And yet another newbie

[Dryhill]

For over a year I had been having problems sleeping. Which ever side I slept on the lower nostril would block up and soon I was breathing through my mouth, I would then wake up with a piece of sand-paper for a mouth. Repeated trips to my doctor did no good. Then during November 2010 I started to get strange aches in my shoulders and knees, these I tended to ignore as I had decided it would be fun to fall down an entire fleight of stairs (I have only lived in my home for 27 years, you really can not expect me to remember where the stairs are). At the start of December 2010 I got the symptoms of flu so I decided to take a few days off work. I panicked when I got earache in my left ear (I had had earache as a child but always in my right ear) and was getting nose bleeds, something I had never had before, and wasalso coughing up blood. A trip to the doctor got a very worried GP urging me to go to the local hospital asap but NOT to drive myself (something about my SATS only being 79% and I might pass out whilst driving). Six days later I was diagnosed with Wgeners and was very quickly given Cyclosphosamide and 60mg of Pred. After a failed attempt to move my fortnightly chemo sessions to a three weekly cycle I am now on Cyclophosimde every three weeks with a weekly 20mg dose of Methotrexate. The Pred is now down to 15mg so hopefully I can start to lose the weight I gained. Due to lack of money I resumed working (as a self-employed taxi driver) in mid July, slowly building my hours up to a nine hour shift. Things are a lot better, my breathing is now normal and I get a good nights sleep, but I still have the aches in both knees and shoulders. The one thing that does worry me is come the winter I will be sitting in a nice warm box with a lowered immune system just ready for all those wonderful bugs that my customers will be only to pleased to pass on to me.

[elephant]

Welcome and glad you are here, sounds like you are doing ok. Just make sure you wash your hands and keep hand sanitizer around. Let your doc know about the knees and shoulders, you could be flaring.

[Sangye]

Hi Dryhill, welcome to the group! I'm glad you got diagnosed so quickly and the treatment is working, though I'm wondering if you've been on ctx (cyclophosphamide) since Christmas?? That is way too long on that drug if so.

Your concern about being exposed to germs is valid. Make sure your doctor tests your vitamin D levels every month. Vit D is protective against flu and minimizes infections if you get them.

[Hammy8241]

Flu jab might help.

[norcalian]

Your concern about being exposed to germs is valid. Make sure your doctor tests your vitamin D levels every month. Vit D is protective against flu and minimizes infections if you get them.

I didn't know that about Vit D...luckily my rheumy has me taking a lot of it...I always thought it was just for my bones. I'm glad to hear that it has some other uses.

Do most people on here with WG get flu shots? how about the pneumovax? My ID doc wants me to get the pneumovax...but my rheumy would rather I wait until I'm below 20mg/d of pred...any thoughts?

[ArlaMo]

I just got my flu shot a week or two ago. I had the pneumovax when I was out at CC, but I haven't had another. Need to check into that.

Welcome, dryhill - hope things are going well for you!

[Sangye]

I didn't know that about Vit D...luckily my rheumy has me taking a lot of it...I always thought it was just for my bones. I'm glad to hear that it has some other uses.

Do most people on here with WG get flu shots? how about the pneumovax? My ID doc wants me to get the pneumovax...but my rheumy would rather I wait until I'm below 20mg/d of pred...any thoughts?
Make sure your doc is doing the blood test for vitamin D levels. You might need much more than you're taking. I need an unbelievable amount to stay in normal range-- 10,000 IU daily.

I don't do vaccines. I don't think the risk to benefit ratio is favorable.

[Dryhill]

Thanks for the information about vitamin D, I also thought it was just to do with my bones. I am seeing my GP this week so I will ensure that they are checking up on my levels of vitamin D.

[Dryhill]

Hi Sangye,

When my consultant tries to start easing me off ctx I started getting ill again, so he reluctantly decided to keep me on it for a bit longer (he did explain the problems and risks involved). I have one more three weekly session then I should be only having ctx once every four weeks.

I note your comments about the flu jab. As an Asthma sufferer I am entitled to receive it, but have always declined as I am also not convinced it is that beneficial. Friends of mine have the injection every winter but still seem to get flu quite badly, if anything worse than I me.

[Sangye]

If the Wegs is still so active after so many months of being on it, it may be that ctx is not the best drug for you. It should work faster than that if it's going to work. Are you seeing a doctor who specializes in Wegs? The other members from the UK can guide you to them.

BTW I love your signature quote.

[Dryhill]

No my consultant is just a rheumy, but he does have three or four of us Weggies. But when I last saw him (last month) he did say that I was responding very well now and he hgoped to have me off ctx very soon. Mind you he never suggested usinbg anything else.

Thanks for the comment about using another drug, I will mention it to him when I next see him next month.

[Psyborg]

Welcome to the forums Dryhill

[Sangye]

Dryhill, a doctor treating 3 or 4 Weggies will not have the proper skill and variety of experience required. If you took 4 of us in this group we'd look like we have totally different diseases. A Wegs specialist sees hundreds of Weggies.

[Al]

Thanks for the information about vitamin D, I also thought it was just to do with my bones. I am seeing my GP this week so I will ensure that they are checking up on my levels of vitamin D.

The subject of Vitamin D is an interesting one, and complicated, especially with kidney involvement. What you get from "vitamin-D" pills (or from sunlight interactions) is called, technically, 0,25 HO. This is also what is usually tested for. However, after processing by the liver into yet another form of vitamin D, it is up to the kidneys (mostly) to covert it to 1,25 DHO--the kind the body actually uses. But with distressed kidneys, this whole scheme is problematic. You can measure well, and take plenty of supplements, and still be deficient. This, by the way, is the simple version....

Al

[elephant]

AL, you are very informative, are you a scientist?

[ShaniBooT]

We didn't know that you should ask for a vitamin D leavel. I think Dean only takes 3000 IU daily. We will be going to the doctor on Monday and I will make a note of that. He always gets a blood test that day. W also would like to get a list of wegeners doctors that I could give my doctor to talk with. We think that Dean is the first patient with Wegeners for our doctor. Although he seems to be doing a great job. I think that he is taking Dean down to fast on the prednisone. He just finished doing the Ritoxan for 4 weeks. Dean was on 60 MG and now he is on 10 MG and his eyes and head is starting to hurt again.

[Sangye]

Things can change on a dime with Wegs. A doctor who is doing okay can find him/herself quickly in over his/her head in a matter of hours. That is not when you want to be trying to find a Wegs specialist. Find one when things are going okay.

Dropping pred too fast can cause pseudotumor cerebri (aka elevated intracranial pressure). That would cause the eye pain and headaches. I have this condition and it is no picnic. Dean should get a brain MRI to see if there is any sign of elevated pressure (the optic nerves will be swollen). A spinal tap would be in order if the MRI is (+), to rule out infection.

[ShaniBooT]

Just before we went on the Rituxan, Dean ended up in emergency he just had gotten down to 10 MG of Pred and he was getting very bad headaches and eyes hurting and he started coughing and then throwing up. Our doctor had Dean have a MRI. Dean was infected with Wegeners in his brain and he had a nodulel on his lungs again. The doctor put him on the Rituxan infusion's and put him back on 60 MG of Pred. That is about 7 weeks since he was on 60 MG of Pred. Now he is back on 10 MG. It has been about two weeks since his Rituxan infusion. We are going in to see our doctor on Monday. Hopefully he will put him back on a higher prednisone. Dean says that the headaches and eyes hurting is only in the morning when he gets up and it gets better during the day.
Barbara and Dean

[ShaniBooT]

Dean and I will be seeing Deans doctor on Monday. I will ask him if Dean needs more vitamin D. He is on 3000 right now and maybe he needs higher. I will ask if he can find out when Dean gets his blood test. Thanks for letting us know.
Barbara and Dean

[Al]

Barbara--If you like and trust Dean's Doctor, I think you should see whom he or she refers you to. If you have any qualms, send me a message. I would be happy to pass on the names of a couple people who have given me excellent service.

Al

[ShaniBooT]

What do you mean about whom he or she refers us to? Sorry were so new at this and don't understand a lot.

[Sangye]

Just before we went on the Rituxan, Dean ended up in emergency he just had gotten down to 10 MG of Pred and he was getting very bad headaches and eyes hurting and he started coughing and then throwing up. Our doctor had Dean have a MRI. Dean was infected with Wegeners in his brain and he had a nodulel on his lungs again. The doctor put him on the Rituxan infusion's and put him back on 60 MG of Pred. That is about 7 weeks since he was on 60 MG of Pred. Now he is back on 10 MG. It has been about two weeks since his Rituxan infusion. We are going in to see our doctor on Monday. Hopefully he will put him back on a higher prednisone. Dean says that the headaches and eyes hurting is only in the morning when he gets up and it gets better during the day.
Barbara and Dean
Okay, I'm glad they did the MRI. Wegs involvement in the CNS is uncommon but is generally much more complicated to treat. I know I sound like a broken record, but as we hear more details of Dean's case I have a greater sense of urgency about him getting under the care of a Wegs specialist.

[ShaniBooT]

Dean has lost most of his hearing and he has problems with infection's in his sinuses. The headaches and eyes really hurt and he is starting to cough again. Thank goodness we are going to doctor tomorrow. Can I ask where there is a Wegeners specialist in Seattle? Can Dean's doctor call and talk with him? We are at the Pollyclinc in Seattle.
Thank you so much for any information.

[Al]

It sounds like you really need a team. The only doctor I know well at Polyclinic is a family doctor (she takes lessons from my wife). I can tell you that my lung guy is excellent (the second guy, not the first), though a bit busy. His name is Jeffery Cary, at Minor and James, and he is very up on Wegener's and such. My main doctor, Robert Winrow, is a kidney and liver guy, also at Minor and James. I recommend him highly, along with Ashley Jefferson at the University of Washington. They are both extremely smart and knowledgeable, and great people as well. This should get you started. Very few ENTs are really into Wegener's. They, like every the typical neurologist, will spend months looking for another explanation before sorting out what yu already know. Let me know how it works out!

Al

[Sangye]

Dean has lost most of his hearing and he has problems with infection's in his sinuses. The headaches and eyes really hurt and he is starting to cough again. Thank goodness we are going to doctor tomorrow. Can I ask where there is a Wegeners specialist in Seattle? Can Dean's doctor call and talk with him? We are at the Pollyclinc in Seattle.
Thank you so much for any information.
Hopefully some other members out west will post the locations of Wegs specialists. There are newer centers forming out there. You will likely have to travel.

Meanwhile, you can go to the Vasculitis Foundation website and look up VF Consultant doctors. They will consult with Dean's doctors free of charge. That's the good part. The bad parts: they aren't Dean's personal doctor, you don't have the ability to speak with them or ask questions, and you're at the mercy of your local doctor's ability to communicate and understand the recommendations.