Update on Ingemlb

[ingemlb]

Anne in some ways I am very lucky in that my heart, liver, kidney and lungs seem to be unaffected by Wegener's and in very good condition. My eyes despite having had recurring ulcers and inflammation since 2009 are undamaged and have been clear and white since shortly after leaving hospital. My sinus operation in 2013 was deemed a success and compared with what some are going through here my sinus issues are minor. I have had years of post nasal drips and nasty cough and only late last year found out the two were related and now since the Wegener's diagnosis it has been confirmed that despite many episodes of pneumonia, pleurisy, chronic bronchitis and bronchial obstructions over the years going back to 2002, my lungs are in very good shape! Even some fibrosis seems to have healed. At one stage I was diagnosed with fatty liver but that is also gone.

So that leaves the digestive issues which have been plaguing me for years. Bowel problems go back to the early 90's with initially frequent obstructions supposedly caused by adhesions which were caused by massive endometriosis and multiple abdominal surgeries (bowel resection accidentally caused by adhesion removal, gall bladder removal, 2 burst ovarian cysts requiring separate removal of the ovaries in my mid 30s , appendix removal and a prolapse of the bladder repair job) then once the adhesions had mostly been dealt with it was assumed IBS was causing the frequent blockages. Then from 2006 onwards I have been having regular colonoscopies to remove polyps and there they discovered an inflamed ileum which was thought to be Crohn's (IBD) and subsequently an accidental gastroscopy (LOL the clinic accidentally booked me in for both a gastroscopy and colonoscopy and since I had been having a lot of digestive issues I told them they may as well go take a look) they found bleeding stomach ulcers and barrette's oesophagus. I had had years of indigestion, reflux and heartburn which I never had investigated as there were too many other things cropping up. Anyway now it's believed that all these issues are Wegener's related. I have not had any major bowel issues since starting the treatment. My stomach seems to be settling. The mouth ulcer is healed. The eyes are perfect and the sinus is much better since starting the bactrim. although the last 2 weeks there has been a bit of bleeding which I guess is part of the flare. So I tend to believe the Gastroenterologist at the hospital who said I didn't have Crohn's. It's all due to Wegener's.

But they feel confident that as my vital organs are fine they didn't have to do such an aggressive treatment straight off and are trying out this more gentle approach. They were hoping to keep me only on MTX eventually and get rid of the PRed altogether. We'll see I guess.

[annekat]

My lungs were the only vital organ affected so far, and those cleared up fast with WG treatment and are in good shape now. So, I'm lucky too, in that respect. All your issues with the bowel and abdominal problems sound really miserable, and I feel lucky to have none of that.

Bactrim DS is used primarily in WG patients to prevent certain lung infections we are susceptible while immunosuppressed, and I take it, too. If it is helping your sinuses, that is great. Hopefully you haven't incurred a lot of sinus damage yet, compared to some of us, and they will respond better to treatment and heal more fully. And maybe the good sinus condition is why you don't need as heavy a dose of meds.

I don't know how they handle the gastrointestinal stuff or how effective our meds are with that, or whether larger doses would help. I can only think of Alysia right now who also has those issues and it doesn't seem like the MTX, or anything, really, has done much for them. Maybe she can correct me if I'm wrong and perhaps the RTX has helped there. So many variations, so hard to get a handle on them all.

[ingemlb]

So many variations, so hard to get a handle on them all.

Amen to that! But then we know the immune system manages the entire body so any disease that impacts immunity is likely to effect many areas. However Wegener's seems to lead the pack!!!

In my case I can't of course tell what is being helped by the Pred and what is being helped by the MTX as yet. Until I get to reducing the Pred successfully I have to assume that the Pred is doing most of the work. Apart from the win with the Sinus area that seemed to improve as soon as I started Bactrim. I am also glad to be on Bactrim due to the recurring UTI's and it appears Bactrim is one of the drugs commonly prescribed for UTI's. So I am covering both areas

[annekat]

I should think the MTX is helping quite a bit with the sinuses, too, even at 15mg. It seems to help people who have moderate sinus issues that are caught early. In my case, the sinus stuff had been going on way too long before my dx, and no meds could reverse the damage... however, my former sinus cavities have become filled and closed off with abnormal but harmless bone and tissue and should no longer be a problem, according to my ENT. A weird but somewhat fortunate development. The nasal cavity itself is looking ad functioning OK at present. Perhaps the Bactrim has helped me there, too.

[ingemlb]

I should clarify that I had sinus issues dating back to the early 90's. But causing constantly different symptoms. I only know on retrospect that I can blame the sinus for it all. First there was this rushing sound in the ears that drove me crazy and kept me awake. I had this for several years. Had my ears checked and was told it was somehow genetic and the way my body was built, blood vessel locations etc. I found this hard to swallow as it came out of the blue and I figured if it was due to blood vessels in the wrong place (i.e. too close to the ear drums ... apparently I was hearing my own blood rushing through my head) surely it should have bugged me earlier in life Then I had very bad vertigo which ended up being the first time anyone pointed to the sinus as the culprit. The thing was I never had runny noses nor had I blocked noses and when i was told my sinus' were totally blocked near the ear drums I was extremely surprised. I was told then the best way would be sinus surgery however was also told that this would be very nasty and it would be simpler to put grommets into the ear drums. I also had a lot of issues with flying. Bad ear pain. Anyway the grommets fixed the problem only issue was they had to replaced every 10 months as they would grow out.
Next came post nasal drip. Next came the never ending cough. Then last year it got totally out of control with daily sinus headaches. When early in the year my sister had surgery and told me it was "a piece of cake" I decided to visit her ENT specialist and have my sinus finally thoroughly checked. He ordered a CAT scans and had a look inside with a scope. Told me they were very bad. Severely diseased is the term he used and needed urgent surgery. Said they were beyond steroids for help. So we did the operation late October. He removed all the diseased tissue, widened flaps and passages and removed a few polyps. So I was then waiting to experience major relief as reported by my sister earlier in the year only to be badly disappointed. Firstly the sinus' took weeks to stop bleeding. Instead of going home on the day of the surgery I spent 2 days in hospital mainly due to the excessive bleeding. At the time I was on a protocol that would not allow Adrenalin (to stop the bleeding) or Steroids so I was told it would all take much longer to heal and put up with the slow healing until after Christmas. By the time I was hospitalised with the Wegener's I had really bad scabby nasal discharges. It was all still running down the back of my throat via the post nasal drip and hence the coughing came back with a vengeance. Then they had to do a biopsy that set off the bleeding again. In hospital I spent one week coughing up copious amounts of first red then dark blood. Hence they did a Bronchoscopy (cat scan had shown lungs were healthy) and found nothing only "non-specific inflammation" and decided all the muck I was coughing up came from the sinus.
This is the state I was in until I started on the Bactrim. Things also started to improve once I got home and did regular sinus rinses. But the Bactrim made the biggest difference and since starting it I have hardly coughed. You have no idea how big a relief that is.... not to be coughing my heart out all day and night.

Well you keep reminding me of things. Good that I am writing it all out again. i may copy and paste all these into a word document for future reference. As one tends to forget issues once they are improved

[annekat]

Well, I do remember you mentioning previous sinus surgery and problems. So much to keep track of and remember. I had weird things going back to the early 2000's, too, like tinnitus and pressure I hadn't had before, but no problems with discharges, sinus infections, or ear issues until 2008, 2.5 years before dx. I guess you are assuming that all those issues going way back had something to do with Wegeners. I'm thinking the same, though mine weren't as dramatic or serious as yours all that time. It does seem very noteworthy to me that Bactrim has cleared up your sinuses so well, and so fast, as I haven't heard of that from anyone else. Most seem to give credit to diligent sinus rinsing for any improvement they have. Although I have a lot less post nasal drip these days, it is still getting down into my bronchii and causing a fair amount of coughing. Sometimes it's like a reflex and I can't stop even though there's hardly anything in there. It's gotten better though, lately.... hooray for that. I had occasional vertigo earlier on, but just lately some bad episodes, which may have been cleared up by ear wax removal. I hope that's all it was... it was a huge, hard chunk pressing against my already caved-in eardrum. ENT will still be investigating that. We have so many weird and varying issues... our bodies are so bizarre and each one has its own ways of being affected by WG and whatever else we have. It sure keeps us guessing and busy writing about it all.

[ingemlb]

Actually Anne it's all assumptions on my part. I increased the MTX at the same time as I started Bactrim and I also had been diligently doing rinses. So ... I may be giving praise to Bactrim on false premises. It just seemed to me that it was suddenly much better but maybe it would have happened anyway.

Also the fact that I am on steroids allowed the sinus areas to heal and so maybe I am finally feeling the full effect of the surgery I had last October. My ENT said I was lucky we did the surgery prior to the diagnosis as he wouldn't have touched me had he known I had Wegener's but he is very happy with the results so ... it's probably not as simple as giving all the credit to Bactrim

[annekat]

Well, it certainly didn't hurt, and may have helped as much as you think.... it's noteworthy that your sinuses were in good enough condition to heal the way they have, considering all they had been through. Bactrim has also been credited with keeping people in remission, when they get there, although I haven't heard a lot of explanation as to why. I would assume it's because it would tend to prevent infections, wherever they were, which might trigger another flare. And as for UTI's, I just recently learned about that when a pharmacist assumed that was what I was getting Bactrim for. Of course, she probably didn't have a clue about Wegener's and likely thought I was getting MTX and pred for RA. We aren't about to launch into a whole explanation of WG with just any pharmacist, are we?

[ingemlb]

Well today was a great day so I am going to simply repost what I posted on the Australian Wegener's FB group page to save typing it all again For those who have already read it you can skip the rest of the post
Saw my Rheumy today and it was a very GOOD visit!! And all my fears have been laid to rest (FOR NOW).
1. He can see me at the Austin. Just not at the Warringal across the road. He must have got mixed up when they rang him. So that means the quickest way to get hold of him is via the Austin which is very close to us and he also said if I ring him he can book me into the Epworth without going via their ER department and paying the 280.00
2. He is more than happy for my GP to call him any time and will write him a letter to introduce himself. So hopefully the two will get to know each other
3. Blood test results were very good. No sign of active inflammatory disease. However he did find a report of a scan that was done at the Epworth (some other bone scan I had not been aware of) which showed inflammation in the bones. He says it is very likely that this is what is causing the current pain.
4. He has prescribed Celebrex to help with the pain and inflammation. He said out of the NSAIDs it is the least aggressive as far as hurting stomach ulcers. Mind you the company doesn't state this they have very big warning signs re mentioning your stomach and bowel issues. Well he knows them and is still confident I can give this drug a try. But he has also given me a new script for Tramadol and said to continue with the Panadol Osteo/Tramadol combination as needed.
5. Urine test results also looking good.
6. He is increasing the MTX from 15 to 20 mg once a week which I had expected.
7. He suggested trying to go back on 40 mg Prednisolone for a week and see if that settles the pain. So I will try that then drop back to 30 and see if with the extra celebrex now I can slowly reduce the other pain meds.
He told me the fastest way to get hold of him was to ring the Austin. Which is why I went there in the first place. But he also said if I get admitted as a private patient he CAN see me there. So that solves all my problems And on top of that I could choose the Epworth without going via the ER so it gives me Options if the Austin happens to be fully booked.
8. As my BP is a bit at the upper limit he is putting me back on Olmesartan (40 mg once a day). I now understand it as the celebrex can make the BP worse so will start the Olmesartan. It's a drug i had been taking in very high doses for 7 years whilst on the Marshall Protocol. I would be very hesitant right now to take the high dose but low dose should not cause any issues. I am hoping in any case once this pain goes and I can get back to exercising my BP will settle again.
so ... I am a happy chappy. I did swallow a valium prior to going and Dennis and I said some prayers to ask for a good outcome. Apart from this nasty pain it still looks like things are improving and that Wegener's is fairly well under control.

[windchime]

Glad to hear things went to so well for you inge and that you got solutions to a few issues you were having. That's great. Continue to heal and get better.