Finally a diagnosis!

Mat48

Hi All,

Just thought I'd let you know how I got on this morning. The rheumatologist was really nice and very clear (I recorded the whole consultation on my smart phone so I could play it back to my hubby and myself later - excellent and recommend to anyone who tends to let things go in one ear and out of the other as I do.. thanks so much for the suggestion whoever it was on this forum!?).

He said that from everything he could see for himself (fingers, knuckles wrists, feet and knees all showed inflammation to a degree - hands were pretty dramatic looking today as they've gone a kind of green?!) RA was the diagnosis - but "we must keep an open mind" in case it changes and becomes clearly a different type of inflammatory arthritis such as Psoriatic or Lupus or AS.

So he said sero negative RA - but I pointed out a bit later that although my anti CCP was negative my RF was positive and he said this was a good point - but important "not to get hung up on labels" - it's RA for now whatever.

He asked me what I was hoping for and whether I would be willing to give Sulfasalazine or Methotrexate a go? I had to remind him that I'd tried Sulpha back in June and had a dramatic allergic response to it. He then told me that if I came to MTX expecting bad side effects such as hair loss and nausea then I'd probably get them so best to keep positive and think of it as something that will hopefully make me feel better - and then if side effects happened my GP could phone him and discuss alternatives when and if the need arose. He said this three times - looking me in the eye with a smile - so I think I must come with "horror of MTX and hair loss" written on my forehead?

Anyway my GP has just phoned to find out the news and say that he's glad about this diagnosis as it's what he expected and hoped would be achieved today (bless!). He said to pop down to the surgery tomorrow with the rheumy's note (letter will take a month in typo logjam so the consultant wanted to get around this and get me started asp) he will get a prescription for that and folic acid for me to start as soon as i want to start.

Interestingly re another recent thread on here - my GP then asked me if I'd already had the flu jab? Answer no - never have had it. He wants me to have one before I start on the MTX but this might not be possible because currently out of stock in this health authority. He said if they can't get one for me very soon (next week) then I would have to get on and start the methotrexate anyway. But he'd prefer me to have a flu jab first if possible. Not sure I want one but having had Swine Flu badly this time last year perhaps I'm being foolish? Didn't say anything to him as he's being so proactive but just noted this in relation to others on this forum who are being denied this by their surgeries - it's wrong!

My GP said that being on MTX makes flu jabs every year a priority without me even mentioning it at all to him. Also wants me to take one folic acid tablet a week 3 days after the MTX. I think my rheumy said 7.5mgs of MTX - low dose to start with - but might have misheard this - will listen to recording again later.

For now at least I'm very relieved to get some certainty after a rollercoaster of a year. Sounds daft doesn't it? - of course no one in their right mind would want RA but rather that than limbo land - I know what the lemons are at last and I can now try my best to make the lemonade whatever that may be!? So tired might have a sleep as hubby on a training course after double nightshift poor man - and hands and wrists, dog and boys and terror about today all kept me awake for most of last night so i'm hitting the ibuprofen and going to nap before the boys get back from school!

Bye for now and thanks so much to those who wrote messages wishing me luck!

Mat xxx

fayrose

Good news to get a diagnosis finally but not good news also. :roll:

I wish you the best of luck with getting a flu jab and that the meds kick in quickly. It certainly sounds as if you have a very supportive GP and that helps no end.

Best wishes and will be glad to hear how you get on.

barbara12

Hi Mat
Im glad you have a diagnosis, now you know what you are up against you can move on.
I really do wish you well with your treatment, and please let us know how you get on with it.
Sending lots of hugs for you ((((()))) x

lindalegs

Hi Mat,

What wonderful support you have

I'm glad they're all proactive and it sounds as though your rheumy really wants to try the Mtx.

7.5mg is the normal starting dose but your folic acid sounds quite low, I was on a tablet every day except Mtx day.

Keep us posted on what's happening and good luck with the Mtx, I hope it works for you.

Luv,

Mat48

Yes i feel much better for it although hands not yet joining in the celebration in my head this end unfortunately Thanks so much though (((())))) to you all as well. Take care all. Will be back when hands feel a little more human again :!:
Mat x

lindalegs

Mat48 wrote:

Yes i feel much better for it although hands not yet joining in the celebration in my head this end unfortunately Thanks so much though (((())))) to you all as well. Take care all. Will be back when hands feel a little more human again :!:
Mat x

It's probably all that typing

Try an ice pack on them that'll help if they're hurting.

Luv,

Mat48

You are quite right Linda Legs - it's hand abuse that's what it is :shock: I'm going to give them a much needed break now Matx

dreamdaisy

I am so pleased to hear that you now have an inkling of what might be up. I know that meth is scary, and even more so for you given what has gone on before, but the doses for RA are considerably smaller than those for the other, and although hair loss is listed that does not guarantee it will materialise.

The flu jab is an essential - I slipped through the net for the first time in years as my GP practice a) changed their criteria and b) as the meth I take is prescibed by the hospital it is not on their notes so they said they were unaware of it (which was a whole load of bollards but I got it done anyway). As for the FA I think the dosage etc varies from area to area and doc to doc - I only take 5mgs once a week though that may change if my dose is raised.

Now you know what's what, Mat, I hope you are feeling better in yourself about it all. Take care. DD

valval

so glad rhummy was so nice and you are sorted with meds i hope they work for you with no side affects val

stickywicket

Good that you've got a diagnosis, Mat. Try not to fret about the meth. I've been on it for over 10 years - 22.5 at my highest - with no side effects. Folic acid doses do vary enormously. As for flu jabs - I thought those on meth were always offered one. Better for us to stay infection-free.

kellerman

Hi Mat,
I've been thinking about you and hoping that you got some answers.
Well you did...now one step at a time now.
Think positive....you may not get any side effects...loads don't.
I'm really pleased for you hun...now relax and don't worry.
The very best of luck to you...good appointment yes..May

Oh...One more thing....definately have a flu jab.
I was a bit dubious....but because of my job it was important I had one.
I've had them now for years....usually in our casualty dept...and straight back on the ward. No problems.

Star2001

You are bound to be worn out mentally after all the tension about what today might bring Mat. I'm happy you have a diagnosis to work with and I completely understand you feeling relieved. A new road ahead for us both (and for many more) so I wish you lots of luck with the Methotrexate. Will you have the opportunity to be talked through everything before you start it? I am grateful to be seeing the Specialist Nurse before starting the Sulphasalazine but your team seem very in tune with each other. Hope you sleep well.

skezier

hi Mat,

i guess its as Fay said good and bad for you there. a diagnosis often helps but the fact they are going to treat it and thats what is really important.

been on mtx at 25 for a long time now and still got my hair! its gone thinner but its bot bald so don;t go worrying about that one. the folic acid, like Legs, i take every day except mtx day if i remember but Mat i am terrible at remembering.

hope it will really help you an also hope those hands are more comfortable flower. hugs and a cuppa Cris x

magenta

Hi Mat,

I'm sorry I missed your post about your appt.

I'm glad you've got a diagnosis and the drs all seem to be doing their best for you.

Take care and hope the meds start working for you pronto!

love Magenta x

Mat48

Thanks so much all. I have hit the whisky (malt!) big time tonight in anticipation of having to quit it once I'm on the meth. Feeling very wobbly about it all now but it really helped having you all there - I did genuinely feel you all in my pocket willing me to be clear and not let the moment pass me by somehow. You kept me right and I'm very grateful. I will have the flu jab but may have to start the meth first because my GP seems to think it might be a while before the next batch arrives here. I was thinking I'd buy some time before starting it - while waiting for the flu vaccine to arrive - but now I just want to do as rheumy suggested and get on with it quickly so it maybe takes effect in New Year. Fingers and knuckles and wrists are really **** tonight and the rest is starting to stiffen so maybe going to have proper flare now I've got my diagnosis affirmed at last? Night night all. Mat xxxzzz

skezier

hi Mat,

you got to stop fretting... it doesn't do you any good flower...

mtx isn't that big a deal really and it can work really well. some folks get really good results on low doses so hang in there and see how it goes. i so hope it will help you and work wonders cus it can. some get side effects (mat i have had a few) but the gp's can give you things to help with them and if it works for you its worth the extra drugs so hang in there. night night and sleep well. Cris x

Mat48

Hey not worrying unduly Cris I promise! Feeling much better this morning now back on ibuprofen my fingers are a bit less clamped and stiff and feeling more upbeat again. It's more a case of slight shock really because although I hoped for a diagnosis - when he actually said it I felt kind of strange. So used to doubting or ignoring my own symptoms that I half expected him to as well?

Storm force winds here and a son going off on boat this morning for a rock concert tomorrow night dread dread - he's 16 so I can't stop him but it's quite scary out there! take care Mat x

julie47

Hi mat

I am pleased for you that your appointment went well and you now have your diagnosis.
What a good idea to record your appointment, unfortunately my phone isn't that clever

I want to wish you well with the meth I am sure you feel an improvement.
Take care
Juliepf x

kellerman

Morning Mat,
I'm glad your feeling more upbeat this morning.
All meds have side effects....doesn't mean you'll get them.
The meds I take for my OP say I have a chance of getting a DVT.Just a chance...doesn't mean I will.
I don't think about it....just like I didn't think of the poison that was pumped into me with the chemo.
You have to stay positive...you are going to benifit from this and thats the most important thing.
Ok...normal mother...worrying about your son.They have to live there lives,we can't stop them.Take it from me...they get worse.
My youngest daughter is a teacher,27 year old,drives every morning 30 mile trip to work...I never listen to local radio traffic...stupid I know...but again a mum thing.
You take care. You know some-one is always here. Love May

dreamdaisy

Don't panic yet, Mat - meth may not mean the end of the malt. Stay alcohol free for the first three months or so to establish how your liver copes with it (be very conscientious with the blood tests) and if all is well then the odd tipple can be cautiously re-introduced. The thinking on meth and alcohol has altered over the years but admittedly there are a few for whom it becomes a total no-no. To paraphrase Michael Stipe - 'it's the alteration of my life as I know it' and you never know - you may be one of those who can tolerate alcohol as well as the meth (or should that be the other way around? ) DD

prefabkid47

dreamdaisy wrote:

Don't panic yet, Mat - meth may not mean the end of the malt. Stay alcohol free for the first three months or so to establish how your liver copes with it (be very conscientious with the blood tests) and if all is well then the odd tipple can be cautiously re-introduced. The thinking on meth and alcohol has altered over the years but admittedly there are a few for whom it becomes a total no-no. To paraphrase Michael Stipe - 'it's the alteration of my life as I know it' and you never know - you may be one of those who can tolerate alcohol as well as the meth (or should that be the other way around? ) DD

Hi Mat
I agree with what DD has said.Have been on MTX for many years (12.5mg weekly + 5mg folic acid 24hrs later).
I still regularly have a drink whether it be a good single malt or real ale.Have even been known to attend beer festivals.............
Control the RA and don't let it control you best you can!!!
Ron

traluvie

Mat..

Good to hear the recording worked, your right it is easier to listen back to if needed..

At least now you have a diagnosis and you can start treatment accordingly, i hope things ease off for you soon and you will start to feel better..x

ruthross

Hi Mat,
I was thinking about you yesterday and wondering how you got on, but didn't have a chance to log on to check. I'm glad you finally got a diagnosis, even though it isn't great news. At least now it can be treated right away. It sounds like the rheumy was really nice and sympathetic too, so that must have helped. I hope that meth works for you, and that you get some relief soon.
XR

lindalegs

Hi Mat,

When I took Mtx at first, my Rheumy said don't have alcohol one day before or two days after taking it. Later he said that I could have alcohol when I wished and if a problem showed up in my bloods then we would talk again. I never had a problem but do generally have booze at the weekends and am fairly sensible. You won't have to give it up unless it makes you feel ill.

Mat48

Oh well that's cheering Linda thanks!

Trying to decide when best day of week to take it will be? Some have suggested Friday evening with food because if tired or sick then better at w/e but I like weekends to be social so not sure? On the other hand i dont want to be starting MLit in January feelibg rubbish at lectures etc?

A retired dermatologist friend of my late mum's told me that when she used to prescribe Methotexate for her PA patients she would say "no alcohol" but rheumy consultants would disagree?

I've had my flu jab today (they found one single dose at back of surgery fridge!) so the nurse said wait til next Friday when flu vaccine is in your system. Think i'll run with that because I'm wining and dining this weekend and my arther symptoms are really on the wain today (ibuprofen back on menu? Flare receding? Psychological stuff following diagnosis? It's all going away now just in time or is that just being in denial?!) and hands and wrists so much better so it feels wrong to start when I'm feeling relatively good?
Mat x

tillytop

Evening Mat

Glad you have finally got the diagnosis and you can start to move towards getting it under the best possible control.

Re when to take the mtx. Have you thought about taking it on a Friday to begin with to see how it goes and then changing the day later on if you want to? I know that meth isn't something which can be chopped and changed at will but if you were to stick with Fridays, for example, until you get to the full dose, you could always move to a different day in the future (remembering of course that you have to manage any change of day carefully to make sure you don't take more than you should). Just a thought.

Thinking of you - and enjoy your wining and dining!

Love Tillyxxx