Narrowed esophagus

[Asbeck]

My Rheumy has asked me if I have difficulty swallowing. So I wonder if this is a symptom of GCA. I recently had a colonoscopy and endoscopy with a stretching of the esophagus. The gastro doctor informed me that my esophagus was very narrowed and wondered if it had been bothering me. He wondered if it were on account of the Pred. Actually I had felt problems in my throat, but thought that it was the trachea. I still think I might have trachea problems. I most frequently have the GCA symptoms in the arteries on the sides of my nose and inside between my eyes. I know that these symptoms and the symptom and a narrowing of the Trachea are symptoms of Wegeners Granulomatosis. But after the GCA I developed PMR that is immediately fixed with Pred. Also the blood test for Wegeners was negative. Therefore, it is very unlikely that my arteritis is not GCA. (Temporal artery was really inflamed and an arteritis was diagnosed. But no giant cells were found. Took a lot of Pred for 30 days before the biopsy. Probably took care of the giant cells.) Is difficulty swallowing, or a perceived narrowing of the trachea a symptom of GCA? Of Pred? I have never read or been told that it is. But the people on this site seem to know more than most MDs.

[PMRpro Ambassador]

Dysphagia (difficulty swallowing) is associated with pred but how I'm not sure other than pred can increase reflux ( which is why they use PPIs) and reflux can lead to difficulty swallowing. That may be why the rheumy asked.

Amongst uncommon symptoms of GCA are cough and sore throat.

WG and GCA are only 2 of the LVV (large vessel vasculitis) possibilites but I imagine you could have mixed symptoms. That's about the extent of my knowledge!!

Though logic suggests to me that if the GCA is affecting the blood supply to the oesophagus (gullet) it could cause discomfort. A VERY unusual problem leading to the symptoms could be an aortic aneurysm - and that can be a complication of GCA. I imagine however that the endoscopy would have identified anything suggesting that as opposed to stricture.

Ask the man why he asked the question - I would!

[Asbeck in reply to PMRpro]

You are really incredibly knowledgeable. Thank you. My Rheumy said that we will have to MRI (or something) a heart artery and one which goes into the abdomen from the heart at some point to check for aneurisms. So I know that can be a problem. You don't scare me. I believe that knowledge is power. But I will keep it in mind. Called our emergency rescue on Dec-20-14. That's kind of a big step. Went to the hospital with breathing problems, throat problems, pain in temporal arteries and in the arteries on the sides of nose. Fever of 103.4 Fahrenheit. So at least I went. They checked some things, xrayed my chest, gave me 1,000 mg Tylenol and also slowed down my heart with something which they gave me intravenously and sent me home. I was tired and feverish (but not 103) for about 8 days. So I think that it was a virus. When I mentioned GCA and that I was worried that I was having a significantly dangerous flare, I think that they had no clue. I just didn't want to stupidly suffer a heart attack or stroke by not taking care of myself. I was trying to get to 6.75 mg Pred from 7.5. Was doing it way more slowly that your schedule. Stopped that. Can't do it now. Too many flares. See Rheumy Jan-26. Maybe I'll email her. Thank you so very, very much. I do have the capacity to communicate on line with the Rheumy. Because of you--I will.

[PMRpro Ambassador in reply to Asbeck]

Remember - you are NOT heading relentlessly for zero pred - much as we (and all docs) would love to! You are looking for the lowest dose that manages your symptoms. If you are good at 7.5 that is a dose many doctors are happy with, it is what is called a physiological dose, about the same amount the body needs for life and what it would make if you weren't on pred. Any infection can increase the amount of pred you need - and that all fits doesn't it?

And good guy rheumy - he's up to speed on the aneurysm check and that is good. It is a long term monitoring - should be repeated every couple of years at least. I was wondering whether to mention it - many patients would freak out at the thought and some people don't talk about it because of that. I suspect a lot of doctors also think it is TMI and back out of mentioning it rather than upset the patient. I suppose 10 years ago that might have been fair enough, they weren't easy to deal with but we are in the era of stents now - provided they are found early enough and checked.

Hope you feel better very soon

[Asbeck in reply to PMRpro]

Thank you. When I told the Rheumy that I was trying for 6.75 she also told me to stop reducing at 6.75 and that we would wait for a while. She would not mind that I didn't make it. With her approval I initiated all reductions after 9 mg. through your method and only by 3/4 of one mg over each 57 day period. By the way, the MD is a she. Maybe that's part of the reason why she is so sympathetic but also tells it like it is. Thanks again.

[Hidden]

Hi Asbeck,

You are right that tracheal stenosis is very common with Wegeners ( GPA ). I am assuming the blood test you mention is ANCA but 40% of patients with limited GPA are ANCA negative and there are reported cases of GPA/ large vessel vasculitis crossovers. Have they ever taken a biopsy from your nose or trachea?

I hope you manage to get some answers soon.

[Asbeck in reply to Hidden]

Thank you Keyes. I really appreciate your input. I didn't know that there are reported cases of GPA/large vessel vasculitis crossovers. I will stay on top of using that knowledge. The blood test WAS ANCA. And the Rheumy did tell me that a negative test was not completely definitive for not having GPA. For 7 months I was going to an ENT doctor who finally crushed some of the bones between my nasal passages and my sinuses widening the area. This caused some peculiar things to come out of my sinuses and actually helped me sufficiently that I had the energy to go to a Rheumy. That's when all heck broke loose with the diagnoses of GCA and the temporal artery biopsy. But we didn't biopsy the nose or the trachea. I have had lung x-rays. I had asked for one when my calcium reading was high. And I just had another in the hospital 12-20-15. My Rheumy will get it. The earlier one did not show Wegener's lesions. I know that my Rheumy looks at blood lover readings. I don't know if she looks at renal readings. If the center of my discomfort continues to be my nose, then I'll ask for my trachea to be biopsied. I guess that I could get that done in my nose as well. The ENT guy who missed the arteritis has good hands and I suspect could do the biopsies. Oh well. I DO think that I would be sicker than I am with Wegeners. But then again I am an eternal optimist. Even the Gastro guy came in and asked why I had not complained more about my esophagus. For some reason lots of stuff doesn't bother me. And I think that for me Pred makes me unreasonably happy--euphoric. But thanks again. I will stay on top of this and getting my arteries looked at for aneurisms. I hope to live a long time!

[Hidden in reply to Asbeck]

Good luck with it all Asbeck. The problem is that so many of these auto immune diseases share the same symptoms. My journey has has seen a tentative diagnosis of PMR, GCA/ large vessel vasculitis, Connective tissue disease/ lupus, Bechets and now I have tested positive for the gene that causes ankylosing spondylitis. It is almost certainly AS I have with a polymyalgic presentation and highly atypical given my age and sex! There may still be some kind of vasculitic component.

I hope that all of us will be around for a long time to come!

[PMRpro Ambassador in reply to Asbeck]

I suspect there are a lot of cases of crossover in autoimmune disorders, a name is handed out on the basis of the best fit and they work from there. The really good doctors think rather more laterally and don't take anything as gospel. My experience of rheumatologists suggests to me they often aren't particularly imaginative and are very prone to throwing their toys out of the pram if you disagree with them - although I do know a few outstanding ones who will discuss any concept.

If only there were more vasculitis specialists...

[Asbeck]

Thank you. I was going to leave my comment privately. However, I learn so much from other people's comments that I threw mine out there in case it might help someone else. You are wonderfully knowledgeable and you use it to help us. And promptly. I now know that just when I had thought that I had this disease more or less under control--I'm at odds again. However, I do believe that I have an outstanding Rheumy. She's my 2nd. She was recommended by a hematologist who saved my mother's life from ITP. He is internationally renown now and studies auto immune diseases of the blood. So after 7 horrible months without prednisone and another 5 or so with a fairly good Rheumy, (who wanted me to take methotrexate) I have now hit gold. Reviewing in my mind the questions of my new Rheumy I suspect that she suspects (or at least is considering) the crossover. Also in case it's simple, rather than complicated, today I ate before I took my Pred. (I always take Nexium.) It's a pain in the neck. But maybe it will help my esophagus. (But at about 4:00 AM I noticed my trachea. It is weird to notice one's trachea. I think that my asthma drugs [Advair 250/50] help the trachea.) Oh well. I am tired but feel good. So it's been all good days since about 12-30-14. All of 2015 has been good. I'm on a roll.