Newly diagnosed and new to this site

[PBaumgart]

I have been recently diagnosed with interstitial lung disease caused by rheumatoid arthritis and I am having difficulty finding information, I am 65 years old and wonder about effective medication and progression of the disease. Any information would be appreciated.

[helixhelix]

I can't help you myself as I know little about it. However, have you looked for a local support group? The British Lung Foundation provide reliable info and support

Here's link

blf.org.uk/support-for-you/...

[Lesley_ann]

Morning PBaumgart,

Welcome to the forum, you will find a lot of support here from people if not in the same boat in a very simlar one, I have found it invaluable. If you ask for help and advice there is always someone who knows or can point you in the right direction.

I'm glad I've been up and awake because I've opened your post and hopefully I can be of help and support.

I like you was diagnosed with pulmonary fibrosis in September 2015, so I'm 18 months down the line. I was diagnosed with RA 15 year's ago, so yes mine is also caused by rheumatoid arthritis. I know they have said that you have ILD and I wonder if you have a lung consultant yet, I ask because the interstitial usually stands for unknown reason for your lung disease but we do know why we have it, the RA.

Unfortunately there is still a lot unknown about this disease even from the lung consultants mine recently responded to an e-mail from my gp regarding the use of steroids for me his first paragraph reads..... "unfortunately your guess is as good as mine" . You will have to be patient with your gps ( forgive the pun) as they in particular seem in the dark about it.

I was told not to google PF, I don't know why people say that because it's usually the first thing you do, I definitely like to know what I'm dealing with, anyway it doesn't make for great reading but do remember we are all individuals when it comes to illnesses so all respond or progress differently.

This is the information I have been given up to now from my consultant (we are in Leicestershire) and how PF is affecting me. I was diagnosed after having a CT scan and lung function tests, my scan showed numerous rheumatoid nodules in my lungs both upper and lower lobes resulting in scaring , it is the scaring that gives us the symptoms that results in the diagnosis. Most people have lung disease quite a while before being diagnosed. I know some people can have PF and the progression is quite slow, mine is some where in the middle, my lung function as deteriorated quite a bit over the last 6 month's so I now have 3 monthly appointments and I'm actually seeing him on Tuesday. My progression has probably accelerated because I've had regular chest infections since last May and each one can affect the condition of the lung which is why it's really important to get antibiotics as soon as possible, though I no longer have steroids as apparently they don't help RA caused lung disease and also neither do inhalers unless you also have asthma. As for medication at the moment I've been told there isn't any known meds that help PF caused by RA either. Basically if you have any information regarding lung disease meds if it's any thing other than RA related such as COPD, then it doesn't appear to help us. On a good note there is a trial starting in late summer to test new drugs that can help slow down the process but they still don't know if these will work obviously until they have done the trial. I was on the list to have an assessment for this trial but I don't think that I will fulfill the criteria as I'm probably going to start on oxygen soon.

Most people with lung disease go on a Pulmonary rehabilitation course which can help really well but again having RA can give you other problems regarding how well your RA is managed but,it's definitely worth trying(through your gp) .

I hope that I've not gone on to much (I know I have!) But I've tried to explain as much as possible, maybe read it in stages....

A bit about me I'm 58 and live in the Midlands but if you would like to talk properly then I can privately let you have my number if that would help.

I hope you get the professional help you should have and I'm so sorry that you have had to seek help because of this horrid disease

Take care Linda x

[Barb66 in reply to Lesley_ann]

I had to write and say how sorry I am for your situation, that sounds really grim and at such a young age. xxx

[Lesley_ann in reply to Barb66]

Thank you barb, its certainly can be hard going at times but I am mainly positive and I have a wonderful family son's, daughter in law's, my 17 year old daughter and my husband not forgetting my beautiful first grandchild Genevieve . They make everything worthwhile. Linda x x

[Fra22-57 in reply to Lesley_ann]

When in hospital I had CT and was found to have some nodules on lung.Recommended further CT the next 3mths and was just casually told they are same. Do you have to have bad symptoms for them to react.I get breathless doing things like dressing but it's just wavered aside as part of the disease. Sorry to jump in on post but just wondered if you had to be really bad

[helixhelix in reply to Fra22-57]

I also had CT scan last year because I was getting increasingly breathless that found nodules - have yet to book the 3 month follow up but was reassured that these nodules are just nodules, nothing more and not causing further scarring. It turns out that my breathlessness is due to my heart not my lungs, as have a damaged valve. So now investigating that.

Which is not to worry you further but instead to reassure you that there are all sorts of different possibilities so try not to anticipate and just keep pushing away at your GP to investigate.

[Fra22-57 in reply to helixhelix]

Many thanks for your reply. Think doctors don't seem to bother til you are bad thou.I have had the 3 month follow up by reminding them .Sorry your is heart problems. My late Mum had leaking heart valve

[Hidden in reply to Lesley_ann]

Hi, Lesley-ann, I was interested in your reply to the other subscriber as my husband has had a different lung disease, (bronchiectasis,) all his life since babyhood. He developed RA at the ripe old age of 67 and the Consultant Rheumatologist said the lung disease was most likely the cause for the late onset RA. Bronchiectasis caused frequent chest infections like your condition, with accumulating damage following each infection so his Chest Consultant has always prescribed him prophylactic antibiotics, all the time, (currently he takes Azithromycin three tablets on alternate days, every week,) and he never gets any chest infections. I wondered if they could do something similar for you. My husband has made it to 70 years of age and is still walking around, (albeit slowly,) and not on the oxygen. Regards,

[Lesley_ann in reply to Hidden]

Thanks scruffyrabbit,

I do believe that yes 67 is quite late to get RA, but as I said in my earlier post everyone's different aren't they and thank goodness. I do have several more conditions such as fybromyalga, sjogrens disorder and acid reflux. It seems a lot but it all steems from RA. MY consultant is very involved in reasearch,hence the trials.

Apart from this when I was 18, I was diagnosed with kidney failure due to an hereditary kidney disease, I had a kidney removed a year later but it does mean I can't take certain meds and unfortunately that involves long term antibiotics, but I do have an emergency prescription of antibiotics at my local chemist for when I get a chest infection

[Hidden in reply to Lesley_ann]

Hi, Lesley-ann, You haven't been very lucky, one way and another, like me. I got really bad allergies first, (a course of Penicillin for glandular fever nearly killed me when I was 16 with anaphalactic shock, so I don't know what I would do if I needed a lot of antibiotics either.) Then I got the problems with the stomach acid at 18 and have been continuously on medication for that since the early 1970's. Then I got arthritis in my spine and most of my other joints before I was thirty. I've got the fibromyalgia and the Sjogrens syndrome too, and lost a lot of my eye sight with inflammatory eye disease. But I never test positive for RA! The diagnosis from the Rheumatologist was "connective tissue disorder." I don't really know what that means! Never mind, still here at 63! Take care of your chest. My husband has had pneumonia five times, but seems to recover quite well and keep going! I get him a change of antibiotics as soon as I notice his chest is worsening. Regards,

[Lesley_ann in reply to Hidden]

Good morning scruffyrabbit, funny I to always test negative for RA!!

The reason your rheumatologist uses the term connective tissue disease ( which is also now what I officially have ) is when you have 2or more autoimmune diseases, so you do have RA but because you also have sjogrens syndrome and fibromyalgia you are now classed as having connective tissue disease. Most rheumatologist prefer to use this term and also rheumatoid disease instead of arthritis because most people who don't know much about RA think its just like arthritis caused by wear and tear when, in fact as we all know it's a very disabilitating and life long illness. Unfortunately the meds we need can also cause further problems.

I don't usually tell people all my conditions ( there are more minor ones! ) as it sounds almost unbelievable but, all my health problems apart from my kidney lead right back to RA. It's only since I was diagnosed with pulmonary fibrosis that I realised RA can affect any part of your body including muscles, tendons etc, hence connective tissue disease.

Linda xx

[Hidden in reply to Lesley_ann]

Hi, Linda, thanks for that - I have been somewhat confused for years as it was a good Rheumatologist at the Hammersmith Hospital in London who said I had the "connective tissue disorder," in 2000, but I live out in the sticks in Cambridgeshire and they have fobbed me off here with "There is nothing much the matter with you as you do not test positive for rheumatoid arthritis." Only in the last couple of years have they sent me back to a Rheumatologist round here, who found six discs had collapsed in my back and that I had advanced arthritis in my hands and feet, (I had been left with no treatment all those years except mild painkillers!) As well as arthritis in my hands, I have Raynaud's phenomenon, and he gave me morphine for that, but I only take it in cold weather. You'd laugh, my husband has the recent diagnosis of Rheumatoid arthritis and although he isn't badly affected yet, he considers he really has a serious problem and I don't, therefore I can remain his carer and expected to do all work for both of us! It has been nice to talk to you, as we have such similar problems! Regards, Gerri

[Lesley_ann in reply to Hidden]

Well Gerri, raynauds is one of my other conditions!! On the RA site it will tell you 1 in every 20 people with RA are rheumatoid negative but slightly more people that test positive do not.have RA. The older you get and if you smoke can increase your chance of having a RA factor positive but without having the disease. You also get a positive result but may have a different illness. It can be very confusing!

That's why blood tests alone can't give you a diagnosis of RA.

Dont suppose you have carpal tunnel syndrome, thats another I have but again caused by RA.!!

Its lovely to talk to you Gerri, if its ok with you we should keep in touch. Linda xxx

[Simba1992 in reply to Lesley_ann]

Does mtx or other RA meds have an effect on causing nodules in the lungs? As mtx makes you more volnurable to lung infections, that I can imagine does play a part?

[Lesley_ann in reply to Simba1992]

Hi simba, from what I've been told there is no connection between meds and rheumatoid nodules. I've never took mtx as it doesn't mix well with my kidney meds. I take anti TNF Embrol, sulphersalazine, nexium and pain relief along mouth and eye treatments for the sjogrens.

As PF is a rare disease I honestly think its the luck(or unlucky) draw as to if it develops, so I wouldn't worry to much. I have never smoked and I have never had a chest infection until last march 6 months after diagnosis Linda x

[Sophie17]

I too have the same as you and have 6 monthly lung function tests also see a thoracic medicine consultant , I take leflumide for my r a and when I said I didn't want to try any more drugs got told if I didn't take something my lungs would get worse so I take it. You haven't said what you take for your r a. I am 80 and still try and do most things myself, but do get told off by my daughter, I am also my husband s carer he's semi invalid and has ataxia. Hope you find some answers soon. Sophie 17

[Victoria-NRAS Partner Moderator NRAS]

Hi

I think you've also emailed this query to Helpline, so have sent you a response by email, but good to see you're getting some good responses on here as well.

(NRAS Helpline)

Victoria

(NRAS Helpline)

[mary65]

Hi, I am 69 and have had RA for 5 years.I received a letter last week from my rheumatologist. Following tests and a scan she says I now have pulmonary fibrosis due to RA and SJrogens.I have been referred to chest physicians.No choice but to " google" it as not seeing her until June.Trying to be brave about it but feeling scared!I have been told to stop mtx but to take prednisilone until next appt. I am taking maximum dose of Sulfasalazine too.Thankful for forums like this as would not know where else to go for information. Mary 65

[Lesley_ann in reply to mary65]

Hi Mary,

As I said Google because we all do but, we are all different our progressions differ as do symptoms and our prognosis of life, as we are all individuals. I have a friend with RA who developed rheumatoid nodules in her lungs 12 year's ago and it hasn't affected her much at all. No further scaring and she's doing fine,still working.

As I said before in my early post I'm happy to talk if you need to.

Take care Linda xxx

[Hidden]

Welcome to the site. You will find the folks on here incredibly nice and helpful. Sorry though that you needed to join...

[Barbs51]

Hi PBaumgart, I am sorry to hear your diagnosis. I have RA and have inflammatory lung disease diagnosed in November 2016. This condition is also secondary to Sjögren's syndrome. Since December I started on a 6 month course of chemotherapy with intravenous Cyclophosphamide and Methylprednisolone to help slow down the condition. The CT scan showed that I have scarring and some elements of pulmonary fibrosis which was causing my breathlessness. I had my fourth session only yesterday and so far coping well and fingers crossed it does the job 🙂 I am 61 years and have had asthma for years and initially I thought it was my asthma not under control. I take hydroxy and low dose steroid for my RA and Sjogrens since April 2015 and I have an under active thyroid. I am under a Rheumatologist and lung specialist and now Ive been referred to a cardiac specialist, another complication! The British lung foundation is a good site to visit for help. I wish you all the very best. 💐

[Richgirl in reply to Barbs51]

Hello, I was told I have interstitial lung disease COPD. When I asked my lung doctor if that means I have pulmonary fibrosis he said no that I don't have that. So I'm confused at some of the blogs here. Pbaumgart was diagnosed with ILD. But Lesley Ann says she has the same thing but then goes on to say it's Pulmonary Fibrosis. Because my lung specialist said I don't have PF, it must be so. I wish you all well & send you lots of sunshine.🌻

[Lesley_ann in reply to Richgirl]

Hi Richgirl,

Just to try and explain what I've been told by my duel team of consultants. After having symptoms for over 3 year's I was finally sent to a respiratory consultant in September 2015. He assessed me, did some lung function tests and said I had ILD same as Pbaumgart, which he said meant I had a lung disease but that they didn't know what caused it.

Because I have RA he then refered me to a duel clinic where every appointment I see a rheumatologist and lung consultant together. They arranged extensive lung function tests and CT scans, and when I returned they told me that I have numerous rheumatoid nodules in my lungs ranging from 2mm to 6mm ,they have been there for some time as they have caused extensive scaring throughout my lungs plus a build up of fluid. I was then told that I have pulmonary fibrosis, causes can be RA, sarcoidosis,certain drug's and exposure to harmful irritants such as asbestos. However in majority of cases the cause is unknown and then the disease is classed as Idiopathic ( no known cause) lung disease.

That's why I asked if Phaumgart had seen a lung consultant yet to see if they may be doing further tests to find a cause of his ILD.

I'm slightly confused as to how many people are on meds and I haven't been prescribed any other than antibiotics unless its a post code lottery affect or consultants have different ideas, but I do know that my lungs have deteriorated over the last 6 month's even though I try and eat healthy and exercise. I am now seen every 3 month's a week after having tests. In December my nodules had grown up to 10mm in places and my fev score had dropped again ( I don't fully understand the lung tests) so last week I had them all again and go to the clinic on Tuesday where I have been told we will be discussing oxygen therapy.

Sorry for such a long post but hope that makes it a bit clearer. Take care Linda x

[Richgirl in reply to Lesley_ann]

Hello Linda, yes u explained this very well. I've been confused about things for along time, so thank you for taking time out of your day to write that up. I'm sorry that your lungs have gotten worst. I've heard good things about Oxygen Therapy, how it can make u feel so much better. This April I go back to my lung Dr to get another Pulmonary Function Test. The first one I had I failed. Please keep in touch as I will too. Sending you good thoughts of healing. Richgirl🌻

[Lesley_ann in reply to Richgirl]

Good morning Richgirl,

Thank you I would like to keep in touch, RA is such a complicated disease with all the other problems that it brings with it, so it's good to have support and friends on forum's like this because people really do understand how you feel. I will let you know how I get on if I start oxygen and please let me know how you get on in April

Take care Linda x

[khauther]

What medicines were you taking and how long have you had RA?

[Joy_1]

Hi PBaumgart

I have ILD caused by RA. I was diagnosed in 2012. My RA did not start with my joints it started with a persistent cough (which turned out to be ILD) for 2 months, which then stopped completely and then the joints seized up.

I am under Rheumatology and the Chest Clinic. Luckily for me, my Rheumatology consultant started his medical life in the Chest Clinic so was totally clued up on it all.

I am a scientist and have dug deep into the world of ILD and all things lung related - you can really freak yourself out with the info so make sure what you read is related to exactly what you have.

My ILD is very mild (hope it stays that way) and I have had no progression in 5 years. I had a whole round of lung function tests to start with, an x-ray and then for a clearer picture they took a CT scan. My Rheumatologist showed me my scans and explained everything to me as did the consultant at the chest clinic. I was also given a stethoscope so I could listen to my lungs. For me this was a good thing as it helped me understand what was going on.

5 years on and I now go to the Chest clinic once every 6 months, and there has been no change. At these appointments you have a much quicker lung function test - in my case they consist of 3 lots of 'huffing and puffing' into a machine attached to a computer which last around 10mins.

I think it was at the second appt with the Chest Consultant that I asked, okay what can I do to help myself other than pop these pills. She said you need to get aerobic so get in the water and swim, swim, swim. So I did. On day 1 I could only manage 2 lengths of the pool as I was fighting to breathe - I was shocked at how bad I was!! I went to the pool 3 times a week for 14 weeks. Then I went back for a lung function test and the Consultant said she was in shock as she had never seen anyone recover there lung function to that degree and so quickly. She asked me what I did. I told her I was now swimming. Thankfully she said I could now cut back - fab - as 65 lengths 3 times a week becomes VERY boring indeed! I now go to aqua aerobics 3 times a week and work my socks off to get a full aerobic workout and thus my lung function remains stable. Aqua is much more fun and a great social event.

A lady earlier this week on one of the forums was talking about her lungs and she said she could not swim for various reasons. In that case yoga may be for you and/or singing for lung health. I understand these singing for lung health choirs are cropping up around the country.

I have to disagree with some of the comments on here but don't want to get bogged down as I don't want to enter into a 'fisty-cuffs' discussion. Just wanted to tell you my story.

When you read the science .... steroids do help, the RA drugs do help and all I know is that if I did not have these drugs then I would have died by Sept 2016. Instead life for now is certainly good good good. But that is not all down to the drugs. It's also for me about having a healthy life style - no fad diets - just a good ole fashioned balanced diet, lots of aerobic exercise (for me in the pool) and a positive attitude to life.

Wishing you all the best.

Joy

[khauther]

How long have you had RA and what medications were you taking.