Happy Thanksgiving!!...This may be an odd question ab... - NRAS

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Happy Thanksgiving!!...This may be an odd question about mtx, but I just have to ask it...

20 Replies

I started to feel the mtx working about 3 weeks ago. Today, I am still swollen but I have less pain. My question is, Do I need to increase my dose of mtx to reach complete medical remission? or Will I slowly continue to improve over the next couple of months? Is this the best I will be? I still have the odd pain that comes and goes. Is this normal?

If this is the best I can be, I guess I will learn to live with it. I have spent this last year in pain and I am greatful that I have hardly any pain now. It's Thanksgiving long weekend in Canada and I was able to host the holiday dinner. ...I never thought I would be able to host a holiday dinner again. Boy oh boy did I have fun preparing the feast!! My husband tried to help, but I wouldn't let him. There was no stopping me!!!

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20 Replies
Moomin8 profile image
Moomin8

Hi- great to hear about your mtx news! However, if it were me, it's a decision for the consultant as to how much mtx to take. Hopefully, things wil continue to improve - yay! I know with my swelling, prednisolone (steroid tablets) definitely help with the swelling but not the pain. Ďo you take anti- inflammatories? For some a depo medrone steroid injection helps. Onwards and upwards 😆

in reply to Moomin8

I wish I could tolerate steroids, but when I was on them I started to hear voices. Yes, I had Jesus talking to me, and I am not a religious person!! That was a very strange side effect that I never want to go through again :)

I see my GP tomorrow, and I hope he will increase my mtx.

Cathy777 profile image
Cathy777

Hi there. We all react differently. I got relief at first from MTX but then it started to wear off and the dose was increased. Then the same thing...it wore off again and a higher dose til I am now on maximum dose and it just doesn't work for me. You may be one of the lucky ones who it does work for and I really keep my fingers crossed for you! You sound more chirpy!

in reply to Cathy777

Yes I am more chirpy :) I think I am accepting the new me. I really hope this drug does not just "wear off" . What drugs are you on Cathy???

Cathy777 profile image
Cathy777 in reply to

Well MTX has worked for me but my body just seemed to get immune to it finally. I am on sulphachlorquine as well. I was having to depend more and more on steroids for relief and I knew this was causing untold damage to my bones and body in general. I think when I finally refused to live on steroids my docs decided to put me forward for a biological (very costly) drug. I was accepted and had this drug given in June. It has taken a while to kick in but it seems to have my RA under control. Sadly I am still in some pain in my hands and wrists which could be damaged nerves (too much prednisone?). This is now being investigated and having nerve tests. Its a long haul. But let's hope you suit MTX better like many people do! Just be wary of too many steroids!

in reply to Cathy777

Last summer I was doing OK on sulfa, but I became immune to it, I hope this doesn't happen with the mtx...only time will tell I guess

sylvi profile image
sylvi

Follow your rheumies advice about dosage darling and happy thanksgiving.xxxx

helixhelix profile image
helixhelix

I think the answer is probably "it depends....". For me, I kept on and on at my rheumy asking whether this was as good as it gets. And she, bless her, responded by tweaking drugs & doses to get the best mix for me. As I've said before it took over a year to find the right mix - but then you've been waiting at lot longer so maybe have more patience than me! But what works for me was max doses of hydroxy & sulpha and 17.5mg of MTX (more than that makes me nauseous). But we are all different, so you may need much less. And three weeks is not long so may well improve dramatically over next couple of months.

Anyway, I got to a position where I can go for days/weeks without thinking about RA at all, or needing any anti-inflammatoires or pain killers.

in reply to helixhelix

I think my patience is wearing off Helix. I see my doctor tomorrow and I too have been asking him "is this it?"

1goldie profile image
1goldie in reply to helixhelix

Hi helixhelix, your posts always read 'a rock of sense' I would value your opinion on my diagnosis. It's UCTD at the moment until they can define it more in time. So Hydroxy 400mg per day is starting dose. You mentioned you had been on it as well as other drugs. I would appreciate if you could explain how bad and debilitating a flare-up was for you and how long they usually lasted. Apparently all my symptoms are a cross between RA and SLE. Only the result of two blood tests have shown an autoimmune disease. Flare-up is different for everyone I understand, but its a general term and I am really need to know if my worst scenario of barely being able to go upstairs, agonisingly trying to get undressed, and struggling to pull up bedclothes is an RA flare-up. After a horrible night, I am stiffish but clear of pain and can run down stairs! Hope you can enlighten me more -------thankyou🙆

helixhelix profile image
helixhelix in reply to 1goldie

I'm no expert, so can only talk about my own experience of RA although I know it's common to start off with UCTD as a more general diagnosis as it can take a long time for the disease to show itself fully.

Anyway, for me the early year flares were appalling. My hands and feet have always been my worst bits and basically I couldn't use them at all and the rest of me just hurt. Which rules out most things! Eating, washing, walking, cleaning - all a big NO. Slowly over the years the flares have got less awful, so now it can be painful with several swolllen joints but rarely at the agony level it used to be. Sometimes they last a day, and sometimes a week. Nothing is guaranteed with this disease. But keep on at your rheumy to check that they're doing the best they can for you.

in reply to 1goldie

I agree with you 1goldie, that Helix seems to be a

"rock of good sence" . Thank you Helix!!

popsmith1874 profile image
popsmith1874

Mtx worked for me but it just wasn't enough to control my disease so I've added a Bisomar Benepali which with the mtx has turned my life around xxx

in reply to popsmith1874

How long was it until the Bisomar was added on to your mtx? Long may you live pain & symptom free Popsmith.

popsmith1874 profile image
popsmith1874 in reply to

Hi it was just added 2 months ago , from 2014 I was on mtx 20mgs sulfazalasine and hydroxocloroquine ,the later 2 were dropped when I started Benepali 50mgs

TerrilouiseS profile image
TerrilouiseS

Hi Suzannedale,

I am so very chuffed that you are tasting normal life again (whatever that is).

For me I had to keep increasing MTX as it would work slightly but not 'enough'. I got to 22.5 mg and my body couldn't handle anymore, says the rheumy nurse. It was at that point I was referred for biologics. But I definitely do think a specific dose works for a short time then your body gets used to it, or the drug is not targeting the right cells in the immune system to work efficiently enough.

I really do think you can have a conversation at your next appointment to say is his working 'enough'.

I also went for an ultrasound which showed that whilst the joints in my hands frets and knees weren't ALL swollen they were ALL aggravated and affected by arthritis. The doctor there was very knowledgable and told me that some swelling may never go down.

I can tell you that even though I life a very very near normal life now, I do still haves one swollen joints. I've accepted the, as battle scars which may or may not heal over time

Best of luck with your treatment, may the improvements continue!

Happy thanks giving

xx

in reply to TerrilouiseS

I like that term, it's working, but not "enough" . I might be just trying to rush things though as I'll be taking my 12th dose of mtx this Friday.

TerrilouiseS profile image
TerrilouiseS in reply to

Isn't it nice to have some speed back😜

GranAmie profile image
GranAmie

2 increase doe or not shd be your doc or consultant's call so check with them pleeeease! good luck xx

in reply to GranAmie

I asked my doc yesterday if I could increase the mtx by one little pill. He said he wants to wait for the results of my next blood test....I just have to wait I guess... :)

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