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RA Symptoms getting worse on MTX Options
Mairead-H
#1 Posted : Thursday, June 17, 2010 9:53:19 AM Quote
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I've been taking MTX for six weeks now, Friday will be my 7th dose. I started on 7.5mg for two weeks then moved to 10mg for two weeks,12.5mg for two weeks. My seventh dose this Friday will be 12.5mg as will my eighth dose next week. I'm not taking any other meds other than 30/500 co-codamol (x 8 daily - 4 doses of 2 tablets) and 2 x 250mg Naproxen daily.

Far from noticing any improvements I've deteriorated rapidly and quite seriously since I've started taking it. It seems the hgher the dose the worse the symptoms get. It could be sheer coincidence but now I'm barely able to type and will have to contact my Rheumatology nurse for advice.

Has anyone else experienced a worsening of their condition when taking MTX?
cozzycoz
#2 Posted : Thursday, June 17, 2010 10:00:32 AM Quote
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Hi that don't sound good, Im on mtx 20mg but they gave me sulfazalzine too as it wasn't working on its own, I know that this is something they do alot so maybe they need to give you something else too and also it takes mtx a while to kick in, hope you get some relief soon contact yr rhuemy a.s.a.p

corinne xx
Mairead-H
#3 Posted : Thursday, June 17, 2010 12:17:19 PM Quote
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Contacted the hospital helpline and it's only open Monday to Wednesday for one hour a day!! i have an appt with my gp tonigth to eithr get steroids or stronger analgesics to get me through to my next rheumy appt. not hapy.
AnnieB
#4 Posted : Thursday, June 17, 2010 8:45:18 PM Quote
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So sorry its not working for you, I'm the same as you just taken my seventh dose of MTX yesterday 20mg weekly nothing else apart from paracetamol now and again, but it appears to be working for me, hope your GP was able to help, let us know.

Anne x
Mairead-H
#5 Posted : Thursday, June 17, 2010 10:35:10 PM Quote
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Thanks for asking. total waste of time. My GP is excellent, don't get me wrong, but he's in a difficult position. He knows I have a checkup with the Rh nurse on 29th June and a consultant appt on 12 July. He said if he pumps me full of painkillers the risk of damage to my organs as they get used to MTX is too great for comfort. If he gives me steroids the painful swelling (he was shocked and asked if it was infected but a manual inspection should have had me hitting the ceiling apparently, which it didn't so jhe concurred it wasn't. Even my rhuemy investigated infection when I first presented sch is the redness and swellking of the one finger) then there won't be anything to show the rheumy who would assume everything was ok and not review the medication.

Fair enough. We agreed I would use a topical dicloflenac cream and movelat gel as well as the naproxen and 30/500 co-codemol I'm already on. I'm to call my rheumy's secretary tomrorow and try and get in to see him earlier. If I have any problems I'm to call my GP who will fax him over a letter to basically say pull your damn finger out man.

Although I was a little frustrated I do understand my GP's position and that the last thing he wants to do is mask the severity of the pain, swelling and inflammation. He's never been oen to throw pills at people, preferring a more holistic approach and get to the bottom of illnesses rather than just treat the symptoms. But sometimes it can be annoying when all you want is a bellyful of steroids and painkillers!! I do concur with his treatment though. I just hope the rheumy can find me somethign that actually works.
dorat
#6 Posted : Thursday, June 17, 2010 11:07:20 PM Quote
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Hi Mairead,

Sorry to hear you are suffering so much.
7 weeks is still early days for the mtx, especially on the doses you have been taking so far. It can take at least 12 weeks to start making a difference, even though some people get relief with it after only a few doses, we all react differently.
So don't give up on it yet, it may be that you need to be on the maximum dose before it takes effect.
I do hope you can get an earlier appointment though, and maybe get a depo steroid injection to tide you over until the mtx kicks in.
It's a pity your GP couldn't give you any stronger painkillers, even if just to take at night.
Hope you feel better soon.

Love, Doreen xx
Maria_R
#7 Posted : Friday, June 18, 2010 9:13:16 AM Quote
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Hi Mairead


I started on mtx 4 weks ago (I'm on 10mg) having been on sulfasalazine alone for 2 yrs which was no longer working- back imn March I had such a massive flare I oculdn't get out of bed.Like you- I've been getting worse the last couple of weeks, my hands particularly have been really bad. I' m finding that it's worse after using the computer.I know it can take about 12 weeks to have effect ( but I'm soooo impatient!). I am also on mexloxicam which is a stronger nsaid. I was given it after the bad flare. I tried tramadol which didn't do much and I'm back on paracetamol which eases the pain. It was interesting to read what your gp said about painkillers- I'm trying to take as few as possible .
I wasn't too bad at the beginning of last week, and this week- but by thursday I get worse, and have to take time off work.

Having said all this- I'm not being nosy but have you been going through a stressful time recently? (apart from coping with RA) Stress is a big trigger I lost my dad 2 months ago and although I was fine at first, the grief is now kicking in.About 3 wks ago I was helping mum sort through his things and suddenly it hit me that he wasn't there any more. I've been rough ever since, both emotionally and physically. My rheummy nurse said that berevement can seriously affect RA so I'm assuming that's why I'm not so good .

I'm due to see the nurse 14th July -if things don't improve next week I'll ring- but my helpline is only open weds & fri am and even then you can't speak to anoyne you leave a mesage and they ring you back- it took 2 days wait last time. NHS cuts I guess!

As Doreen said- maybe we need to be on max dose for it to take effect. Difficult decision- give the lower dose a bit longer or not?

So many factors with this diseaseThumbDown

Hope things settle down for you L.ook after yoursef

Maria x
heather1
#8 Posted : Friday, June 18, 2010 3:16:31 PM Quote
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Hi Mairhead, so sorry to hear you're feeling so rough at the moment. Its a horrible disease and can really take hold. I know it takes a while for the meds to kick in but perhaps your rheummy nurse may suggest a "pulse" of steroids to get you over this rough patch whilst at the same time the meds can kick in. I had a really bad flare in March, like yourself, couldnt get out of bed and I had 2 pulses and at the same time, meds increased (now on 25mg mx etc etc) and have to say it did the trick. The main thing to remember is that we have to really rest as much as possible and not push ourselves as we were able to do before. Thats one of the hardes things to come to terms with I found.

Hope you get something sorted soon, take good care.

lots of love
Heatherxx
Damned76
#9 Posted : Saturday, June 19, 2010 3:20:06 PM Quote
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Hi Mairead,

Sorry to hear things are bad. It took the methotrexate aabout 12 weeks to kick in for me. I would strongly recommend you take Doreen's advice and ask for a depo (Depomedrone) injection if your can get in touch with your rheumy team. They have helped me through a couple of really tricky patches and can last for a couple of months. Take care.

Julie xx
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