Newly diagnosed 64 year old with Rheumatoid Arthritis and Interstitial Lung Disease

Hi everyone.

I haven't got a specific question, but rather I am still reeling from what has happened to me. A brief history.

64 year old male, retired, always been overweight (cuddly, not fat!), suffered from mild psoriasis all my life. Generally good health, but mildly Type II Diabetic for last 15 years.

About 10 years ago started getting painful shoulders. The GP at the time diagnosed frozen shoulder and prescribed physiotherapy. Didn't work.

Summer 2016 - started to get bad pains in my knees, ankles, shoulders, elbows etc. My new GP took blood test and diagnosed Arthritis. Prescribed Naproxen, with occasional 10 day courses of 20mg steroids during flare-ups. On waiting list for the consultant in Aberdeen.

November 2016, a week of increased pain and breathing difficulties, resulting in a 5 day stay in A&E with respiratory failure (blue light ambulance job - not nice).

Taking 1g steroids daily in hospital plus loads of other stuff. A&E Consultant said it looked likely that I had suffered a reaction to the Naproxen (never heard of that one before).

Discharged home but now the breathing difficulties were permanent. Blood oxygen frequently below 90%. *Any* form of exertion caused oxygen levels to drop and it takes 15 minutes to recover. Can only walk about 4 meters before breathless. Put on 40mg steroids plus paracetamol and codeine.

February 2017 - chest infection causing another stay in A&E for 4 days. Discharged home on 20mg steroids.

April 2017 - rheumatologist prescribed 200mg sulfasalazine daily. Currently taking paracetamol plus up to 220mg codeine a day for pain. Developed 1cm arthritic nodules on elbows, swollen fingers, painful joints. In a wheelchair most of the day, on oxygen (2 ltrs per min) 24/7. Can only sleep in 4 or 5 hour "bursts", so can't sleep right through the night. Every few days have a coughing fit that can last between 30 and 60 minutes, very distressing. Always breathless.

I weighed 102kgs in November - I now weigh 82kgs - that's a loss of 20kgs in 6 months.

What I can't get over is the fact that this time last year I was fairly normal and mobile. Looking back with the knowledge I have now I can see that this has been coming on for years, but it felt like someone just turned a switch last summer and I went from being mobile to where I am now.

So, that's me. I know I'm in for the long haul, particularly with this lung disease stuff. I'm just hoping that they not only get a grip on the RA, but in turn the correct RA medication will improve my lung condition.

[Eiram50]

Hi Finlaypete

Wow! You've certainly been through it?!

That must have been quite overwhelming, to have gone from mobile and able to where you find yourself now. What can be done, if anything, in terms of the damage done to your lungs? I do hope there is something that will make things easier for you.

In relation to the RA meds, I'd agree in that once you find the meds that are right for you, the difference, sometimes in a short time, can be remarkable.

I wish you all the very best going forward .

Marie

[Hidden in reply to Eiram50]

Hi Marie

not sure about the lung damage. The consultants (the rheumatologist and the lung guy) haven't ventured an opinion as yet as it's early days. I've had 2 appointments with the rheumatologist and my second one with the lung guy is in 3 weeks time. I have a feeling it is going to take a long time......

[Eiram50 in reply to Hidden]

I hope then that when they identify a treatment plan for you that things progress well and you begin to feel more able and in control of things again.

In the meantime, rest and take care.

Marie

[weathervane]

You will get alot of good support and advice on this site . Wishing you all the best for your treatment so you can get things under control and back on your feet again .

[Hidden]

So sorry to hear this, I hope you get the help you need. My husband is 63 and this time last year he was putting a new floor down. Now he has been diagnosed with RA and on 20mg of methotrexate plus steroids. Last 2 days since taking methotrexate he has been really sick and the fatigue is awful but he can't sleep at night because of the pain, also got carpal tunnel in both hands one just been operated on and also his breathing has got worse. I am at my wits end, I want to help but feel helpless.My lovely husband suffering like this is breaking my heart and I am on the verge of tears all the time but I have got to be strong for my Jim. Sorry for the long post.

[Hidden in reply to Hidden]

I feel for you two. I know from my own experience, being there myself, that Jim will *totally* depend on you, for everything. There is no quick fix from what I've read, but when they find the correct medication for Jim I've been told his condition should improve dramatically.

Hang in there, there are lots of good people out there who will give you lots of help and advice.

[Lucy11 in reply to Hidden]

Jimijames,

So sorry. I also feel for you. Has your husband not been offered to try to add another DMARD along with MTX rather then stay on steroids? Not sure how long he has been on prednisone but they do try and taper you off as soon as possible. You probably already know all of this and he just happens to be in a flare at the moment so is on a a short taper to try to get it under control

At any rate, there are lots of people on this forum that are on double or triple DMARD therapy which has helped them tremendously and can thus use less prednisone because they have better control of their RA. Perhaps, he's already gone down that route and it didn't work well for him for whatever reason but if not maybe it's something he may wish to bring up to his doctor.

I wish you the best.

[Hidden in reply to Lucy11]

Hi lucy11,

No they haven't offered him any other dmard, he has been on prednisone with mtx for about 8 months. I was hoping he could come off the steroids. I actually don't know what to ask the Doctor to give him with the mtx.

[Lucy11 in reply to Hidden]

8 months on prednisone without trying to taper him off is just wrong in my opinion but your doctor may have his reasons so it's always best to check and ask if and why he hasn't tried to get him off prednisone and better controlled by possibly adding another DMARD

In addition to Methotrexate the other more common DMARDS added are sulfasalazine and hydroxychloroquine

[Hidden in reply to Lucy11]

Thanks lucy11 I am going to ask the Doctor if we can taper Jim off the steroids and get one of those dmards.

[Lucy11 in reply to Hidden]

Your doctor will know best. I believe some doctors like to use a very low dose (5mg and lower) for longer periods of time as the lower the dose the less likely it will cause problems.

And again, your doctor may have a very valid reason why he has him on those meds but if you feel your husbands RA isn't well controlled it never hurts to ask what else he can do for him

[Hidden in reply to Lucy11]

I will ask lucy11 as I don't know how much longer he can put up with the pain and the fatigue.(

[Wyaatch in reply to Lucy11]

Has anyone noticed the sulpha--- and the hydro--helping any with fatigue? I mean extreme, unable to function fatigue?

[Wyaatch in reply to Wyaatch]

There is an antibiotic called Minocin ( or minocycline) that some RA docs in the US see as an RA dmard. I used it effectively for 15 years or so but got Lyme and my body couldn't handle two such conditions--the group for minocin users is roadback.org.

[chronicstitcher in reply to Lucy11]

Just hope and pray you never become prednisone dependant like some of us are. We have to "live" with the side effects if we want to live. I've tried tapering, and within hours I'm running fever, the lungs are swelling, and its hard to breath. 12 hours past dosage time, and I'm at the Emergency Room in adrenal failure. If you can take prednisone "as needed", you are one of the lucky ones.

[Hidden]

Thank you finlaypete, I'll do anything to make his life better and easier.

[Kai--]

Warm welcome, 'cuddly' Finlaypete. 👋

On the Interstitial Lung Disease (ILD) front, don't know if you're already aware of a lovely lady named orchidcass77 ?

She may be a wonderful contact for you. 👍

Hearts 💓 with you, luv. Hearts with you. 💕 💗 😌

🙏.

_____

Orchidcass77 ( healthunlocked.com/user/orc... ), has a Facebook group on Interstitial Lung Disease (ILD), RA, autoimmunity:

• Facebook: Rheumatoid Arthritis - Interstitial Lung Disease: facebook.com/rheumatoid.lung/

• Google+ : Cassie “MammaCass” Bird: plus.google.com/11282318658...

• YouTube videos: Cassie Bird: m.youtube.com/channel/UCGoG...

_____

To learn more about her, pop over to this post for a video intro:

'Hi guys I wanted to come share my story with you x': healthunlocked.com/ra-warri...

Another strong & lovely, autoimmuner. 💪 😌 👍

Wishing you the very best, Finlaypete, on this 'long-haul leg of the journey'. 🙏 🌺 🍀 🌞

.

[Tara26186]

Hi

Sorry to hear you have been through the mill I hope things start improving regarding Sulfasalazine it's quite a low dose to start you on. Are you a positive or negative RA sufferer? Am on 2g of sulfasalazine a day as well as hydroxychloroquine and am 10 weeks in and starting to feel benefits. When you see consultant again you might want to ask why you on a low dosage etc. I hope gets sorted wishing you best of luck.

[Hidden in reply to Tara26186]

Hi there. Sorry, got the dose wrong! I take 4 x 500mg Sulfasalazine a day, or 2g a day!

[Tara26186 in reply to Hidden]

Ahhhh okay that's good then

[munchybunch in reply to Tara26186]

I'm a newbie here. What's a positive or negative sufferer pls? Thanks

[Tara26186 in reply to munchybunch]

Hi munchybunch it's based on blood results. If your CCP bloods and RF bloods show positive. Can be either seropositive and seronegative

[munchybunch in reply to Tara26186]

Does it make a difference what type u have?

[Tara26186 in reply to munchybunch]

Hi usually seropositive is more aggressive

[Tara26186 in reply to Tara26186]

That's what they say scientifically however in practice not always. For instance am seropositive but I don't seem to be as bad as some of the seronegative

[munchybunch in reply to Tara26186]

That's interesting. I'm positive. Do u know what percentage are positive? It's even weirder for me as I have sky high ccp and rf levels but no symptoms ! Rather like waiting to. E hit by a bus! Did yrs start suddenly or was it gradual? Sorry for all the questions!!

[Tara26186 in reply to munchybunch]

Hi that's absolutely fine. I'm not sure of percentage that are positive tbh. It has been found that some people have positive RF factor and CCP factor but have no symptoms. Unfortunately just means that at some stage likely to start getting the symptoms. Mine started last Aug but wasn't aware. Was so tired all time for no reason and struggled to keep eyes open. Went to doctors as started getting out of control and was usual tablets before bed but made no difference. Around Dec I started getting really painful hands and wrists to the point was struggling to lift a cup. I even went to A&E thinking broken my hand as swollen something chronic. Then my foot swelled up just after xmas again thought had broken and could hardly walk on it. Finally went to docs beg of Jan and they thought tendinitis but did a CCP to rule out. A week later called back in told of results that normal range usually 0-20 mine was 280. Referred me to consultant and put me on naproxen waited 2 months and in that time all went Pete tong. Got it in all my joints inc my jaw etc. Been on sulfa and hydox (still don't know how to spell them lol) for 10 weeks now and touch wood as made such a difference and although still achy etc I can actually do things and I can still move my limbs without being crippled. That's my story in a nutshell lol. Am 31 so was a bit shocked when got diagnosis I thought I was too young to have RA lol Have they put you on meds even though no symptoms?

[munchybunch in reply to Tara26186]

Hi Tara. No not on meds yet. I'm having a scan next week to see if there is any damage yet. Like u my ccp was 224 so pretty high. I just mentioned I was a bit tired to my dr but in fact I think I'm just a typical menopausal woman. I'm so sorry for you being so young! Hope the meds work. Keep in touch!!

[Tara26186 in reply to munchybunch]

Ahhh thank you I've taken it not too badly just think hey ho not a lot I can do so just go with the flow lol the tiredness is how it started with me that was first bit yes absolutely! Let me know how you get on with the scan

[sylvi]

Usually they give you not only sulpha. but a dmard like chloroquinne to attack the RA. I am so sorry you have suffered like this it is very distressing to start with,but with the right nedication you should manage to do more things,but your lung issues might make you less active not the RA. Hugs.xx

[cathie]

I hope your husband can get on top of this soon. I haven't got anything to add to the good advice except to say keep asking doctors if you're not happy with the treatment. I'm in edinburgh so I don't know the team in Aberdeen.

[DelicateInput]

It is astounding the frightening how the body can deteriorate in such a short space of time.

I do think, however, that the delay in seeing a rheumatologist has contributed to this. From the summer of 2016 until April 2017 is, to me, a totally unacceptable wait for treatment. If I were you, I would be complaining.

I wonder if it is psoriatic arthritis rather than RA. It sounds like it, particularly as you have suffered from psoriasis and also started with shoulder pain.

Respiratory symptoms are listed on the Naproxen leaflet as side effects. You need to read the leaflets of whatever you are taking very carefully. In your case, I can see it happened very quickly so you could hardly have done anything.

On balance, I think I would be looking for another rheumatologist. I don't think the way you are being handled is acceptable.

On another point, in my opinion nobody with diabetes (even slight or mild) is in good health and if I were you, I would be trying to bring my sugar levels down.

[Hidden in reply to DelicateInput]

Hi there.

The appointment for the rheumatologist in April 2017 was my SECOND appointment. The first was in December 2016 when he started to reduce my steroid meds. Sorry - should have mentioned the first appointment.

As an aside, I have nothing but praise for both consultants (the RA one and the lung one). The RA one has even rung me at home to see how I was getting on between appointments. They are both based in the Aberdeen Royal Infirmary and are well regarded.

[DelicateInput in reply to Hidden]

From your original post, I thought you were not happy which is why you were posting on here. You say that you have never heard of the reaction to Naproxen before but it appears to be quite common and is listed in the leaflet.

You said you were on the waiting list in August to see a rheumatologist and the next reference is April 2017.

I would suggest that you ask your rheumatologist about psoriatic arthritis. I have a similar issue. I have a diagnosis of RA, which seems a bit wobbly, and I think I have psoriatic arthritis. At the moment, I have severe pain in my big toe nail plus a really flaky rash on my foot. I've previously had skin scales removed from the edge of the nail by the chiropodist which relieved the pain. Four weeks ago I had a bunion op on that toe yet the pain from the op is mild compared with the pain from the toe nail.

Also, my condition came on very suddenly and one of the initial symptoms was a frozen shoulder. It resolved last year, after treatment with Chinese herbal medicine and hydroxychloroquine combined. Despite fears that it was returning (I test it everyday), it is still wonderfully flexible.

As regards the chest problem, I have had respiratory problems for many years and the most recent diagnosis is a viral infection. I know how annoying and debilitating that can be. It affects my breathing and I cannot do the same level of exercise at the gym. It is nothing like as bad as yours though - my oxygen level is 97/98%. It does make one question the diagnosis when these conditions fail to clear up.

Best wishes,

[chronicstitcher]

I know this one is a few months old, just wondering how you are. I have RA-Lung, and yes, it is permanent, no cure, and progressive. For the first 10 years, my RA was so well controlled with Humira and mtx, there were times I thought maybe I wasn't really sick at all. Then....it all changed. In a matter of weeks, I went from "well controlled" to "...life expectancy is 2.5 to 4 years..." (said my pulmonologist). I went from having a good future, to writing final letters. There were many times, my prednisone scrip would expire before I'd use it all, now I am prednisone dependant. I have to take it to live. My RA came for its due, in a big way. I say all that to say this to all the posters, don't ever forget your RA can change on a dime, in a moment, literally overnight. We have to remember, RA is NOT just another form of arthritis, the arthritis is just one symptom of the autoimmune disease. I read a medical study recently where at some university a study had been done with autopsies performed on 200 RA patients. They found that 80% (80%!!!) had some lung involvement, whether diagnosed or not. The sad part is that RA loves the lungs and heart. Heart disease and Lung Disease are the #1 and #2 killer of RA folks. If you have shortness of breath or chest pain, especially if you are on methotrexate, get a chest xray. Don't shrug it off as a "naproxen side effect"! That may NOT be the case. RA-Lung can simmer for years in the back ground before you even begin to notice the symptoms. Anyone with RA should be getting a chest xray at minimum once a year. Its just a good thing to do, like getting your teeth cleaned every year or a yearly physical. What can it hurt? nothing. What can it help? Diagnose RA Lung Disease a lot sooner.