Hi, my husband has RA, still not under control, 13 weeks into Benepali, worse than first diagnosed (see previous post) but also has had an awful cough (coughing day and night) for near on 3 years now. His RA consultant thinks it may be related to his rheumatoid nodules in his lungs. Does anyone else have this and a chronic cough that no one can sort out? He cannot be the only person with nodules in their lungs, and if you have these do you/have you had a chronic cough? Its not related to Covid.
He has been seen by Respiratory who are convinced its Silent Reflux, he's been on 2 lots of Omazeprazole, still on now again 40mg, has taken Lansaprazole with Gavisgon extra 4 times a day (all with no difference to the cough). He has no symptoms of reflux. Almost at wits end now. He's struggling with uncontrolled RA (his consultant says needs to stay on Benepali for another few weeks and will re-assess even though she saw he can hardly walk) and this cough is just not getting any better. He also has an underactive Thyroid and takes 150mg Levothyroxine.
Any advice greatly appreciated. My last post was answered by over 70 lovely people (when I asked about how long Benepali takes to work).
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Rockky
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I don't know about an RA cough sorry I've Cylindrical Bronchectasis but the right antibiotics sorted the cough out a few years go and I have a rescue pack in the cupboard. Look up "huff coughing" that might help and has he had any respiratory checks ? as it may be worthwhile asking about as a continuous cough is very debilitating both for the person coughing and their partner and family. It took about 12/14 weeks for Benapali to work for me and it did cause a lot of UTI's so was stopped. I hope it does work for him and he gets some relief from the coughing too.
Thanks for reply, he is under a Doc at the hospital but they think its Silent Reflux and are treating him for that. I would have thought if it was he would have seen some sort of improvement with the Omazeprazole he was on for about 6 weeks and is on again now for 4 weeks. and the Lansaprazole he was on for at least 4 weeks. Its so frustrating, we can't even go out to eat much as he is coughing so badly. Im hoping again he sees even the tiniest improvement in the next few weeks on Benepali, as of yet - nothing. Im sorry it didn't work for you that well, he has been told he will go on an infusion next, maybe. Are you on some other meds that help you?
Sorry to hear re your hubby’s chronic cough problems. I’ve not got any RA lung nodules (had recent Chest CTs) or Covid related issues, but often biologics lower your immunity and your immunoglobulins (Ig’s) down to a level which isn’t necessarily dangerous as such when it hovers in mild hypogamma but it needs monitoring. My last biologic Rituximab has lowered my Ig’s resulting in a chronic cough/catarrh/wheeze (not asthma .. had loads of tests and did really great on those) which are due to low igG & IgM. Only repeated antibiotics can dampen down the bronchitis. Then it comes back after a month.
It’s quite common for many patients on biologics to find they get repeated episodes of sino-pulmonary infections/bronchitis (which can be infective or non infective) as their immunity is generally lowered due to the immune system being compromised on powerful biological immuno-suppressants. Some people are affected more than others. Some aren’t affected at all! (Just a thought ... Have respiratory looked at immunoglobulin levels to check re hypogammaglobulinemia (low igG, igM IgA are the three main ones they test for and rheumatology can do this for you and add ok to your husband’s usual tests?)
I had Enbrel (original med of Benepali biosimilar) briefly in 2013 for 6 weeks but not long enough on Enbrel to give me a cough .. Enbrel just suddenly stopped working after a magical instant good effect first time.
Worth a mention to your husband’s rheumy though to check bloods to see if it is mild hypogamma. This is normally reversible once a med is stopped/changed but can take time. Many patients don’t need to do anything except keep an eye on the Ig’s results. That’s my own current issue with hypogamma from 8 years of having Rituximab B cell depleting infusions. Presume your hubby has done the usual sputum tests to rule out infections and has he had a CT to see if any RA nodules? I hope he can press them for what he needs. I nearly went bonkers trying to establish what was the cause of my problems. It’s draining and also for you. Take care and Good luck.
Thanks for the reply. He has had this cough for as long as his RA (3 years).Has had 2 sputum tests, both ok. He will be having another CT scan soon to check on the nodules again. Have a great evening.
It’s very debilitating I know. I’ve had the cough/bronchitis for over four years (which as I said is since my Ig’s became low.) I’ve had RA 27 years since 1995 and no cough until 2018. I also consulted a respiratory physio who was very helpful with exercises and advice. I am changing med to Abatacept injections and hope that helps as it’s supposed to “be more gentle on the lungs” my rheumy said. Hope your husband can get some relief soon as I know how difficult it is to be sleep deprived too due to coughing, Someone I did hydro classes with used to enthuse re salt lamps which improved greatly her chronic cough. She had bronchiectasis and said it helped clear her chest, I’ve not tried them as we have two recent UVC boxes for eliminating pathogens/anti allergy in the home so wouldn’t want to add a salt lamp on top of those but I like the idea of them, being natural. Best wishes.
Is he on any medication for high blood pressure. Some of these drugs can cause a chronic cough. Do hope he gets it sorted soon it is so debilitating Plus the RA
Hi Rocky I have been on Benepali for sometime now and like your husband I also have a persistent cough.Sometimes it is there all day yet other times it isn’t. I have had various tests to find what is causing it( Benepali was ruled out as a cause). I noticed that sometimes it does get worse while / after eating and drinking I take 20 mg of omeprazole daily
It was speculated that a nasal drip may be the cause.
( had sinus problems since a child )
I think it is something I just have to live with now and part of the RA journey
hi there, does the Omaz help? He's on 40mg and it has done absolutely nothing! coughing every hour in the day and at least 4 times through the night, knackering for him.
I have ankylosing spondylitis rather than RA, which has affected my lungs causing several issues, due to lack of expansion and weak diaphragm due to not being able to expand chest. One is I have aspirated acid, which I was unaware of as I didn’t get heart burn pains. I had already been on Omeprazole twice a day, and Lansoprazole which didn’t stop it. So I was initially changed to Esomeprazole but it interacted with one of my meds, so was changed to Pantoprazole which seems to be settling it down. I was having a continual cough, initially blamed on my asthma. I also had a post nasal drip from chronic inflammation of the sinuses. I was put on long term Monetasone nasal spray, which made such a difference. Might be worth trying a nasal spray and see if things improve. I appreciate it’s frustrating for both of you 🤗
Silent reflux can cause a chronic cough and because you don't get symptoms like heartburn and indigestion like you do with acid reflux it can be difficult to treat. However it sounds like the respiratory team are still investigating your hubby's nodules and I would emphasise to his doctor that the chronic cough is affecting his quality of life.
We have said this,I have to keep chasing them for an appointment as they don't book ahead, and forget to book one, its so tiring having to keep chasing everyone!
I know what that feels like believe me. My husband was in the same position during the pandemic with his chronic cough. I had to chase everyone, GP, respiratory department until he ended up in A&E. My husband eventually was diagnosed with IPF but in view of your husband having lung nodules and him already having had a CT scan I'm sure it can't be that because it would have shown on the CT scan. So I would guess it's more likely the nodules or/and silent reflux. My husband had silent reflux and hiatus hernia both of which can be treated but he would have to have an endoscopy to determine that. In my husband's case the IPF superceded any other investigations. I hope you get some progress soon.
As your husband’s Consultant is treating him for silent reflux, have you thought about raising the head end of your bed a few inches….if it doesn’t create other problems of course? Also other practical things…leave at least 2 hours between last meal before bedtime, no (or very little) alcohol, cut out all spicy foods, onion, garlic etc., and several short sessions throughout the day of very very gentle movements/pottering/exercise? Something might help and certainly won’t harm. Good luck.
Thanks for the reply, Currently bed has been risen for the last few weeks - no difference. Very rarely drinks now as can make him cough worse. He has just cut out cows milk and is trying coconut milk. Trying to cut out spicy, onion and garlic now. It's a total minefield.
How very frustrating for you both. I think if your consultant remains ‘lukewarm’ with her attitude towards this distressing situation you perhaps should approach your GP to ask for a second opinion …. Even asking might shake things up a little.
Hi . I was diagnosed with intestinal lung disease, I was told it due to RA, I first took Methotrexate, after coming off it Iwas told I had this after X-ray, been on Abatacept, now onBenapali , funny enough just been to doc with bad infection on R lung , tok antibiotics , now having a mega flare up with legs , hands , feet. I know it suppress immune system if you or on biological ,I can’t tell you that I have ever had a pain free day , we trust what they give us because we just wasn’t something to help control the pain . I reall don’t know anymore 🤦♀️
I am coughing all day long and am hoping to find something to ease it. I have HF and also Limb Girdle MD. The MD is nothing to do with the cough as far as I make out but I have respitory checks 6monthly - results are not great but Consultant says cough is not related. For years, usually around autum the cough starts. It feels like it is coming from back of throat. Dry cough and no phelgm. I do not cough during night but as soon as I get out of bed it starts. This year it seems worse. Over years medication was queried but switching from Ramapril made no difference. My throat is getting quite sore some days. Spraying throat with Strepsil honey spray does help a little. Cough has been really bad at times because HF /fluid and have been prescribed extra water tablets. I take Levothyroxine. (Had half thyroid removed many years ago). Have also tried sprays for Post Nasal Drip and am trying yet another at moment. Food soothes my throat. Any ideas as to what I could try or any ideas would be so much appreciated.
It's Heart Failure Rocky. Pippy36 isn't a regular contributor so maybe not aware that for less common abbreviations it's helpful to write in full in the first instance then abbreviate thereafter. It's even more helpful especially if a condition is less commonly related to RD & it's sisters.
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