GP referred me for Gastroscopy which I had yesterday. Relieved there was no sign of any tumours or Barrett’s Oesophagus but inflammation seen in upper stomach. Consultant suggested asking GP to switch me from Omeprazole to a different PPI and not Lansoprazole.
Interesting - must do some research!
Still feel throat constricted and swallowing affected though so back to GP to discuss what next.
Thank you all for your replies and good wishes to my original post.
Glad you’ve got that done swiftly and got the results too.
You have some answers darling, but still you don't know the cause of your throat problems darling. Sending hugs. xx
Thanks Sylvi. But at least it doesn't look as likely to be throat cancer, which as I'm an ex-smoker (gave up about 15 years ago) was worrying me!
However, I have researched today the side effects of Alendronic Acid side and see they can cause inflammation in the stomach and throat problems like those I've experienced. So sent an email to Rheumatology Help Line asking for advice.
I am on them as well so i would look forward to the answers to that question darling. I have never smoked though.xxxxxx
hello Lolabridge, I have osteoporosis and also a family history of oesophageal cancer. I brought this to the doctor and was given Zolendronic acid infusion. It’s a once a year visit to the hospital with nine of the stomach issues.
Thanks dippy - that’s what I hope my Rheumy will switch me to!
It's reassuring to know what it isn't but hope you can get to the source of what may be or what is making your throat constricted and causing your swallowing to be affected. Warm wishes to you xx
Thanks Pippy. Wondering if the Alendronic Acid is the culprit! See my reply to Sylvi above. xx
Hi Lolabridge
Sorry to hear you've been experiencing these issues. I did see your earlier post, but didn't get chance to reply.
I've been going through something similar for about 18 months now. It sounds like similar symptoms- difficulty swallowing, throat often "aches" but not sore as such, voice changes and hoarseness, throat feeling constricted as if it's not as wide as it used to be, can be tender to the touch at the front and sides, and a vague feeling that the position of my head/neck feels somehow different.
I don't know if this will be of any help, but mine seems to be a mixture of causes.
Like many of us I've had secondary sjogrens for 30 odd years and it causes a very dry mouth and throat (often makes me cough) - but never these specific symptoms before. I've also had the voice box inflammation which can cause hoarseness, but didn't have the other symptoms then.
My rheumatologist sent me to an ENT Consultant who was very nice and thorough. He arranged a throat MRI and ultrasound, both of which showed nothing horribly untoward. They also did the camera up my nose and down the throat to have a look (just in clinic). Apparently it showed one very red and swollen tonsil, and a lot of irritation from GERD. I've been on PPI's for about 25 years, but it seems I wasn't taking them at the optimum time. My rheumatologist had already switched me from Omeprazole to Esomeprazole. The ENT doc told me to split the 40mg dose in two. 20mg in morning 30 mins before breakfast, and 20mg 30 mins before evening meal. He also advised me to take Gaviscon/Peptac every night at bedtime, and if required after main meal. I've stuck to this religiously and it has helped. The follow-up appt showed less irritation, although I still had a swollen tonsil. It's just being monitored at present.
The final possible change is that more neck damage has been confirmed. I already had my C1/C2 fused a number of years ago due to atlanto axial subluxation. It's now been discovered that my C3,4,5 and 6 have deteriorated. Two of the discs are slipping forward, and one is slipping backward. Therefore, my vertebrae are very out of line, and it's causing my neck to want to drop forward on to my chest. It's difficult and painful to hold my head up straight. I'm due two big ops and was meant to have the first in January but had to temporarily postpone as I'm still getting over the thigh bone break and the resulting complications, from January 2021. I still can't walk very much, weight bear fully, and still use either a gutter walking frame or gutter crutches. As such, I just couldn't envisage how I would cope while still so immobile. This neck damage has been exacerbated by having to use a frame/crutches for so long.
Anyway, sorry to bore you with details. I was just wondering whether you could have several factors that could be combining to cause these symptoms? Don't know if you have any cervical spine issues, or have hadto particularly rely on any different walking aids recently or anything like that? (I certainly hope not)!
BTW, I don't have Aledronic Acid. I do have Zolendronic Acid infusions, but these symptoms precede me starting that treatment.
Hope you can find a way to manage it.
Best wishes X😊
So sorry Kags to hear your thigh break and vertebrae are causing major issues. Gentle hugs to you and also to Lola. 💗💗
Hi NKThanks so much for taking the trouble to reply with those kind words. Means a lot.
Don't know if you recall, but the thigh (femur) break is the one I sustained 2.5 years ago which wouldn't heal and has caused various problems. (Didn't want you to think I'd had another one since)!😉 It's just the same thing dragging on. Still, at least the bone is healing a bit now- hurrah!
Hope you are ok after all your ongoing hassles (to put it mildly). Hope the new treatment is suiting you, and you are as well as possible.🤞
Best wishes x😊
Oh yes I do recall your horrible accident and leg break/injuries, Kags. I’m glad something is finally making some progress. Can you walk outside yet? All three of us have had injuries from falls we’ve rather not have had but mine weren’t as bad as yours or Lola’s but I did fall very awkwardly.I have still got a very tender shin and it bruises easily now. I damaged something but didn’t go to hospital as it was the height of the pandemic. Would have gone of course if a break had been apparent. I hope you can make good progress now and same for Lola. Let us know your progress. xx💗💗
Thanks NK. I'm glad you are more or less recovered from your fall now. Yes, I am going outside a little now with the crutches. A couple of my friends take me to the local Starbucks too. We go there as it's only about 5 minutes away, can park right outside with blue badge, and it's all flat and accessible. So nice, to have a little taste of normality again!! Parents took me to my hairdressers today, so that qas much appreciated. I'm hoping to get back to driving ...... one day!
Hope Lola's recovered too. xx😊
I hope you do get back to driving, as it’s good to have some independence but good too your friends took you out and your parents did as well. I hope you have a lovely summer of going more places and feeling much better. Yes my leg is back to it’s “normal” now, thank you. 💗xx
Oh gosh what a lot you’re dealing with Kags. A right pain in the neck!
I think it could be a combination of the PPI and the Alendronic acid for me as I don’t think I have Sjorgrens. I shall ask about switching to Esomeprazole and whether it’s time to find a different treatment for the osteoporosis.
Thanks for your suggestions. Hope you can feel better soon.
Haha! Yes, pain in the neck indeed!😁 I do hope you find a compromise in your medications that works for you. As I said, I have the zolendronic acid infusions now, which are just once a year. You can only have it for 3 years though. I couldn't get on with risedronate or denosumab injections. Do think about the Gaviscon advance or Peptac. They have really helped me with the acid.
Also, apologies for the long previous post. I glanced at it again and couldn't believe how long I'd wittered on boringly!🙄 Hope it didn't seem too much of a litany of woe! Wasn't meant to be. Still, hopefully, you had a good night's sleep after it - 😆😆
Best wishes x😊
Thank you for your info I will discuss with my Rheumy. X
You are most welcome. Good luck x😊🤞
So sorry to hear about all you're issues, you're very brave & I hope you're sorted out & more comfortable soon. I will look into Esomeprazole as I also had camera up nose & into throat to check my goiter but it's not nice without the anaesthetic! I was told to take Gaviscon Advance after every meal & @night after my Gastaroscopy by ENT but it made me feel I'll so I take Gaviscon Double action now which I can tolerate. I will ask the Doctor about swapping to Espmeprazole though, very interesting thanks. Not heard of Zolendronic Acid before either but probably of the same family so check that out. Hope hey sort you out so you're more comfortable soon. You've got a lot to cope with, sending g you hugs.
Hi ArtfanaticThanks so much for your kind, supportive message. I'm afraid I really can't claim to be brave - you just tend to bumble through it all, don't you?🤪I was diagnosed just after turning 14, so I've had 40 years to get used to it now too!!😁 (Not that you ever do entirely, of course)😉
Definitely worth investigating the Esomeprazole - you never know. I've definitely found the Gaviscon type medicine very helpful. I tend to have the Peptac liquid in peppermint flavour as I prefer that.
As for things like the Zolendronic Acid infusions and Denosumab (Prolia) injections, my understanding is that they are kind of the next step up from things like Alendronic Acid/Fosamax/Risedronate. I'm not sure of the criteria for prescribing, but certainly worth looking into. Before my rheumy decided on Zolendronic acid, my GP talked about one called something like Boniva?? Apparently it's very similar to things like Alendronic Acid, but only taken once every 4 weeks instead of weekly. He said some people can tolerate that better.
Thanks again and best wishes x😊
I had a gastroscopy recently after a period of malaise and sudden weight loss and GGT high. Nothing discovered but Dr said keep taking PPI and that if it didn’t agree with me he’d be happy to change the script indicating that it often disagrees with patients. I’m on 20 MGM’s x 2 daily since early February so not long and have experienced a constant headache at this dose plus, bad skin, mouth ulcers, easy bruising and a bit of hair loss. I’m reducing by my own devices over the next month until I report back to Dr.
Hi, I have had similar issues with throat pain, hoarseness and loss of voice, and seen ENT 3 x to have scopes passed. I’ve always been found to have chronic inflammation which they put down to my rheumatology issues, as well as GERD. About 2yr ago I started getting breathless easily, and after tweaking asthma meds didn’t help, I had a HRCT. The scan showed pulmonary fibrosis, which the specialist said was actually scarring due to aspirating acid. I had always taken Omeprazole or Lansoprazole. Initially the respiratory specialist switched me to Esomeprazole, but discovered it interacted with my clopidogrel putting me at increased risk of further strokes. So it was switched to Pantoprazole, which has been good at settling reflux problems. She also told me to take Gaviscon advance, had to be that one as it forms a raft and stops acid backtracking into the oesophagus. I also sleep slightly elevated to reduce the risk of further aspiration occurring. I have a hiatus hernia, which I’m told is probably due to my fused ribs preventing lung expansion, so my diaphragm isn’t being exercised and has weakened, resulting in a hernia forming. Since changing ppi and using the gaviscon I’ve had no issues with my throat or voice. Hope changing your ppi helps.
Yes I hope it will too! Maybe I need to stop the Alendronic Acid tablets as well.
Yes stop the Alendronic acid tablets as I forgot to mention that having been on them for 20-25years without a review they caused my broken thigh 3yrs ago! You may think that's ridiculous but I was told that they've now found out that 15% of women get the adverse effect of the Alendronic acid causing bones to be brittle & break easily! Ironic as we're taking it to ward off osteoporosis!! I also broke my ankle in 2000 in 3 places & they didn't check about the Alendronic acid then. So be warned & check how long any of you out there have been taking it, as Nice now suggest 3 years on & a 2yr break I think??
That’s interesting about having a break after 3 years. I’m due one then!
Just check how long Nice suggest taking Alendronic acid for & the break time, not sure if definitely 3yrs on & 2 off ok!? Hope you get it sorted & check you're thyroid too. I lucky I dont have overactive or underactive thyroid, just a goiter & they left 1/3rd in so I don't have to take Thyroxin, but if the nodules grow more & push my oesophagus over more my swallowing will be affected & I'll have to have the rest out! Hoping it doesn't come to that. Get yourself checked anyway & hope you're feeling better soon.
I am having a barium swallow tomoz which I hope might give me answers as similar probs to yours
Hope it goes well and you can get some answers. 🤞🏻
thanks…unsure whether will find out tomoz or not
Hi Lolabridge, has you're thyroid been checked for a goiter? I have one & it had polyps on it & has pushed my oesophagus over slightly but I can still swallow food & drink, but difficulty with tablets. I've had 2/3rds removed but still have the side that's pushing my oesophagus! I was also on allendronic acid for about 20-25 odd years having been on Steroids & Methotrexate for my RA over that time. I was 34 when I developed a & I'm 69 now. I'm now on Abatacept biologic but still have throat & stomach problems & also had a Gastroscopy both ends! No tumours luckily but a very acid stomach. I'm on Omeprazole as I also have a hiatus hernia. I was interested to read that the allendronic acid can affect you're throat too!? Nobody has ever mentioned that to me. Also interested you're Consultant suggested a switch from Omeprazole or Lanzaprole. Is there a reason for that? Hope you get some answers & relief soon.
The consultant who did the Gastroscopy and saw the inflammation in the upper stomach thought the Omeprazole PPI I’m on may be the cause. I think she mentioned Esomeprazole as a possible alternative. It occurred to me that it may be the Alendronic Acid that has caused the inflammation and researching some articles shows it’s possible too. I had taken it very early in the same morning as the Gastroscopy. So I’m waiting to hear from my Rheumatology consultant now what he thinks.
I will ask for a thyroid check too!
I also have restricted throat after having a flare and just starting rituximab. Having to properly chew to eat. Its a mentioned side effect of the drug though I can't help it's also an RA effect too. Hope you get it fixed x
i was on Rituximab for a couple of years and never had throat problems or any side effects. Hope it works as well for you as it did for me.
Get better soon 🙋🏻♀️
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