write a colostomy bag not a catheter poor love.

[Hidden]

Georje, so great to hear that you have confidence that remission is on the cards & seems like that confidence is backed by long experience. I'm still relatively new to all this. I think my rheumy is a bit puzzled by what's going on with me but I'm impressed by his efforts to work it out! So I'm probably at an early stage in the drug journey and at this point hard to know whether mtx is the business or not.

I know there's no cure for RA & I've seen plenty of people suffering terribly with other diseases. Cancer does terrify me, that's for sure. I don't think I'd have the luxury of musing idly on stuff if I had cancer, I'm sure it would affect me psychologically much more than my personal form of RA does but that's just me. Meanwhile RA is my lot in life and I'm far from in turmoil but there are questions, of course. All part and parcel of getting to grips with it, I would say. Summer, 16 months is a wonderful long time & if it's happened once it can surely happen again, hopefully soon.

Luce x

[Hidden]

Luce I didn't mean to sound dismissive of cancer and for me RA is infinitely preferable in the way I have it of course. I suppose I wasn't thinking of me though - I was thinking of people with MS and Crohns which are both very prevalent up here and thinking that at least a diagnosis of some cancers would be less scary than having one of these. Although I've lost friends and family to cancer I've also had many more friends survive it who are now fully cured. And yet people seem to fear all cancers over other diseases. It's all relative of course but that woman with Crohn's yesterday made me want to weep. Tilda x

[Josie2]

Im just feeling sorry for myself at the minute and have never so far felt ive been ra free or even had it under control.

Tried mtx, lousy side affects so had to come off it, tried leflunomide.....didnt help me at all!

Just started hydroxy but not covinced its gonna help (pessamistic before its even kicked in)

There must be some drug out there, different as it may be for all of us, but some cure.....or even just being pain free.

We can live in hope

Xxxxx

[Hidden in reply to Josie2]

Just peeped at your profile & I've not been diagnosed much longer than you - I think a year or two on from diagnosis is probably quite a difficult place to be if things aren't yet sorted out. I am more or less pain free but not, apparently, under control which I believe is relatively unusual. I really appreciate how lucky I am but with inflammation rising & swellings that have never gone down I know that I have to try different drugs. But I'm not as eager or optimistic as I was a couple of years ago & like you I'm struggling to have confidence in the treatment. But it is relatively early days for us both, right? And when I'm at my most level-headed I see that 'hope' is perfectly reasonable - so many folk seem to get the right drug eventually.

Good luck with the hydroxy! Luce x

[Hidden]

I agree with Luce its the lack of a cure that winds me up when we take such strong drugs. If I was a diabetic on insulin I would grasp that I was replacing a chemical my body wasn't making naturally as it should be. But there are other conditions like angina and other heart related diseases that keep people on equally powerful meds so that's that really. I feel very lucky just now and am determined to enjoy it while I don't feel sick or in pain - even if it only lasts a few days! X