Dazed and confused new member

[BookNut]

Another suggestion. Create a timeline. My new pulmonologist was SO grateful to get the one I just created. Although they CAN read the records, if you have been to a number of doctors and they are in different health systems it can be extremely cumbersome. I felt what he needed was a sort of "executive summary" of all of it.


I thought of doing this just a few weeks ago. I thought I would not remember the details and the times when I was given a new diagnosis or new meds. Then I had the bright idea. I asked my pharmacist to make a print out for me of all the meds I have taken since this started in 2011. It was just what I needed. The print out showed me when all my new meds, antibiotics and prednisone etc. had been prescribed and by which doctor. That was enough to prod my memory of what specifically was going on that month. I ended up Creating a table with the information that I thought most relevant. My table has five columns marked like this:


Month/Yr New Respiratory Meds Antibiotics Prednisone Comments


In each column I wrote the appropriate info about the time period and the medication prescribed. I only listed the ashtma meds once as they are ongoing. The antibiotics and prednisone I listed every time they were prescribed.


Under comments, I wrote my symptoms, what the doctor prescribed and any other pertinent info. On the few months where I was not given something new, I would simply leave the med columns blank and under comments I wrote how i was feeling as best as I could remember. NEXT I highlighted the most pertinent phrase in each comment and put it in bold letters. For instance: "Wheezing and cough are worse, in spite of the antibiotic"…that kind of thing. I found I was able to remember pretty accurately based on the meds prescribed that month and also remembering what I was doing that month - visiting my daughter for instance.


Finally, I selected the sections for the 3 months that I was the worst and colored that box yellow.


The whole document gave him a very good, and quick, summary of the details of my case. He was very appreciative.


But - a picture is worth a THOUSAND words - so here is a link to a page on my blog. Miscellaneous « Wanderings…


I have uploaded the chart I made to this page. You are very welcome to use it. I don't want the world to see it - so - any forum member is welcome to send me a private message. I will then give you the password so you can read the chart.

[mishb]

Hi Wanda,

I am glad you have finally been able to join up here.

You have certainly been through a lot.

I agree that your headaches will be from the fast drop in pred......5mg may not be enough to keep the sinus inflammation at bay. With the sinus inflammation you will also get headaches, so you are in a no win situation.
Please find a WG specialist as soon as possible but in the meantime, keep asking as many questions of us and of your current doc/doc's as you can.

[Wanda]

Thank you all for your support and encouraging words. I have felt so lost and overwhelmed with information from the internet. Having moved and no insurance I had only been seeing my Rheumy once a month and driving 90 minutes. I had to have someone drive me because of double vision and cataracts. I just got signed up for the government pre existing condition insurance. I don't know how that happened as I had to be without ins for six months and be denied ins from a private ins company. Feb marked my six months w/o ins and I signed up online on the 12th and they stopped taking applications on the 16th! I got approved March 1st. I didn't think I was going to get it at all so I am very happy about that. Now I can get some other things done that need to be taken care of, not sure if related to wg or not. Have appointments set up now for Primary Dr who is an Internist and Pulmonary Dr. and the ENT and two pages of blood work to be done. The blood work has me confused because they are not doing an ANCA test but they are doing ANA. I called the office to ask why and was told because the tests they are doing are more accurate??? I have seen on here and other sites that you can have wg and have a negative ANCA, can it be the other way around? Do you need another ANCA test done?
Again, I would like to thank everyone for the positive words and warm welcome and advice.

[mishb]

Hi Wanda,

I also had the ANA test done and I think they do both as a matter of course - or they do here in Australia when they suspect an AI condition.

At diagnosis I had positive ANCA and positive ANA and then twelve months later had negative ANCA and positive ANA.......I think it can't make up it's mind.
I was then diagnosed with (as well as WG) a Mixed Connective Tissue Disease which incorporates RA and also Lupus and a couple of others.
From what they told me, is that they call it MCTD because it is a mixture of all of the Connective Tissue diseases without a real distinction to just one of them.
I was told that it can go part and parcel with WG......some of our/my symptoms can be related to all connective tissue illnesses.

Some doctors like to do ANCA tests more frequently to keep an eye on how things are progressing. Mine only do it once a year just to make sure the levels aren't increasing because it can help them determine if the meds are working or not. However, how you are feeling and your symptoms will also tell them whether your meds are correct.

I think you primary Dr is just trying to cover all bases and wanting to get the best possible care for you.

Take care

[annekat]

Welcome, Wanda!

My dx was positive via a sinus biopsy, but if it had been negative, I guess they could have then done a lung biopsy to be sure, since I did have lung involvement. My c-anca was very low, so some sort of biopsy was in order. I was on high dose prednisone at the time of the biopsy and no one said anything about reducing the dose. Though they didn't know for sure I had WG, I was obviously in bad shape and needed the pred, along with some antibiotics, since my sinuses were inflamed and my lungs were full of lesions, and it wasn't clear exactly what was going on. After dx, CTX cleared my lungs pretty fast and later I was put on MTX which has worked out well (both along with pred, of course). Yes, the MTX made me a bit nauseous and pretty fatigued at first, but I got used to it and have little trouble now. I do split the dose as Don suggested.

It does seem like your two docs missed the boat in different ways. The first one should have gotten a dx via biopsy before concluding you had WG, and the second one shouldn't be acting like maybe you don't have it or reducing your pred that much. He just needs to get you a biopsy, and maybe he could consult with a Wegs specialist before making too many decisions about reducing your pred and such. it sounds like there are some specialists in FL, and there is a list of them on the Vasculitis Foundation website.

Anyway, I'm glad you are here; you are a lot better off participating in this forum than not, especially if you do indeed have WG!

[Barbara N]

A lot of helpful and interesting reading to go through. I have been trying to find a way to collect my medical history I end up writing it in all different places and have never seemed to come up with anything useful. Your chart seems like a good idea. I'll give it a go.

[drz]

A negative sinus biopsy doesn't tell you much as the sample might be too small or they just missed the areas affected, but if it is positive for Wegs that is very significant for confirming your diagnosis. The best chance of getting a valid sinus biopsy is some place who has done many of them and has experience reading them too. Lung and kidney ones tend to be more valid cause the lung samples tend to be larger and thus more likely to detect active Wegs and kidney samples because Weg activity in the kidneys tends to be be more pervasive and thus much more likely to show up.

More people complain about side effects or uncomfortable feelings from probing around in the lungs I think than the kidney ones. I was sort fascinated by watching on the computer screen as they probed my lungs looking for Weg hot spots and activity and may have blocked out the negative feelings as I don't remember it as uncomfortable but I also slept through my kidney biopsy so may not be best source of info on how they feel to most people.

[Jaha]

Welcome Wanda, I hope you get some answers soon. Best wishes to you!