|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Hi all
I haven't posted for a while as things have been going well and life is hectic. However, I recently developed an intermitant cough. I only take 7.5 mtx (and hydroxy) so didn't really think I need bother about it but it didn't go away so eventually mentioned it to my GP. He sent me for a chest xray which came back as OK. However he still wasn't happy so has referred me to a chest specialist and also wrote to my consultant. My appointment with the specialist isn't until Nov 9th and today I got a letter from my rheumy saying I should stop my mtx until I see the chest bloke. My worry is that that is not for 6 weeks. What will happen if I don't take it for that long? I really can't cope with a flare at the moment. One daughter has a badly broken leg, the other has just had a baby (my first grandchild) and I am enjoying helping her, I look after my 94 year old mum and work 4 days a week.
Mtx has worked really well for me and I am really scared that if I stop it things might all go pear shaped.
The cough is only now and then and I have no idea what might be the problem. I feel fine. Any advice??
Sue
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hi Sue
Chest probs seem to be one of the things often associated with RA and MTX. I have had to have 2 X-rays because of problems, but both have come back clear, and eventually I re-started the MTX. MTX stays in the system for a few weeks, so you should be OK (especially if you are continuing to take the plaquenil). It would be an idea, though, to check this out with someone in your rheummy department, or the NRAS helpline, as they are the experts.
Love Jeanxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
This is a dilemma. You need to avoid serious consequences for your health and yet also need to continue getting on with with your life! Also stopping the drug, as advised, might protect your lungs but could cause a flare and joint damage. I think you need further advice here from a qualified person. It's what we pay our taxes for and if you need to fight hard to get that advice then fight you must. Maybe there is no ideal answer for you but you at least need a decision that you feel is best on balance. Do you have a rheumatology nurse at your hospital? Mine said I could call any weekday afternoon for advice and that is a Godsend just knowing that I can do that. Please let us know the outcome. I have just started on mtx myself so am really interested in these issues.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi Sue
I was in a similar predicament to you just before Christmas last year. I was fine without the mxt for 7 weeks but by the 8th week I had the flare up of all flare ups. I don't want to frighten you but I don't want to give you false information either. You may be different. Everyone is different. The problem is that you have to wait for results after your appointment which was about 2 weeks. Mine turned out to be nothing to do with mxt. I had to have 3 steroid injs on 3 consecutive days because I had 23 joints affected. I was soon out of pain after them and able to move again then by the time they wore off the mxt had kicked in again. I sincerely hope that it isn't as bad as that for you. It shouldn't be because you are on a small dose of mxt and I was on 20mg. Good luck with your appointment.
Sheila x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Thanks for the advice. I will ring my rheumy nurse today - probably won't get a call back until Wednesday. I'm also going to ring the chest clinic and push for an earlier appointment -maybe a last minute cancellation. Fingers crossed (while I stll can)  Sue
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
|
It's interesting reading all the advice, because my daughter, now with a massive chest infection has been told to keep up with the MTX and not stop taking it. She's on her 4th lot of antibiotics, this week a double dose and 2 different ones as well!! Plus steriods (30mg a day). She's actually not at all well; but has still gone up to London for her University Induction week - with a bag full of pills!!! She's the one doing the Masters degree... a definite brain box!!
Are we the only area where we are told not to stop any of the medication when ill? (we are Portsmouth area).
Anne x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
I think each rheumatologist has his/her own ideas on this, Anne, and we just have to trust them. When I had my knees replaced, my ortho surgeon wouldn't operate whilst I was on MTX and my then rheumatologist said it was fine! I just let them sort it out between themselves in the end!
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi Anne
Sorry about your daughter. What bad timing. When I was ill once I asked Consultant if I could carry on with mxt and he said yes unless you are taking antibiotics but I still don't know why mxt and antibiotics don't mix.
Sheila x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
|
Hi,
I would return to the GP, explain what is happening and ask to be seen sooner than the 9th November.
Personally, I would stop the MTX- although the lung problems (if it is that, only speculating) is reversible, I still wouldn't risk it.....
Arm yourself with good pain relief!
Love,
Amanda
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Feeling very happy  I rang the choose and book line again today and have got a cancellation for next Wednesday so that is only 3 weeks without mtx - I am so relieved It just goes to show, we need to push and be proactive. A happy Sue
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
|
Hi Sue Great news that your appointment has been brought forward to next Wednesday. Take care Debs xx 
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Well, I saw the chest doctor. Apparently the cough could be caused by the RA or by the mtx and the only way to find out is with a CT scan - and I also have to have some lung function tests. So no mtx until after the CT scan. Fair enough - except the waiting time for that is 2 months  So that will be nearly 3 months without mtx. When I rather plantively commented that I would have a flare he said then I would need to go back to my GP and get oral steroids and if that didn't work be referred to my rheumy for my medication to be reviewed. It is all very easy for him to say this - he won't be the one in pain!! Even then if I can go back on mtx it will take another 3 months to kick in so that is 6 months altogether. There has to be a better way!! I have rung my rheumy nurse to see if I can increase my hydroxy to help tide me over - but I am really not very happy at the moment. Sue
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Mind you - I did find a small silver lining last night. No mtx means I can have a glass of wine - so I did!!
Sue
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
SueB wrote:Well, I saw the chest doctor. Apparently the cough could be caused by the RA or by the mtx and the only way to find out is with a CT scan - and I also have to have some lung function tests. So no mtx until after the CT scan. Fair enough - except the waiting time for that is 2 months So that will be nearly 3 months without mtx. When I rather plantively commented that I would have a flare he said then I would need to go back to my GP and get oral steroids and if that didn't work be referred to my rheumy for my medication to be reviewed. It is all very easy for him to say this - he won't be the one in pain!! Even then if I can go back on mtx it will take another 3 months to kick in so that is 6 months altogether. There has to be a better way!! I have rung my rheumy nurse to see if I can increase my hydroxy to help tide me over - but I am really not very happy at the moment. Sue Ask the GP to ring and get your name up the list. Ring them often.... how to be a velvet bulldoser
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi Sue
I had to go through the same last winter. I had chest xray, CT scan etc and had to be off mxt for 3 months. After 8 weeks off mxt all hell broke loose. It was an absolute nightmare. I couldn't even get out of bed without my husband literally pushing and pulling me to get up. I thought I was dying. I didn't get any joy from rheumatology at all. They just said I would have to wait. I was taking 20 painkillers a day which didn't touch the pain, and in the end had to go privately to see the same consultant who pumped me with steroids on 3 consequetive days. I was walking properly within 3 days and relatively pain free by the end of the week, which was great, but had bad side effects from all the steroid and had to wait ages for results of scans etc. Like you say, you then have to wait for the mxt to kick in again. I don't want to go through that ever again. In the end, the breathlessness turned out to be nothing to do with RA or mxt. In future I am saying nothing to anyone.
Sheila x
|
|
|
|
|
|
|
