I am 39 and have had Psoriatic Arthritis for 13 years. I have been on every drug but they only last for a certain length of time. The arthritis started in my right hip 4 weeks after I gave birth to my first daughter, when I fell pregnant 3 years later and was crippled with both hips and my hands, since then it has gradually spread to every joint in my body!I have been on methotrexate for about 5 years, I was still getting the odd flare up but overall I was good until about a year ago so they put me on Anti-TNF injections as well as methotrexate, the first one didn't make any difference at all, so 3 months ago they put me on a second one (Humira)- I inject myself once a fortnight. I've been in the best shape I've been in for years - my psoriasis has completely gone, my joints have been great, but all of a sudden I started having really bad breathing problems.
We were on holiday and I couldn't walk 20 metres without being completely out of breath. I went to see my GP who put me on anti-biotics and an inhaler which helped a little - he also sent me for an x-ray. That was nearly 5 weeks ago. This week I got a letter saying I needed to make an appointment to discuss my results! My GP told me that I had scarring on my lungs, he let me read the x-ray report which said that there was scarring on both lungs and it named it Intersatitial Pulmonary Fibrosis!He didn't go into it very much just said that I had to see a lung specialist very quickly and said that my Rheumatologist need to make a very quick decision on my medication!I called my anti-tnf nurse - I just presumed that it was that that was causing it, I mean I've been on methotexate for years and had only had 3 humira injections when the breathing problems started.
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But no - the nurse told me to stop the methotrexate immediately as that is what is causing it!I am in so much shock - if you read up on this the prognosis is really not good with some Pulmonary Fibrosis the patient dies within 3 years of diagnosis! I have read so many websites that I wish I had not - put like this, I have planned my funeral and cried on and off for the last 3 days.I am seeing my Rheumatologist on Tuesday so hopefully he will be able to give me more info and the Lung Specialist on the 3/10/08.Has anyone else been diagnosed with this or know someone that has it? Does anyone have any positive info for me? Please xx2 likes, 9 replies.
I have been treated for last year on Sulphasalazine tabs but I also got a diagnosis for COPD in the lungs. I think there is a connection with the illness and it attacking the lungs from what I have read and indeed other organs causing inflammation in various organs including the Heart / Aorta. I often used to find if I caught a cold and it went to my chest that it would run on much longer than ordinary folks colds. Also I have stopped using b:TALCUM POWDER /b:after reading concerns about it on the internet where it is suggested to cause problems similar to asbestos!!!!! It is also thought to cause in the ovaries of women.
I used Talc since late 1970s till recent and based on what I read I will never use it again! However the reports I read on PA suggest it does attack the lungs in some people causing inflammation and damage. Hope you are not too bad. I had something very similar occur to me, but it didn't take 5 years to come down with it. I was started on Methotrexate (MTX) in Aug of 2010 and slowly titrated to 25mg once per week. The last week of December 2010, I went to my GP on 29 December, because I was experiencing a burning sensation in my lungs along with breathlessness.
My GP took x-rays and put me on a strong antibiotic because the x-rays showed nothing wrong. I spoke to my rheumatologist later the same day as well who advised me to watch myself very closely as things could change rapidly. 2011, I felt like a load of bricks had hit me. So, my roommate rushed me to hospital and when they took my O2 sats they were 57% and should be in the 90% range and when the x-rays came back I had double pneumonitis with 2/3 of one lung being affected and 1/2 of the other lung. By day 4 in hospital I went into resipiratory failure and then respiratory arrest which led me to being intubated and put on high dose. My final diagnosis was MTX interstitial pneumonitis.
It took about 13 months for me to totally recover. I was lucky that there was very little scarring or damage to my lungs.
In fact the docs in hospital expected me to lose 50% of my lung function and as of February of this year my pulmonolgist released me and advised my lungs were functioning within normal parameters. However, I still occasionally loose my breath quite easily. Therefore, I am sorry to hear your troubles and hope that you can regain a good portion of your lung capacity. Its no fun not being able to breathe.
Didn't realise that anyone had replied to this thread!I am doing really well, thank you.Thankfully the caused very little scarring on my lungs, and coming off the methotrexate and leading a healthy lifestyle, is not causing me any problems.I was discharge from the lung specialist in January. He doesn't for see any lasting effects.except I now have.I can handle that! I was in such a bad state when I was first diagnosed, the thought of not watching my children grow up was terrifying!I have since had Hip Resurfacing done on my right hip.metal on metal, which is causing me a few problems.it has been on the news recently with regards the dangers of metal toxicity.which I have.so they are looking at replacing the hip completely. I am going in for a complete on my left hip in 3 weeks and can't wait! I expect to be running the marathon in a years time lol.Life is good, PA is managed with Anti-TNF injections (Humira), I am watching my gorgeous girls grow into beautiful young ladies.the eldest took her first driving lesson last week, was fab to see.
We have just come back from a fantastic 3 week holiday to Australia.Onwards and upwards as they sayI hope you are all doing well and your drugs are under control. Hi AmandabooSorry to hear you and your dad both have lupus.
I have, the treatment for which is very similar to rheumatoid.I am doing quite well thank you. After more tests, scans etc it was found that I had the tiniest scarring and they are shocked that the radiologist could see it.I was taken off methotrexate and after a couple of months was feeling much better and could breathe normally.All I can say to you is to make sure that you take your folic acid, it is so important and keep going for your regular.I hope methotrexate helps you as much as it did me, it renewed my life and gave me good times with my children. I am now on anti-tnf treatment.Take care of yourself x.
Hi Lisa,You have my sympathy. I am also a victim of methotrexate as are 8 out of 10 who use it. I am unfortunate in that I ended up with fibrosis within 3 months of going on it. My specialist at the time convinced me that I had Rheumatoid arthritis and insisted that I go on methotrexate.I dont have rheumatoid arthritis but thanks to modern money making meds I am in the late stages of fibrosis.I have tried many paths in my serch for a cure or something to delay the enevatable but so far to no avail. I am trying out something at the moment but it will take weeks to see results ( if any ) fingers crossed.The only advise I can offer is stay posative and keep going and tell as many people as you can about your situation then some where along the line some one will challange the drug companys about this Highly Dangerous drug and force the Dr's to tell patients the facts about this and other drugs.