Counting my chickens..

Mat48

I'm starting to get seriously excited. I haven't had any pain for 3 weeks and my facial hives are going away with sense of them returning - itch and swelling around my mouth has all gone too. I've stopped taking antihistamine for four days - am sleeping - feel happy and well and my energy levels are slowly getting back to some kind of normality for the first time in five or six months. The tingling and icy cold, numb sensation in my legs and toes has gone away too and my body temperature has returned to normal for the first time in two years (the icy white fingers and toes started shortly after I was diagnosed with RA and started Methotrexate).

I don't know if this is the Hydroxichloraquine (400mg) which I've been taking for just over 3 weeks or whether it's because the Methotrexate is finally leaving my body completely. I last took MTX four months ago on the 8th August. I have been on Hydroxy before for a year and it didn't seem to make much difference - the RA didn't quieten down properly until I switched to injectable MTX.

I know you will probably tell me it doesn't matter - to just enjoy it and appreciate my good fortune for the time being. And you will be right of course :xmas_redface: However I also think it's important that I try and work out what has caused my strange symptoms to abate so I can avoid triggering hives, icy cold legs and white toes again if possible. And it could all be down hormonal changes since I'm post menopausal now.

So I would be interested to know if anyone else has had a really good experience of Hydroxichloraquine on it's own after only a few weeks? Also it would be interesting to know if anyone else has found that it can take this long for Methotrexate to finally quit the system. And if anyone has come off MTX after a period of a year or two - have you found that the RA stayed away for quite a while before flaring again badly?

At the back of my mind is the fact that the terrible eczema from which I suffered from the age of three to the age of forty five just disappeared overnight. So it's very hard for me not to expect the same thing to happen to RA and all the rest if that makes any sense?

So I'm not counting my chickens yet - and rationally I know that RA doesn't go away of course. But I suddenly realised today that I'm feeling well again for the first time in ages and am wondering if all the more recent additions (ie extra skin and circulation/ sensory symptoms) could actually all have been down to 18 months spent on Methotrexate as one of my GPs felt it was?

:carolers:

Mat48

Oh I can't edit now so just to say that it should read - "with no sense of them (hives) returning" :xmas_redface:

frogmorton

I worked that out Mat :xmas_cheesygrin:

Now, I am over the moon for you that you are feeling so well and hope it means you will all have a great family Christmas up there :presents1:

I have managed pretty well myself on Hydroxy for several years now you know, but I think it did take a while for it to help me. As for the MTX leaving the system - they DO tell those trying for a baby to give it about 6 months o so don't they? Something like that anyway, which makes you think :areindeer:

Those cold numb legs and white toes had had me worried they wouldn't ever come right so I am really pleased that they are ok again

Of course you should ".....enjoy it and appreciate...(your)...."good fortune while it lasts", but I know I too would want to know why.

What I can say is I was exactly the same when I got a really nasty itchy spell (I had had it once before but less severe), later called urticaria vasclitis (sp) I swelled up all over me; eyes shut, lips anything that ANYTHING had touched including where my underwear pressed!!! very itchy and oddly enough all my joints swelled too. I spent ages trying to find the cause because I didn't want it to happen again.

That's why you may appear to be 'labouring' it - you don't want it to happen again do you? I understand totally and really hope that this is the last you see of those odd and unpleasant symptoms.

Take care up there won't you? :areindeer:

Love

Toni xxx

Mat48

Thanks so much for your empathic comment Toni - it means loads to know that you understand why I'm trying to work things out as well as bask as bit too! I was quite sure mine was uticicarial Vasculitis too as it would have explained so much - but then I thought how the hives have actually been around for two years as have the icy cold extremities. And they all started shortly after I had begun taking methotrexate. My GP thought I should give it six months to completely leave my body and it did take six months to work on my RA. Maybe things will become clearer if my ESR drops back down as I'm sure it already has. Last taken two weeks ago and was 44.

Probably I will never know but I think methotrexate would be a no no again for me whatever. Interesting to know that Hydroxy has been good for you. I'd like to credit it with all my newly found good health but it was so instant? I looked back at my journal the other day and note that it seemed to make a fairly instant difference to pain levels last time I started it. Hoping its just the drug my body needs. Mat x

stickywicket

Mat48 wrote:

I know you will probably tell me it doesn't matter - to just enjoy it and appreciate my good fortune for the time being.

Yup. Got it in one, Mat :areindeer: You know me so well :xmas_cheesygrin: I can't, for once, agree with Toni because my own take on it all is basically that much of life sucks, analysing why doesn't take away the rubbish: it only concentrates the mind on it. Stuff comes: stuff occasionally goes: most of the rubbish is unfathomable and/or unrelated to either RA or meds so why waste the good bits? I think you got lucky, probably only briefly lucky but who cares? Enjoy it while you can :madnoel:

Remember it's only a couple of days since you needed to spend half the day in bed in order to cope with a carol concert. RA doesn't go away but, in the early years, it can fluctuate. You've had a couple of good days so breathe deep, hope for the best, don't go behaving as if you didn't have it anymore and, with luck, you might have a good Christmas. I really do hope so :noel:

Mat48

Thanks for your take SW. You are probably right but leopards can't change their spots so I reckon I will keep wondering and looking for answers - I'm am just optimist at heart! Also, as Toni says, if we can find triggers then they can be avoided and I'm a very allergic person and do seem to respond very badly to drugs. Strangely I didn't do this at all when my eczema vanished - just revelled in my newfound clear skin and put it all down to hormonal changes.

I hope you have a lovely Christmas too. :presents1:

barbara12

Mat of course you need tyo sought out what caused the hives...I know I would...hopefully they now stay away..I know nothing of your meds but always have my fingers crossed for you...xx

villier

Glad to see you are getting some relief Mat, long may it continue................Marie x

Mat48

Thanks Barbara and Marie. What amazes me is that I only really seem to know how bad things have been when they have gone. The swollen mouth and itchy hives really seemed to get me down because they took me right back to long periods of time when I was always itching and in pain. A very different type of discomfort to RA and very visible of course but for me, just as bad.

Now able to find energy and motivation to compile a last minute Xmas card list and read recipes for Christmas Day fare. As well as three sons all home from uni I've got sis and her two young children coming up here for a week so long may my newfound energy last!

Wishing you all as pain free and happy Christmases as possible!
Mat :xmas_cool: xx

Boomer13

Oh I'm so glad to hear you are feeling better!! Thanks terrific :presents1: Long may it continue but don't go jumping about too much yet, ok? If you are still feeling good in a month, then jump away (but not too exhaustion)!!! It's a nice Christmas present, yes? Thanks for sharing your feeling better!

Finding those elusive triggers would cause me to analyze things too. Since folate has such wide-ranging effects in our physiology, I can understand methotrexate having a broad affect that may not resolve for six months or so. That makes sense, and, of course changing hormone levels in the midst of all. :madnoel:

Long may it last for you, Mat.
Cheers :areindeer: !
xxAnna

Mat48

Thanks Anna that's lovely of you - especially as you are going through the mill so much just now. I have got a scabby scar left over right in the middle of my forehead from the biggest hive - it's almost stupidly symmetrical! xxx

Toots

Very happy to hear of your counted chickens! Long may they roost! x

Mat48

Thanks. Saw GP this morning as requested - she was completely baffled too but favoured the theory of methotrexate leaving my body or else a random post steroid flare (including hives) rather than Hydroxy being the wonder drug for me. Reason being that I took it for a year with MTX and my ESR continued to soar and I continued to flare until switching to injectable. She took my ESR again today out of sheer curiosity. It was 55 a month ago, 44 two weeks ago so perhaps it will be 33 this time?! And maybe this relative good health is just an early Santa gift?! :hoho: :presents1: