Finally started methotrexate (Hi dear friends. )

tjt6768

Hi folks.. hope all are ok.. sorry I haven't been online.



I saw my rheumy a wk ago last wednesday, ended up having to arrange an emergency appointment.. I have really been suffering with the RA (now have a positive rf factor too) especially elbows amd shoulders. The sulphasalazine was not working and I have been wanting them to try me on meth for a long long time..
I have started on 15mg/wk, Wednesday being my day of choice lol.. and the usual folic acid the rest of the week.. so far, touch wood, no ill effects.. However, it is VERY clear that I have no protection in my system as such, the meth can take a few weeks to kick in but the sulpha was only in the system 12hrs I believe... so I am having quite a tough time still...
also, we had some bad news lately. My 94yr old grandma died on 22nd last month.. I know she was old but it was still a shock as she had been doing really well..
I was very close with mi grandma and will miss her dearly.. Mum is still living with us since Dad died so we were bisiting grandma usually a couple of times a week...
the funeral is on Monday. She is having a horse drawn carriage, proper old school.. so I will not be going anywhere near that as I am terrified of horses...
the family are walking behind the carriage from the church tomthe graveside, I will be in the car... I really wish I could walk.... :xmas_cry:

Anyway....
my meds have changed a fair bit since I was last online.. I am on fantanyl patches, 50mcg/hr but as I am struggling I am currently using 75mcg/hr and naproxen..
I am still on cirtilopram anti depressants, I tried to come off them a few months ago but it didn't work out..
I had an appointment with the pain clinic last week. I dont know if anyone remembers but I had radio lesion therapy on my four facet joints, it was a horrid procedure but worked great for just over a yr.. the nerves have all grown back and are causing dredful pain again.. because it was over a yr since the last ones I had to go through the whole system from scratch, getting a referal from the gp, seeing the pain doctor I have been under for yrs as though it was my first appointment. Stupid.....
anyway, he will repeat the procedure as soon as he can..
as for my knees, I am waiting to go back to the orthopaedic surgeon, again I will need to start from scratch...... grrrrrrr.... maddening....


please forgive my lengthy post and micro rant..


:xmas_cheesygrin:

Numptydumpty

It's great to hear from you Tony, been wondering where you'd got to!
I really hope the meth helps you, but yes, it can take a time. Do you think they take you more seriously now you have a positive RF?
Sorry to hear about your Grandma.
As rants go, that was micro, considering all that's happened to you!
Take care,
Numpty


:rudolph:

tjt6768

hello mi dear

yeah, the rheumy's attitude really changed once I had the positive result, which is sad to be honest...
At least now I know he will listen to me... lol

thanks for the support hun..
x

dreamdaisy

Hello again, I just replied to you on CC. I am sorry to hear about your grandma, she reached a good age, mate, and deserves a good send-off. It would be too far for you to walk (regardless of the horse factor) but the main thing is that you will be there. You've had two bereavements as have I - it's not an easy time.

Now, the meds. I am pleased that you have started the meth and I hope it will soon start to improve matters for you. It sounds as though you are coping with it OK so far (and that is a good thing. I hope you can have that procedure done sooner rather than later - and I hope it helps just as much this time around. It does seem daft that we have to go back to square one to get things done but at least it keeps us in the system. Please come back soon, yes? You are missed. DD

:santa:

tjt6768

well mi dearest DD.... I am going to do mi best to get back to mi old self.


xxx

trepolpen

gl with the MTX , so pleased they started you with folic acid six days a week , so many consultants dont like giving it out but helps taking MTX that its well worth it

if you need it get a steriod injection to help you throught till the MTX kicks in

tjt6768

thank you for the reply :xmas_cheesygrin:

I really hope that it helps lol...
sadly I doubt they will give me another jab, I had a double dose injection mid October for my daughters wedding....
I could have got away with sneaking another from my rheumy as he isn't in constant touch with the gp but I was sensible (so very not me haha) and resisted

jillyb1

So good to hear from you , Tony , but sorry to hear your sad news . Never rains but it pours as they say . Hope the meth helps you , I'm unable to take it after awful reaction to it , but it does help many others . Sending positive vibes to you and Janet .
Jillyb

tjt6768

jillyb1 wrote:

So good to hear from you , Tony , but sorry to hear your sad news . Never rains but it pours as they say . Hope the meth helps you , I'm unable to take it after awful reaction to it , but it does help many others . Sending positive vibes to you and Janet .
Jillyb

wayyyyy.... mi lovely jillyb :xmas_cheesygrin: :xmas_cheesygrin:
thanks hun... and it's nice to be back, I'm gonna try and stay back too...

xx

mike26

hi tjt6768
good to see your starting on methotrexate ,hope it works for you
sorry about your loss grandma.
ive missed your dancing man, hope its a nice sunny day for monday.
best wishes mike26..

tjt6768

Thanks mike :xmas_cheesygrin:

Mat48

Hi Tony, good to see the dancing man (plus friends) back on here. I'm sorry about your Gran - it isn't really just about age (unless it's a child of course) it's about what the person has meant to us really and she obviously meant a lot to you.

Glad you are starting Meth and hope it works brilliantly - it did for me in injectable form but unfortunately I am off it now for various reasons and just on Hydroxy. Shame about the steroid jab but hopefully the Meth will work in a month or so - some people get the benefit sooner. My Rf went from quite a low positive to negative but my rheumy didn't seem that interested when I pointed this out. Not good to be taken seriously by blood - some sero neg have RA really aggressively but at least it's worked in your favour now.

Mat :areindeer: x

villier

Tony as I know nothing about your meds, I hope the meth starts to give you some relief soon. I am sorry to hear about your gran it doesn't matter whether you will be walking, or in a car, your presence will be there and that's all that matters. I am sure I speak for the rest we have all missed your Yorkshire banter, oh! and not forgetting the Yorkshire blokey hugs nice to see you bud................tc.................Marie x :noel:

Toots

Hi Tony :noel:
So very sorry to hear about your Grandma. Big hugs x
Keeping my fingers crossed for you that you get on well with the meth, the sooner the better! x

stickywicket

Hello again, young Tony, and welcome back to the creaky fold :noel: I thought you must have found a cure, made your fortune and legged it over to your Caribbean Island. No? Ah well. We all need dreams.

While you've been away we've not been idle. We've all been extremely busy gathering new diagnoses and meds but such is the wonderful world of arthritis :presents1: Never a dull moment.

The sulph was only in your system for 12 hours? Nope, you've got me there. Anyway, I hope the meth does for you what it does for me.

I'm sorry about your Grandma and I hope Monday goes off as well as possible.

DebbieT

Hi,

I'm so sorry for ure loss, you have my deepest sympathies. That you attend her farewell ceremony is the important part not walking behind the carriage so please don't worry!! ((((hugs))))

I was on oral mtx & it worked well, I had no side effects even on 25-30mg a week so I hope ul be the same :areindeer:

Good luck with everything you have coming up.

Xx xX

tjt6768

such a warm welcome back it's a good job I'm a tough northern bloke else I'd have a tear in mi eye lol..

I really appreciate everyone's input.. and sticky, carrabean island?? Ooooh.. if only lol..

YBH's all round :xmas_cheesygrin:

barbara12

Tony I am so sorry I am late seeing this...you have had such a rough time family wise..I know how close you was to your Grandma...bless it is so hard...I do wish you well with the meds...and please try for some me time now....just to let it get going in your system...wishing you well my dear friend...some manly hugs...((((())))xx

ouchpotato

Hi Tony

I too have missed your dancing man so it's lovely to have him back, but even lovelier to have you back!

Hope the meds work wonders for you

x

tjt6768

Thank you ever so much, it is lovely to return to such kind words :xmas_cheesygrin:

I started with a strange rash on my lower right arm about a week ago, and it was extremely itchy, I woke myself up on a night I was scratching that much... then it appeared on my neck on the left side.. I needed to see my rheumy nurse anyway as I wasn't given a book for my blood test results... so i rang and left a msg for her on tuesday morning, she rang back that afternoon and got my in the next day (yesterday)
At first glance ahe said it was an allergic reaction to the meth... my heart sank when she said I would have to stop taking it... I have been waiting to try this for a long time and needed to give it a good go.. anyway, as a precaution she called in the specialist.. he had a good look and as it was asymmetric he didn't think it was the meth.. he wrote me a script for some strong anti histamine tablets.. I have to take these and if it goes away while I a, still on the meth then all is fine and dandy.. if it doesn't then I have to stop the meth for two weeks and see what happens. It is a strange rash as it was only where my arm was tattooed.... I know that in summer months my tattooes can sometimes get a strange rash, nothing bad but that's the sun and heat.. anyway, then it moved to my neck, the nurse looked at my back and said it was across my back too..

soooo..... here's hoping the anti histamine tablets work wonders.. I took one this morning and I am sure it's not itching as much :?

I now have my 'log book' for my blood results... I am still not sure whatit is for lol.. I have such bad , memory problems that I forget what I am told almost instantly.
I know I must take it to any blood tests and appointments etc, but I assume the people I see fill it in, not me??
I know, I am stooopid :roll:

thanks for reading

mike26

hi tony
hope the itching stops soon, or gets less for you ,
its good tony if you can give the methotrexate a chance to start working on you, i no mine was a good while before it started giving me releif
(20mg inject) ive been on it for 1 year this xmas.
yes the bloods book will be filled in each time you have a blood test ,
mine gets filled in every 3 to 5 weeks.
any problems with meds will show up on your blood tests the nurses and doctors keep a eye on us.
good luck mike26.. :santa:

stickywicket

tjt6768 wrote:

I now have my 'log book' for my blood results... I am still not sure whatit is for lol.. I have such bad , memory problems that I forget what I am told almost instantly.
I know I must take it to any blood tests and appointments etc, but I assume the people I see fill it in, not me??

I'm not sure there is a 'one size fits all' thing with the blue books. (I've a vague recollection of someone once writing on here that his/hers was pink for a start :areindeer: ) I hand mine in to my GP with any prescription request for methotrexate. They check the book and give it back to me with the prescription. If I've had a recent blood test they fill in the details while they have it. End of.

You should always have it on you when going into hospital or seeing a doc, dentist or nurse. In fact, I think you should always have on you full stop it but I know I won't so I wear a MedicAlert bracelet instead. It doesn't give all the info in the book but it gives enough, I think.

Mat48

You are quite right SW - I never was given any book and was monitored by my GPs and the practice nurse. They phoned me a couple of times when my liver enzymes were too high but a few more times I discovered my liver function results were raised well above normal and they hadn't bothered to tell me or request more frequent blood tests. This is partly why I wasn't very confident about staying on Methotrexate. I was never given a card or bracelet to say I was taking it either so if I'd been in a car crash the hospital wouldn't have known - although I gave the extra info when I added it to my organ doner card application. Same thing when I was in steroids - no blue card.

So please don't take these monitoring tools for granted - its great that you get information and evidence of the drugs you are on and its also important to keep up to date with it all and with your understanding of what the blood results actually mean. Its what I regard as necessary self- management Mat x

stickywicket

You're not the first on here not to be given a blue book, Mat. I know others have been encouraged to ask for one. As for the bracelet, these aren't provided. I bought it as it seemed an easier option. They're a purely commercial thing ane nothing to do with the NHS.

Mat48

Well I'm relieved to know that I admit SW. I was starting to froth a bit about the whole business again! I made sure I had it on my mobile and stuck my blood tests apts on the inside of my wallet with "methotrexate monitoring" hand written next to them. I just didn't want people to get blase in case they too don't have assiduous doctors or rheumy nurses who are on the ball. Mat

tjt6768

I'll make sure to keep the book on me..

Sticky, just wondered.. I assume you bought the bracelet? If you don't mind me asking.. how much was it and where from etc..
I would like to get both myself and Janet one. Of course Janet just happens to be allergic to base metals :roll: so hers will have to be silver or.... GOLD :shock: lol

I had an app on my old phone that was a similar thing. All meds/allergy/disease info etc.. I must get it on this one actually. .