I feel the need to verbally eject.

Saw the lovely OT today who agreed I've had a hell of a few weeks and now off the MTX everything is popping up like a good 'un. So this is how it goes.

October family funeral, stepmother run over by a bus whilst on holiday in Canada

November impetigo, cellulitis, antibiotics no MTX for 2 weeks

Start taking the MTX again but smaller doses, don't feel well enough to take the whole lot

Mid December nasty cold with cough, throat and sinus nonsense. Off the MTX again.

Monday before Xmas took the MTX, then allergic reaction, puffiness in the face and feeling generally very unwell indeed. Temperature, cold sweats, dizzy, nauseous, you name it I was feeling it and totally beside myself

Went to visit family, big mistake, shouldn't have done it. Woke up with full body rash, emergency appointment with the worst nurse in the world, about whom I have since complained, she couldn't give 2 hoots and almost accused me of making it up! Went home as soon as husband sober enough to drive.

Last Friday saw my lovely GP. Continuation of allergic reaction, expect more, the MTX is still in your system, keep him informed, don't take anything apart from paracetamol for as long as you can stand it just to make sure nothing else makes the allergic reaction worse.

Today OT very understanding, good advice, push for appointment with the consultant to get onto something else, don't put up with too much before getting a depo for a bit of light relief, start taking the anti-inflammatories again when the puffiness has gone and hope for the best. Yes, MTX is getting out of your system otherwise your hand, shoulder, jaw and ankle wouldn't be that bad!

At the same time over the last 3 months I've been trying to sell my business but have decided I can't do any more of this stiff upper lip soldiering on malarkey and decide to wind it up and have a closing down sale, the vultures are circling and long standing customers begging me to carry on making soap just for them. So I ran away and had a lovely lunch with a friend!

So here we are minding the gap between drugs. I swear I can see my joints laughing at me. But I really don't want to go down a new route until after we've been to Norway in February. Somebody went and blew almost every penny we have on an extravagant holiday, just for his benefit so he doesn't feel so bad about his special birthday. Well, OK I am looking forward to the Northern Lights and dog sledding and the Munch gallery and the train ride to Bergen as well.

The next chapter begins!

Anybody know any good jokes?

Hello Sara,

Well,. there was a Scots man, and English man and a Welsh man . . . . . . . ha ha

Sorry to hear all your problems things must pick up for you in 2012. However your booked
Holiday sounds great and something good to look forward to.

Good luck for improvements soon.

Rose

Hi Sara

You have had a bad year in one way or another. I hope things improve for you in 2012. Love and prayers.

Sheila x

Oh Sarah, what a time you've had!
I really hope things start to pick up for you, both healthwise and with selling your business.
Hope you can start another treatment soon and get a depo before you go on holiday! I'm very envious, I'd love to see the Northern Lights!

Love Doreen xx

Hi all,

The next chapter is postponed.

So soldiering on as per but got the depo last Saturday and feeling a tad better, bring on Norway. Said to the GP right then, do something, put me down or write the note to say I can't travel and cancel the holiday. He did the right thing.

Strange today seeing the rheumy nurse and her then popping in to see the consultant next door twice and then her telling me what he said about future treatment. Consultant by proxy, very bizarre, has he become allergic to patients? He was in a bad mood anyway according to a mate of mine who was seeing him later on in the morning so sort of glad I didn't have to put up with him being Mr Grumpy.

So its Leflunomide next but not for a while, I'm having a drug holiday.

Thing is, the blood, it lies.

ESR and CRP was always normal during MTX monitoring so I assumed the MTX was keeping them that way. Turns out that they've always been normal. This is why they look at me in disbelief when I tell them what is going on, who can blame them? Today I found out that the rheumatoid factor was 128 when I was diagnosed. I sort of assumed that the diagnosis was made on the basis of the inflammatory markers as well as the RF. Clearly not.

But today was the first day I felt like the rheumy nurse was listening. Even though she said I had never reported how bad the MTX made me feel, I had to put her right on that one! It wasn't just a case of "your bloods are OK, next"

So, we'll now see how long it is before I'm on my knees begging for something, only I wouldn't be able to get up again so I'll just have to pretend!

Sara
x

Hi
Just a thought - but have you had an anti ccp test?
I was sero-negative and had high CRP(151) and ESR(119) before I was on drugs that began to be effective (2009)

When deciding what drug to change to in Summer 2011 when an anti tnf had caused side effects, I asked for an anti cccp test - which came back positive - so my diagnosis changed from sero-negative to positive.

Hope you get it sorted soon

Apologies to all who I've meant to post replies to with words of encouragement rather than wisdom but everything's been topsy turvey again dealing with another 'gap'. The leflunomide didn't suit. After 2 weeks of headaches every morning and my face erupting all over the place, the Rheumy nurse wondered why I was persevering! Well, what would you do? Take a chance on the side effects subsiding and the stuff doing its job or hanging around for another round of appointments before trying the next thing?

So another treatment gap, off to the GP tomorrow hopefully he'll give me another depo and I can skip through the next couple of months whilst waiting for the next appointment at the end of May. I'm at the point where if they offered to put me down I wouldn't put up much resistance. Its me hip see, I'm all crooked, I find myself sitting with one cheek raised because its too painful to sit on it, hard inflammation at the top of my leg and bum ache like you wouldn't believe. I'm sure its putting everything else out, my posture has gone all to pot, just knew there was a reason why I should have kept up with the tap dancing! I finally put the tap shoes away this week, its like admitting defeat. Anyway, no time for too much wallowing in self pity need to get in the shower and off to see the OT.

Take care all
Sara
x

Thanks Rose for taking time to reply I know you've got your own bucketful to deal with as well.

So the latest. lots of nagging from the OT about doing too much and let me look at your diary and when do you rest etc. Suggested I get my orthotics checked out to make sure nothing's changed and they're not doing anything to contribute to this hip thing. A referral for a driving assessment and a promise to slow down even more. Oh, and another nag about using a stick, not in public one asks, apparently yes, in public. I need to make friends with my stick.

GP is in my bad books. No depo today, its only just 3 months and your hip thing is bursitis and you'll need a depo in that, I can do it blind or get it done under x-ray but it'll take longer. I asked him what his strike rate was, he said he didn't have the statistics to hand, so I got in with, so don't put any money on it then? Great, go away and think about it? Yes, I need knowledge to make an informed decision.

So I've been looking through posts on here about bursitis and thanks to Lyn's experience (that girl is a walking rheumy encyclopaedia) I rang the surgery and asked for the referral. On the basis I'm a big baby, only want that once if at all possible and I've been putting up with it since January, a bit longer won't hurt (ha de ha ha) and if I'm good, rest up and do some gentle hip stretching exercises it might have gone down by then and I won't need the jab. Nothing personal Mr GP but I'd prefer to have somebody able to see where they're going with that needle. Ever the optimist, well mostly at any rate. Had to have a bit of, I don't want to have to deal with this flaming disease anymore, moment this morning but now picked myself up off the floor, given myself a good slap and told myself to get on with it.

Got a consultant appointment for the end of the month so we'll see what they suggest next, in the meantime symptom control or otherwise is about as good as it gets. At least the spots are subsiding and I'm no longer frightening the small children of the village, well not by the way I look anyway.

Thought for the day - You know you've got RA when you carefully select what pants to put on before you visit your GP.

Take care all, hope you've got sunshine today, Cornwall is lovely!
Sara
x

Poor you Sara. Shame you've got to wait until the end of the month. That must seem like forever. Try to hang in there. I'm sure they will come up with another promising drug option for you. Like you, I got rashes with the Leflunomide and had to discontinue. I thought I'd go barmy with all the waiting and wondering about what would happen next. Now I am on Plaquenil and due to restart Mtx (when my virus has cleared up) and feel quite hopeful mentally, if very sore physically. They will get you back on track soon with a new plan and renewed hope. Best wishes from Naomi.