Good Morning America

[purr6]

Hello Everyone,

Good news! Good Morning America (aired from New York) on ABC is supposed to be doing a story on various forms of vasculitis including Wegener's on September 16th. I am thrilled to see some media attention given to this disease in particular. It may be of interest to many!

[elephant]

Thanks for letting us know purr6. How are you?

[purr6]

I will post any other information about this broadcast that I happen to get. It is exciting to see that finally there will be some attention drawn to this disease. I sometimes get frustrated when people have never heard of this (even people in the medical field) and I can't tell you how many of my doctors have told me that I am the only patient they have with this.

I am getting used to this "new normal". Overall, things are going pretty well, though the numbness in my foot continues to be an issue as well as fatigue. I am on Methotrexate and it seems to be doing the trick with keeping things controlled for now, but nausea is an issue the evening I take it as well as the following day. I am wondering if something like gravol would help. I think it is worth a try to avoid feeling like vomitting every week for a day and a half. I feel silly complaining, since it is somewhat short-lived, but I find myself dreading taking it now as I know what the result will be. Joint pain is still an issue as well, but I have been using a paraffin wax machine for my hands and wrists to soothe them and this has been working fairly well as a temporary pain relief--I think I am going to invent a full-body wax machine for people with joint pain!...LOL

[elephant]

My sister is on Methotrexate for arthritis and she complains of nausea on/off. Are you taking folic acid too? Keep an eye out for the joint pain...it could indicate wegeners acting up. I am glad you are ok. Don't feel silly, I complain about my sinuses on this forum all the time....and any other thing that bothers me. That is what we are here for to listen to each other....cause we understand.

[JanW]

How much folic acid are you taking every day along with the mtx? Docs at the symposium said that upping the fa often does the trick in minimizing some of the more common mtx side effects. I take 1 mg every day (including my dose) day and have had none. I'm on 17.5 mg.

[Sangye]

Folic acid is just a B vitamin, so you shouldn't be afraid to take more. B vitamins are water-soluble, which means you lose them in urine and sweat each day. Stress and chronic illness also burn up more B's. Make sure you take a B-complex along with folic acid to keep the other B's in balance.

Purr6, I'm concerned about your ongoing joint pain. How long have you been on mtx? Joint pain can be a sign of smoldering Wegs. It seems to be quite common that our docs don't give it much attention, especially when other signs/symptoms are looking okay.

[Jack]

I was concerned about the joint pain mentioned too. From the description, it sounds like an arthritic type of pain which is typical of active Wegener's. I would make the distinction between this and the pains associated with Pred and other drug side effects which in my case were more like joint stiffness and the feeling of seizing up - not a problem unless you want to move!

[purr6]

Yes, I am taking Folic acid, but only a dosage of 5mg once per week. My folic acid is by prescription. If I increase the dosage of the Folic acid, should that dosage be over the counter and if so, what do you suggest I increase to? My dosage of Methotrexate is 15mg once per week and I have been taking this since mid June. I am not taking any Prednisone (haven't since June also) so I am certain the pain is not related to that. It is definitely joint pain, as opposed to stiffness and the feeling of seizing up. I have that too and the joint pain is definitely different. If I had to compare it to the joint pain I felt just before being diagnosed, it is much easier to handle now. When I was first diagnosed, a plain sheet covering my body was excruciating. I guess I was sort of resigning myself to the idea that I would always have joint pain--even in remission. Any thoughts on this? At my last appt, my doctor referred me to the arthritis society for pain management so I have been doing physiotherapy exercises on my hands. Is it realistic to expect that when we are in remission, we have no joint pain as was the case prior to being blessed with this Wegener's?

Thank you everyone for your responses! I greatly appreciate the advice!

[Sangye]

Until I did rtx, I thought (and my Wegs specialist did, too) that my joint pain was a given. After rtx got the Wegs under control for the first time in 4 yrs, the joint pain went away. I felt that the Wegs was smoldering all that time and this is proof.

[JanW]

I'm not sure of what the standard of care in dosing of FA is, but I was under the impression that most users of mtx were taking it daily, like I am. Of course, that means that my dosage is 7 mg per week. My mtx is 17.5 mg per week. I was going back and forth with my doctor about ankle pain I've been having and what he did was prescribe a medrol pack (so step down dosing of pred over six days) to see if it had any effect. The effect was immediate and from that we were able to conclude that at least some of my pain was caused inflammation -- and we are prepared to call all inflammation WG at this point (I was diagnosed in January, bloods and everything else except the ankle now normal). So, my doc upped my mtx.

You're on the lowest dose of mtx right now, so you may need to have it be upped, particularly if you are experiencing recurrence of symptoms of pred (I don't take pred).