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ingemlb
02-16-2014, 06:12 AM
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.

Dirty Don
02-16-2014, 09:00 AM
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.

ingemlb
02-16-2014, 09:49 AM
Thanks Don. What's AI? All the best. Inge.

Pete
02-16-2014, 09:52 AM
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!

ingemlb
02-16-2014, 09:57 AM
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.

pberggren1
02-16-2014, 10:00 AM
If you have a sinus infection then you will need something like Avelox to treat it.

ingemlb
02-16-2014, 10:05 AM
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

mishb
02-16-2014, 02:25 PM
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.

annekat
02-16-2014, 03:34 PM
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.

ingemlb
02-17-2014, 12:29 AM
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.

annekat
02-17-2014, 03:58 AM
Yeah, a lot of us, including me, have that annoying cough from stuff dripping down out of our sinuses and collecting in our bronchial tubes. It can cause difficult breathing, too. It gets better over time, but for me is worse in colder weather and toward evening. I no longer wake up from it as much, once I'm asleep it calms down, but I may have a bit to cough up upon arising.

I guess some people have more big blobs of stuff in their nasal cavities than others.... there have been threads on here about that. But coughing a lot from nasal drippage could be a sign there is more in there than you think, as the thinner mucus builds up to try to expel the blobs. One of our members uses a WaterPik with a special nasal attachment and recommends it highly.

I hear you on the self-prescribing. With my joint pains, I did it out of desperation because I hadn't been diagnosed with anything, had been tested negatively for RA, and didn't have time to go to a doc nor the faith that they'd help me, for some reason.... so I got some pred from an online Canadian pharmacy. Not recommended, but it worked out for me. Now that I have Wegs, there is no problem getting pred, and with the amount I'm taking, currently 7mg./day, there are no joint pains. I might expect them to return if I try to taper below 5mg., based on others' experience. And some still get them with higher doses of pred.

Three years into my Wegs career, my doc has given me permission to regulate my own taper of the pred and my current immunosuppressant, which is MTX. At your stage, you are probably wise not to self-prescribe, but you are the one who lives with this 24/7 and you do get a feeling for how the meds are affecting you, so I'm glad your doc allowed you more pred when you and the Gastroenterologist felt you needed it. Many, or most, docs are not very experienced in treating Wegs, and a lot of docs do have that attitude about you following their orders, despite a possible lack of experience with the disease. I have learned so much from this forum about these meds and how they are regulated by different docs in different people's situations. This does not make me qualified to self-prescribe, necessarily, but it sure helps me to know a heck of a lot more than I would without the forum, and to be able to make suggestions or drop hints to my doc, who is not very experienced with Wegs. He is a bit of an arrogant guy, but has actually backed down and let me do things my way on several occasions. He has also been proven wrong on more than one occasion. Docs are human, too.

Dirty Don
02-17-2014, 04:24 AM
Three years into my Wegs career

A career? Really? YOU are tooooooo funny Anne! mumble mumble...LOL!

Alysia
02-17-2014, 05:22 AM
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.


I am happy to tell that now, 3 months after my second rtx, I almost don't have "productions" from my nose.
I didn't do rinses. I couldn't bear it. I was just making warm showers and blowing patiently untill the stuff came out. sometimes I waited couple of days untill it came out.

Alysia
02-17-2014, 05:25 AM
A career? Really?

def :rolleyes1: being a weggie is full time job career :huh:

annekat
02-17-2014, 01:58 PM
def :rolleyes1: being a weggie is full time job career :huh: Thanks, Alysia, for the backup on that. Don, I guess I just didn't know what else to call it:unsure:.

I might add, to the issue of stuff in the sinuses, rinsing or not, getting the stuff out, that ENTs are equipped to go in there and lightly suction and pull the stuff out. Mine dives in there with no warning, and the first time he did it, I was like, what are you doing? I actually have only had it done maybe two or three times and he said I could come in every couple of months for it, but I haven't. There seems to be quite a bit less stuff in there than there used to be.

mishb
02-17-2014, 09:32 PM
The stuff in my sinuses is a lot drier now - I guess more crusty :blushing:

Initially it was very slimy and slug like, so I gather it is getting a little better........however on saying this, the drier crusts really clog the sinus up a lot harder and therefore a lot more resistant to budging. :unsure:

MikeG-2012
02-17-2014, 10:56 PM
I might add, to the issue of stuff in the sinuses, rinsing or not, getting the stuff out, that ENTs are equipped to go in there and lightly suction and pull the stuff out. Mine dives in there with no warning, and the first time he did it, I was like, what are you doing? I actually have only had it done maybe two or three times and he said I could come in every couple of months for it, but I haven't. There seems to be quite a bit less stuff in there than there used to be.

I go in about every two weeks to have mine cleaned out at the ENT. Coming off of a nasty flare, where the sinuses were the major issue, it is taking that many visits to keep the crusts down to a minimum. Even though my rinsing is aggressive, if I don't go every couple weeks, the crusts start to cause some restriction of airflow through my nose and sinuses and I'm miserable again. When he gets the big crusts out, it feels so good after the visit being able to BREATH again!