Re: Seeking more advice

[Guest guest]

Wow Kirk that's crazy....OK......well, he's going to send you to a new Rem. doc? I'm just wondering where you found this Doctor? I thought it was at the University of Penn?? Maybe I'm wrong. I go to my Rhemy tomorrow morning. I will ask him if he knows or can recomend a doc in your area. My doc does alot of work at Hannemaun Hospital in Philly. Maybe he knows of someone near you. I'm keeping my fingers crossed for you! I'm sorry you are having such a hard time now. I've been in a major rutt also. Everyday I wake up to a new something. But I'm hanging in there. I definitely am feeling better since I'm back up high on these steroids. But I know it can't last for long. I have to come back down sometime soon. He will probably start my decent tomorrow.

Carey......

[Guest guest]

Kirk, well if you are taking the enbrel hopefully that is delaying the damage that would be occouring if you werent taking it. You may need to add mtx to the mix as the combo of the two work better than either one alone. There is a doc there, Dr. Medsgar at University of Pittsburgh, his contact info is

BST South 721, 3500 Terrace st. Pittsburgh PA 15261 USA Phone: Fax:

He has done some studies on stills and he comes highly recommended along with dr Cush in Texas.

[Guest guest]

Kirk, I'm very sorry that your doctor does not feel qualified to help you but it sounds like it might just be for the best. I don't know the area but am wondering if your pain specialist might have any ideas about a doctor for you.

Keep hanging in there. I know it seems long and it is very hard but some of the options we do have are; who sees us to treat our disease, find someone you like and try to behave, lol, in some respects.

Find something that makes you smile as often as you can.

I'm supporting you, Melt

Seeking more advice

I am being beaten down mentally, and it is getting harder to get back up. I take it I will be "shopping" for a new rheumatologist shortly. Anyone know a good one in NE Pa that has dealt with Stills?

Kirk.

[Guest guest]

Kirk im just geussing that your doctor doesnt feel like he has enough experience with Stills,it is a very rare disease so i hope he will send you to an Associate who is much less a stranger to the Dragon.That is very frustating,but i sure hope it turns around in your favour,it could be for the best.Take care. d.Canada

Seeking more advice

I am being beaten down mentally, and it is getting harder to get back up. I had an appointment with my rheumatologist today. The only good news I got is that all of the anxiety created by whatever they saw on my kidney was for naught. Turns out there is something there, but it is nothing to worry about. (I have heard that one before) My blood pressure was up again, even as it was down for my last 5 visits to my PCP in the last 3 weeks.

My fun begins when he asked me how I have been doing. I explained that while the headaches have been a little less severe the last 2 weeks (save one of them that was viscous) but they were still occurring. I told him I was seeing a pain specialist also, and he updated my med chart. I also told him that I have a lot more joint pain now than I did even two weeks ago, and that I have been noticing a lot more swelling. Even one month ago I had no issues with my shoulders or elbows, but have been feeling them come on strong for a couple of weeks. I guess he is lost, as he told me if I am not better by next month he is going to recommend me to another rheumatologist. WTH?

If I don't know what is wrong with a car I don't waste my customer's time or money, I recommend him to someone who does. I all of a sudden feel like I have wasted 3-4 months, and wonder how much damage is done that may not have been otherwise.

I take it I will be "shopping" for a new rheumatologist shortly. Anyone know a good one in NE Pa that has dealt with Stills?

Kirk.Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

My current rheumey was recommended by all of the Dr's at the hospital during my last visit. He has been fairly aggressive with this, but told me if he doesn't see improvement by next month, he will recommend me to another. He asked for the name of the I.D. Dr I saw at the University of Pennsylvania so that he may contact him for advice on a rheumey down there.

I will go there again if need be, but I really don't like cities. I suppose this is par for the course the way this year has gone for me.

I sure hope you come down of the pred easily Carey. I certainly "felt" the difference two weeks ago when mine was jacked up to 60 mg/day, and could also feel the difference as it was reduced. I didn't feel great, but a whole lot better than I have been.

Kirk.

Re: Seeking more advice

Wow Kirk that's crazy....OK......well, he's going to send you to a new Rem. doc? I'm just wondering where you found this Doctor? I thought it was at the University of Penn?? Maybe I'm wrong. I go to my Rhemy tomorrow morning. I will ask him if he knows or can recomend a doc in your area. My doc does alot of work at Hannemaun Hospital in Philly. Maybe he knows of someone near you. I'm keeping my fingers crossed for you! I'm sorry you are having such a hard time now. I've been in a major rutt also. Everyday I wake up to a new something. But I'm hanging in there. I definitely am feeling better since I'm back up high on these steroids. But I know it can't last for long. I have to come back down sometime soon. He will probably start my decent tomorrow.Carey...... Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Thanks Jen. I have looked into other Dr's in Pa already. I will consider him should I get worse, but Pittsburgh is 300+ miles from me.

I do appreciate the thought. Kirk.

Re: Seeking more advice

Kirk, well if you are taking the enbrel hopefully that is delaying the damage that would be occouring if you werent taking it. You may need to add mtx to the mix as the combo of the two work better than either one alone. There is a doc there, Dr. Medsgar at University of Pittsburgh, his contact info is

BST South 721, 3500 Terrace st. Pittsburgh PA 15261 USA Phone: Fax:

He has done some studies on stills and he comes highly recommended along with dr Cush in Texas. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

> Kirk

I don't know where you live in Penna - but when I lived there 13 years ago there

was an excellent rheumatologist in Lebanon, (central) PA, by the name of

Kantor. I believe he was/is affiliated with Hershey Medical Center/Penn State

University. He diagnosed my Still's disease immediately, following over a year

of misdiagnoses by other doctors. He also began treating the symtpoms as

aggressively as he could, with the medications of the time.

Good luck!

My current rheumey was recommended by all of the Dr's at the hospital during my last visit. He has been fairly aggressive with this, but told me if he doesn't see improvement by next month, he will recommend me to another. He asked for the name of the I.D. Dr I saw at the University of Pennsylvania so that he may contact him for advice on a rheumey down there.

I will go there again if need be, but I really don't like cities. I suppose this is par for the course the way this year has gone for me.

I sure hope you come down of the pred easily Carey. I certainly "felt" the difference two weeks ago when mine was jacked up to 60 mg/day, and could also feel the difference as it was reduced. I didn't feel great, but a whole lot better than I have been.

Kirk.

Re: Seeking more advice

Wow Kirk that's crazy....OK......well, he's going to send you to a new Rem. doc? I'm just wondering where you found this Doctor? I thought it was at the University of Penn?? Maybe I'm wrong. I go to my Rhemy tomorrow morning. I will ask him if he knows or can recomend a doc in your area. My doc does alot of work at Hannemaun Hospital in Philly. Maybe he knows of someone near you. I'm keeping my fingers crossed for you! I'm sorry you are having such a hard time now. I've been in a major rutt also. Everyday I wake up to a new something. But I'm hanging in there. I definitely am feeling better since I'm back up high on these steroids. But I know it can't last for long. I have to come back down sometime soon. He will probably start my decent tomorrow.Carey...... Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form.

ion by any person following the information offered or provided within this support form.

[Guest guest]

Thanks! I will take as many names as possible, although my wife is pretty insistent I go back to the University of Pennsylvania. I will not know until next month whether my current rheumatologist is going to continue to treat me, but I may not wait that long if I continue to feel like this.

I have an appointment with my PCP on Friday morning, and do intend on updating him with what is going on. The infectious disease Dr I had in while in the hospital mentioned to me that he would be happy to treat me, and this guy seemed genuinely interested. I am not too sure whether he is the right choice or not, but I have not forgotten him. I also will bounce this off of my pain management Dr, as he is the only one I have met to date that has experience with Stills, even though all of his came from dealing with children. Maybe he has an idea or two also.

I just hate change, and wish the world worked like it should. I know that wish is unrealistic, but hope is one of the few things keeping me in the game.

Kirk.

Re: Seeking more advice

Wow Kirk that's crazy....OK......well, he's going to send you to a new Rem. doc? I'm just wondering where you found this Doctor? I thought it was at the University of Penn?? Maybe I'm wrong. I go to my Rhemy tomorrow morning. I will ask him if he knows or can recomend a doc in your area. My doc does alot of work at Hannemaun Hospital in Philly. Maybe he knows of someone near you. I'm keeping my fingers crossed for you! I'm sorry you are having such a hard time now. I've been in a major rutt also. Everyday I wake up to a new something. But I'm hanging in there. I definitely am feeling better since I'm back up high on these steroids. But I know it can't last for long. I have to come back down sometime soon. He will probably start my decent tomorrow.Carey...... Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Kirk;

I'm so sorry the headaches aren't gone. I was so hoping the Neurontin would help as it did for me.

Please know I am thinking of you and wishing things to get easier for you my friend.

We've all suffered through so many days as your having and I think it's a good idea to share with your doctor your feelings because I think they have so much to do with how well we are/ or aren't.

Best wishes for tomorrow to be a good day, Melt

----- Original Message -----

From: Kirk Bonanny

To: Stillsdisease

I also have to make an appointment with my pain specialist, as the Neurontin seems to be ineffective even though I am at my full dose @1800 mg/day. That makes this the 4th medication I am on that is supposed to "prevent" headaches that isn't working. The part that scares me is that I am still on every one of them, although each seems to have other uses. One is an anti depressant, two are supposed to help with blood pressure, etc. The neurontin seemed to be working as I had almost a three week break from headaches (last week in June until July 10thish). This however, is not the first time they have "cycled" off for a few weeks only to return back as harsh as they were.

This may sound dumb, but I am out of patience. I have been in a foul mood for two weeks now, mainly because of the increases I have had in pain. The headaches make it all that much more enjoyable. I need to go see my pcp and get a stronger anti depressant as the one I have now is obviously no longer as effective as it was. I try as best I could to not be miserable around my wife, but at times I have no control over it. My idiot neighbor taunting my wife and hiding when I am home is also adding to my desire to "come out of retirement" and beat him until he forgets his name.

Oh well, have a good one. Kirk.