Meth

[annekat]

Personally, I feel OK being on the meds indefinitely, maybe for life. I did have a minor flare when on a lower dose of MTX. I'm trying to taper pred and am down to 9mg. from 10. I want to get to 5mg. and then think I would stay there for awhile, which is what my doc implied, too. We will see how it goes, and every case is different.

As an aside, I've been out doing some fairly heavy yardwork today, digging and pulling up roots of plants that shouldn't be there, moving firewood around, stuff like that. It is making me feel really good! Helping me fight the blues and malaise, getting my circulation going, etc. I don't know that I could have done this work a year ago, and certainly not 1.5 or two years ago. Shows how much better I'm doing, how great physical exercise is, and I hope gives encouragement to those who are still in an earlier phase of recovery.

[Debbie C]

When I went to the CC last time ,my dr. kinda off pissed me off. At first he said I seemed more relaxed and better and everything looked great. Then I had a list of questions a wanted to ask him and after waiting 3 hrs to do so I may have gotten a little impatient when him and my boyfriend starting talking football !!!!! I told him about this forum and all the info I get from it. I asked him about melatonin (sp) helping the immune sytem as well as helping sleep and also that other drug that was mentioned on another thread here that was being researched for wg that is now being use to treat cancer.He THEN proceeded to tell me how much he has done research on this and mentioned other hosp. like the Mayo Clinic , Unv. of Boston and serveral others that are good and he has never heard of this.And gave me a look.... I said you think I am an aniety ridden and something else ????I can't think of it know and he leaned back in his chair and he looked and boyfriend and just smirked. I was ready to slap both of them. I thought let me shove some pred. down your throat for 2 years and see how you act.But he basically was saying since he hasn't heard of it ,it isn't so. I think I will find those past threads ,copy them and mail them to him. Also get him a subscription to the Journel of Medicine !!

[annekat]

You tell 'em, Deb! Men!!!

I do know that melatonin helps sleep, because I use it for that. It doesn't take much, for me anyway..... and I may wake up a few hours later, but that is better than not getting to sleep. I can usually drop back off. It works best if I take it maybe a half hour or more before I want to go to sleep, as opposed to taking it and then lying there waiting for it to work. As for it helping the immune system, I vaguely remember that being mentioned in a thread, and would like to know more, if it is true.

[drz]

Debra
Is he on the Vasculitis foundation list of consultants? If so he should get their newsletter. If not you can put him on their mailing list free. My internist thanked me for putting her on their mailing list.

[Alysia]

and he leaned back in his chair and he looked and boyfriend and just smirked. I was ready to slap both of them. I thought let me shove some pred. down your throat for 2 years and see how you act.But he basically was saying since he hasn't heard of it ,it isn't so. I think I will find those past threads ,copy them and mail them to him. Also get him a subscription to the Journel of Medicine !!

he sould also sign up to lessons in "good manners & politeness"...

[Debbie C]

Drz..he is one of the head reumys at Cleveland Clinic and has written many articles and had researched this desease, he also speaks at the symposyams (sp) so he should be on the list.


Anne..yea someone posted 2 articles that some scientists are researching melontonin and that other drug..I'll have to find them.


Alysia,drs sometimes thank they are God and can do or say nothing wrong ...hope you are feeling better !!

[drz]

Drz..he is one of the head reumys at Cleveland Clinic and has written many articles and had researched this desease, he also speaks at the symposyams (sp) so he should be on the list.

Very sad to for one know so much about a disease and nothing about how to help the people he tries to treat. I often get a form to rate my experience at Mayo Clinic where you give feedback about their services and how you felt about them so they can identify any problem areas. Does Cleveland Clinic do that too? It might help improve their services for you and others.

[Pete]

I've never gotten a feedback survey from Cleveland Clinic.

Debra, next time, you may want to leave your boyfriend in the lobby so the doc stays on task. The Browns suck anyway - again...

[annekat]

Yeah, sometimes when guys get together and there is sports talk, they sort of lose it.... I'd prefer to think that he is a good doctor but just had a momentary lapse..... however, his being dismissive about the melatonin, etc., does not sound out of the ordinary for doctors; I think they can be pretty resistant to any ideas about herbs or other substances being used in non-traditional ways against illnesses or conditions. I guess I could cut him a bit of a break considering how many people he sees and he probably gets a lot of weird questions from patients.... not that I think that was a weird one. I think docs should be more open minded about these things and if they have no response or answer, just say so respectfully and not make people feel small for even asking.

[drz]

I've never gotten a feedback survey from Cleveland Clinic.

Debra, next time, you may want to leave your boyfriend in the lobby so the doc stays on task. The Browns suck anyway - again...

The best clinics I use both have such feedback forms. Others that I use that don't do as well, don't seek feedback from their customers which is why some places like Mayo are known for excellence because they make it a priority i guess. Maybe it is optional for the doctors and only the best doctors request it?