Update on Ingemlb

[ingemlb]

HI Alysia. I asked my Rheumatologist about the fever and he said it was all part of the Wegener's. Probably you are right. It's just there 'SMOLDERING" away and only being kept under control right now by the higher doses of pred. Because it's interesting that the fever and night sweats also stopped as soon as the pain was reduced which was about 4 days after increasing the pred. Took a bit longer this time. Normally after 2 days of increasing I already start to feel better. But I had been ill all month so maybe that's why it took longer.

So in your case you know it's smouldering due to your symptoms? If the stats are ok. That's been what's confusing me. If the stats are ok can I assume it's all under control. Hence I was wracking my brain trying to figure out what the symptoms were due to and came up with the thought maybe it's the withdrawal from the pred but that doesn't seem to happen to most people here. So ... I am back to thinking I am just borderline keeping things under control with the 30 mg. I told my Rheumy that the month after I came home from hospital I felt great. I was on 40 mg of pred. Didn't like the fast putting on of weight or face blowing up and I had endless energy. In fact I was racing around the house and constantly bathed in sweat on the treadmill 3 times a day for a total of 30 to 40 minutes. And no pain at a all, no pain meds either. Then once we started to reduce the pred (because the blood tests results were so good) all the trouble started

My only concern all the time is if the disease is doing some damage in the background whilst it's smouldering away. Anway I decided yesterday to stop worrying and start getting more patient.

[annekat]

Inge, sounds like pred agrees with you in some ways, gives you lots of energy and kills your pain. It's a funny drug; there are times I've liked being on it and other times I really wanted to get off of it. Right now, at 15mg., it seems to keep me on an even keel. When I went down to 10mg. and then 7.5, I ended up with a little flare during the winter, and night sweats and feverish feelings were definitely some of the warning signs. Never a really high fever, but just higher than my normal, plus that sort of hot/cold feeling.

However, I'm wondering, are you still on MTX or another immunosuppressant along with the pred? Because that can make a difference in flaring, too, if you are on too low a dose or not at all. I looked back a little in this thread and saw no mention of it, but didn't see where you had quit it. Clearly, the pred is making a difference in your pain, but it controls inflammation and not the disease itself. The MTX is what would be preventing damage in the background from the disease smoldering away, as it suppresses the immune system's tendency to go haywire and attack specific tissues and organs. So adjusting the dose of the pred or the MTX or both might be done in a flare. The decision might depend on how much you are already on, how recently you'd tapered either of them, etc. So, just wondering and speculating.....

[Alysia]

HI Alysia. I asked my Rheumatologist about the fever and he said it was all part of the Wegener's. Probably you are right. It's just there 'SMOLDERING" away and only being kept under control right now by the higher doses of pred. Because it's interesting that the fever and night sweats also stopped as soon as the pain was reduced which was about 4 days after increasing the pred. Took a bit longer this time. Normally after 2 days of increasing I already start to feel better. But I had been ill all month so maybe that's why it took longer.

So in your case you know it's smouldering due to your symptoms? If the stats are ok. That's been what's confusing me. If the stats are ok can I assume it's all under control. Hence I was wracking my brain trying to figure out what the symptoms were due to and came up with the thought maybe it's the withdrawal from the pred but that doesn't seem to happen to most people here. So ... I am back to thinking I am just borderline keeping things under control with the 30 mg. I told my Rheumy that the month after I came home from hospital I felt great. I was on 40 mg of pred. Didn't like the fast putting on of weight or face blowing up and I had endless energy. In fact I was racing around the house and constantly bathed in sweat on the treadmill 3 times a day for a total of 30 to 40 minutes. And no pain at a all, no pain meds either. Then once we started to reduce the pred (because the blood tests results were so good) all the trouble started

My only concern all the time is if the disease is doing some damage in the background whilst it's smouldering away. Anway I decided yesterday to stop worrying and start getting more patient.

I am sorry to tell you, but yes, I had wg smoldering for years AND doing damage, while most of the labs were ok. not the c-anca and pr3 though, which were reliable indicators for wg activity in my case and became negative only after the rtx. I know when wg is smoldering according to the symptoms: joints pains, nose bleeds, coughing, terrible fatigue, ears pains, rash etc.

[ingemlb]

Thanks Anne and Alysia.

Anne I am on MTX 20 mg once a week and Bactrim DS 2x a day which are supposed to be controlling the Wegener's. The idea was to reduce the pred to see how much the others were protecting me but so far we are not doing too good with reducing the pred.

Alysia that's a bummer that the smouldering disease was doing damage I hope I can get stabilised before any damage occurs. The Rheumy has not redone the C-Anca he said it won't have changed much. Not sure about a pr3 I will ask him next time. I will also ask if any of the tests need to be repeated such as bone density and scans to check my liver and kidneys etc are ok and when I need to have the next gastroscopy etc.

Saw my new Endo today and I am very impressed with him. He is head of Endocrinology at one of our largest private hospitals here in Melbourne. i am amazed he was able to fit me in so quickly. He has a sense of humour too. Asked me why I sacked the other Endo so I said "no ...sadly he sacked me " lol.

Anyway he has changed me from Novamix to fast acting insulin which I will take 2x a day and will be much easier for me to adjust. He will help me via the phone the next few weeks (another amazing thing ... as they can't charge for phone consultations) and won't need to see me for 3 months. So I feel now I will be much more in control and can use diet as well to control the sugar. Of course it means giving up all the cakes that the hypos gave me a good excuse for eating. But.... maybe I can lose a bit of the weight I have put on.

Now waiting to see the Psychiatrist. Been a busy day

[annekat]

Well, if you are on 20mg. MTX, I wouldn't worry a lot about smouldering disease, since your stats look good. I guess it is still possible, though, for damage to occur as long as you aren't in remission and there is still disease activity. I have a lot of erosion of my sinus bones, the thin ones near the nasal cavity, which happened over a period of time and must have been progressing even after things had cleared up considerably in my lungs. The sinus damage seems to be the most insidious and not reversible. However, my saddle nose never got worse after it initially occurred. You are right, the pred is a good indicator of how the immunosuppressant is working, and I get you on that. i know some people eventually get off the immunosuppressant but still need to be on some pred, and I'm not sure how to explain that except that they are unable to taper all the way off because their adrenal glands will not kick in and take their job back.

[ingemlb]

Seeing this is my progress thread I better do an update before I forget everything

Yesterday was rather dramatic. First I went shopping (which was probably stupid on hindsight as we had already decided some time ago that 1 event per day was all I can manage) anyway needed a new kettle and for some reason I wanted to choose it myself. Never mind. We got it. Whilst paying for it I had a hypo. Grabbed some jelly beans then headed to a cafe for a cheese and ham croissant and a cup of hot chocolate. Eventually I stopped shaking and we drove home.
Got there in time for lunch which was a bowl of soup so I considered the croissant the first course.

I then spent time getting all my paperwork in order for the first visit with my new Endo. Then drove (30 minute drive) and parked the car nearby. I was very pleased with the visit. He seems like a very decent chap. Asked me first of all why i sacked my other Endo lol. I said "he sacked me" and we had a laugh about it . They know each other and he agreed with me that the other chap was a very nice fellow and I also told him how impressed I was with his care when he saw me nearly every day for 5 weeks in hospital earlier this year. This new one is head of Endocrinology at one of our large Private Hospitals (St. Vincents for those who know Melbourne). He obviously knows his stuff.

I came prepared with lots of information. Handover letter from the doctor who looked after me in hospital. A spreadsheet with my Blood Glucose readings over the last couple of months. A contact list with all the Medical Professionals I am seeing. A printout of all my current medications.

So he took a look and I mentioned I was confused why I am taking the Pred at lunchtime instead of in the morning. He said yes he had had discussions with the other Endo about this but didn't exactly come up with a reason. Anyway after looking at my results (and all the recent blood tests, urine tests, A1C test etc had already been sent to him by the Lab at my request) he said I can see what we need to do.

His suggestion was to scrap the Novamix (hip hip hurray) and to go to a Novarapid twice a day, as my only issues with "high" blood sugar are after I take the pred. So I will continue for now to take the pred with lunch then immediately after inject 8 units of the rapid stuff (keeping track of my Blood glucose of course) then before dinner when there is another sudden spike I take another 6 units. He told me to play around with this for a week and then call him to discuss how it goes.

I feel now much better in control. I can now also control things with what I eat and don't need to eat to compensate that insulin from the novamix that was constantly being released into my body So I am very happy. I am sure now I can cut out supper and 3am or early morning feeding which was annoying me no end as it interferes with sleeping and definitely interferes with weight loss!!!

Also I can reduce the carbs I am eating. If the Blood Glucose is too low I just inject less insulin We decided for now to stick to lunchtime pred just so I can compare against my former blood glucose levels and not to make too many changes all at once.

Well at least it all sounds perfect to me.

So we then had a 3 hour weight for the next appointment with my Psychiatrist. We decided to park at the local hospital and sit in the cafeteria where it was comfortable. I had my kindle, my laptop my phone so plenty to do.

Shortly before the appointment with the psychiatrist I started having trouble breathing. Tightness in chest. But I didn't take too much notice just found myself doing a lot of heavy breathing. The Psychiatrist picked up on it too and I said it' just part and parcel of the condition. However on retrospect it shouldn't be as my lungs are apparently totally perfect. We decided that since the Pred has gone up again I will stick with the Melatonin for a while to get some good sleep.

We drove home. By now I was TOTALLY wrecked as in tired. Around 8pm I looked for my night time tablets and to my total horror I found the container with my lunchtime tablets still sitting in my medication drawer. I couldn't believe that I skipped the dose. Especially as it contained the 30 mg of pred which was now 8 hours overdue!!!

So I picked myself up off the floor (not quite literally) and sat here staring into space trying to figure out what now. Decided to catch the Aussies and Kiwis on the FB forum before they all went to bed and put out an SOS call for help to ask what I should do.

I was told by all the kind folk to take the pred ASAP and expect a rough night as far as sleeping went. Well as it turned out I was so exhausted and still grabbed for the Melatonin and Valium so in the end I did go to sleep but kept waking up.. No worries re hypos lol sugar was nice and high!!!

So this morning I am over all the shock. The breathing back to normal which makes me think it was related to the missed pred dose somehow but I will get a referral back to the Respiratory specialist just to be sure there is nothing "smouldering" in the lungs.

I also have developed some weird blotches on my tongue and the tongue is quite sore. Will see my GP on Friday to check it all out.

Sorry for the long post

[ingemlb]

Been a few days so time for an update. I am a HAPPY CHAPPY on 30 mg of Pred. Managed to dump the Tramadol and today first day totally without pain meds and NO PAIN. Still battling a lot of fatigue. For instance yesterday I woke up the usual early time of 5am which seems to be the clearest in the head time for me. I usually wake up around 4 but toss and turn until 5 then feel sorry for my husband and get up. I have probably 2 to 3 hours feeling quite good. Manage to eat breakfast then from one minute to the next I am fast asleep. Yesterday hubby found me asleep in my armchair with the computer still running. He helped me into bed at 9am and I slept like a rock until 1pm when he had a lot of trouble waking me up and getting me out of the bed. Once out I managed to stay reasonably alert the afternoon but tired again in the evening. Funny thing is then when I go to bed ... I am wide awake so have been turning to the Melatonin to actually get to sleep.

New problem set in. I seem to have developed a nasty coating of thrush on my tongue so am taking Mycostatin drops which you swish around in your mouth. Chemist said I "could" swallow it. The instructions say swallow after swishing for a while. But the "I could swallow" confused me. If I "could swallow" does that mean "I will not swallow" would be better? I rather not push anything new into my stomach if it can be helped. So I have been spitting it out. Will see if it still works.

I saw my GP on Friday and mentioned my awfully loud breathing and that I would like to go back to the Respiratory Specialist. He said let me listen to your chest. I said the Rheumy already did and said it sounded fine. He listened and said :No not fine. So I have a referral to the Respiratory Specialist in a couple of weeks. I also got a referral back to the Gastroenterologist at the same time as i am having pain in the gut and stomach and these ulcers used to be silent so the pain is new since the treatment for Wegener's. Probably the pred.

Today again I fell asleep after 9am and got up just in time for lunch.

I have documented my journey on novarapid in a new thread in this forum called Steroid Induced Diabetes Management.

Celebrating my pain free status a bit early. Just had a stomach spasm hit me. My mouth was madly swishing the Mycostatin. Maybe my stomach was worried I would shoot it down there Can't put anything into my mouth for 30 minutes so I hope it doesn't get too severe

I will stay one more week on 30 mg of Pred then drop by 2.5 and see what happens.

[annekat]

Glad you are feeling better and pain free, despite some complications. When I used Mycostatin, or something similar, I swished and spat. I don't remember if anyone or the directions said I could swallow it. I don't know what the reason would be to swallow it, but then, I don't know much about it. But in any case, it still worked when I spat it out after swishing; the thrush went away after a few days of that. Another thing that helps with thrush is yogurt, kefir, or probiotics. Is the thrush from taking antibiotics or is there some other cause, or do you know?

[ingemlb]

thanks Anne. I feel better now spitting it out

the GP thinks the thrush is from a combination of the meds I am taking and also the diabetes probably too high sugar over the last few months. The only antibiotic I have been on for ages is Bactrim DS and not sure that causes thrush. Anyway if it goes away I won't worry if it doesn't will have to dig deeper

The stomach spasm went away by itself this time!! But I just finished getting dinner on and realised another reason i am pain-free is because I haven't been doing anything. Was very hard to get the dinner done so not out of the woods yet.

[ingemlb]

Well I just looked it up. Maybe not thrush at all. Here are some potential side effects from Bactrim DS:

• redness, swelling, or soreness of the tongue
• sores, ulcers, or white spots on the lips or in the mouth

Luckily no ulcers but the tongue is quite sore. There are red blotches in the middle of the tongue surrounded by whiteness which I guess looks like the thrush. I know I had oral thrush years ago from another nasty antibiotic and that was horrible. This time it's only a bit sore and unpleasant.