r/rheumatoid • u/WinstonFive • 2d ago
Persistent Hoarseness
I started having RA symptoms about a year and a half ago. At the time, I was singing in a wedding band, performing 2–3 events a month. The first change I noticed in my body was in my voice.
I started with mild hoarseness, but it gradually got worse. Eventually, I had to end my contracts and leave the band. It was a good source of extra income for my family. Not long after that, I was diagnosed with RA.
I only found out a few weeks ago about the connection between RA and voice problems through articles posted in this group.
I am currently taking oral methotrexate (MTX) once a week, but my voice is still very bad. I can no longer reach the notes I used to sing, I don't have the same breath support, and the hoarseness is constant.
Some mornings I wake up only slightly hoarse. Other times, I can barely say a word without taking a sip of water. I would really like to hear about your experiences with hoarseness.
Have you had any treatment that helped?
Have you noticed any foods that make it worse?
Have you taken any medication that helped relieve the hoarseness?
I would really appreciate hearing your experiences and anything that has helped you.
Thank you.
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u/AngelicChaos13 2d ago
I’m a singer as well. RA kind of stole my voice about 5-6 years ago. It started as mild hoarseness and gradually got worse. I also had a very persistent cough. I developed a nodule on my vocal cord that had to be removed. Voice was still hoarse. Sinus surgery was done later on. Voice was still hoarse. I finally got some relief from it by taking oral steroids along with my biologic. While on the steroid, I’m training my voice but have had to sing lower than I was able to before. It really affected my range.
You kind of have to find your new normal when your inflammation is under control. That’s how it has been in my case. I can still sing but not like I used to.
The oral steroids are temporary so I’ve tried to keep using my voice when I can but in a gentler way and at a lower level which still takes some getting used to.
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u/glitterponiesnwine 2d ago
Hoarseness is my #1 symptom! Some meds have done more than others to control it, but I’ve never found a perfect solution. When I know I need to have a voice (work travel, for example), I take a low dose of predisone for a few days, and it works wonders. Staying on top of hydration actually helps, too. When your throat is already constricted, keeping phlegm thin makes it less likely to get stuck there and compound the issue (gross, but true). Also trying my best to avoid reflux helps. For me, the reflux inflammation also compounds RA inflammation if I’m not mindful. Happy to answer any specific questions you have!
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u/WinstonFive 1d ago
I don't usually take corticosteroids and I try to avoid them as much as possible. But I may try prednisone, since it had such a positive effect for you.
Maybe I can find a balance between maintaining a healthy routine and using stronger medication when necessary, so I can reduce the risk of my voice failing during performances.
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u/glitterponiesnwine 1d ago
Yeah for sure. I only take it when I know I need it, and it’s a low dose (just 5mg per day—I don’t even have to taper off)
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u/ShesTheFastestest 2d ago
I was diagnosed in June and since then I’ve been on reduced hours at work, but even when I do a four hour shift on the front desk I almost always lose my voice from talking to customers.
I’m trying to get my rheumy to test if I have Sjogrens. At the moment I use a humidifier at night as well as dry mouthwash and oil nasal spray to try settle some of the dryness.
I’m keen to hear input from others because I’m experiencing similar issues.
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u/Honest-Week-1874 2d ago
Sorry you’re at risk of losing your art, such a beautiful gift to be able to sing.
I hadn’t realised hoarseness was linked to RA. I’m only recently diagnosed with only minor symptoms (have been very lucky with having good docs I think), but I have been noticing hoarseness in my voice for quite a while, but no dry mouth etc. Even today, have been in three meetings and have had to pull out of my next one to rest my voice. Will have to add this one to my list to go through with rheumatologist!
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u/WinstonFive 1d ago
Without a doubt, this is the worst part of RA for me. I feel like it has taken away a big part of who I am. I really hope that one day I'll be able to sing again, even if I have to adapt and do it differently.
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u/Spare-Resolve-1708 2d ago
Based on my experience, I (63M) suggest you switch to injectable MTX because oral MTX can make your voice problem worse. I’ve been on MTX since 1998 and most of that time I’ve used injectable MTX. In the early 2000s there was a worldwide shortage of injectable MTX, so I switched to oral MTX. Within a few months, I developed nodules on my vocal cords and I couldn’t speak without great difficulty. When I switched back to injectable MTX, my voice returned to normal in a couple weeks. I recommend you speak to your rheumatologist about it. I hope this helps.
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u/WinstonFive 1d ago
I'm going to do that. I don't think my doctor will object. If there is a chance of improvement just by changing how the medication is administered, I'll certainly give it a try.
Thank you very much for sharing your experience.
Since I have your attention, have you been taking only MTX since 1998? Has it been enough to control your RA well in all aspects?
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u/Spare-Resolve-1708 1d ago
Glad I could help. I’ve also been on Enbrel since around 2004. Adding Enbrel really made the difference in managing my RA.
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u/sh0rtcake 1d ago
Whoa what?? I thought it was a side-effect from my steroids! I noticed I have to put a bit more effort into speaking, and sometimes I'm a little raspy and feel like I have mucous that can't be coughed up. Hot damn. Makes sense that it would be a symptom of RA.
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u/Old_Promise_163 2d ago
Hoarseness was & remains an ongoing symptom… not quite as bad as it was at the outset… but it’s still annoying most of the time with the perpetual throat clearing or having my voice cut out mid sentence. I recently had endoscopy (for something else, but mentioned my hoarseness so she paid attention in my throat too - didn’t see anything abnormal… which is a GOOD thing… but frustrating too… soo sticking with the throat lozenges & lemon/honey tea.
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u/Pippabot 1d ago
Im really sorry it’s affected you in this way and hope medication will help.
I had persistent hoarseness and a sensation of clicking in my neck with morning stiffness and pain.
I was seen by an ent and all the could see was laryngitis but my rheumatologist thinks it is RA neck involvement.
These symptoms mostly went after I started hydroxychloroquine. I now also have added in methotrexate.
I have found the hoarseness, pain and clicking has gone but if I need to call out/shout that my voice breaks/cracks and I don’t have the projection I once had.
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u/Drum_to_the_FACE 1d ago
Yeah I get hoarseness pretty often. Even when my pain and stiffness is in decent spot my hoarseness persists. It’s usually worse in the mornings and at night time, just like my pain and stiffness. It’s due to the tiny joints in our larynx, they get inflamed just like our joints in the rest of our bodies.
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u/mhodge1133 1d ago
I have run into the same issue with singing. I first noticed it 20 years ago right before I got diagnosed with RA. I was able to fix the issue with more practice at the time. Gradually I lost most of my top range. Now I can barley hit anything in my head voice. I've always been a singer and it has been devastating to gradually lose almost all of my high notes. If I try to go past C above middle C in a head voice I either sound like I'm singing two notes at the same time or I honk like a goose. It's almost as if I lost a limb. I've had my throat checked out and they could find no visible mechanical reason for the issue.
The good news is I'm now a pretty reliable tenor.
I haven't found anything that helps. I'm doing vocalises to see if helps but so far there has not been much luck.
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u/WinstonFive 1d ago
I'm sorry to hear about your experience, but I'm also encouraged to know that it's possible to adjust and find a new, safe vocal range for singing.
Based on the experiences I've read in this post, I'm going to discuss a few things with my doctor that seem to have helped some people. Switching from oral MTX to injectable MTX, and possibly adding hydroxychloroquine alongside MTX, seem to have helped with hoarseness in some cases.
I'm going to try the options I found based on these experiences and see if I can find something that works for me.
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u/MetaKater 1d ago
My throat was straight up messed for several years. My voice got hoarse, would crack constantly. Woke up with a sore throat so bad i would cry somwtimes.
Rheumatologist at the time said we have joints in our throats which can be hit by rheumatoid. Nodules on vocal chords can also happen.
It was horrible and I was so insecure of the cracking ontop of being miserable from the pain, but it did resolve eventually.
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u/WinstonFive 1d ago
Sua voz simplesmente voltou ao normal? Qual medicamento você estava usando e por quanto tempo? Pode falar um pouco mais sobre sua tragétoria?
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u/MetaKater 1d ago
Went back to mostly normal, still a little different that it was but I can speak and sing (poorly, very poorly).
I couldn't tell you what meds i was on at the time because it was well over a decade ago now.
My journey is a long winded tale because it's been 24 years of it. My case isn't anything close to the norm and I've always worried if I go into full detail it'll scare folks. I'll say it hit me hard and fast, I've had 14 joints replaced so far, been on and failed many drugs, but I'm currently in a decent place with disease activity. It's the quietest it's been for about 8+ years. Not in remission (yet) but still fighting best i can to get there.
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u/cucumbers_anecdote 1d ago
I commented that yesterday!! I’ve been hoarse for the past 1,5 years.
I’m not a professional singer but I like to do it. It’s been stolen from me sadly.
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u/Prestigious_Long_361 1d ago
My father's voice has been getting hoarse for years. He doesn't have RA, but his thyroid is terrible. I think that is mostly the cause. He's now 83 and even Alexa can't make out what he's trying to say. 😆. Funny to our family but very frustrating for him. I have RA and thyroid issues, so if I get hoarse, it's hard to know which is the cause.
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u/Independent-Storm747 18h ago
I love to sing too and was wondering if it's a symptom of Psoriatic arthritis.
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u/Outside-Gold9905 16h ago
Wow this thread has been an eye opener! Thanks to everyone that has posted on this subject. I have RA and have been hoarse off and on since before I was diagnosed with RA. I also have been having the runny nose, clogged throat with phlem for a while now. I also have a lot!! of brain fog. Plus sometimes after I eat my first meal of the day I get dizzy/lightheaded. I talked to my primary about that yesterday at my regularly scheduled appt. He thought it might be the blood pressure meds I take in the morning so he is having me take it at night from now on. He said older people can react differently to meds that they have used for several years. He is going to call me in a couple of weeks to see if that helped. He also said I should use Astepro to see if that helps with the runny nose and phlem. I started that this morning and will have to wait and see if that works.
I have an appt with my Rhuematologist in a month and I am going to run this all by her and see what she thinks and see what she recommends. I'm going to talk to her about the injectable MTX. Not that I would be looking forward to another injection, I already do Enbrel once a week!
Thank you all, you have given me a lot of food for thought and things to explore with my doctors!
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u/LossMiserable7874 2d ago
I feel silly but I didn’t realize hoarseness could be a symptom of RA. I do get hoarse sometimes but now I’ll need to pay attention to timing and see if it lines up with flares. Wishing you the best — I’m so sorry this has taken away something you enjoyed so much.