Date: 01.08.2014
From: Stuart Pike
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Subject: Breathing/Sinus problems with PA
I just wondered if any one has this problem as i have pretty much had enough, the Gp, Rheumatology Dept. and ENTs have all discharged me.
I have PA and I started having breathing difficulties, after tests CT Scans the ENT found that the lining in my sinuses has swoollen making them overactive.All the stuff produced goes into my throat causing constant coughing, choking and vomiting(lucky to get through half hour without throwing up)so eating is a luxury now.Longest I've gone is 5 days without food(great for dieting though lol)
The ENT suggested surgery to cut out the linings then changed their minds saying they won't do it as cannot guarantee it will make any difference so I only have nasal drops instead which make no difference and the Rheumatology Dept will not put me on anything else as my immune system is shot too.I have already been on Sulphasalazine and MTX without any improvements.The only thing that did make any difference was a Steroid injection but they refuse to give me any more of them(had 2 in 3 years)
Any help, advice or cures;)from anyone who have experienced this will be very much appreciated as I am at the point where I go to bed hoping not to wake up in the morning to put up with it for anotehr day.
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Date: 01.08.2014
From: Julie
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Subject: Re: Breathing/Sinus problems with PA
Hi Stuart I used to suffer terribly with my sinus's, mine as I found out was the thyroid tablets I was taking, but for years I used every nasal spray you could think of, eventually using them so much (I bought a bottle a week) made me have polyps in my nose and I had to have them removed, a procedure which everyone said was horrible, all horror stories, the op was fine. I have never used those sprays since, the consultant at the time (I went private) told me that each time you use the spray it makes the linings of your nose thicker and in turn makes sinus trouble worse. I began using my own made up solution which my g.p. told me to try, one teaspoon salt into one pint of warm water and fill your own spray with it and use as often as needed, I found it to be far better than any shop bought spray, even my son started to use and he was amazed at how it cured his. Give it a try it cant hurt. Oh and also don't eat a lot of dairy, especially cheese it makes matters worse. As for the steroid injection you only had 2 in 3 years!!! I have RA and have had 3 a year, I think a lot of people do, unless there is another reason you cant have more I would ask for another or even ask if you can go on oral steroids for a while. How long have you been on mtx and sulpha? it does usually take a few months to work which can be very frustrating, what about plaquenil have they not suggested that one as well, I took plaquenil, sulpha and mtx along with oral steroids - luckily I now only take plaquenil and none of the others. Someone more knowledgable will be along soon just keep checking.
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Date: 01.08.2014
From: Sean
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Subject: Re: Breathing/Sinus problems with PA
Sounds terrible, I do not have personal experience of this - but I am aware from lots of earlier reading that PsA has a very strong association with Streptococcus infection - with the arthritis being a misdirected immune system reaction to the strep. I did used to experience sinus problems and constant phlegm and runny nose from cow milk products and still avoid them a lot today! Here is a related article on this - http://www.kumed.com/medical-services/otolaryngology/pediatric-otolaryngology/milk-and-cookie
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Date: 01.08.2014
From: Stuart Pike
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Subject: Re: Breathing/Sinus problems with PA
Thanks Julie & Sean for the replies:), I was on sulpha for about 18 months , had no side effects but no improvement either, MTX was about 6 or 7 months and gave me bad side effects so was taken off them. The last option they gave me was Leflunomide(think thats right lol)but haven't been given them due to all the ENT tests and infections I keep picking up.
I had oral steroids before and I felt worse than ever,took me a week to get over the side effects from them after I finished the treatment but I don't get any bad effects from the injections?
I have a different nasal wash NeilMed which I am yet to try.
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Date: 01.08.2014
From: Stuart Pike
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Subject: Re: Breathing/Sinus problems with PA
Forgot to say I did cut out a lot of dairy, used to eat cheese sandwiches all the time.The ENT gave me a list of things to avoid such as Caffeine, fried foods, fruit juice, fizzy soda, alcohol.I was told to only drink warm water Uurrggghh lol Honestly the only thing that helps slightly when my throat gets too bad is a sip of whiskey? I guess it just burns through everything but it does help me sleep lol
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Date: 01.08.2014
From: rhona
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Subject: Re: Breathing/Sinus problems with PA
Hi Stuart, I have to agree with everything Julie has said. Years ago I had terrible bother with my sinus's and was given drops on prescription that I used for 2 years until it got to the stage that I could hardly breath as the lining in my nose was so swollen. I had to ask to be referred to an ENT Specialist after the two years and he told me to through the drops away as they had caused a polyp in my nose and made things worse. I had an operation to freeze it off. I always found chocolate made it so much worse and at times I though I would choke as the polyp was growing down into my throat and the swelling inside was so inflamed. A whisky probably would help and I found things like onions, garlic etc also helped. I think the salt water sounds a good idea.
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Date: 01.08.2014
From: rhona
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Subject: Re: Breathing/Sinus problems with PA
PS. A couple of years ago I had 13 steroid injections in the one year. They didn't want to give me so many but at the time nothing else was working.
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Date: 01.08.2014
From: rhona
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Subject: Re: Breathing/Sinus problems with PA
Meant throw the drops away, not through.
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Date: 01.08.2014
From: Julir
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Subject: Re: Breathing/Sinus problems with PA
Rhona did you feel well on the injections, I cant imagine having to have as many it must have been terrible, did they help you, I would have been taking part in Olympics, even with one I feel charged up! when you read all the foods that cause us all different problems makes you wonder what foods will be left that do us any good!!!! I didn't realise fruit juice was bad for sinus problems you would think fruit would help. Tomatoes and strawberries are my enemy, but yet again I have been unable to resist picking tomatoes straight from greenhouse and gorging on strawberries so much so that I have had a few bad days, but by gum it was worth it, I am now banned from greenhouse:(
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Date: 01.08.2014
From: rhona
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Subject: Re: Breathing/Sinus problems with PA
Hi Julie, They did help a bit but I was still having severe problems with walking etc but at the time nothing else seemed to be helping even although I was on mtx, sulpasal. plaquenil and Enbrel injections. I got the jabs mainly into knee joints and sometimes they were systemic. I now get rituximab infusions and they have been a huge help. So true about the foods Julie, so many things seem to affect it. I was in Morrison's today and someone must have spilled or sprayed some sort of scent as my throat started itching like mad, I sometimes get the same sensations when I eat cheese. I have been enjoying a few glasses of wine recently and wondering if that too is affecting me as I have been a bit more sore this week. Take care xx
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Date: 02.08.2014
From: Stuart Pike
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Subject: Re: Breathing/Sinus problems with PA
Thanks Rhona:)there were more foods on the list like tomatoes that I forgot.If I have to cut out everything I like , you just think whats the point anyway.I am dying for a coffee lol not had one for well over a year now.
My kneed were the worst joints affected by the PA, have had them drained and injected numerous times but not for over a year, they once tested the fluid taken out and found it to be infected so had me straight in the hospital on an IV drip for Septicemia, worst week of my life as I hate needles lol The breathing,choking,vomiting part is the only real problem at the moment.Have to take sick bags with me wherever I go, good job I'm self-employed:)
Hope you all are coping ok though:)
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