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. :hug2::smile1::wink1:

[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).

[Sangye]

Yes, it doesn't make sense to take folic acid only once a week. It's water-soluble, so you need to replenish it daily.

[purr6]

Thank you. I will ask about the folic acid being taken daily at my next appointment. I was on 20 mg of methotrexate initially, but it had to be decreased because my white blood cell count was extremely low. Since then it has come up a bit, so the doctors felt that staying at the 15mg dosage of methotrexate is appropriate. I asked at my last appointment if perhaps because of the joint pain, this was an indicator that the methotrexate is not controlling the WG. The response I got was that my bloodwork results were good (with the exception of the white blood cell count). ANCA was borderline--but apparently that is ok. It was mentioned that we would only try the rituximab if I have a flare up.

I have to say, not having a medical background, this disease and its treatment is very confusing--nothing seems clear cut. I am now wishing I had that type of training. My teacher training just doesn't cut it when dealing with all of this!

[Tim Roberts]

For what it is worth, I also take methotrexate (20 mg) orally once per week and I have also experienced the same nausea symptoms. i can relate that I dread taking it every Tuesday as I know that i will not feel well the rest of that day and even drained on Wednesday. In discussing this with my rheumatologist, she suggested increasing my daily dosage of folic acid from 1 mg to 2 mg. She also suggested that I take an antacid about an hour before taking the weekly methotrexate dose. To be honest, the two changes have a made difference and the nausea and upset stomach that I used to experience have improved. It hasn't eliminated all of the discomfort but it has noticeably improved it. She also indicated that if these two changes did not help me that I could consider taking methotrexate by injection rather than orally. Just a thought and I hope this helps.

[purr6]

Thank you so much, Tim! I appreciate your response. I will try the antacid and ask about the folic acid increase as well as the injection idea. Is it a self-injection or one that must be administered by the doctor each week? Thanks again and yes, it most certainly does help!

[Tim Roberts]

No problem at all. As I understand it, it is a self injection that we can administer. I have one of the people that I work with that takes methotrexate by injection for her rheumatoid arthritis and indicates it is easy and she would never go back to taking it orally. Again, a good conversation for you and your doctor at your next appointment.

[Cindy]

Keep an eye out for the joint pain...it could indicate wegeners acting up. That is what we are here for to listen to each other....cause we understand. :hug2::smile1::wink1:

I have had chronic joint pain for about a year and that is why I had an MRI last week. I will see my WG doctor next week to see what he thinks. I also worry that it is smoldering WG.

[Jack]

Anyone requiring stomach protection may well be better off taking a Proton-Pump Inhibitor such as Lansoprazole. It is far more effective and longer lasting than alkaline based antacids.

[Hammy8241]

Guess I'm the odd one out. No problems with mtx eaither oral (25mg) or now injection (20mg) weekly. I Take 5mg Fa two days after the mtx only. Injections are by self, are easy (after the first one) and painless. The move from oral to injection has/is making an improvement to my condition as well.

[Sangye]

I asked at my last appointment if perhaps because of the joint pain, this was an indicator that the methotrexate is not controlling the WG. The response I got was that my bloodwork results were good (with the exception of the white blood cell count). ANCA was borderline--but apparently that is ok. It was mentioned that we would only try the rituximab if I have a flare up.

I have to say, not having a medical background, this disease and its treatment is very confusing--nothing seems clear cut. I am now wishing I had that type of training. My teacher training just doesn't cut it when dealing with all of this!
The entire time I had joint pain my labs looked great. It wasn't until the Wegs activity increased and finally caused lung hemorrhaging that it was clear it was not under control.

I'm wondering how your joint pain was on the higher dose of mtx? (You might have been on pred, though, which can mask it)

Wegs is very complicated, and you're right--nothing is clear. I'm a physician (chiropractic) and have had to learn a lot since being dx'ed. It's not like most other diseases in the way it behaves, and can be incredibly difficult to know what's going on with it. All of my non-Wegs docs have learned a lot, too. It's like Wegs is from another planet.

[janNaz]

I just started 15 mg of mtx tablets yesterday and took my first 1 mg of FA this morning. So far so good, but it might be too soon to notice anything different for me. Tho I am still trying to decide if I should take FA on the day I take mtx, even though rheumy said not to. I too will definitely keep in mind the stomach protection, increasing FA, and mtx injections.

[Sangye]

I did the mtx injections, too-- piece of cake. I never noticed any side effects like nausea or fatigue that corresponded to it. However, I was only on mtx for 2-3 months and had to stop when I developed an allergic reaction (pneumonitis). I was also in horrible shape and might not have noticed a little extra fatigue. I was still on oxygen and had very low mobility.

[pberggren1]

My doc put me on 5mg of Folic Acid and 300mg of Iron. He said I was slightly anemic.

[Cindy]

The entire time I had joint pain my labs looked great. It wasn't until the Wegs activity increased and finally caused lung hemorrhaging that it was clear it was not under control. It's like Wegs is from another planet.


This is exactly what worries me.

[Sangye]

But you know, I felt the Wegs was not under control that whole time. I just couldn't get my docs to believe me. Even Dr Seo thought it was mostly under control, until my lungs began bleeding. It can be very frustrating.

[jola57]

Its hard to tell them that something is going on when the blood work seems fine. I just had a bone scan today, for my left ankle, and the whole body showed many "hot spots" but especially the left foot. So now I will have to wait for the radiologist to read it and send in his report. I am down to 4mg and my blood results seem to be ok however I am getting a bursa on my right elbow. I had many of them at the beginning, horrible achy spots, couldn't touch them and that meant I couldnt put my wrists or elbows on the table (it made me look very table mannered
:w00t:

[Sangye]

"Hot spots" on a bone scan??? Is that new for you?

I don't like that you're getting more pain, especially the type you had in the beginning. When do you see your Wegs doc, Jolanta?

[JanW]

I share Sangye's concern, Jola.

I think the docs at the symposium said that people could go up to even 3 mg of FA/day to fight mtx's side effects. The drug, overall, has a profile that indicates that it's very well tolerated by most people and it's ease of use with once a week dosing makes it a drug that rheumys like to prescribe if they can.

purr - I, like Sangye, would like to know if your pain was better when you were on a higher dose of mtx. My doc looks at the blood results, sure, but he spends much more time looking at, and talking to, me, and he wants to hear about everything. That's how he knows how well I'm really doing. My ENT just listens to me breath and can guess how open my windpipe is without even doing the scope (but then he does it anyway).

[jola57]

The lowered dosse is almost from the beginning, so it actually worked it is only now that I am lowering the pred that the pain is comming back. I am not as yet concerned too much, just that these bursas are starting, that may not be a good sign. I will watch and if another shows up I will definitely call my rheumy. Remember I am in Vancouver and there is no wegs specialist in at least 3000km (1860miles) radius, so getting to one is not realy an option.
Sangye the hot spots are spots where the radioactive isotopes pool the most in the bones. I had a bone scan done maybe 8 years ago, so many years befor my wegs was diagnosed because of hip and shoulder pain. Back then I did have 5 hot spots, both shoulders, hips and my tail bone (OK no laughing here :)) No further investigation was done at the time as I guess they didn't think it was worth it.
I watched the scan on a computer screen of the scanner. I couldn't realy see my body scan but in the foot one, the left one glowed, and I mean glowed. So i wonder what they will term it as being.

[elephant]

Jola before I was diagnosed in July 2008 I thought I had bursa of my shoulders and elbow. I could not move my arm up and I had a very small child at that time. I could go on but every joint was affected at differents times and moved around and would stay for a week or so. I even saw a orthopedic surgeon because my knees were hurting so bad that I could barley walk.
Just reading all these response...I have a feeling that , "Most of you having joint pain...means that the WG is still there." I have no joint pain now and believe I had it so bad that I could not function and was in denial for a long time.

[Sangye]

Jolanta, did your prior hot spots correlate with arthritic involvement in those areas? Hot spots on a bone scan are nothing to be taken lightly and should always be explained thoroughly.

Maybe you're going too fast tapering pred? What dose did you start at and how long were you on it? How fast are you tapering?

Did you see my post yesterday about VF consultants working with docs in other countries? A woman at the VF said they do. She also said the Canadian Wegs specialists are VF consultants. She highly recommended Dr Siminovich (sp?). I think she's at Mt Sinai in Toronto, but I'm not sure.

[LisaMarie]

ok since 1 work the 16th i will try to record the Good morning america show........maybe this is the break we have been looking for

[purr6]

I share Sangye's concern, Jola.

I think the docs at the symposium said that people could go up to even 3 mg of FA/day to fight mtx's side effects. The drug, overall, has a profile that indicates that it's very well tolerated by most people and it's ease of use with once a week dosing makes it a drug that rheumys like to prescribe if they can.

purr - I, like Sangye, would like to know if your pain was better when you were on a higher dose of mtx. My doc looks at the blood results, sure, but he spends much more time looking at, and talking to, me, and he wants to hear about everything. That's how he knows how well I'm really doing. My ENT just listens to me breath and can guess how open my windpipe is without even doing the scope (but then he does it anyway).


No, I can't say that the pain was better on the higher dose of mtx. I can, however say that the fatigue was worse. I think perhaps that was due to the very low white blood cell count. My doctor felt that the counts being low could have been as a result of the cyclophlosphlamide still being in my system along with the methotrexate. She felt that perhaps it would come back up after a month or so. It has come up somewhat at the last bloodwork and I am due to go for the monthly bloodwork this week, so I will see.

I am going to inquire about all of these things, however--anything that can make this easier to deal with. Thank you to everyone!

[Cindy]

Here is the link from the VF about the Good Morning America Show.

VF in Studio Audience of Good Morning America on Sept. 16! | Vasculitis Foundation (http://www.vasculitisfoundation.org/news/2010/09/08/vf-in-studio-audience-of-good-morning-america)

[jola57]

Thanks for the link Cindy

[LisaMarie]

did i miss the talk on good morni.g america?

[misskay]

Don't know if they did it LisaMarie... I had bloodwork this morning, so I missed the entire show :(
Maybe I'll check their website and see if it's there.... if it is, I'll post a link

[Cindy]

I am watching now but so far have not seen anything on VF. They did not add my story. The ABC reporter tried but could not get it into the show. Hopefully, they will interview some of the people who showed up for the audience.

[elephant]

Well that is too bad. He will have to try next time.:razz::rolleyes1::razz:

[Psyborg]

I recorded and watched the show, but didn't see anything on the VF, though I did see people in the shirts. Did it get on and I spaced out during the segment? I was working while I had it running...I can go back and watch again if I have an idea what segment...maybe see if I can get a piece of it to video or something if It's there.

[LisaMarie]

I am watching now but so far have not seen anything on VF. They did not add my story. The ABC reporter tried but could not get it into the show. Hopefully, they will interview some of the people who showed up for the audience.

ok who do we need to indidate with e mails at good morning american? we gotta get this story out

[jola57]

So no VF on GMA. Why? No interviews? Maybe we are not newsworthy. Did you hear about the doc shooting at Johns Hopkins?

[elephant]

Yea, I thought of Sangye...first they said a doctor was shot...but if I heard correctly it was his mother he shot then himself.

[Sangye]

I was glued to the news yesterday while it was happening. He was discussing his mother's care with the doctor and shot the doctor in the abdomen. Then he ran into his mother's room. The police waited about 2 hours but didn't hear anything inside the room. When they entered they saw that he had shot his mother and himself in the head. The doctor was first reported to be in critical condition, then was upgraded and brought to surgery. He was expected to be okay but I haven't heard anything further.

They haven't released the name of the doctor, so of course I'm worried it could be one that I know. Even if it isn't, the thought of any doctor being shot while practicing is unthinkable.

I have to go to JHU today and Monday and I don't look forward to the increased tension that will be there. The downtown (main) campus where this happened is already quite tense, as it's in a very bad neighborhood.

[Sangye]

Here's the story from CNN. Police: Maryland shooter distraught about mother's prognosis - CNN.com (http://www.cnn.com/2010/CRIME/09/17/maryland.hospital.shooting/index.html?hpt=T2)

[elephant]

Glad the doctor will be ok, but that is too bad about the man and his mom. The one thing I noticed is that security in most hospitals are pretty relaxed. I was always worried about some stranger coming in my room, but most of the time I would have my husband stay with me overnight.

[Sangye]

JHU is massive-- goes on for many city blocks. They have security everywhere but it's never enough of course. I don't see how they could more. The main hospital (where this happened) has 80,000 people passing through it each week! They couldn't scan every one of them for weapons. As it is, the security at the main entrances check people in and you have to sign in and say where your appt is.

[Cindy]

Lisa Marie,
I have been working on this for over a year. I have direct contact with an ABC person who contacted the senior producer of the show. It is VERY difficult to get this type of coverage - but I am always (every day) working on it from many aspects.

Also, I will have several media releases about my story within the next few weeks and months (already scheduled or in production). So, people should be going to my website. It would really help if I have more comments from Weggie people especially on the "donate" blog or "Journey" blog. You do not have to mention manes just your story.

[LisaMarie]

Lisa Marie,
I have been working on this for over a year. I have direct contact with an ABC person who contacted the senior producer of the show. It is VERY difficult to get this type of coverage - but I am always (every day) working on it from many aspects.

Also, I will have several media releases about my story within the next few weeks and months (already scheduled or in production). So, people should be going to my website. It would really help if I have more comments from Weggie people especially on the "donate" blog or "Journey" blog. You do not have to mention manes just your story.

Cindy
I know you are working hard I just wanna help any way I can
It amazings me as i am not responding well to treatment that someone can say it is not new worthy...what if it was them or their loved one.....I just wanna ring the producers neck or nix it...sorry to vent ...must be that increase in pred to 60 mg...it always makes me fiesty\

[Cindy]

Lisa Marie,
If I were on 60 mg of pred - I think my mind would explode :blink:

[LisaMarie]

trust me i feel like it at times ....i was soo excited to be on 40 mg for a month...oh well maybe he will decrease me in 2 weeks when i have my labs rechecked...i can hope

[jola57]

Hang in there LisaMarie