Talked too soon.

[melbourne andy]

evening all
well I thought I was on the right path and heading for remission on 25mg MTX and down to 7mg of pred :unsure::unsure:, then it happened and I started to flare, back to the night sweats, nausea and eye pain and general yuckiness, pred has gone back up to around 30mg :predrage:, MTX stayed the same and I am now on 1g of cellcept a day :mad1::mad1:, been on it about a week and I am hoping to start knocking the pred down in the next week or so.
have got to have blood tests every 2 weeks to keep an eye on things, hopefully things will start to improve as it is getting harder to make it through a day in work, the last thing I want to do is give up work but if things don't improve soon I may have to seriously consider it.
so fingers crossed for the next few weeks and some improvement,,,, pleassssseeeee.

[annekat]

Sorry to hear it, Andy. The same thing has happened to me in the past from going below 10mg. of pred. But I am only on 15mg. of MTX. Going back up to 30mg. of pred should help a lot, but it is a shame when we can't seem to escape this cycle. I will be thinking of you and hoping you will soon notice an improvement from the changes in meds.

[Birdie]

then it happened and I started to flare

When were you diagnosed? Is this your first setback?

If recently diagnosed and your first setback then perhaps you were too optimistic, expecting too much too soon (not that high hopes are a bad thing). Be patient and don't rush the treatment. Don't expect WG to go away since it's a long term management thingy you learn to live with.

Uhhhhm... like every time you get a minor pain you wonder and watch and contemplate... then most of time they go away. Nope, that wasn't my newest symptom pointing out another issue...

Gary

[drz]

We have often mention on these forums uneasiness about posting good news for fear it might wake up the Weg dog and lead to a big attack by the wicked granny. Another common analogy we often used is that Wegs is a roller coaster ride meaning things can rapidly change directions and often do. Yet, generally most of the time with proper treatment things tend to get better for most people, so be hopeful that things will improve, yet vigilant in case more corrective action is needed.

[Dirty Don]

Just a reminder that knocking down the pred is a goal, but not an immediate one. While pred has its side effects, it still is needed to knock the WG monster down, so the 'big' drugs have time to go into action. The tendency to want to get off pred too soon is prevalent on here, and that desire constantly & consistently knocks people around in their drive for remission. Go slow on the pred reduction; things tend to feel a bit better. Best to you.

[Jaha]

Andy,
I am sorry that you are flaring. My Doc told me from the beginning it was going to be baby steps and that everyone is different at the rates in which the achieve remission. In over 5 plus years I have had numerous flares and ups and downs with the preds. the bad part was that I let it effect me mentally. It has taken me all most 2 1/2 years to be able to lower under 10mgs, I'm now at 8mgs and crossing my fingers. I know the ups and downs are like a defeat, but just keep doing what they tell you, so that there is no more damage done. It may take a while but you will get better and stronger with all the ups and downs. All the best to you!

[vdub]

Same happened to me, Andy.... I was doing pretty well, but when I had my knee replaced a 6 wks ago, I had to go off the mtx and my rheumy wanted to see what would happen if I stayed off it. It didn't take long to find out.... joint pain came back and not even hydrocodone is taking the edge off. Other symptoms came back, too. Very distressing.... I have been put back on the mtx at 20mg level. Unfortunately, as we all know, it will take a few weeks to start working again.

I did have fun today, tho. I decided to run my old MG around the block. "Blocks" in this part of the west are kind of like blocks in parts of Oz -- it was a 70 mile run, top down, sunny and warm. I took a picture before heading back down into the valley. All the haze in the background is from the many forest fires in the area. Usually, we can see deep into the Hell's Canyon gorge, but not today.

[melbourne andy]

evening all
my apologies for not following through to everyone, but things have been a little rough of late, the scleritis kicked off again I had my cellcept increased to 2000mg a day and the pred was up to 70mg a day.
I have managed to get the pred down to 20mg any lower and I have major eye pain, my feet have now been affected with pain and numbing, this happened in the space of a couple of weeks, over the last couple of days it is doing the same to my left hand. had to go for a bone scan also.
spoke to the rheumy today and have been told I now have steroid induced osteioporisis, to this end my cellcept has been increased to 3000mg a day and because of the scleritis the pred has gone up to 25mg.
the rheumy is now looking into rituximab, but he thinks it is not covered by medicare (Australia), so any info on this would be a help, he has also told me if we can not reduce the pred dose by the end of the year he will be sending me to the Alfred hospital in Melbourne to see what they can do.
things are starting to get a little frustrating of late my blood count is low and my iron levels are even worse, will be going in for a transfusion in the next week, the only thing that seems to work is the pred but that is causing a lot of trouble, starting to get a little worried to be really honest about the future, still managing to stay in work, I am determined not to give up work only to find I hit remission and have no job.
hopefully thing will start to improve, I realise there is no quick fix but the pred is really having a bad effect on me and I have only been on it for 12 months, how the rest of you have managed it for longer I do not know.

[mishb]

Hey Andy, sorry to hear that things have got worse.

The Alfred is the best hospital and yes, you can get RTX. Many many Australian Weggies have received it.
The only problem with the Alfred is that the waiting times are fairly long at the moment, but once you are in, you can see many different specialists.
I see Rheumatology, ENT, Ophthalmology and previously, Oncology. They also have Renal clinics and Pulmonology, Immunology etc

The criteria for RTX used to be that you had to fail one or two of the other treatments first, but now people who are newly diagnosed are getting it as the first course of action.

It is not on the PBS and medicare don't cover it but it goes to the hospital board or pharmacy board (they have their own budgets) and it needs to get approved by them.
If you have private health insurance, I read someone say the other day that Medibank covers it.

Good luck and I hope things start improving quickly

[Birdie]

I am determined not to give up work only to find I hit remission and have no job.

Make your choice wisely. I worked, forced myself to work is more accurate, for three years after diagnosis. That choice may have been a bad one, or it may have been the right one, I'm still not certain which. I would have stopped working the day I was diagnosed if I'd had ANY chance of health care without the employer provided health insurance. I'm sure I would be in far better shape now if that had been possible.

[woz]

Hey Andy, I hope things improve fast, my reumy tried to get me onto RTX as I have a few issues, but its only available to newly diagnosed, or if I flare, and my reumy, and thoracic specialist apply for it,(hopefully) so I am told, you should qualify if you are flaring, but you will need the help of a few specialists to qualify, (hopefully). All the best, keep us informed on how you go, as you may be able to help others that have this problem in the land down under.

Regards Woz.....

[mishb]

Andy the crisis may be over

We heard the other day that Rituximab will be included on the PBS from November for Wegener's.
I'm not sure whether the same criteria applies to be able to receive it, but at least it wont eat away at the hospital's budget.

Fingers crossed that it is approved by the time you get your appointment at The Alfred

[vdub]

steroid induced osteioporisis
When I had my knee replaced, the surgeon said there was definitely signs of steroid damage. I think we are all susceptible to having some degree bone damage. Kind of a bummer, but goes with the territory....

[annekat]

When I had my knee replaced, the surgeon said there was definitely signs of steroid damage. I think we are all susceptible to having some degree bone damage. Kind of a bummer, but goes with the territory....
Time to try harder to get off the pred. The only knee replacements in my family have been in those related by marriage, not blood relatives. I hope I won't be the first. I've felt a few twinges in my knees lately, not that I run or play golf or do other things that might be hard on them. There is some osteopenia and osteoporosis in my family, and I dread to think what my bone density scan would look like right now. Time to get it checked, I guess.

[melbourne andy]

afternoon all.
it seems there may a be a change of plan, my rheumy has already referred me to the vasculitis clinic in the monash, just waiting for the appointment to come through, I have tried to reduce the pred from 25 down to 20 all was well for a couple of days then severe pain in the eyes and really bad nausea and crapiness.
have got the pred at 22.5 at the moment but the eyes are still playing up but it is bearable, the rheumy has mentioned that it may not be the wegs but withdrawl symptons from the pred, I am not so sure.
have also noticed grey areas on the white of one of my eyes, so I think another visit to the ophthalmologist is called for.

mishb - I will certainly mention this to my rheumy, It may even speed things up if you don't have to wait for a decision from the hospital.

woz - very nice looking mg, hope you manage to get a lot more enjoyment out of it.

[mishb]

Andy, Monash has just opened a Vasculitis clinic and I know of many patients (WG & RA) that received RTX there. You will be well looked after.

Do you live on that side of town?

[melbourne andy]

evening michelle
yes I do, frankston area, so not too much of a trek to get there, hopefully should not have to wait too long.

[Birdie]

I have tried to reduce the pred from 25 down to 20 all was well for a couple of days then severe pain in the eyes and really bad nausea and crapiness.have got the pred at 22.5 at the moment but the eyes are still playing up but it is bearable, the rheumy has mentioned that it may not be the wegs but withdrawl symptons from the pred, I am not so sure. have also noticed grey areas on the white of one of my eyes, so I think another visit to the ophthalmologist is called for.

Andy,

Prednisone destroyed my eyes in a couple of months at 80 mg, Ocular Hypertension and Glaucoma to begin with. Those two problems were treated mostly with eye drops. I routinely went blind for hours and as much as two days. I need glasses now and my vision is so unstable that I have three prescriptions to choose from, depending on condition at the moment. I constantly fight with pain and blurred vision.

With that experience in mind... reducing pred should almost immediately reduce your eye problems, not make it worse. I haven't had any pred related nausea but predcrapiness is expected. :)

[mishb]

evening michelle
yes I do, frankston area, so not too much of a trek to get there, hopefully should not have to wait too long.

I know a few people with WG from down that way.
You should come to our next Mornington Peninsula cuppa

I'm from the Knox area, so still that side of the City.

Monash is a great choice. I hope you get in quickly

[Jaha]

Melbourne Andy,

I hope you can get some relief soon for your eyes. This disease is so unpredictable and crappy. I'm wishing you all the best at the Monash Clinic.