RA and COPD-Which meds are safe?

[Ribbon36]

Does anyone have both and know which RA drugs are safe for lungs?? I have not been formally diagnosed but I know I have either RA or PA. I want to have some knowledge about which drugs would cause less worry to infections ect. to exasperate my COPD since I have been hospitalized with issues in the past and am afraid to take a drug that turns off your immune system...yet the inflammation that I am dealing with not only in my extremities but also my lungs is horrible!!!

[nablur]

You really should check with your medical team. Best of luck!

[helixhelix]

There are a huge range of drugs now for RA, including drugs which have little effect on the immune system like hydroxy and through to the newer biologic therapy which does compromise your immune system. The decision about which one would be best for you doesn't just depend on your COPD but also how active and aggressive your RA/PsA turns out to be. So you need to wait until diagnosed and have a thorough discussion with the rheumatologist. It is a common pairing, so not an unusual discussion. Just keep asking questions until you are satisfied that the doctor has really taken eveything into consideration.

[wishbone]

I have an RA related lung condition and another health condition, which makes me prone to a certain type of infection as well as chest related.

Can only speak of my own experiences over 3 years. The only RD med I could take with relative safety during that time which has little effect on the immune system, was hydroxychloroquine, which I recently had to come off due to side effects. Another med that's supposed to have a small footprint on the immune system is sulfasalazine, but I'm allergic to that one.

For the past 6 months I have been taking baricitinib for my RA, which is one of a fairly new class of drugs called JAK Inhibitors. It is a biologic type drug so while it does affect the immune system, it does so in a different way to other immune suppressants...apparently! Because of my susceptibility to infections I'm on a lower dose than the norm and while not life changing by a long chalk, it is helping my RA.

An interesting aspect with baricitinib is that according to my chest consultant there are indications that it might help with COPD. He did add that it's early days yet and while there are signs that it could help people with COPD there's no guarantee that baricitinib won't do the opposite and cause even more issues with my lungs! Unfortunately, and again this is just my experience, none of my doctors could offer a med to treat my RA without being sure of it not having a negative effect on my lungs. Indeed, my chest consultant advised me to come off methotrexate which I was taking at the time I was diagnosed. The only other med that was suggested to me was azathioprine but my rheumatologist and I decided to go with baricitinib.

Obviously I'm not suggesting that you take any of the above meds but thought it best make that clear after reading a daft recent thread. I'm just letting you know what's been happening with me over the past 3 years or so. Also, it might be worth mentioning the above meds to your doctors once you've been diagnosed, which hopefully will turn out to be something less serious than you fear.

Hope I haven't rambled on too much, just thought that explaining my situation in length might be of interest and possibly help a little.

edit... should make it clear that there may well be RA drugs that will not affect the lungs, but none available to me because of the of the raised infection risk they carry

[Ribbon2079 in reply to wishbone]

Thank you so much for such a great reply!!!!!!

[Hidden]

I have RA and Bronchiectasis. I've successfully used Sulphasalazine, Methotrexate and Leflunomide. My rheumy prescribed these knowing I have Bronchiectasis. This is not COPD, but the treament and effects are more or less the same. Apart from the fact that I have had a Pseudomonas colonisation of my lungs for 10 years.

[wishbone in reply to Hidden]

That's interesting, I might be wrong, but have a feeling that my rheumy would have let me carry on with methotrexate until I told her that my chest consultant advised against it. It was not because the methotrexate would make my lung condition worse, but more to do with the possibly of methotrexate causing lung issues of its own which could mask the progress or otherwise of my condition.

Do your lungs need to be monitored with regular lung function tests?

[Ribbon2079]

Wishbone....That is pretty much what I mean. For me, it would be a danger if any drug were to cause me additional lung issues by way of adding to what already exists or causes additional damage in the future as I have read methotrexate can. (or is suspect)

I am sure I should be monitored but have had issues with being able to travel to appointments. I am hoping to be able to figure something out that will make this easier.

I just noticed I have two different sign in names. I must have forgotten and signed up twice at some point with a different name. If I use aol I am one person and Google another.....Geeze!! Both sign me in automatically so I did not notice until now....

[wishbone in reply to Ribbon2079]

Sorry to hear that you need to be on oxygen Ribbon. You can certainly do without the additional issues that certain meds may bring. Have your doctors said what they think is causing the inflammation in your lungs? I'm no doctor..obviously!..but would think that needs to be tackled first.

[Hidden]

Neither my chest consultant nor my rheumy suggested that I stopped MTX. I only stopped that when I was Having chemotherapy (cancer nurses descision, not my rheumy). I used to have lung function tests, and I'm still supposed to. But my chest consultant left it up to me to make an appointment if I thought I needed one. That was 3 years ago, but my lungs have been so wll behaved that I never bother her. However I'm becoming more wheezy, so starting to get a bit anxious.

[wishbone in reply to Hidden]

Not that I need telling, but every time I receive my baricitinib prescription from rheumy via Royal Mail, there is always a typed note enclosed reminding me to stop the drug at the first sign of infection.

I am due to see my chest consultant for the last time in June when I will also have my 5th and final lung function test. No point in anymore as my condition is untreatable. I might not even bother going for this one.

That psuedomonas thing sounds like a bundle of fun?

[Hidden in reply to wishbone]

Yeah, a laugh a minute. First time I got it, 14 days in hospital on IV antibiotics. Followed by 3 months nebulising Colymicin. I was also supposed to take Cipro, but I got Tendonitis, so now can't have that. The pseudo was ultra active until 2016, when I also had Pneumonia as well. Ended up on Oxygen, then got sepsis. The nurse kept checking on me and finding me hanging out of bed, unconscious.you never get rid of it, just have to hope it doesn't wake up too much.

[wishbone in reply to Hidden]

That sounds dreadful! Then getting cancer on top of everything else...talk about bad luck!

A question or two if you don't mind... was it RA and your weakened immune system that allowed you to become infected with psuedo? If so then how come you can get away with taking immune suppressants?

I have a bladder condition which has caused me to have UTI orginated sepsis on two occassions. One was while I was taking Enbrel, which according to the orthopaedic consultant at the time, made it easier for a UTI bug to access my bloodstream. The risk of getting sepsis again is the main reason why I need to be careful with immune suppressants. My lung condition has just added to the problem with meds as apparently, along with methotrexate, there are a few others that can affect the lungs. Plus I can do without the increased risk of a chest infection that taking immune suppressants can bring .

[Hidden in reply to wishbone]

No, Pseudo is a complication of Bronch. Quite a lot of us have it, even those who don't have RA or MTX.

[Ribbon2079]

I am on oxygen 24/7 right now and not sure if I will be able to get off this time which is why I have asked this question and am worried. I appreciate all of the feedback. It is nice to read opinions of those that have actually been on the drug!!! Thank you all!!!

[Webbles]

I do know that if you are unlucky further down the line, RA can cause pulmonary fibroma, no everyone gets it, it’s just the “luck” of the draw, RA effects people in different ways, if you are unlucky enough to get this, they do have drugs to help control it. I don’t know about the drugs, you May have to ask your rheumatologist about this. Blessings. Xx

[wishbone in reply to Webbles]

My chest consultant did mention one or two drugs they have tried with PF, but he seemed very sceptical about them having any real effect. He never said anything about even managing the condition, just that it's untreatable. The only ray of light, if you can call it that, is it's not necessary fatal, which I thought it was according to the gospel called Google. Can only keep my fingers crossed.

[Nellie1965]

Hi Ribbon,sorry to hear about the double whammy you have.My mother-in-law has RA and COPD,she has been on Methotrexate and Sulfasalazine for nearly 11 years now.She gets an occasional infection which is treated by her GP.So far so good.I agree you need to get the right combination for you.Whatever you are put on,you may need to change,Mayby more than once.Goid luck,hope things improve soon.xx

[mickam]

First of all you need to get a formal diagnosis. Once you have been diagnosed you can then discuss medications with your consultant. This forum is not the best place to ask for advice on medications.

[Hobbledehoy]

I can only relate my own experience, not recommend:

I have Trimbow inhaler twice daily for my COPD, with Salbutamol for back-up as needed, plus annual flu jab, 1-off pneumonia jab, and annual review with specialist chest nurse. I also have antibiotics by me for use in the event of a chest infection.

For my RA I am at present successfully maintained on Olumiant/Baricitinib.

I am careful about cross-infection (it's useful to carry hand sanitiser), try to eat well i.e. good balance of protein, carbohydrate, veg & fruit, exercise outdoors + good social life. Also endeavour to establish good relations with health care personnel.

All these things matter! Good 🍀 😊

[Scholar90]

I’m not sure of all of the meds, but I will say that methotrexate severely effected & worsened my asthma. I hadn’t used my rescue inhaler for years and then all of a sudden I was using my rescue inhaler all day everyday, every 4hrs. So, my Rheumatalogist took me off of it ASAP & did an X-ray because just a few months prior my X-ray had shown atelectasis. She said that methotrexate Can cause its own lung issues including pleural effusion & lung nodules. So I would def suggest asking your doctor for suggestions & make your concerns known. I am now recently on Humira and don’t have the same problems.

[Ribbon2079 in reply to Scholar90]

This is one of the meds that most concern me already so I really appreciate hearing of your experience. I am not in a position to experiment because even a small push into a bad zone from a medication could be serious for me at this point. By experiment, I mean having a doctor prescribe a meds with the lets see how you do even though this one could cause a problem mentality.

[wishbone in reply to Scholar90]

My chest consultant said the same about methotrexate causing its own lung issues. He just did not want me taking it full stop! He also said there are more meds that can affect the lungs.

Interesting what your rheumatologist said about methotrexate and lung nodules. I have a single nodule but have never been told the cause, probably because I've never asked. I was on methotrexate for approx 8 years so that may be the reason.

[Ribbon2079]

I quit smoking about 14 months ago. I felt great for the first two months....then my breathing became dramatically worse. Then the RA symptoms started almost at the same time.....I am almost positive that the RA has increased my breathing issues. Perhaps if for no other reason the inflammation that is causes in the body. Sometimes I feel like my throat is closing. I have asthma as well but really have not felt like I have had many issues with it lately until quitting smoking and the RA starting. I am thinking I have had RA in my body for some time but it was at a minor state or in remission....but quitting smoking seemed to bring it out very strongly!!!

[wishbone in reply to Ribbon2079]

Inflammation in the body is never a good thing. My lungs were relatively fine until I foolishly decided to abstain from all immune suppressing meds straight after contracting sepsis as I was at genuine risk of getting it again if I continued taking meds that lowered my immune system. Big mistake!.. My RA went crazy!..and I mean absolutely crazy!! It was during this self imposed abstinance and obviously high levels of inflammation that I developed a nasty persistent cough which lasted many weeks. You can never be 100% sure with these things, but I am 99% sure it was then that the inflammation got into my lungs and did its dirty deed! A chest x-ray a couple of months later discovered the damage and the rest is history as they say.

There's probably a lesson or two to be learnt there.

[Ribbon2079]

LOL....You sound like me. I stayed clear of people as well when the flu was really bad here where I lived this past winter. I see no reason to tempt fate. I appreciate y our telling me about that med as having a med stay in my season long should there be a reaction with breathing or an infection since I do get them often if not feel like I constantly have one. (Another issue I have to talk to doctors about) I need to find a better RA doctor than what I had. One that is well versed on treating people with COPD. The first and only doctor that I saw only once scared me because when I spoke of my breathing issues his face looked blank and he didn't seem to understand my concern or worry as I toted my oxygen tank around with me.

[wishbone in reply to Ribbon2079]

I would have thought that any rheumatologist worth his/her salt should have some familiarity with lung issues. I know that mine does. Good luck finding a new one. No doubt you'll have a few things to ask your docs after this thread has ended.

[Hobbledehoy]

P. S. I'm a bit confused as to who I'm addressing - the Ribbon who started this thread...

Re- smoking: when I gave up my chest was worse before it got better; also, I could sing when I was smoking, but no voice now is not all due to age!

Sweetheart, a lot of your worry is hypothetical until you are diagnosed, which will show up in blood tests. You MUST primarily get yourself treated by a good GP with whom you can establish mutual trust & respect. He should be able to guide you constructively. The same goes for your Rheumatology consultant. It is vital to recognise that these chronic illnesses require a team effort: the doctors, the medications, and you yourself.

Let us know how you go on. Just be warned though, that, if you have RA, its' treatment can involve trial & error. But you will get there! x

[wishbone in reply to Hobbledehoy]

I tend to get a bit carried away in some of my posts so have deleted my reply to you so there will be no confusion to who you are addressing. Sorry about that.

[Hobbledehoy]

I am more confused than ever! My replies have been to Ribbon, originally Ribbon 36. But happy to hear from anyone! Best wishes to all.

[wishbone in reply to Hobbledehoy]

As am I! I presumed, perhaps wrongly by the seem, that it was my deleted reply that confused you. If not perhaps you can explain what did confuse you to avoid any more err...confusion?

[Ribbon2079]

Hi Hobbledehoy. I am sorry for confusing you. I did write about the two names earlier in the posting so that no one would be confused but can see you missed it....so here it is again....I just noticed I have two different sign in names. I must have forgotten and signed up twice at some point with a different name. If I use aol I am one person and Google another.....Geeze!! Both sign me in automatically so I did not notice until now....Hope this clears up the confusion for you. Wish I had not been confused when I signed up twice!!!!!

I work online so when I see a new post sometimes I am on aol and other times google and I jump over to the forum so I wind up being automatically signed in under one of the two names depending which browser I am using. Maybe I should delete one but I don't want to lose any of my postings.

[wishbone in reply to Ribbon2079]

That's unravelled that small ball of confusion then.

[Ribbon2079]

LOL Wishbone!!!!!

[wishbone in reply to Ribbon2079]

I should have realised as you did mention using two names in one of your earlier replies. Hobbledehoy also mentioned it, so my fault for not noticing....brain fog strikes again!

[Ribbon2079]

No, not your fault. Nobodies fault but mine for having two names. It confuses me!!!! I will have to delete one eventually so I don't do this again.

[wishbone in reply to Ribbon2079]

If you say so! LOL

[Hobbledehoy in reply to Ribbon2079]

Och well... You get one deleted & then it'll be straight. I hope my 2 messages were helpful to some degree. Best wishes x