Update on pberggren

[mishb]

My dear Phil,

It makes us sad to know that you are not well. However, I know that you wouldn't hesitate to tell someone on here exactly what could possibly be wrong with them. You would tell them to up their pred and get to their doctors straight away

I personally, think that you should be on pred again. I know you don't want to, but that is exactly what you would be telling others on here.
Don't make me put my "mother" voice on and come down there

Could it be possible that your new doctor is not entirely geared up for the likes of your WG......goodness, you have even had a paper written about you, because you are such a rare case. Can you admit that maybe she might have been wrong about the pred decrease??

I know you don't want to go back on to it but, as you keep telling everyone else, and as I will keep pointing out to you - it is not the end of the world, to take those little white tablets, especially if you say that everything else is looking good.
This joint pain, muscle pain, fatigue.................adrenals my darling boy, adrenals.

I hate the fact that I can't do anything to help you from here. Just know that we care about you and want you to feel better again.

Okay, I have had my say - please others chime in and let me know if I sound like I know what I'm talking about ..........or, if I just sound like a bossy boots to our dear friend

[Alysia]

Michelle, you sounds like a good and worried mother and we are so blessed to have you around, with your caring and wisdom.
now, sweety, phil, please listen to mom...

I also think that trying some pred can be helpful or at least, if it will not, can give more clues as to what is going on with you...

others around, I wonder what you think....

[annekat]

Pred makes sense to me. I don't remember how long you have been off it, or how quickly you did so. But it sounds scary to me having you on no pred feeling the way you do. I guess the subject will come up on Wednesday when you talk to your doc. If not pred, maybe some other form of steroid such as the hydrocortisone Sangye was and may still be taking? I don't remember the reason that Dr. Seo switched her to that, although she has told me more than once. I think you are in contact with Mother Sangye and maybe she can help you figure all this out. And listen to Michelle and Alysia, as well! It seems like you should at least have your adrenal function tested and take it from there.

[pberggren1]

How did I know you would chime in about the pred Michelle?....... The reason I doubt pred is an issue is that I have tapered off it without any issues at all this time and last fall and last summer. The fatigue and muscle stiffness and soreness I have now started before I went off pred this time. But I will ask the doc for sure.

[pberggren1]

I wont touch the pred until my doc says so. I know she only has a few cases of us Weggies but she has worked with the top docs before and consults with them on a weekly basis.

[RCOSSIO]

Phil...I know living in Canada is hard to avoid cold weather but it seems some warm humid air may help a long way...when you ever decide to visit South Florida/Miami, which has a lot of warm hot HUMID weather let me know.

[pberggren1]

Hey Richard..... we miss you. If I ever come down I'll be sure to let you know.

[pberggren1]

Saw doc yesterday. Most likely flaring. Will have at least one dose of RTX tomorrow. Depending on how I feel later I might get more doses. All the labs are good so nothing there indicating a flare. Just the achy muscles and joints and fatigue. She also took me off Bactrim because the creatinine was climbing. It was up to 121.

[Alysia]

sweety, I am SO sorry for the flaring
at least you now know what is going on and how to treat it...
each flare is so different, like gilders wrote here... this wg is somtimes such a puzzle
so the new lesson is that also muscles pains can be an indication to wg activity....
now go and beat that wg tomorow with the rtx, kick him away, like you already knows how to beat it ...
you are in my prayers and in God's care. you will be ok soon.

p.s. I hope that the creatinine being a bit high, was only reaction to the bactrim and not something with the kidneys.... I also had problems with bactrim and had to stop it, because it elevated my ALT and AST.

[pberggren1]

Had the RTX infusion today of 1,000mg with 100mg of Methylprednisolone and IV Benedryl. I also got 500ml of saline to hydrate before the RTX. This was the first time I got the IV Benedryl. Usually it is oral. I was wiped out right away after they pushed it in. Only takes 2 minutes to get it in. Then I was wiped out and slept for about 90 minutes. They also pushed the Methylprednisolone in over 2minutes as well. Sure beats waiting 30 min for it. But the pharmacy didn't have the RTX mixed until 10:30. I was ready to go with that one by 9:30. So an extra is not too bad. I was all done by 3:30 or so.

Now I just want and see if I need another one or so. If this is a bad flare I will probably start to feel crappy by Sunday. I will call my doc on Monday to get her to call the drug plan to get it approved again, that way if I need it next week or soon after I can get it fast.