News of Jack

[marta]

Thanks guys, but it was a short lived mourning period. I get those very rarely and they last a short time. I actually think I've been quite lucky on the psychological/emotional side of things - considering the situation and pred and all. I do get them though and I had one. On the positive side of things, I got a glimpse of my reflection yesterday where it was a split second and I saw a reflection of the old, skinny cheeked Marta looking back. I know it sounds vain, but what it did do is give me glimpse of the possible reality ahead, feeling and looking 'normal'. I have this unrealistic fantasy that one day I'll wake up and everything will be back to normal - miraculously, overnight - but I know that it can get close to normal in a longer period of time. I just have to be patient.

Baby steps forward.

[vdub]

you can lose time waiting for it to kick in again

The decision to stay off the mtx was only a difference of 4 days from what I had to stay off for the knee operation, so I didn't figure it would be to big a deal.

One thing I am concerned about.... I have been feeling great with the exception of pretty nasty, almost constant headaches. IBU, aleve, etc doesn't seem to help much. Tylenol T3 with codiene does help, but seems to be getting less effective. Last night I took an oxycodone to kick the headache. Endo did a MENs test to check for a thyroid tumor (believe that's what it was checking), but it came back ok. The headaches feel like what I had prior to them finding the pituitary granuloma. Hope I'm not getting another. Brain surgery is no danged fun.....

But, otherwsie, things are great and I'm going to enjoy the moment!

[Psyborg]

What medications are you on Vdub? I had nasty headaches on CTX, I was attributing things to the WG that was actually the medication. Didn't realize it until I switched to MTX and the symptoms went away.

[vdub]

I was wondering if it wasn't a side effect from the drugs, too. Other than mtx, I'm on cortef, levothyroxin, desmopressin, plus a handful of common stuff like testosterone, B-12, folic acid, Vit D, celexa, and abmien. Desmopressin has no known side effects. Cortef and ambien are the only ones with headaches as a possible side effect.

I guess side effects could come and go, but if not, then I'd have to rule out a side effect as the headaches seemed to have just restarted last Novemeber after a 6 month period of no headaches.

[jola57]

Marta, for months after starting on high dose pred and filling out my moon face, I would not look at any mirror and when I did a complete stranger looked back. It took me over 3 years to accept what is and actually start to agoin enjoy having pictures taken with my kids and family. I even posted my the way i was album to remind myself of what I looked like. For me too now and again the new normal and new me su*%.
Geoff, I am petrified of falling back into illness after responding so well to the treatment. I am sorry you feel worse and hope it is just for a very short time

[Jack]

I've been having quite a few rough days recently so fell back on my last resort before going to bed and took an extra 10mg of pred.

Today I feel really good!
I wish I could use it as a long term solution, but the damn stuff is already killing me so the trade off just is not worth it. By the way, none of my problems seem to be Wegener's symptoms, so I'm pretty sure that I'm not flaring. I have an appointment this week so we'll see what they have to say. Probably less than I know already I expect unless my bloods show something.

I'm then off to my sister's house for next week while my wife and daughter go to Tenerife. Jaden will be coming with me. Not sure what she will think of that!

[Geoff]

Yes Jack, Pred is a bitter - sweet pill and no mistake. What sort of time frame before you notice it kicking in?

By the way, best of luck with Jaden next week. We had our sons cat stay with us over Christmas and then after a couple of days we went to stay with our daughter! The poor cat didnt know if it was coming or going and we had to dig her out from under the bed when it was time to 'go home'. Funnily enough, since she has been reunited with my son and his wife they have noticed an improvement in her scatty behaviour. Work that one out!

[Sangye]

Jack, I'm sorry you haven't been feeling well. Glad you've got an appt to sort it out. Nice to hear you're going to your sister's for a bit-- you always have a good time there.

[DEE]

Hi Jack glad you are feeling better today and you enjoy break with your sister

[LisaMarie]

Jack
Enjoy your Holiday and hopefully your little kitty will do well...glad your are feeling better
Hopw the ulgy WG dog is not rearing It's ulgy head
Have a great dayu