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Posted By : Don_D - 5/21/2016 12:54 PM
Hi all, I have been struggling alot lately and I can no longer take biologics due to infection risks :( My test results are all real high and all that jazz.

One thing that has been really kicking my butt has been shortness of breath. I never have had this issue until about the time I stopped my last biologic and now I can not do anything without running out of breath. I mean anything. Church singing is definitely out but it was never my strong suit anyway even though I always enjoyed it :)

Anyway, I have been doing a little reading and it looks like there is a symptom called Interstitial lung disease and I was wondering if anyone here has had this issue? I thought maybe it was because of pain. I tend to hyperventilate when I am in pain but this is really constant and my wife has commented on it as well.

Hope you all are well and enjoying the weekend. -Don

Posted By : celebrate life - 5/22/2016 11:21 PM
Hi Don,
You are really having a bad time of it lately. I am so sorry! This short of breath issue sounds serious. Please ring up you Dr tomorrow, my friend. It seems someone posted awhile back about lung involvement due to RA. First I'd heard of it. Best to go in and get your O2 level checked. Do you get regular PSA and cholesterol checks? It seems we blame everything on our chronic condition, and forget the regular checkup stuff. Take care and keep us posted. I will keep you in thought and prayer.

Posted By : Chartreux - 5/23/2016 7:38 AM
You may need a pulmonary doctor for better help. Its also called RA Lung Disease...predisone might be prescribed for the time while you get off the biologic...sometimes the medrol dose pack might help. However, you do need to call a doctor.
Hope your doing better soon!
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : Don_D - 5/23/2016 6:58 PM
Thank you so much for the well wishes and prayers. It has been a rough road lately but I do have an appt tomorrow with my Rheumy and I hope to get a referral to get looked at regarding the shortness of breath. Otherwise I will need to wait longer while I get in to see my PCP.

I hate having so many different Doctors. Even with all my charts being available to them there is only one Doctor I see who seems to take the time to read them prior to having an office visit.

I am only taking MTX right now although I do have prednizone in my medicine cabinet I am hesitant to take it because it was such a hard drug to get off of and made me very sick when I took it.

I feel very fortunate that I have had almost 25 productive years in spite of this disease. My father had RA as well and he was in very rough shape at a young age as a result of it. So, in spite of having hard times lately I am grateful that I have had time to be a father and husband in relatively good health and have had many good years working as well. It is simply a new chapter in life and in spite of my health good or bad I will try to make the best of things and see things as a blessing. This is not easy and I have been battling depression lately as it has become pretty clear that continuing to work is not going to be an option as sick as I have been. I just hope that I can find other ways to be a benefit to others even if working is out of the question.

Hope you all are well and thanks for taking the time to respond. This forum has been a real lifeline over the course of all this. It means a lot to me. -Don

Posted By : Chartreux - 5/23/2016 8:35 PM
A pulmonary doctor will probably try you on the medrol dose pack steroid it is a strong dose that decreases to a small dose (its only a 7 day pack) and is usually for asthma, you might also get a nebulizer treatment and a prescribed inhaler which you might be on for awhile.
I don't tolerate the medrol as it cause me to have an asthma flair on the 7th day. Just too high a dose decrease for me.
I've had asthma all my life, but my mom wouldn't listen to the doctors and I never got the needed treatments and ended up with pneumonia more times than anyone would ever want.
ask your doctor tomorrow if a steroid shot would help with all the swelling and pain, a shot might be what could help you out the most right now..just tell your ra doctor that your very swollen, maybe take a picture of the feet . This is what I do and a shot helps when I'm in bad shape, mind you I only get it once a year...but it really helps...many well wishes...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : Alice22 - 5/23/2016 8:56 PM

When I was first diagnosed with RA in 1998, my rheumatologist told me it was a systemic disease that affects other organs such as lungs. And a couple of years ago an eye doctor told me his mother died of a lung complication related to RA. I also have had issues with shortness of breath and even doing housework leaves me short of breath. I would suggest as Chartreux did that it would probably be a good idea to call a pulmonologist.

I feel the way you do - grateful that I've had many years of being productive, although I did have to retire at age 61 because between the RA and ulcerative colitis working got to be too much for me. I'm sure you benefit many others in your life - your children and wife first and foremost, just by being a good guy. Don't underestimate the importance of that! You also help people on this forum, and sound like the type of person that is generally kind and helpful. I just read a book called Rush to Heaven about a woman who was in a terrible accident and suffered excruciating pain for years, and then had a miraculous recovery. It was so inspiring and uplifting! Since you are involved in your church choir I assume you are a man of faith and wonder if maybe a book like this would help you as it did me. I will keep you in my prayers.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

Posted By : Don_D - 5/25/2016 5:08 PM
Hi all, I went to my Appt yesterday and I am going through the approval process for a CT scan to see if things are OK or not with my lungs. I struggled badly just getting from the car to my Doctor and back and I can't seem to do anything without being winded. It takes forever to catch my breath.

I am out on sick leave now and I don't know when I will be able to return to work :(

My Doctor wants me to try Actemra and then Remicade if I do not react well to it but I have had frequent sinus infections so I don't know if that will happen or not especially given my breathing problems. At any rate I have an appointment to see a PM doc as well now also but not for over a month. I am going to see if my Rheumy can try calling them and see of I can get in sooner. I am already on the call list now if someone drops their appointment. Ah, the life we lead it can be so glamorous :)

Thank you for the uplifting book recommendation Alice I will check it out. I can certainly use it. Depression and anxiety are certainly weighing on me now as well.

Hope you all are well. -Don

Posted By : celebrate life - 5/26/2016 11:26 PM
Hi Don,
I am relieved to hear that you're getting the breathing issue checked out. I'm glad also that you are trying to speed it along. Continued prayers and keep us posted.

Posted By : Chartreux - 5/27/2016 8:50 AM
It's good that your getting a ct of the lungs, worried about your lung issues. and for now that takes precedence over the pain issues.
The pain meds usually depress the respiratory system so get an all clear with your lungs before getting on pain meds, also you might want to get in to see a cardiologists as sometime breathing troubles can come from the heart, ask ScreamingEagle in the CP forum on here, he had a heart condition and his pain stemed from that for awhile and he finally got to a cardiologists.
Please, if the lungs are good you'll get checked out by a cardiologists...just to error on the side of caution.
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : Don_D - 5/31/2016 1:27 PM
I have my appointment tomorrow morning for the CT scan. Still really having issues breathing though but I really think that it is pain related. I have been on pain meds for the last 3 years. I never would have been able to stay working without them. My pain levels have increased so much though that they no longer cut it so I breath real heavy but I feel like I can't catch my breath when I do. It's the weirdest sensation. I will definitely go see a Cardio Doc if the CT comes back clear don't worry. My BP has been all over the place as well but I attribute that to the pain levels.

All this stuff is so complicated and then you have to wait so long to get in to see a Doctor for it. It's so nice to have people like you all to talk to about it. It really helps too cause I never considered the heart thing. It's really a great group of people :)

I had to start a FMLA claim at work now cause I just can't function. Even just riding in the car Im a mess and get so dizzy and feel sick from it cause its so uncomfortable. Its crazy how all this stuff just seems to run together.

Hope you all are doing well and have some relief.

Posted By : Alice22 - 5/31/2016 10:07 PM

Good luck at the doctor's tomorrow. You know I was very short of breath when I was taking Lunesta every night (and dizzy), but when I cut back on the Lunesta both symptoms went away. I wonder if the pain meds you're taking have similar side effects as the Lunesta.

Today I went to a cardiologist and he wants me to have an echocardiogram. I looked that up and found that one of the reasons it's given is for shortness of breath. So if/when you see a cardiologist it sounds like that would be the test for you.

Again, good luck; keep us posted.

Posted By : celebrate life - 5/31/2016 11:51 PM
You will be in my thoughts and prayers that this can be identified and treated without incident. I hope you will not have financial hardship by taking FMLA while you get this figured out. It's enough to deal with already!

Posted By : celebrate life - 6/10/2016 12:30 AM
Hoping to hear that the CT scan was good and that your breathing has improved. Continue to send healing thoughts and prayers your way.

Posted By : Don_D - 6/13/2016 7:49 AM
wow, I thought I had updated this I am sorry. My CT scan came back good. No RA related inflammation so the doctor says that it is pain related. She may be right, my blood pressure has been high and I have been very flared up. Can hardly type my fingers are a mess.

I started Actemra and my stomach swelled up badly like a beach ball and I had stomach pain for 3 days afterward. No idea if it is helping, I have been in a perpetual flare and have been stuck in my chair for weeks now :( Work is completely out of the question. I can hardly shower.

I am almost out of sick leave ut I do have disability insurance so I will be filing it shortly I am sure. I hope you all are well. -Don

Posted By : Chartreux - 6/22/2016 4:47 PM
Don, get checked out by a cardiologists as soon as possible to rule out heart problems, you have me worried. ask for an echocardiogram...and if it's not that then get an upper scope done for acid reflux by a good gi doctor...please
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : msOuchie - 6/24/2016 1:24 AM
Hey Don:

Gosh, your breathing problems and others here are bewildering. I've researched and have found nothing that relates to our specifics
considering our testing results. I also experienced breathing problems in the last 5 years, although I had been referred to a Pulmonologist and Cardiologist for testing and my lungs and heart test results are good.

I originally asked for the referral because before I could walk 1-2 miles on a "good RA day", to not being able to walk a mile without stopping 6 times to rest in order to catch my breath which astonished me. I was on another biologic at the time but don't recall at the moment which one. You didn't mention which biologic you were using at the time or else I missed it. I also asked for a referral because I was concerned about RA nodules on my lungs. That was also negative thankfully. You mention pain...interesting.
During my breathlessness walks, I was not in pain.

I also have had continual occasional "gasping for air" episodes for the last several years. I counted 20 in one 8 hour cycle but can go many weeks with not a one. Other days, they can be 1-3 a day and then none for many days. I have found another Friend on the net with Long Term Type 1 Diabetes who experiences the same symptoms. I looked it up and I found Anxiety as a possible cause. He rejected that reason. I have to admit on most occasions that at the times that I have experienced these "gasping for breaths" episodes, that I was not experiencing any Anxiety of any sort at these times.

Needless, to say, we're no farther ahead. As far as the biologics and other meds, we are all "lab rats" or "pioneers in the newer frontiers" after all. I wish they would convey their results to "us" more often.

Hopefully, we'll have these mysteries solved and treated. "Or perhaps, we are just getting older"?? IDK!
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Raynauds - Osteoarthritis - other stuff

Coversyl - Tramadol(tapering off) - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Posted By : Chartreux - 6/24/2016 8:14 AM
Since you are both on biologics, maybe look up the long list of side effects of the biologics on and see if breathing problems are listed.
Could very well be an allergic response to your biologic as well...not everyone gets the typical hives from an allergic response in fact it usually effect if your heart is good and you've had a calicum blockage(CAC) check done then could possibly be an allergic response to the biologic...
but look up the info on
msOuchie did you get the calicum check to look for deposits in the arteries(CAC testing), it's something on the heart forum on here on a thread called widowmaker...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : msOuchie - 7/7/2016 12:47 AM
Hello Chartreux:

Yes, I have some calcification but thankfully no near blockages. I watched the Widowmaker on Netflix.
I found it strange that they only used supposedly "healthy" people as examples of people who have heart attacks due to this.

Biologics can cause breathing difficulties, as you mentioned. The incident that I spoke of, having to stop 6 times while walking, I was not on a Biologic. My Rheumy had taken me off Rituxan and MTX since either or the combination had put me in such a state that it even shocked him. I had the breathing problems a couple of years before that event but I had been on many other Biologics before that and I'm not sure how long each Biologic stays in a person's body. So you may be right.

Since my RA has been out of control for so long, my inflammation rate has been high also. I recently suspended the Xeljanz due to an infected spot on my elbow and one on my ear. I've tapered off the Tramadol which didn't work well anyways. It would be nice if my resistance to meds would disappear.

Sorry, that I was late getting back to you but were were off on vacation, then checking up on Mom's property and then gone to visit with her for while. I'm so glad that she is being looked after properly.
A lot less stress on my mind. Thank you for the info and your thoughts. :)
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Raynauds - Osteoarthritis - other stuff

Coversyl - Tramadol(tapering off) - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/7/2016 12:54:09 AM (GMT-6)

Posted By : Chartreux - 7/7/2016 7:25 AM
Maybe worth getting a pulmonary doctor to further investigate this lung involvement.
When I was on mtx my ra and pulmonary doctor argued over whether I should be on mtx, hate when doctors don't agree on treatments. Mtx is notorious for causing lung problems...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : CA-Lynn - 7/7/2016 11:34 AM
On the other hand.......COPD can present itself later in life. I have it, plus asthma, but have been on Humira successfully for over 5 years.

SOB can be from any number of causes.....even as "benign" as stress and excess weight.

Posted By : msOuchie - 7/8/2016 5:18 AM
Ugh! I hadn't even thought of MTX as being the culprit but I was on it when these breathing problems started. Along with other RA sufferers, I had been on MTX for many years. My Rheumy took me off of it and Rituxan in 2013, I think.

I was at the Pulmonologist last fall and he had mentioned that I had a small amount of scarring. Then again RA and Diabetes can cause some of the same symptoms. He also mentioned that I have a birth defect in my breathing system but it wouldn't cause a breathing problem. Since these new testings I've been found to have several birth defects already.

I also dislike when the Doctors do not agree on treatments. It certainly can put us in a spot between them. Plus it may make us question our treatment decision and leave a possible ongoing doubt in the back of our minds which can be stressful.

My next appt with my Pulmonologist is in October. I hope that he thinks of different tests to do since these other ones didn't find much. Geez, I'm Happy that he didn't find anything serious but I'd like to know what is causing these symptoms. Even ALS has some of the same ones and I just read that a Patient with it, can live 10 or more years. I was unaware of that since I always heard 5 years was the max.

I appreciate your ideas/comments Chartreux.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/8/2016 5:23:02 AM (GMT-6)

Posted By : msOuchie - 7/8/2016 6:35 AM
Welcome to HW CA-Lynn!!

I'm sorry to hear that you have COPD and Asthma. I do hope that your treatment is going well.

I did check out the COPD site today but I do not think that is my problem. Last October, I had the
Spirometry test(didn't like that but I passed it). The Oximetry(98%) and an ex-ray(mainly okay).

Stress and Anxiety for certain can cause many conditions like the "gasping for breathe" that I have maybe and I've had way more than my share of stress this past year. I've had that symptom for about 6 years. I've had a stressful life like most. But the other symptoms, I don't think are stress related.

Weight has never been a problem for me(lack of, "Yes".), except this past December I was put on a higher dose of Pred in order to deal with excess pain, stress, etc for the holidays since my Mom was at our place and other company to look after. I've been noting that the weight has been accumulating even now with the tapering. I'm 138 lbs now. Not happy about that. At least before when I was on MTX and a higher dose of Pred., I didn't gain anything. Not so now, without the MTX. Now I have to take more Insulin. :/

Anyways, thank you for your ideas and again Welcome!!. :)

*I forgot to add that my Asthma is quite mild now in comparison to the 1990's.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/8/2016 6:40:39 AM (GMT-6)

Posted By : celebrate life - 7/8/2016 11:44 PM
I would also like to extend my welcome to HW, CA Lynn. I am a NO. CA. coastal redwoods gal. I was on Humira for five years with fabulous results at first, but like many others, the effectiveness tapered off. I'm on Enbril for five years now and mtx and low dose prednisone. All in all doing well so far.
But I have to wonder about the OP, Don, who hasn't been doing well as of late. Hope you drop a line soon my friend. Thinking about you often.

Posted By : CA-Lynn - 7/11/2016 4:32 PM
Thank you all for your welcomes. It's good to be here. But sorry we have to meet under these circumstances.

Yes, ILD is another possibility.

Then there's something called costochondritis. Here's a link describing it, written by my personal rheumatologist of many years.

I, too, am wondering about Don.

Posted By : Chartreux - 7/15/2016 2:13 AM
Don, hope you'll post an update...worried about you...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : Don_D - 7/19/2016 10:46 PM
Hi Guys, I apologize for my absence and lack of updates. I checked out OK with a pulmonary check up but I still have this breathing issue off and on. Usually it is my high pain days which are pretty frequent. Also, I too have been on MTX for the last 3 years or so at the max dose weekly. I will have to speak with my Rheumy and see if there is something else we should be testing for because of this.

I am still on Actemra as well and still having side effects in my upper GI. I took my shot on Friday and all day Saturday and most of Sunday it was extreme. Almost unbearable. I get about 2 days of noticeable relief after this and then I am flared up again. It's been 2 months now and I'm pretty sure I need to come off of it.

I had a referral to a PM clinic and that was a Godsend. The Doctor was very helpful and was not worried about giving me meds for breakthrough pain. I was very grateful for this and it has been a huge relief. He also gave me some new type of coated ibuprofren that I tried taking but after a couple days of it my stomach was a total mess again. I wish I could handle it, I wouldn't need near the pain meds if I could.

I am still trying to get an upper GI scope but my insurer has been pushing back on it of all things. I don't understand it but I am jumping through their hoops and eventually Im sure it will happen.

At any rate I am now on short term disability and trying my best to accept that and not beat myself up over it. Not easy but I am grateful to have paid into it all these years and have it when I finally need it. I am trying to stay as active as I can even on bad days. I have been dealing with depression as well off and on.

I want to thank you all for your thoughts and prayers. I promise I will not disappear for such a long period without saying hi. It helps me to stay connected with you all and I am grateful for all of you. Welcome aboard to CA-Lynn. This is a great board! :)


Posted By : MarleneF - 7/28/2016 6:57 PM
Rituxan can cause severe breathing problems, something to do with an enzymatic reaction in the lungs. It's been 3 years since I went off for that reason, and I am just starting to be able to breath normally.

Then there is Rheumatoid Lung Disease. A simple X-ray will show RA nodules in the lungs. Not sure how they treat it, I haven't had it yet.

Another thing is methotrexate lung. That is definitely cause by mthx. I never had that, although I was on mthx for 9 years. Instead, I had liver problems and had to go off, although it worked 100% in combo for me on Kineret. Those were the days!
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5

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