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Thread: Update on Ingemlb

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    Post Update on 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.
    Last edited by ingemlb; 03-27-2014 at 09:34 AM.
    "Slow and Steady wins the Race"
    All the best, Inge

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    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
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    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
    Last edited by ingemlb; 07-06-2014 at 03:12 PM.
    "Slow and Steady wins the Race"
    All the best, Inge

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    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.
    "Slow and Steady wins the Race"
    All the best, Inge

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    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 ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    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
    "Slow and Steady wins the Race"
    All the best, Inge

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    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
    "Slow and Steady wins the Race"
    All the best, Inge

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    That all sounds like great news, Inge, except for the pain around your knee. But it's great that your sinuses are in such good shape, as that is one of the things many of us struggle with indefinitely. The suggestion about adding a little baby oil to the sinus rinse is interesting. I wonder if anyone else does that or what others think about it. I have some mineral oil on hand and wonder if that would work about the same. Let us know if you try it and what you think.
    Anne, dx'ed April 2011

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    Thanks Anne yes I was on cloud 9 after the 2 really great reports, Ophthalmologist and ENT . I was too exhausted yesterday after our outing to test out the rinse so will have to try that later.

    However the cloud 9 bubble burst. The knee getting more excruciating so I am on regular Panadol Osteo (means 1300 mg Paracetemol 8 hourly) then from yesterday evening (started maybe 10 hours ago) each time I visit the bathroom to void Urine I find myself in excruciating pain in what I have to now admit is the right kidney area. First I thought it was positionally triggered. I would finish my business reach for the paper and the pain was unbearable couldn't move and thought I was stuck on the toilet. Then in a minute or so it would go. I could get up again and it would sort of fleetingly flare up on moving about. Second time it happened a couple of hours later I was getting ready for bed. This time I took 2 Tramadol to calm it down so I could sleep. IT's now around 5am and I had to visit the bathroom again and despite the tramadol the same experience.

    So did my urine testing procedure but the results don't look alarmingly different in fact I will post them below if I can. But now I am trying to figure out what to do. I have an appointment with my GP tomorrow afternoon (make that 4pm on a Friday which sort of mean any referrals to anyone are going to be an issue being so close to weekend) I can't get in to see him today as he is not there on a Thursday. I could try ringing the Rheumy and see if he gets back to me or I could simply head to the ER and let them do a triage and decide if it's serious enough to warrant immediate investigation. Bit zonked out on the tramadol so am more confused than usual.

    If I go to the ER closest to us (public one not private this time) my Rheumy is in charge of a Ward there and they apparently have a Wegener's Clinic at that hospital. Have not tried it out because earlier this year I ended up in a private hospital (went to a private ER which I could do again but trying to save myself the 280 dollars non-refundable fee) My rheumy is connected to both so either way they would call him. As I am on Bactrim DS as well as the pred and MTX I could be having an infection that is not showing up the usual way? Or it could be a flare due to the reduction in Pred (a week ago was reduced from 40 to 30mg) but the last flare behaved differently. My joint pains are now only in the knee not in other joints and this what I think Kidney pain (which started about a week ago but was very mild and infrequent until yesterday) is totally new. Never had this before.

    I also noticed swelling in left leg which is one area that I do get swelling from time to time but I noticed yesterday the volume of urine was no where near as much as the volume of drinking went up by. We met my sister for lunch prior to the ENT appointment and I drank a truck load of water and diet soft drinks. I was expecting to have to run to the loo but didn't need to go until I got home later in the day. That was also unusual.

    so ... sitting here a tad unsure of the best approach.

    URINE TEST STRIP RESULTS ( LAST COLUMN IS TODAY)
    Last edited by ingemlb; 04-03-2014 at 05:20 AM.
    "Slow and Steady wins the Race"
    All the best, Inge

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    hm having trouble posting the Urine Test strip results. trying again

    Marker Description NORMAL 7PM 5/3 6am 7/3 10pm 15/3 6.30pm 24/3 10pm 29/3 5am 3/4
    SG specific Gravity 1.000 1.025 1.02 1.01 1.075 1.015 1.010
    pH Acid/Alkaline 4.5-8 6.5 6.5 8.0 5.0 6.5 7.0
    LEU LEUKOCYTES NEG CA 75 ca 15 ca .15 neg ca 75 ca 75
    ERY/HB BLOOD / HEMOGLOBIN NEG CA 50 ca 250 ca 250 ca 50 ca 50 ca 25
    NIT NITRITE NEG NEG neg neg neg neg +
    KET KETONE NEG 15 5 (0.5) 5 (0.5) 5 (0.5) 5 (0.50 5.0
    BIL BILIRUBIN NEG + ++ + + + +
    UBG UROBILINOGEN NORM NORM normal NORM NORM NORMAL Norm
    PRO PROTEIN NEG 30 30 (0.3) 15 (0.15) 100 (1) 30 (0.3) 30 (0.3)
    GLU GLUCOSE NORM 100 normal 300 (17) 100 (515) > NORM JUST Norm
    Notes: Dr. McHenry did a urine Test on Friday 7th March only traces of blood were shown. No infection


    URINE TESTING STRIP RESULTS
    Last edited by ingemlb; 04-03-2014 at 05:28 AM.
    "Slow and Steady wins the Race"
    All the best, Inge

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