MTX and pulmonary fibrosis: Hi, this is probably a long... - NRAS

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MTX and pulmonary fibrosis

Maureengibson profile image
Maureengibson

Hi, this is probably a long shot, has anyone been diagnosed with pulmonary fibrosis and was taking MTX. I’ve been on MTX for 4.5yr to manage peripheral symptoms that go with my ankylosing spondylitis. I have no chest expansion due to fusion as a result of the AS, so have always had a degree of shortness of breath. I’m also asthmatic and my peak flows were getting worse, despite no infection or allergy triggers, so my GP organised a CT thoracic with contrast. She called last Friday to say it came back with Pulmonary Fibrosis. You could have knocked me sideways.

Now today my Rheumy phoned and said to stop MTX immediately as it can cause pulmonary fibrosis, although he agrees the inflammatory arthritis can also cause it. I’m nervous as missing one dose causes my hands, feet, knees and shoulders to flare, and he doesn’t want to offer an alternative till I see him in clinic to discuss options. If anyone has had PF diagnosed did they let you continue. I just feel if it was the MTX I would have had symptoms before 4.5yrs. Feeling pretty low tonight, which is bloke he. Doesn’t help that the official charity quotes a life expectancy of 2-5 years and I’m only 55. 😏. I have an urgent respiratory appointment 5th May and rheumy will try and see me soon after that, so rough few weeks ahead

43 Replies

I don't have any specific knowledge about this but I wanted to reach out and give you a online hug.It must be a shock so be kind to yourself. I'd suggest that you try to keep away from Dr. Google as he's dreadfully unreliable. The fiancée of a good friend of mine has PF and I remember her talking about the 2 - 5 years prognosis but that was 7 years ago and he's still OK, although he does have some issues at times. Try to stay optimistic 😘

Thank you, yes I generally avoid dr google except for sites like charities that support the illness and the the British Lung Foundation. I’m generally a very upbeat and positive person, and I know tomorrow I’ll be back on form ready to tackle this. Thanks for the info re your friends fiancée that’s reassuring. I’m hoping they have caught it early and that as long as my rheumy controls the inflammation it will progress very slowly. I had an mri of spine recently as my benepali isn’t working as well. I take 7.5mg pred and was told by a previous consultant that you have to be below 5mg of pred or it masks the inflammation. The scan showed no active inflammation, so he insists I continue. My disease activity, function score and measurement scores are all much worse, as well as chest expansion worsening. Yet because mri doesn’t show active inflammation I can’t swap biologic. Seems bizarre to throw so much money at a drug when everything else suggests it’s not doing it’s job now. Frustrating

So sorry you are going through this and there's a gap of getting this diagnosis and being able to speak to a specialist who can tell you more, anyone would worry. Hope it puts your mind at rest after your consultation.

Just on the aspect of benepali, I've been on this for 12 weeks and its not working for me, I spoke to a nurse from health care at home last week and she said it's commonly the first biologic patients start on because out of the biosimilar drugs its the cheapest 🥺 So if benepali is about £800 a month goodness knows what the others cost! So maybe your hospital are stingy 🤷‍♀️ Although if you're already on biologics its silly not to swap due to money so its probably not a money thing.

Keep on pushing about getting changed x

It does look to me as if it’s a financial thing, they probably have a good deal re Benepali. I spoke with the NASS charity who are at a loss given my readings and reports of pain level increasing that he won’t swap. They say the nice guidelines don’t stipulate that a new mri must be done prior to swapping. I will fight my corner as I refuse to risk this PF worsening purely due to his stubbornness. If I could I’d switch Rheumys unfortunately I’ve been told because of biologics I have to stay local for funding. The only other rheumy I discharged myself from, as he refused to accept I had anything wrong and referred me to neuro. I ended up in Leeds seeing one of NASS medical advisers, who was shocked in the 5yrs I’d been local they couldn’t diagnose AS. By the time she did I had fusion of SI joints, ribs with no chest expansion, and C6/7 disc had slipped and fused in the slipped position. So she urgently referred me back insisting on urgent biologics. You couldn’t make it up.

It makes you wonder doesn't it, glad you got NASS involved (I'm a member too as have AS ) they've been really supportive by the sounds of it. People shouldn't have to fight to be diagnosed should they.

Brilliant totally fight your corner about being swapped, somethings you can't let go of.

gtate1914 profile image
gtate1914 in reply to Boxerlady

I was only on it 3 1/2 months and a few months later was diagnosed with emphysema. Never smoked. Is it connected? I don't know.

Hello Maureen,Read your post just now and feel really sorry for you and all your going through. Please accept my love and good wishes , I hope the doctors give you the very best care and get you better soon.

Goodnight. x. 😊

Thank you for your kind words. I’m still in a state of shock. I feel it’s unlikely to be the MTX after 4.5yrs, but guess I’ll have to wait and see what the specialist says. My daughter is due to get married in Sept after cancelling twice due to Covid. All I can think of is I may not be here to see any grandchildren. Will put my big girl pants on tomorrow and fight this 🤗

Good Morning Thanks for replying. Of course you will get to the wedding , it’s. only 5 months away . I do hope you all have a lovely day.

If you want to chat to me anytime to offload I love helping people.

You could perhaps go and get some more opinions and advice.

I live by the sea at Bexhill , come down and stay and get some fresh air into your lungs !!!

Love from me and all the very best

Thanks. I know I’ll still be around for a the wedding, it’s more the grandchildren that will hopefully follow that I find disheartening.

I visited Bexhill a couple of years ago for a long weekend, and had a lovely time. I’m fortunate that I also live on the South East coast by the sea in Deal, which is a lovely fishing town. The sea air is certainly very therapeutic and hoping to chill in the garden this weekend. Hope you have a lovely weekend. 🤗

So sorry to hear this and sending gentle hugs and hope your rheumy can offer an alternative RA med soon and you can see a respiratory consultant to discuss and explain things more. xx

Wishing you well and hoping your appointments bring good news.

I had a diagnosis of PF in 2015 and like you did a Google search with the same results.I’m still here and doing ok.

I saw my consultant yesterday and it is her view that it is caused by my Rheumatoid arthritis. I have not been prescribed any meds for my PF, but I’m on Biologics for the RA. Now waiting for another Pulmonary function test and new CT scan to see how things have progressed.

I’m still up and about but a lot slower these days.

I hope this helps

take care

Brian

Maureengibson profile image
Maureengibson in reply to Brikel

Thank you so much, this does give me hope. I’m hoping it’s been picked up early and that having the rib fusion has caused me to notice my breathing difficulties sooner. I’m told at the mom by it’s affecting the right lower lobe. I do know when I do any inclines or stairs I struggle to get my breath back. I take it you have no need for oxygen. Do you have to attend an ILD clinic, or are you just followed up by a local respiratory consultant?

It’s so good to hear your doing ok. 🤗

Brikel profile image
Brikel in reply to Maureengibson

Hi Maureen I attend a consultant led ILd clinic .

I usually see the specialist nurse, but saw the consultant on Friday. I’m not on oxygen yet but they are considering ambulatory oxygen as I’m getting out of breath a lot more

Maureengibson profile image
Maureengibson in reply to Brikel

Glad you have access to top experts, and hope the ambulatory oxygen gives you some independence back. At the moment I just get breathless climbing stairs, doing any incline, or if I’m walking on the flat then over the slow 2 mile walk I may stop 3-4 times to catch my breath. Hoping if rheumy treats my AS well it may keep the PF under control. My hubby bought me a breathing trainer, where I can adjust the resistance of inspiration and expiration. This was 3-4 months before diagnosed PF. I use it daily but find if I miss a few days I have to reduce the resistance again, so it seems to be doing something 🤞

Hi Maureen, I was diagnosed with PF 3 years ago. Had rh for 11 years and been on methotrexate inj for same time. Doctors reckon they don't know if it is the methotrexate itself or rh that can cause the fibrosis. I am still on the injections. Feel now I am starting to get a bit more breathless and waiting for ct scan. It is very concerning. My consultant reckons that about 1% of rh patients get PF. Good luck.

Thanks for your reply, sorry you have PF too. It’s good to hear your still able to continue MTX. I was also told about 1% of AS patients get PF. I don’t feel it’s the MTX, I’m convinced it’s the inflammation. My BASDI, BASFI and BASMI scores have all got worse over the last few years. Benepali doesn’t feel like it’s working anymore, I had an MRI whilst taking 7.5mg pred which didn’t show active inflammation. I was diagnosed by one of the medical advisers for Nass, who insisted I had to be below 5mg pred or inflammation would be masked. Unfortunately I have adrenal insufficiency so can’t go lower than 7.5mg. My rheumy refuses to accept that this could be the case despite all my bath scores supporting it’s not as effective. Before I was just disappointed I was being left to struggle, but now with the PF diagnosis I worry the inflammation will continue to wreak havoc on my lungs, if he continues to refuse change. Most people seem to change just on the scores and patients reporting of symptoms, and don’t require an mri to change biologics. Sorry I’m just frustrated with him that he’s prepared for some reason to continue spending around £700 a month on a drug that’s not working very well. Argh... 😏

Hi again Maureen, I am also on benapali inj and have moderate rh. Always been pretty up and down with the rh but not on steroids. I get 6 monthly lung function tests. I have been looked after quite well by the hospital but now feel I have worse lung function. All the health facilities seem to have differing opinions on treatments. I am in scotland. Good luck.

Hi Maureen, Very sorry to hear you have some fibrosis in your lungs and I fully understand your shock at hearing the news, sending you all my best wishes.

There are different kinds of pulmonary fibrosis, the idiopathic one seems to be the one you are quoting for life expectancy (IPF). The fibrosis associated to RA and other autoimmune conditions is due to interstitial lung disease (ILD) and has a much better prognosis. I have had lung fibrosis due to my scleroderma for over 10 years now and still going strong. I was never put on MTX because I already had the lung fibrosis and there is a known risk with the MTX.

Listen to your rheumy and try to not worry too much until you see your respiratory consultant, hopefully very soon. You'll get to babysit those grandchildren, you'll see :)

Maureengibson profile image
Maureengibson in reply to pino99

Thank you so much for this. I must admit I was confused how if they knew the source and managed that, why would it still progress? So what you say makes sense. I was hoping that if we can manage my inflammation then prognosis may be better. Unfortunately despite all my scores indicating it’s worse he refuses to accept that, and won’t consider trying another biologic. I’ve been on benepali 4.5yr, and used to notice an improvement afterwards, now I feel no difference. I’m more determined now with this PF diagnosis to get inflammation controlled. Thanks again for your reassuring words 🤗

Can I just ask are you on any meds or oxygen for your PF?

pino99 profile image
pino99 in reply to Maureengibson

I’ m on mycophenolate to control the inflammation and I get one or two infusions of retuximab per year. So far it seems to be working well and my lung function has been stable

Hi Maureen, your post could almost have been written by me. I have R.A. and asthma as well as other health issues. I have been getting more & more breathless over the last year & even when I sit back to relax in a chair I sometimes find it hard to get my breath. I have been on Mtx for over 7 years now. Back in November last year I developed cellulitis & a leg ulcer which was infected & I was taken into hospital as they thought I might be developing sepsis. When I came out nurses were coming in to dress my leg but in February it still wasn’t healing well so I rang my Rhuemy who said to stop the Mtx until the ulcer had healed. My GP sent me for a chest X-ray in Feb & then for a CT scan which showed up a lot of scarring, shadowing & a lacy pattern & I was told it could be pulmonary fibrosis or a number of other things & that I need to see a respiratory specialist asap. Here I am nearly 3 weeks later & still no sign of an appointment so I will be chasing it up & may even go private if necessary. I have also been frightened by reading about the 2.5 -5 years prognosis & I am not ready for that yet. I had a telephone consultation with my Rhuemy last week & she said not to go back on Mtx but to start on Leflunimide but I wonder if that might cause problems. Like you, this has all been a shock to me. I hope things work out well for both of us. Xx

Sorry to hear you are in a similar position. My GP referred me to respiratory at the same time as ordering the CT. I phoned them end of Feb and they informed me they weren’t seeing routine appointments. I called them back yesterday to say I’d had my CT scan and what they had diagnosed. The young lady was excellent, saying I definitely couldn’t wait on a routine appointment. Within minutes she had me an appointment for a week on Wednesday, so I would definitely urge you to chase it up.

It’s all the uncertainty at the moment, I’m hoping like Pino99 says if they can keep on top of the inflammation, then life expectancy can be longer. Certainly not ready to throw in the towel yet. Good luck, and let me know how you get on 🤗

Thank you for your reply Maureen, my GP is supposed to be ringing me on Monday so I will tell her what is happening. I have to admit that my feeling is that no one really cares about us & that these days we have to fight to get proper treatment on the NHS. For example my GP had told me to ring her at the end of the week if I still didn’t have an appointment but when I rang on Thursday I was told that she was doing admin work & wouldn’t have time to ring me until Monday. On another occasion a doctor told me he would ring me on a certain day & he didn’t. When I rang the surgery on the following day to ask when he was going to ring, I was told that he was on holiday that week. So why on earth had he told me he was going to ring me then? I am older than you & get the feeling that they can’t be bothered with us when we get to a certain age. Please keep in touch & let me know how you get on with everything & I will do the same for you. Xxx

Sorry you are experiencing issues with your surgery. I’m fortunate that a recently qualified gp joined the practice and I was transferred to her list. At first I thought marvellous as my adrenal insufficiency is very rare and the senior gp said I was the first he’d seen through his career, and he’s close to retiring. She has been marvellous though, is open re her lack of knowledge, and will ask me to contact my endo for her input in my care. As well as the PF I’ve also been told my heart has been enlarged, the hospital discovered it in April 2018 when I had a massive stroke due to the undiagnosed adrenal insufficiency, resulting in an adrenal crisis and stroke. They never told me or GP about the enlarged heart. Have had an echo which shows pericarditis and pericardial effusion. The cardiology technician said it’s common in people with inflammatory arthritis. GP wants to refer me to cardiology, at the moment I want to focus on the PF. She has started me on meds to help heart and lungs, so already feeling better than I was when I seen her early January.

It does certainly feel like you have to do chasing yourself, like my respiratory appointment if I left it I could be waiting months till they seen routine. Gp never thought to ring and change to urgent. I was a ward sister for many years so know how the system works, and I’m not scared of challenging Drs or Consultants😂🤪🤗

Hi I was on MTX and was diagnosed with a lung problem, never had that before m not on MTX now , I have started on biological, all these meds have side affects, however when we are in ghat much pain you will take anything. good luck

Those of you who have pulmonary fibrosis, do you get the sensation of a lump in your throat when your active, like going for a walk. I get this and have trouble swallowing my saliva and feels like I can’t take a breath. Feels like a spasm that lasts about 10 secs but can happen several times each minute. Once I’m indoors sitting relaxing it settles. Bizarre

Unfortunately different departments of medicine don't seem to talk to each other to find a joined up way of treating patients with more than one condition. I have diabetes as well as RA. I tried Methotrexate first and swiftly had repeated chest infections and ended up with asthma as a result. I have had more than one biological treatment because fortunately my rheumatologist bases his decision on how the patient feels on a treatment rather than blood results etc. For instance my inflammation level looked great on tocilizumab but I was in terrible pain so I was changed to a different biologic. As for pulmonary fibrosis there is so little treatment and there aren't many drugs to treat it. My husband has Idiopathic Pulmonary Fibrosis which is the most aggressive kind. Yours does appear to be related to your AS and possibly the drugs you have to take. There can be quite a few contributing factors to developing fibrosis. I hope you get some answers and quickly. My husband is now on oxygen 16 hours a day. However there are a couple of drugs designed to help slow down progression. The British Lung Foundation and Action for Pulmonary Fibrosis are the most informative charities I have found for information on lung conditions.

Thanks for your reply. You’d think this day and age it would be so easy to communicate. When I seen my rheumatologist in jan he wasn’t interested in my chest issues, despite Gp feeling he’d be best placed to refer. So my GP had to organise the CT and referral. Wish I had your rheumy mine is useless dismisses every issue you have, and always have to challenge him. I’ve had both feet flare he insisted it wasn’t connected but U/S proved it was. Same with hands and shoulders, wastes so much nhs money testing first and delaying getting steroid injections. He’s only in his early 40s but has the interest of someone about to retire. I have an endocrinologist in London, who is marvellous, likes to be kept informed, and helps my GP with treatment plans. Wish they were all like that. I haven’t met one patient to have a good word to say about my rheumy. I refuse to have my inflammation ignored now I know my lungs are at risk of deteriorating quickly. Unlike RA, AS doesn’t cause raised inflammatory markers in 50% of patients, unfortunately I’m in that 50%, and the amount of fusion indicates during normal markers I’m still fusing. Yes I’m aware that there is only 2 meds available for PF, both which seem

To cost around £2000 a month, hoping I won’t need meds if they manage my inflammation, and provide an alternative for the MTX.

I joined a PF group on FB but finding it difficult, as there are several sad posts daily of family members who’ve succumbed to the disease. Thanks for your time, hope you have a nice weekend 🤗

I know it's a double edged sword looking at the information and sad tragic stories. I think it's high time your rheumatologist started listening to you rather than dismissing your concerns. When you're dealing with different conditions it's inevitable that one is going to impact on the other somewhere along the line. In your case I think as you do that it's imperative that your inflammation levels are controlled. There are so many different biologic treatments out there now and there must be one that's more effective for you. Push for it again when you see him and ask him why he's so reluctant to accommodate you. Life is hard enough battling one condition but when you are dealing with more than one it's terrible. Good luck and let us know how you get on.

Thanks. The ironic thing is I see endocrinology because I have life threatening adrenal insufficiency. I literally produce no cortisol and rely inn my oral steroids. So if my pains are worse than usual I am difficult to rouse have headache, nausea, lightheaded and BP drops and continues till I rectify the shortfall. On bad days that can mean giving myself an intramuscular injection, if the low cortisol is also causing vomiting. If he keeps my inflammation down and pain controlled, then I wake up just groggy and wait for steroids to give me the boost I need to get going. If I’m in more pain heading to bed I try and take a small updose of steroids to prevent going into a crisis through the night, but obviously I’d rather not be having to rely on small extra doses of steroids. AI is rare, but he really doesn’t seem to grasp how pain depletes cortisol levels.

Hopefully he will be more reasonable given the PF diagnosis, if he still refuses I may ask to go back to Leeds for a 2nd opinion from the Nass dr who diagnosed me

God bless you on the road to finding what’s best for you. It’s not an easy disease this RA. Prayers to you!

Just been and had my 2nd vaccine 🤪. Given the poor efficacy levels so far in immunosuppressed I’m going to continue keeping my distance and avoiding pubs etc 💞

My doctor told me on Wednesday that the efficacy levels after the covid vaccination were turning out very high for immunosuppressed people. Jeeez what is a person suppose to believe.

My GP told me some of those on MTX were as low as 8%, and to continue shielding, as I’m on MTX, benepali and steroids both oral and inhaled

Wow! That is horrible. 8%!!!! So we could basically have no immunity and think we do which is really a bad situation.

In fairness both my GP and specialists have reinforced they don’t have enough info yet. My GP says there’s talks of a 3rd booster for Oct/ Nov for immunosuppressed. Even healthy individuals are being advised to still follow hands/face/ space. I also follow a shielders forum where lots have had the antibody test and it has come back negative. Unfortunately it’s only available privately to detect antibodies from the vaccine, the nhs one only detects antibodies from active infection

Hi Maureen,

Sorry to hear that. My understanding is that recent research has shown that there is no connection between MTX and pulmonary fibrosis, it’s the underlying Rheumatic disease that’s the cause. I did find a link to some research but the site wouldn’t let me post it!

Some units have joint clinics with Rheumatologists and respiratory physicians with a special interest in auto immune related lung disease. As always, the important thing is to see a Consultant who has a special interest/ knowledge.

Thanks. Yes I’ve seen one article on EMJreviews.com, not sure if that’s the one your referring to.where it states

“While there is an association with MTX and RA-ILD, it is now known to be coincidental and not causative, with the underlying inflammatory process driving ILD. In short, it is the disease and not the drug that causes RA-ILD.62”

I have been complaining to my rheumy for a year that my biologic isn’t working after 4.5yrs. All my bath scores and pain score is much worse, and literally back to where it was before I started biologics. So I’m certain that’s the issue, unfortunately 50% of AS patients never have raised inflammatory markers, and I seem to be in that group. So he always dismissed any pains, will fo an U/S to prove me wrong, and always shows it is AS. He’ll never learn. However now it’s affecting my lungs I’m not going to accept continue to struggle on a biologic that’s not working, and watch my lungs deteriorate. Why don’t they listen to the patient and go by symptoms. His nurses agree I need to swap. My chest expansion before biologic was 0.8cm, 3 months after starting biologic it was 3.5cm, Dec 2019 2cm, Dec 2020 1.2cm. Surely that’s evidence enough inflammation is present 🙇‍♀️Sorry I’m just so frustrated.

I am not surprised you are frustrated, treat the person not the disease seems very apt here.

I have had pulmonary fibrosis for 5 years as a result of taking MTX by injection. I was in intensive care for a very serious viral infection and had to learn to walk again when I was discharged a month later. I then developed hospital acquired pneumonia and had to return to hospital. After that second discharge I was informed that I had pulmonary fibrosis. I have refused to take any DMARDs ever since a d rely upon low dose steroids to keep me functioning. I referred myself to a pulmonary specialist who I see annually. Don't take any notice of Google. My consultant says that keeping mobile, walking and doing yoga are the best things I can do.

If you have breathlessness, here's a tip for you.... when you bend down breathe out and when you become upright again, you won't be out of breath.

Make the most of each day in a positive way and take good care of yourself

👍😊

Thanks. I’m reading a lot of medical journals which now say MTX May gave a slightly protective effect, and that the literature re MTX and PF is pre 2000. So will see what respiratory specialist says, but I do believe it’s the uncontrolled inflammation and my deteriorating chest expansion due to inflammation that’s the main factor.

Sorry to hear you had such an ordeal, and glad to hear your coping with your walking and yoga. I did do yoga briefly but due to my fused ribs I broke a rib doing a stretch, so avoid yoga now. Unfortunately because of my spine fusing bending over is not an option, even bringing knees to chest, a stretch I’m meant to do is impossible, I quickly feel like I’m suffocating. Such a cruel illness. Thankfully I’m always quite positive, and just take things on the chin. Hope you continue to stay well 🤗

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