Update from my rheum today

[firecracker]

Friday i get a call from the nurse saying "we need you to call us back asap about your bloodtest results". this is friday....at like 4 or 5. im working. I call at 501 and they are gone for the weekend. I already knew the answer anyway. My sed rate is over 80 and my pr3 is over 50. She said "be prepared when you come in for your appt to discuss getting back on immune suppressants and higher prednisone" my appt i think is in december. still looking for the paper with the appt. i had already up'd my prednisone last week from 10mg a day to 15mg and i am already feeling better. my face has been killing me for like a month or so. just the right side but its feeling a lot better since i up'd the prednisone. i cant miss work to take cytoxin and after reading some of the posts, i dont want to take it at all. ill have him get bloodwork done again before i start anything. i am just so mad at life right now. ugh! im tired of being sick.

[Doug]

Sick and tired of being sick and tired, is what I called it. Seriously! I felt that way many times during the treatment phase, the healing phase, even sometimes today, yet it's good to hear you are getting some relief from all the nastiness you've had to endure. Way to go!

[andrew]

Great that the Pred is helping! I hear you re: the Cytoxan but it affects everyone differently AND it can be beneficial fairly quickly. Remember too that when the nurse says 'immune suppressants' it may not necessarilly mean Cytoxan. There's a shopping list of other, less aggressive immune suppressants that might do the trick just as well!

[firecracker]

Its pretty sad that i have to play doc in order to get relief. I mean sht, with these #s the doc should have at least upd the pred. But no, dr jenni must do it herself. I was thinking about telling my boyfriend that if he wants to read some of these threads, he may understand wg more. I can however say that he is extremely understanding and helpful. He catches me balling like a baby in the middle of the night and will rub my head or back or do anything i need. My past bf s were complete opposites so i am so thankful. He told me today that we will get thru this.

[jola57]

firecracker, i am sorry you are feeling down. Andrew is right, I think that first of all there is realy a shopping list (Andrew's words) of immunosupressants that you can take, second most of us have very little if any serious side effects from chemo. Always look on the bright side. Here's to sunnier days

[Jack]

The chemo drugs did not affect me at all, even high IV doses, they just made me feel better.

[BARON]

Hi we have just changed to a new GP and he is a lot better in understanding wg the strange thing is we live in a village with approx 10.000 people and there is some one else he treats for wg all you can do is push and push again for answers one of the drugs D was on made her fell sick all day he changed it and she doesn't fell sick. My point is if your doctor is not giving you his or her best change them it's not been nasty or anything to them but making sure you get the best. D just gone onto chemo and up to now not to bad touch wood .The big thing with this wg's it affects every one differently i have always said to my wife your one in a million but this is not what i wanted for her.She has such a positive attitude and it dose seem to help not just the drugs but a positive outlook bit like the glass half full or half empty.That made her laugh not had a drink for 9 month now she say when remission comes were going to have a party with alcohol and not three liters of water a day all for now take care

[onatreetop]

I have been wondering and thinking about the pred being to low for myself. The face pain I have is the left side. I even have what is starting to look like blackeye. I am still on the cytx and 15mg of pred.I have been thinking of uping the pred to see if it helps? I am not the doctor and am afraid that I might do something I shouldn't. This is my first round and I feel the doc is wrong at the moment and am not sure I want to hang for 6 + weeks until the speciallist says either way. I guess what I am getting at is do many of you change the pred doses yourselves? We know when we aren't feeling right?

[Jack]

Yes, but I've been taking it for over 20 years so know it quite well. I have on occasions increased my dose by a fairly large amount for a day or two when having a particularly hard time. I find that I can then return to my original dose without tapering. However, I could never recommend this action without a doctor's guidance, its just me being bad! Why not ring your doc up and ask him what he thinks?

[Sangye]

Unless you've been on pred several years and really know how pred works (not just how it makes you feel) please do not increase or decrease the doses yourself.

Yes, you might give yourself more pain/symptom relief. But you stand a good chance of killing or seriously harming yourself, too. Once you've been on at least 15 mg of pred for 3 weeks, your adrenal glands are dependent on it and stop functioning properly (it's more complicated than that). Increasing it to get relief and then dropping it again can cause your adrenal glands to shut down completely. This is called acute adrenal crisis and is fatal within 24 hours without emergency care.

Even if you avoid going into adrenal crisis, sudden increases and decreases of pred are extremely stressful on the adrenal glands. You're weakening yourself tremendously and that damage persists for YEARS. No way around it, it's biochemistry.

Also, sudden drops in pred are known to cause elevated intracranial pressure (aka pseudotumor cerebri). I have this and it's no picnic. I almost went totally blind (both eyes) and nearly died in one day. It happens extremely fast, without warning.

Lastly, decreasing pred can trigger a Wegs flare. It can happen even with doctor supervision, so without a doctor's assistance you're really playing Russian roulette.

(This isn't directed at you, Jack-- you know how to do this safely)