Update on Ingemlb

[ingemlb]

I thought I would start a thread here to keep a running update on my Wegener's journey. There is a detailed overview of how I was diagnosed and what symptoms I have had over the years in the New Member forum.

I was diagnosed on about 28th of January by the Rheumatologist in the hospital I was in for 5 weeks. He called on another Rheumatologist who confirmed the diagnosis. Mostly it was blood markers and tests that led to the diagnosis as all biopsies done (tongue, sinus, stomach, lungs) turned out to be "non-specific" inflammation and not granulomas to be found. To quickly get the Vasculitis (severe joint inflammation) under control I was put on 30mg Prednisolone and that started having an effect immediately. This was whilst tests were still under way to determine best way to treat. I was then dropped to 20mg Pred and put on 10mg of Methotrexate once a week. Immediately the joint pains returned. Pred increased to 25 with no change then increased to 40mg and the pains all settled again.
I was discharged from hospital on 25th of February on 40 mg Pred and 10 Mg MTX and a lot of pain meds. I was by now also on Insulin as the pred had made me diabetic. My symptoms had been: inflammation in joints throughout the body. Massive ulcer on tongue. Red and inflamed eyes. Gastric ulcers. IBD inflammation in the bowels. Bad productive cough also coughing up lots of blood. Patchy Peripheral Neuropathy in both feet. Very bad Sinus inflammation. As lungs seemed good the thoughts are that the phlegm in the airways was from post nasal drip.
The tongue ulcer took nearly 6 weeks to heal. I had not joint pain on leaving hospital. Eyes very soon went back to normal and apart from using Gel each night I have not had any further eye inflammation. Have not coughed up any more blood as I am doing regular sinus rinses since coming home. Still getting rather scabby looking stuff coming out of the nose.
For the last few weeks have had some mild pain behind right knee but knee does not look inflamed as it had on admission to Hospital.
I have managed to wean off all pain meds since coming home. I wanted to be free of them before seeing my Rheumy for my first checkup so that we could figure out if it was safe to start withdrawing from the Pred.
I saw the Rheumy yesterday and he has decreased the Pred from 40 to 30mg and increased the MTX from 10 to 15 mg. As the sinus' aren't budging he also put me on Bactrim DS which caused a fair amount of concern in the Australian Wegener's FB forum. I am still researching. I see my ENT specialist next week and will see what he has to say about the Bactrim DS.
Blood tests are apparently improving. Anca tests were not redone as my Rheumy says they don't change rapidly so he will do them down the track.
Apart from the slight pain behind the knee most of my issues are to do with the PRED. Gaining a lot of weight in my face despite losing weight overall. I still have neuro symptoms and will be seeing the Psychiatrist again in 2 weeks. I have unsteadiness or almost dizzy spells. My sinus as mentioned above are a big issue. I get a lot of gastric spasm and some bowel pains. I make sure I take all medication on a full stomach.
I came home severely constipated and have managed to reverse that situation.
After reading a book recommended on this forum called "Coping with Prednisolone" I have made the following changes to my diet:
1. reduce Salt.
2. Was already avoiding sugar.
3. Was already avoiding white starchy carbs. In fact I have given up grains for now.
4. Was already exercising daily on a treadmill.

So now we will see if the MTX is taking over from the Pred in controlling the Symptoms. Would be ecstatic if I can dump the Pred altogether.

Today my sinus rinse machine arrived. I am hoping that works better than the bottles I was using. Thank you for those on this forum who recommended it. Managed to get one 2nd hand on ebay.

So it's wait and see time. Will update here if issues arise so that I have one place to track my progress.

[mishb]

I love it when members go from seriously ill to showing signs of improvement and reducing medication

Inge, you are doing awesome. I hope for bigger and better for you in the next few months

[ingemlb]

I seem to have created a lot of posts with specific questions on my various conditions. Going to paste links here so that I can find them again more quickly

1. Red Red Eyes - update on eye inflammation and corneal ulcers.
2. Wegener's Digestic Tract Involvement
3. Lung involvement
4. Neuropathy
5. Lightheaded not dizzy
6. Tongue / Mouth Ulcers
7. All things kidney and Urine
8. Is she always this racy ?? (neurological issues due to Prednisolone)
9. The kilo's piling up what to do?
10. Strange back ache and behind the knee pain.
11. Brown stains between teeth
12. Co-infections
13. Constipation
14. Sinus Issues
15. exercise
16. Nasal discharge
17. Severe Backache
18. Steroid Induced Diabetes Management

[ingemlb]

Ok time for an update.

MEDICAL APPOINTMENTS:
1. RHEUMY happy with progress and blood tests results. Reduced Pred to 30 (from 40) increased MTX to 15 (from 10) and added Bactrim DS into the mix.
2. Ophthalmologist happy with state of eyes. No damage. Currently no inflammation. He will monitor 9 monthly in case of pred complications or flareups.

CURRENT ISSUES
1. Staining between the teeth. Made an appointment with dentist for early April.
2. Still some yellow discharge from Sinus but less crusty scabs. New Sinus Rinse machine arrived and using it every day. Getting the hang of it. Also I
think the Bactrim is working as there seems to be an improvement from within 2 days of starting it. Seeing ENT specialist on Wednesday.
3. Pain behind knee and pain in back just above waste on right side. Seeing GP (PCG) on Friday to discuss. Rheumatologist wasn't concerned as it
doesn't look inflamed. However someone pointed out to test for blood clots and someone else shared how Wegener's destroyed their knee cartilage
and also the Meniscus.
4. Face still round and puffy from pred. Despite diet. Weight has been stable ... not losing any
5. Seem to switch from excessive energy to total fatigue. Guess I overdo it when the energy hits me. Most likely artificial energy due to Pred.
6. Stomach and bowels have behaved for several days.
7. Anxiety still an issue. Had to take valium last night just to calm down my mind. No issues I could think of but couldn't stop thinking regardless!
8. Constipation much improved. But still not completely normal.
9. Dizzyness more of an unsteadiness. Comes and goes.

Well that's it in a nutshell.

[Alysia]

Hi Inge,
WOW, what lists ! I admire your "order" and I am sorry for the too many issues.
at least it seems that things ARE getting better, are they ?

[ingemlb]

Hi Alysia, my issues all seem rather minor when I compare with others. And yes... things are improving. The remaining back and knee pain are not strong enough to take pain killers just want to figure out where they are coming from to rule out any flare building up as I am on a mission to reduce the pred.

The sinus issues are so much better since starting the bactrim and regular rinsing. Only seeing the ENT to bring him up to speed re the Wegener's and work out how regularly he should monitor progress. considering how nasty this Wegener's can get towards the sinuses I figure being ultra cautious is the best approach.

I am only organised because otherwise I forget everything

[ingemlb]

Just on my way back from seeing the ENT specialist. He was more than happy with my status. It is the first visit since the Wegener's diagnosis. He told me he had several Wegener's patients and I was by far in the best condition and reckons because I caught it early I may never get as bad as some of the others. He also said that it was sure good we did the sinus surgery last October before the diagnosis as he wouldn't have been game to do it afterwards. So that means I am benefiting greatly from the cleanup he did and I certainly breathe better and also no more sinus headaches.

His advice was to keep rinsing daily but add some baby oil to the saline solution as that will help break up the biofilm? He also said I would probably need to stay on intermittent antibiotics. He is happy about the Bactrim, said it is a great drug.

Ears are very good.Larynx very good and Sinuses look good despite the continuing discharge. However that too has improved a lot since I started on the Bactrim. He says that I can expect to have ongoing sinus issues as it's part and parcel of Wegener's. Doesn't need to see me more than once a year unless things get bad I guess.

So ... feeling very good. Both eyes, ears, throat and to some degree the sinuses are in very good shape

Unfortunatley the pain behind the knee and the pain in the side/back (middle) has become more intense and I am back on pain meds. I see my GP on Friday but booked in to see my Orthopeadic surgeon next Wednesday (need the GP to do a referral) just to rule out anything other than Wegener's that could be causing the issues. I do hope it's not heading to a flair. Was pretty bad last night so started taking the Panadol Osteo again last night (1300 mg paracetemol 8 hourly) so I could get through today. Also just before leaving home had another stomach spasm. Could have been due to taking the pain meds. Anyway had to swallow some buscopan and valium to calm it down. Now the eyes are droopy ... having trouble keeping them open

[Lilly]

Hi Inge,( I just read your post from 3-26-14 and wrote this, then read your updates.) Your story was very informative to me, thank you so much for sharing! You are really doing everything you can to take control of this disease and do all the right things! Ive used a sinus machine. It did work well to get those crusties out! Mine did anyway. And getting off your pain meds is good, then you know whats going on, and things are not masked my the meds. I wish I was as diligent as you are when I was first diagnosed. I was newly married and just wanted to get back to my "normal self"! I did what the dr said, but I didn't let pain stop me, if joints hurt, I just asked the Dr, if I used them anyway would it damage them? He said "no", so my joint pain was ignored and I exercised, jet ski'd, hiked, played, etc. I didn't want anyone to know I was sick. Anyway, I hope you can dump the pred. Methotrexate never helped me, so I have had to stay on Pred. for all these years, but LOW dose, 5mg. If I flare, it goes up a bit, I have a Rituxan infusion, and then it goes back down to 5mg. If I go off, I go into a flare. But Ive been on BactrimDS for 20 years. I wonder why doctors (especially in Australia, as I have seen on this site, but also in other places other than the U.S.) have question about the Bactrim DS. Is it a reaction some people have? Is it bad to be on it for years? My doctors made it seem like it does not do any harm, they tested it on Wegeners Pts. and found it helps keeps your lungs from getting bacterial infections, so after discussing it w/specialists, its something they started right when I was diagnosed, and I have been on it ever since. Some people on the site have had allergic or other reactions to the med itself. But I have not yet been allergic to any med. I am lucky, some drs say either a person tends to have some allergic reactions to many things, or none at all. You eat really well. And exercise, I started eating just like you 2 months ago, no sugar, no breads, and I went from 160.lbs to 140lbs. Im pushing for 10 more lbs down, but not eathing all that cheap fast food has totally made ALL my joint pains from age, hip aches, knee pain, etc. ALL are GONE on this way of eating! So Im sticking to it. Its healthy! I am so glad to have met you on here and although I am not able to look at the site every day,(I work part time even though on disability. I can work a certain amt of hrs and stay on disability. I have to work to make ends meet, my husb left me after 20 yrs and I gotta make it somehow! But I love my job. After 20 yrs of marriage, living alone is lonely! But yall make it better! I just get really tired and fall asleep right after work! LOL) I never go a week without getting on here. The people on here are so great! So supportive! I learn so much. I have changed a lot since I have joined. Just taking better care of myself and realizing Im not alone. Im looking forward to following your progress. If you find out the reluctance of the Bactrm DS by the doctors, I would love to know. Even thought Im doing good on it, Ive just heard it too many times and am interested. So if you find out, let me know! :-) Take care!

[ingemlb]

If you find out the reluctance of the Bactrm DS by the doctors, I would love to know. Even thought Im doing good on it, Ive just heard it too many times and am interested. So if you find out, let me know! :-) Take care!

Hi Lilly. It's not my doctors who are reluctant re the bactrim ds and mtx mix. It is the doctors being seen by some of the other Australian members and I read on the web that Canada for instance has banned using them together. However research I have studied up was focusing only on stats where people taking both reported problems making it difficult to see the percentage of those taking both who are not having issues. I had taken bactrim before without problems and so I am hoping I am one of those not affected. I also found out that it's a common drug prescribed for UTI's and as those are a concern for me recently I am glad to be on the bactrim. I wasn't convinced the antibiotics I was given at the hospital got rid of the UTI. I had my first one early November. Actually only had symptoms for a few hours but took 2 courses of antibiotics was then told to wait a month and be retested. Again absolutely no symptoms but tests showed after a month without antibiotics the UTI had returned. So went on 2more courses of antibiotics. But as I am now also diabetic (thanks to the pred) I don't believe the UTI bugs are totally gone so am happy to stay on longer term bactrim. On top of that it is definitely easing the sinus issue and as I have a long history of coughs, bronchitis, pleurisy, pneumonia and bronchial obstructions it's even better for me to stay on it for now.
I am glad you found my posts helpful. I sure learn a lot from this forum. Can't figure out why so many doctors get nervous about belonging to online forums. You would think when dealing with a rare disease they would welcome any help available. Must be an academic cultural mindset thing! Anyway I am sticking with the forum. It has calmed me down a great deal and if sharing my progress can help others even better still

[jvilner]

I'm trying to understand and pardon me for my ignorance. But the fatigue that everyone speaks of. Is it from the meds? I picture it like someone after chemotherapy treatment for cancer. Is it that similar? I get tired from just trying to beat WG on a daily basis but for me it's more of a mental tired then a physical one.