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sinus issues
Hi Everyone. Trying to understand this disease a bit better. Once the drugs start kicking in (only started treatment last wednesday) can I expect the sinusitis to also go into retreat? I am trying to paint a picture of what to look forward to with remission. So far the main impact has been when the Prednisolone was introduced the nerve inflammation immediately started to retreat. Then Wednesday the 10 mg Methotrexate arrived but the Prednisolone was reduced fro 30 mg to 20mg. Now there is pain in my left foot, ankle and knee which is especially bad on walking (should call it limping).
My tongue ulcer started shortly before I arrived here on the 21st January (here being hospital) and it grew to about a 1.5 cm diameter (size of a small coin). It didn't appear to retreat and everything I tried didn't make any difference. Then 2 weeks ago a nursing friend who also suffers with Mouth Ulcers put me onto a gel call Gelclair which does relieve the pain quite a bit. I am still eating only mushy food but in-between eating its much better and also the referred pain to ears, mouth, teeth and jaw has stopped and the pain doesn't wake me up during the night. Then finally we think the ulcer is shrinking.
A gastroscopy found several stomach ulcers. My bowels have been fairly quiet since I have been in hospital. I have tiny sores breaking out on the skin like pin pricks but these come and go fairly quickly.
So I am wondering what can I expect to improve by the Prednisolone vs the Methdextrate? Or do some of these other issues just linger around?
Thank you for your help. I just don't know what to expect. The sinusitis has been the most constant issue then since Boxing day (26th of December) the increasing joint pain which turned out to be Vasculitis reared its ugly head for the first time. Before that I had fleeting joint pains sort of migrating around the body which would bother me in various places for maybe a few months before moving on. Last year the most persistent was the right shoulder and upper arm and coming and going the right hip. Strangely enough the hip wasn't affected with the Vasculitis attack.
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I would think most of those things would retreat after some time on drugs. The mtx should be at strength in about 5-6 weeks, thereby suppressing AI. Depending on your doses of pred strength, the inflammations should start receding fairly quickly. Best to you.
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Thanks Don. What's AI? All the best. Inge.
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Hi Inge,
mtx and pred complement one another. Mtx is an immunosuppressant that stops your white blood cells from attacking your body. Pred is an anti-inflammatory that relieves pain and the inflammation in your blood vessels that is the main manifestation of Vasculitis.
At this point in your disease, your pred dosage should be somewhat higher. I was at 60 mg/day when diagnosed and tapered off very gradually - took 8 months to go from 60 to zero.
Do you have a Vasculitis specialist? If not, I'm sure one of the Aussie members will have a good recommendation.
Good luck and better health!
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Thanks Pete :) I think they were comfortable with 30 mg as my inflammation markers were responding quite well and so was the inflammation. Things improved rapidly within a couple of days. Then when it dropped to 20 the pain started creeping back so I think we need to stick on 30 for a while longer. The Rheumatologist and the Professor of Rheumatology and Immunology who are seeing me very regularly seem to know the disease so at the moment I am happy to remain in their care.
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If you have a sinus infection then you will need something like Avelox to treat it.
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Thanks phil. The trouble is the ENT specialist was thinking about putting me on antibiotics but at the time I was already on antibiotics for a UTI they picked up. Then he did the biopsy and it came back "unspecfic inflammation with no sign of infection" so that I guess would make it difficult to select an appropriate antibiotic. Seems the last couple of days I notice an improvement. Finally started the Nasal rinses today so that may help a lot too :) IngeD
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Hi inge,
In regards to your question on the blocked sinus - No, it doesn't really go away.
Most of us have been doing rinses from day one which may have been years ago.
AI means auto immune
A sinus infection can also cause ear, face and teeth pain so that combined with your poor tongue, my guess is it would be pretty bad.
I'm glad that things are starting to improve and I'm glad that they increased your pred a bit. Sometimes a decrease in such a short time, just doesn't work out well.
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As I understand it, you may have sinus infections from time to time, which would normally be treated with antibiotics, as Phil says, but Wegs itself causes symptoms that mimic sinus infections to some extent. So just getting the proper treatments for the Wegs would go a long ways toward clearing up the inflammation that is causing those symptoms. It does take some time, and sinus issues seem to take the longest to respond to treatment. I had sinus and ear issues for years, including infections, some of which were antibiotic resistant. I did a lot better when predisone was prescribed along with these antibiotics. When Wegs went into my lungs was when I got diagnosed. The combination of immunosuppressant (CTX) and prednisone (60mg. on down) cleared up my lung issues in short order. But the sinus stuff dragged on and still does, though to a lesser extent, and that is partly due to irreversible damage to the sinus structures and tissues, causing excess mucus to be produced. That is why sinus rinsing is so important, to minimize too much mucus collecting in there and causing infections. Many of us rinse several times in a row, and you might be surprised at what then comes out.
I also had the joint pains but maybe not as bad as some, though there were days I could barely walk. I found that a small amount of prednisone, like 5mg., controlled that quite well and even prescribed myself that before I knew anything about Wegeners.
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Thanks Anne. Funny when I do the rinse I don't see a lot coming out. I will make do with 2 a day whilst here but at home I will try doing a few at once and see. For me the worst is the stuff runs down into my lungs when I am lying down and then I have coughing fits which wake me up. Anyway it does seem to be lessening. As to self prescribing. This doctor is very adamant i am to follow his advise exactly. I don't think he appreciated being told by the Gastroenterologist that I felt I needed more Prednisolone. Anyway I got it which is the main thing :) Inge.