OCHT, I AM IN A RIGHT HUFF

carola

Aye, I am in a Methotrexate huff.

Been on for yonks 20mg weekly of Methotrexate however a handful of weeks ago my liver ALT readings went sky high so told to stop taking immediately. Meantime, I had been steadily decreasing Pred. steriods to 4mg daily for now.

So, whilst off Meth stayed at 4mg Pred so could see if Meth had been working for me or not. I was convinced it hadn't been however after a couple of weeks Meth free symptoms started to appear. So peed off.

Liver readings back to normal so started taking Meth again. Waiting to start injections. I am not impressed as want to not take Meth.

My goal is still to come off all meds. One day it'll happen meantime resuming decreasing Pred now that I am back on Meth.

As some may know, I always find a silver lining and the silver lining is that my face has started to take shape and my jeans are too big for me as I have decreased the Pred - woo hoo!

Turning 40 yrs this Sunday so my goal will be to be back to normal by my 41st birthday.

Feel a whole lot better typing my huffing and a puffing on here but still sticking up two digital extremities to my bottle of Methotrexate!

Have a good day everyone!
Carol and keep smiling xx

stickywicket

Carol, I'm sorry your plans have been messed up. I applaud your attitude of being on as few meds as possible and I do know how disappointing it can be when the joints don't play ball. My gut reaction is that 'meth free' might be an ambition too far but, hey, you never know if you never try.

Great news about the face & jeans. Have a lovely birthday but just watch those ALT levels!

skezier

Hi Carol,

Sorry you have had the liver bloods thing... its something that can happen now and then. I think you are so good at being positive and your goal is a good one... i also wish I could get off mtx.....I ts not been kind to me

Leaving you a ((((( ))))) and a bucket of good blood tests draft. Cris xx

dreamdaisy

Come on Marilyn, is it really that bad? You are down to 4mg of pred, which is excellent (I am stuck on 6 for the next two weeks, which is currently about 14 too few) the meth was obviously doing a good job of controlling symptoms, which can only be a good thing, doing injected meth means a smaller dose as the liquid is more powerful as it is not being digested, surely it's a win-win. I agree with Sticky, although your ambition is laudable don't beat yourself up about it if it doesn't happen. We are fighting tough diseases, and tough diseases need meds that have a bit of bite to them. I have been on injected meth for years and rarely have any side effects from it, I don't even think about it now (mind you, I never did from the get-go). It can work and it can work well - I reckon you are in that elite club and I envy you.

Have a brilliant birthday, I will picture you strutting your immaculate stuff round the sunny streets of Edinburgh knocking the boys dead with the glamour! You go, girl! DD

dopeykit

Hello,

The title of your post made me laugh so much I had to post

Sorry to hear MTX is being a poop and about your bloods. I think sticking two up at the bottle is admirable though - I will do the same in solidarity!

Kit

nanarose

Carola, may I ask what your liver levels were? Mine have been going up regularly, and my rheummy nurse was concerned, but Doc said they were fine, though higher than normal. so I am confoosed! :???:

I'm on injected meth, still at 25 mg, and have been pretty good for quite a while, but now symptoms are resurfacing, worst luck. I too had the... ETT's.......'extra toilet trips.... and the nausea on the tablets, but the injected meth is so much better, if you can manage to steel yourself to do them!
I have only had injected steroids, which I understand don't lead to as many problems as the tablets, but good for you to manage to get your dosage down and as a big bonus, to lose weight too!

I do think positive thinking helps, but for me personally, being on meth if it works, is better than suffering without it, although I'm sure everyone would rather not be taking it at all.
Enjoy your new slimline figure, and I guess with this disease, the poison we take can be the longed for cure for many.

Good luck. x

dreamdaisy

The highest liver figures I ever had were in the upper 600s, 685, I think, that was when enbrel had a go at exploding my liver rather than doing its intended job of tackling the PA. The odd thing was I had no idea it had done this to my liver, I felt absolutely fine throughout while everyone else jumped up and down in alarm. I now average between 18 and 28, tho my last reading was 40. I wonder why? :oops: I am working on reducing that for the next blood test. :sad: My hospital is happy with anything under 50, the figure is highlighted in red when it tops 60. DD

stickywicket

How are those two digital extremities today, Carola? Up, I hope.

carola

Hello my friends and thank you for the replies.

Woke up with a fabulous effort of a cold. If I remember correctly I suffered a bad dose of a cold when I first went on Methotrexate so putting it down to that.

Stickywicket - thanks for your positive thoughts and aside from above cold, I am all good today!

Dopey - aye, the fingers are still well and truely in the air however don't know if that is due to my aroggance OR arthritic fingers haha.

Nanarose - my alt had went up from 12 to 135. After 2 weeks of no meth they sit at 45. Just got some bloods taken this morning so will see what they are like shortly. My highest reading of 135 is piffling compared to DD's readings! Yee gads!

DreamDaisy - Aye, you are absolutely right about my attitude. I am prob aiming too high but hey ho, that is what I am like - total extremes. Cannae wait to see if I am brave enough to self inject. Think I will be. Yep, going to try all glamour at the weekend. Going out on Sat and Sun night and doing a yoga workshop sat daytime. Keeping my paws crossed that I will be able to wear high heels. I will try anyway. Although maybe not my redpeeptoes as the red will match my hooter with this cold!

Thanks again everyone. I've a feeling my body is going to tell me over the next few days in the run up to my 40th not to get too cocky with myself thinking that symptoms are under control as they are rumbling and a grumbling away here. Ah well, I'll use my other hand to stick up another to fingers to that!!

Hope you are all having at least a half decent day today.
Love, Carol x

frogmorton

Hi carola

Good that you still have your silver lining

VERY VERY good your face is 'coming back' and your jeans are loose

Look at you

You are doing just fine l reckon and l in no way blame you for your gesture at that bottle!!!

Love

toni xx

julie47

Hi carola
Glad to read you are feeling a bit better today.
Hope the cold goes for what looks like a busy weekend ahead.

And great news about your weight loss too.
Happy 40th birthday for saturday.

Juliepf x

stickywicket

carola wrote:

I am all good today!

Carola, whenever I say this to my son he always puts a patronising arm round my shoulder and laughs. "No, Mum, you're well. It's up to others to decide whether or not you're good."

We shall require a full report on the weekend but sobering up time will be permitted.

dreamdaisy

Self-injecting is no biggie, honestly. I did for a while with the enbrel (twice weekly) and for the past two years it's been fortnightly with the humira and since January weekly with the meth. It's a piece of urination, basically, once you are used to a) the idea and b) the reality of doing it. You'll be fine, girl, you will be fine.

I used to think that the meds would sort it all out as that was my previous experience of meds from a doc, I now know a great deal better. Mind you, I ain't got what you got, it could well be that you will be able to get away with just the meth, at a lower dose, but if that is what works . . . . . well, surely, it's a good thing, yes? 135? A mere 135? Who the phack was worrying about that? dd

tillytop

Hey Carola

No wonder you were in a right huff!!! But so well done with getting right down on the pred and good luck with the injected meth.

And finally, Happy, Happy birthday for the weekend! Enjoy yourself and I hope you manage the high heels!

Lots love Tilly xxx

nanarose

Thanks for the replies about liver values....this thread although about serious issues has really made me giggle with some of the funniest posts! It's so great to hear that even suffering with this horrible disease, people can still maintain a sense of humour! :P

DD, how are you still alive, and breathing never mind being able to write witty posts! OMG, your levels were unbelievably high, no wonder the docs were panicking!
So far I'm sitting at 82 for my liver, which I know doesn't seem too bad considering the levels some of you have had, but my rheummy nurse said that if I got over the 80, they would have to look at my meds (meth) again.

Oh well, we shall see in due time I guess.

Good luck with the high heels Carola, tell me what it feels like to wear them again, and if the pain is worth it..... x

barbara12

Hi Carol
I haven't a clue about the meds, but I do know that you sound more happy than usual, and most of all positive.
I really do hope it all works out for you, and wishing you a very happy 40th I loved being 40....mind you I would say that now Im 60
You take care, and I wish you well with everything.

carola

Many thanks for all your posts.

I'm quite looking forward to injecting the methotrexate - picturing myself getting carried away with big stabbing actions shouting "take that you lupus and arthritis feckers and that and that and that" and then totally overdosing on methotrexate hahahaha!

Still snuffling with the cold and big red nose but much better that than 100 year old joints!

Hope you are all having a decent day xx

dreamdaisy

I remember the liver bloke telling me that yes, the figures were high but that people with serious liver trouble had readings in the low thousands. Now that does make one think. And reach for another glass of summat lovely. DD

carola

Haha DD! Gives us something to aim for then!

Shall we compare notes on which tipples give the highest readings?

Hope you are well today xx

dreamdaisy

I think when your figures are that high you bloat and turn an odd shade of yellow. Don't fancy that meself - I am ugly enough as it is! I think it's the quantity of tipple that counts, not its strength. :shock:

As for today, well, I have been a damn sight better than my current level of grottiness. :sad: Hacked off does not even begin to cover it. :sad: Never mind, it will pass, all things do.