throat problems and PMR: It appears that a few... - PMRGCAuk

PMRGCAuk

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throat problems and PMR

Freshairfiend profile image
28 Replies

It appears that a few people with PMR have experienced throat problems. I have an ongoing, very debilitating throat issue, since May 21st. It has made me very tired from the onset. It gets worse during the day, feels raw, strained, and an effort to talk. I’m unable to call my dog or raise my voice at all. I can’t sing anymore. It does feel like the vocal cords are straining and sometimes a bit sore, but most times, raw.

My gp refereed me for an X-ray and has now fast tracked me for a cancer test, even tho she thinks cancer very unlikely.

it would be very helpful to collect info on others with this issue, in advance of a rheumatology nurse appointment on Tuesday.

Many thanks

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Freshairfiend profile image
Freshairfiend
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28 Replies
SnazzyD profile image
SnazzyD

Has your GP considered GCA? I remember having hoarseness, dry cough and an extremely mild throat ache. It is mentioned in these NICE guidelines below for diagnosis of GCA. Presumably they’ve ruled out gastric reflux too and are they thinking about an endoscopy?

cks.nice.org.uk/topics/gian...

Freshairfiend profile image
Freshairfiend in reply toSnazzyD

Thanks, I didn’t know that about GCA and throat issues. I don’t have the main ones of headache etc. She’s sending me for the cancer test first. Then we’re going to discuss what else it could be, so I’ll. mention these to her.

SnazzyD profile image
SnazzyD in reply toFreshairfiend

The throat and voice issues came for a couple of months before the head pain started. There isn’t a set pattern. Anyway, they are starting the diagnostic process.

PMR2011 profile image
PMR2011 in reply toSnazzyD

Agree with Snazzy. I had PMR for 6 years without any throat problems. I then developed GCA and one of my primary symptoms was hoarseness and dry cough. Particularly when tired. Don’t want to alarm you, but good you’re getting it followed up on.

Freshairfiend profile image
Freshairfiend in reply toSnazzyD

Had a very short notice ent referral today.no cancer, phew! Reflux issues was the conclusion.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toFreshairfiend

Good news,,

SnazzyD profile image
SnazzyD in reply toFreshairfiend

Good!

piglette profile image
piglette

I have had the hundred day cough earlier on in the year. I don’t know if that is what you might have???

Freshairfiend profile image
Freshairfiend in reply topiglette

No cough at all!

piglette profile image
piglette in reply toFreshairfiend

Oh fair enoigh, it is not the hundred day cough!!

Viv54 profile image
Viv54

I dont have a sore throat, but my voice is much weaker after talking to people for a while. My daughter noticed this only the other day . Good luck with your tests . PS should have said this has only become an issue after taking Pred .

Motida profile image
Motida

Sorry to read about your problems with your voice and throat. Since diagnosis I have to keep clearing my throat to speak (frog in the throat type of thing). It is hard to contribute on zooms - reading a text or commenting. A friend told me my voice sounded hoarse and I coughed more while eating - it reminded her of her brother's cancer in his food pipe which went undiagnosed till he died.

My GP sent me for an endoscopy under the 2 week cancer arrangement and they found polyps and took biopsies. I have to wait 6 weeks for the results. They also told me that steroids make polyps more prolific and bigger. Unfortunately the camera equipment could not capture images of the polyps because it was broken, so they sent me a diagram - better than nothing.

I used to be in a choir but cannot pitch my voice or produce a good tone at the moment, so I hum along sometimes to see if I can find the note.

I hope you will keep hopeful and your voice will return once the PMR has burnt itself out.

PMRpro profile image
PMRproAmbassador in reply toMotida

Rather than write it all again - my experience with "just" PMR was identical to Motida's. It definitely wasn't due to pred or any other medication as I wasn't on any but it continued right up to starting pred when it improved to some extent but I haven't been able to sing at all since then.

Sophiestree profile image
Sophiestree

I have LVV and one of my symptoms was a very sore throat and what felt like swollen glands around my neck and under my clavicle. Since diagnosis I have also had persistent sinus issues, regularly get infected and a sinus drip which means I often lose my voice through coughing or trying to clear it all the time. I have found a humidifier in my bedroom at night has really helped me a lot.

Broseley profile image
Broseley

Hi, what dose of steroids are you on? I had a persistent sore throat at higher doses. I started on 40mg and it continued until I got below 20mg. Meanwhile my GP sent me to ENT who did a thorough examination and throat swab. Nothing was found and I was prescribed Diflam. It didn't help. I came to the conclusion that it was caused by the pred when it cleared up below 20mg.

Freshairfiend profile image
Freshairfiend in reply toBroseley

I’m on much lower, 13mg and tapering. Had a very short notice ent referral -no cancer, phew! Reflux issues was the conclusion.

Broseley profile image
Broseley in reply toFreshairfiend

They suggested that to me, too. But I take omeprazole and have never had a problem with reflux so I dismissed it. The fact that it cleared up once I got on a lower dose of pred suggests to me it was that.

Ballerina75 profile image
Ballerina75

I have had throat issues for over a year now as well. I’ve had PMR for 8 yrs & GCA for 4yrs - ENT couldn’t find anything wrong. I seem to cough/choke for no reason & like you can’t sing or project my voice. The conclusion is it’s another ‘side effect’ of our drugs!

So sorry for you - it’s tiring & can be embarrassing at times. I carry a bottle of water with me when I go out to help avoid it!

Freshairfiend profile image
Freshairfiend in reply toBallerina75

Thanks, Had a very short notice ent referral. no cancer, phew! Reflux issues was the conclusion.

Zebedee44 profile image
Zebedee44

Hi, I reported a sore throat to my doctor several times over two years and finally saw an ENT doctor who put a tube up my nose and saw redness on the larynx caused by acid reflux from long term use of prednisolone. It didn’t improve with doubling my dose of lansoprazole or using gaviscon or Famotodine so I was referred to gastro who found polyps all the way through my digestive system. Reassuringly non cancerous but biopsies have shown atrophic gastritis in my stomach and I’m due to have a repeat gastroscopy.

My sore throat is worse in the evening. I do occasionally get a hoarse voice and if I have to shout loudly for the dog. I am continuing on one lansoprazole a day and always take my pred with kefir, thinking I was looking after my stomach! i honestly don’t know if it is the pred or the PPI which has done the damage, very much hoping some treatment or recommendations will be made after my follow up gastroscopy .

Don’t ignore it, that’s my advice, xx

Freshairfiend profile image
Freshairfiend in reply toZebedee44

Many wThanks, Had a very short notice ent referral. Endoscopy no cancer, phew! Reflux issues was the conclusion.

AtopicGuy profile image
AtopicGuy

Make sure your GP considers myasthenia gravis alongside all the other possibilities. It causes muscles to fatigue more easily, usually beginning with those controlling the eyelid(s), which droop(s). If the muscles controlling the eyes are affected, it can produce double vision, like GCA. If the weakness spreads to the muscles in the throat, MG can make speaking and/or swallowing difficult, especially later in the day when tired and/or when stressed. By progressing to the limb muscles, MG can mimic PMR by making it hard to raise the arms above the shoulders. And, contrary to the myth, symptoms often include muscle stiffness and/or aches & pain in patients who push through the fatigue each day. A period of rest allows the muscles to recover and the cycle begins again.

Freshairfiend profile image
Freshairfiend in reply toAtopicGuy

Many thanks

67Blue profile image
67Blue

Hope you get things sorted soon as it is worrying when you hear of things like throat cancer, as i also know people who have died from throat cancer. I took steroids and Omeprazole as given for PMR/GCA but after many months insisted the Omeprazole wasn't working as I was getting sore throats and I felt food got stuck in my throat, they just upped the Omep. eventually a locum listened to me and sent me for an endoscope . The result was, nothing they could find to worry about or some such words, but i did have a very small hiatus hernia and some inflammation. All he suggested in his letter was try Esomeprazole, which the drs wasn't interested in. However now in remission and still needing medication for Acid reflux I did talk to a different dr to try to get on a H2 blocker and mentioning my bad Hayfever she asked had I thought of it being my hayfever as the nasal drop from that can cause throat inflammation. So I am currently trying a stronger hay fever tablet and using Beconase nasal spray. Also finally trying a H2 blocker, so not sure now which is doing the job, but I feel so much better and have lost the sore throat---- but still have some acid reflux which I never had before the Steroids/ Omeprazole /AA so am forever trying to find a cure as it just seems hit or miss with the medical profession..

79andCounting profile image
79andCounting

Could it be from dryness? Rule of thumb is that if you have one autoimmune disorder, you’re likely to have another. Sjogren’s messes with the moisture-producing glands and causes dryness of throat, eyes, etc. I take Pilocarpine, otherwise my throat gets so dry my voice becomes a painful low croak.

Freshairfiend profile image
Freshairfiend in reply to79andCounting

Thanks, I’ll investigate that

PMRpro profile image
PMRproAmbassador in reply toFreshairfiend

There is also sicca syndrome - same symptoms as Sjoegrens but no antibody to be found.

Stills profile image
Stills

I do not have PMR but a rheumatoid disease that had given me a very sore throat since diagnosis in 1979. I too have been ‘scoped’ for causes including cancer and none found. GP clueless obviously and hospital nonplussed during recent AE visit despite throat being visible red and yellow at the back.

PS: I have other AI conditions including dry eyes

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