The day is arriving

As many of you will know I’ve been blathering on here quite regularly over the past month or two being quite ‘up’, relatively sensible and what not.

I’m off to the hospital today to get the base blood tests done before I start injectible mxt sometime over the weekend assuming my prescription arrives in the post by Friday. And of course assuming I can use the pen thing properly. And I’m now getting jittery. I know I’m finally starting on this road with all these meds and of course I’m wondering where I’ll end up. How I’ll end up? What side effects will I have to cope with? How many bad days is worth some good days? etc etc etc. I simply have to start this too as already there are erosions on 3 joints since being diagnosed this time last year. And I now have the rheumatoid factor and positive anti-CCP antibodies, all indicating I’m more likely to get joint damage. Big poo.

I’ve been on a steroid holiday for the past month too. Which has helped so, so so much but can’t last either. I also very determinedly live in ‘the day’. That’s marvellous if you’re having a great day and obviously not so marvellous if you’re having a bad one.

So here goes everyone. I’ll no doubt keep you informed as the weekend goes on. Wish me luck. The nurse told me yesterday not to inject over the carpet as if all goes wrong the liquid mxt stains something rotten. So now I’m now planning doing it on the kitchen floor on top of newspaper rather like being a puppy who learning how to be toliet trained.:slight_smile:

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Oh good luck! Safe journey!

Newspaper etc. conjures up quite a picture!

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LOL, I am predicting an anti-climax. But I wish I could see a picture. Your dog is going to love having you at his level: mine would have been showering me with kisses.
Good luck!

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Good luck!! Haha you’ll be fine! I’m picturing you throwing the needle in the air and catching it in your thigh :smile: I can’t imagine actually needing the papers on the floor… just remember to know the next 2 steps and don’t be like me sitting there with an open needle trying to open the alcohol swipe with one hand and my teeth… (Which is actually the step before removing the needle cover haha)


I haven’t injected MTX but I have injected plenty of other things. It gets to be something that you do, no big deal. Of course, you should have seen me the first time that I ever had to inject myself. I worked myself up into quite a tizzy. But because it was for fertility help, clearly I had a big motivator.

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I used to get anxious the first few times I gave myself a MTX shot. But, like @Stoney said, it just gets to be your usual way of being.

I usually give myself my shots int he kitchen. I had a disaster one day with the MTX. I had just filled the syringe from the vial and placed the syringe on the counter, turned around to set the vial down, and when I turned back…no syringe. I figured it had rolled around on the counter. But, no. Alas it had rolled off the counter and impaled itself into the linoleum. Oops! Learn. From. My. Fail!

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When the arthritis first arrived (overnight) it was suspected thrombosis and they gave me warfarin to inject for a few days. Those pens were already filled, but the injection was very easy to do. It felt a bit like a nettle sting for a few hours at the injection point, then it was fine.

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Well I’m all stocked up now. Was told to take folic acid today in anticipation of mxt tomorrow too which seemed rational to me. So I’m in anticipation mode, wondering how it will all feel next week. I’ve had such a great honeymoon on my steroid holiday, I’m nervous about suddenly feeling all tired etc. Nervous about catching every damn cold or bug as well. Also because I’m nervous all I want to do is drink a large glass or two of wine as well, which really isn’t sensible. We’re meeting friends for dinner tonight so I designated myself as the driver. And I’ve a whole day planned tomorrow of doing things around the house to keep me occupied, sorting paperwork, mending clothes, doing some gardening etc until the evening when I work out how to use this injector, get it done and put myself to bed.

Anything else I should do?

Drink plenty of water! Don’t drown, just make sure you’re well-hydrated. I recall crying my eyes out looking at Mtx tablets all counted out and ready to go. More the thought of what it meant - a drug-supported existence as I saw it then - than fear of Mtx as such though that was part of it. No probs. Almost disappointed in a perverse sort of way that absolutely nothing happened immediately!

I know you have specific concerns and am crossing fingers for you in the hope that your fears prove unfounded. Blimey, your life is going to be mega organised at this rate!

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Thanks Sybil. Doubt my life will ever be mega organised though. All these sorting out notions are simply notions of distraction therapy! That means starting loads of things and most likely not finishing many of them…:slight_smile:

Well that was OK. Didn’t hurt, didn’t sting, I didn’t mess it up either. One of the cats watched me doing it with some fascination, which made me smile. And I think I feel OK this morning but time will tell.


Great to hear! I always think the first time is the hardest, and you are past that. Time will tell, as you say, but you are on the path now. Always remember that whilst at the beginning you never know how big the Gap is, from the first day you start treatment, it keeps getting smaller :grinning:

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Felt increasingly foggy headed as the day wore on. Drove the car at lunchtime and truly wondered if I should have been driving. But felt better in walking the dog which was were I was driving to. And managed to do a reasonable day’s work from home, although stopped at 4pm. Certainly I wouldn’t be looking forward to the long commute home had I gone into work, 3 trains and driving at the end. I’m drinking loads of water and squash. But think I need my sofa now. My wonderful positive mood of the past few weeks is down too. Just feel very tired and lethargic. I assume this is all normal. But when does it pass???

Soon. If you’ve kept up on your water then fatigue and grogginess should be gone by morning. It ought to get easier over time. For now, get some sleep!

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Hey! Bloody Well Done!

Might finishing steroids, or tapering down, account for the lowered mood? The lethargic feeling shouldn’t last. Hope all goes well, it’s a big bridge crossed for sure & you seriously had to gird your loins to cross it didn’t you? (I think that’s the right expression, I shouldn’t really use sayings I’m not so sure about).

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Thanks Sybil. I must confess to spending quite a lot of Sunday evening having that conversation with myself which says ’ you know I’m just not going to do this? It feels so wrong’, etc etc etc. However I knew I had to. The problem with a decent steroid response is that you feel so damned good you think well then ‘what’s the problem?’

I’m still on 10mgs a day so I haven’t tapered any further since I came back from holiday. I tend not to do so fast at all, I taper ever so, ever so slowly. Also since mxt takes so incredibily long to do anything for virtually everyone, there’s no point in tapering too quickly as then I’ll end up hobbling, extremely fed up and suffering whatever side effects mxt wants to throw at me. That seemed like a recipe (spelling?!) for complete disaster and having a probable another ‘non compliant’ written on my medical notes!!! I plan to stay another week on 10mgs then go to 5mgs and see how I do. If I break through on 5mgs I’ll go back up to 10mgs for a week and go back down again, whilst waiting for mxt to kick in if indeed it will. As you know I’m not at all convinced it will do anything at all but I’m happy to proved wrong on that one.

So consequently the ‘down’ mood yesterday wasn’t due anything to do with steroids. It was due to feeling pretty rubbish actually both from mxt and the fact I’m now on this medicine journey that it will be unlikely I’ll ever get off, I think. It’s a bit early to know how I’m doing today, but I do feel less woozy this far. Given our fabulous weather (down your way it must be just glorious by the sea) I’m plannning on walking Freddie the dog shortly as it’s simply too hot doing so for both him and me at lunchtime.:slight_smile:

You really have battled this, it’s impressive. I think my introduction to drug addiction was simpler … started steroids and Mtx the day after diagnosis while still at rock bottom with zero to lose. And that is an easier introduction from a psychological point of view I think.

One thing that has helped me adjust to the fact of taking the drugs was photos taken while waiting to be diagnosed. I can’t understand how I managed to look quite so awful. Except I suppose that I’d been flaring for years. My lower eyelids had sagged, like very old peoples’ do, I was very skinny and not in a good way, just gruesome all round. Once the meds kicked in I started to look a whole lot better as well as feel better. So I have this documentary evidence that being on PsA drugs has benefitted my health overall, which is not really how I thought it would be! I’d assumed I’d feel total pants while at least being able to walk, but it’s so much better than that, I really think uncontrolled PsA made me ill in every fibre and I’ve come to see the drugs as (potentially, when they work well) a pretty good way of regulating an errant body.

You probably know all this. But, honestly, I used to balk at the prospect of one aspirin. The journey is worth embarking on, hard as that first step, or steps, can be.

I love the climate here. Don’t they make sparkling wine as good as champagne somewhere around here? Why didn’t someone tell me about it before lol!

Try Chapel Down Vineyard wines. Best English wines ever! On sale in lots of places especially good farm shops and the vineyard is near Tenterten! Worth a visit. I took a balloon flight from there for my 50th birthday, it was just fabulous. Poo and I’m not enjoying the lack of wine or alcohol presently either! So boring…and so not me.

My journey into PsA was different. There I was a happy healthy person with a horrid bunion. Given work’s wonderful BUPA cover I thought I’d get it fixed finally. It was a gross deformity too, starting to cause pain on walking. Had it since I was a teenager though. Forward two months later and I’ve severe tendon pain in my foot, just I started walking properly again. Then my hand explodes, literally blows up and then a couple of weeks later my whole body inflammes. And I’m left hobbling and so freaking tired it was mind blowing. Forward a month or so later and I’m told I have PsA and now must take horrid meds for probably the rest of my life.

Hence the huge tantrum. That lasted the better part of a year. I was perfectly fine before my bunion operation other than suffering it. I’d far rather be still suffering from just it than all this. So I had to grieve my loss of ‘life’ as I knew it frankly. And grieve the loss of the future I thought I was going to have. I’m doing so much better now but I’m still hugely effed off that the lack of warning from my othropaedic surgeon about the possibility of something like PsA occuring wasn’t given to me, given my brother has it badly. Had I been warned before my bunion operation I wouldn’t have elected to have it done - I know I wouldn’t have.

Of course I know PsA might still have developed anyway. But it wouldn’t done it like it did except for my bunion surgery of that I’m convinced. I had broken my ankle in 2008 and severely fractured my shoulder in 1999 and refused the surgery recommended then too and I recovered fine with no PsA, so it was definitely the shock of the surgery that ignited it.

So I entered all this kicking and screaming as you all know. I most definitely was not at all relieved to have this diagnosis, I was simply horrified, my decision to fix a bunion effing caused it because of no warning. Simply and so utterly, utterly horrified. So I guess I’ll always extremely resentful of this drug journey I must now follow, I don’t think I’ll ever be grateful for them as I shouldn’t have needed them in the first place, or at least not this soon had my orthopaedic surgeon done his job properly.

I haven’t done anything about that with my orthopaedic surgeon. I’ve three years to do so from October 2015. I still might if nothing else than to ensure he and his colleagues warn people about its possibility before embarking on private elective surgery which earns them so much money.

Anyhow I’m feeling loads better today so that is good. Had a fabulous walk with the dog first thing too. I did the injection last thing at night on Sunday. I’m thinking next time I might do it late afternoon so that all the wooziness happens when I’m asleep. I had it from about 12pm to about 8pm yesterday. Does that sound like a sensible idea or will I just get woozy anyhow?

hey poo,

you will learn to adjust the timing to fit your schedule. the aim is to have to worst of any symptoms you might experience while you’re asleep. it will become easier to predict over time. i think grieving your diagnosis is quite normal. and i’m glad you’ve moved on to medication. we all hope for relief of symptoms for you.

Thanks janeatiu. I guess it will be a bit of trial and error to start with. I don’t have many symptoms presently given the steroids for the last month or so. And obviously given the slowness of mxt doing anything I’m not about to reduce them significantly just yet.

So oddly in a way I’m just waiting for side effects to appear or not as the case may be. I had the most horrendous nightmare last night. In my dream I woke up covered in cold sores everywhere that were cracked and bleeding and so very sore. And I just cried and begged to be allowed to die.

So that was a bit of a shock I can tell you. It did sort of bring home to me how I’m feeling about this drug journey though. So I have some psychological work to do on it all - haven’t I? I am so resentful that I have to take any of them and I must now seek to change that. I’ve been on and off steroids lots of times in my life given my asthma issues which used to be so bad. So I’ve no fear of them.

I’m so sad though that my wonderful positivity of the past few weeks has just disappeared, just burst like a bubble. Anyway I’m off again to walk the dog early given it’s so hot here for us anyway. That always helps so hopefully I can blow the remains of my nightmare away too.