Confused

[Deanne Hull]

Hi Everyone, haven't been on for ages, I hope everyone is doing well. Can anyone help with some advice, In September 2010 I appeared to be in remission for about 6 weeks and then all of a sudden I had a spike in my markers and have had difficulty in getting them down. I have had an increase of meds ( steriods and cyclophosphmide ) and that seem to make wg go down quite a lot so we decreased the steriods slowly and now in the last 6 weeks the markers are creeping up again. Now my liver enzymes have increased, so we are caught in a cunumdrum, can't decrease the cyclo to help the liver as the wg is active. I have had no other symptoms except my eye which i have pred drops for. I don't feel sick. I am still active in my life. I am seeing a rheumatologist at the moment and he is indicating that I should see a immunologist as well. I

Does anybody think that this relapses could be could be enviromental or just the nature of the beast?

Bit over it really, sick of the weight gain etc. Just want to look like myself again. And it is making me a little depressed and teary....sorry!!!

[Jack]

If ctx is not working for you, perhaps you need to try Rituxan, but this would be a decision for a Wegener's specialist to make and it does not sound like you have one. Are you in a position to visit a Vasculitis specialist?

[gwenllian111]

Hi

Sorry to hear you're having such a hard time atm. I hate pred with a passion, I really do, and I can sympathise with you. Ritixan sounds like a good possibility.

My Rheumy always tells me he's more worried about my symptoms, rather than blood markers. Mine don't always correlate with how i'm actually feeling... I was flaring up for over 8 years with a flare up/acute tracheal stenosis, and my ESR and CRP were only about 10 - 15!!!

Hope you can decrease your pred soon, I really do.

Gwen xx

[JanW]

I would ask specifically what markers you are talking about. If your doc is concerned that your ANCA and P3 remain high, that is not a big concern. Mine are both very high (to the point the doc doesn't even test for them every time because he is convinced that they are going to stay high), but my CRP and ESR are in the normal range -- very important.

[Chris G]

I agree with the others. The markers are not always as important as how you are feeling. Also ctx sounds a little like overkill to me, considering you weren't feeling poorly, and only have eye symptoms. Or are the eye symptoms severe?

[Deanne Hull]

Everything is quite fine, all my tests are normal, I still have a few probs with my feet with plantular fascitis, that is taking is time and it hasn't helped that I fell over two week ago falling in a pot hole while making sure a 4 yo didn't run through a carpark by holding his hand. thank god he is sturdy little boy as i took him with me falling on the ground. My eye still has redness on the side and hurts
from time to time but my eye specialist said this is likely to happen with decrease of pred and i use pred drops as well. And it should settle down. This wg is so weird.
Thanks for your replies, i really should not complain there are worse off people than me but some days are crap!

[delorisdoe]

This wg is so weird.
Thanks for your replies, i really should not complain there are worse off people than me but some days are crap!

This is a complain friendly zone.

[pberggren1]

Dianne, have you tried soaking your feet in warm water with epsom salts? It may help.

[Jack]

i really should not complain there are worse off people than me but some days are crap!

Just because other people may be worse does not take away the pain or make your own situation any better so you are perfectly entitled to feel pissed off. You are here because everyone else has some idea about how you feel, not to be judged as to whether you are sick enough.

[jola57]

Deanne, I also flared 3 weeks after being taken off cyclophospamide and so I was put back on cyclo for 1.5 years. My markers were good and I was then put on methotrexate. I have been on it for 2 years and when my liver enzymes are high I lower mtx, I am on 7.5mg. All markers are good except c-ANCA, but then as my rheumy says: we are not treating your anca. So keep your spirits up, all will be well.