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Thread: New WG patient

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    Default New WG patient

    I will try and get it all in one post, as I see a lot of you want details (as do I).

    Name: Mark Reinhard
    Age: 38
    Live in: Green Bay WI
    Job: Purchasing Leader (office)
    Diagnosed: 3-1-10
    Doctor: Marlon Hermantanio – Rheumatologist (says he treated 5-6 WG case)
    Second opinion: Not yet, but efforting

    How it started: Early November of 2009 I started with cold symptoms, no cough, just runny & congested nose. That got worse and worse until I was completely clogged. I went to see my regular doctor(December 23) and she gave me some nose spray and told me to take calritin-d. Tried that and nothing. Went back in 2 weeks for follow up and was sent for a CT scan. Results for the scan came in and was referred to a sinus specialist. The sinus specialist (Dr. Diane Mayland) put me on a taper dose of Prednisone for a week and also gave me some spray and amoxicillin. That brought the inflammation down until the prednisone was gone. Went back end of January and was told that sinus surgery was my best option. Ok, so this has been bad but I wanted to put it off for a few months as I wanted to finish bowling season and coaching bowling and basketball.

    Was going to have the sinus surgery early April. Then my sinuses really got bad and I said “ I have to do this now” and set my surgery for 2-24-10. On 2-11-10 I started to feel tired and very sore legs and hips at work, early in the day. I left about noon and went home to bed. Next day, I didn’t feel any better, so I worked from home. Saturday, I thought I might have strep, so I went to urgent care. Not strep, but gave me some prednisone and some pain killers. The next week was hit and miss until Thursday I was not feeling well at all. Very sore and fatigued. I woke up Friday (3am) and felt as if I were run over by a truck. My wife took me to the ER on Friday AM. They put in an IV and gave me some pain meds (ok but nothing to write home about). After chest x-rays, blood work, pee in a cup and exam--- go see a Rheumatologist. Ok, I am 38 how can I have arthritis? My wife and I left with a scrip for pain meds, a referral and a wonder if this ER doctor was wacked out. Saturday and Sunday were a little better because of the pain meds, Monday about the same but my wife was pissed because I was not feeling better, so back to the ER.

    So I go back through all the same tests and an EKG, and the answer from this doctor---Go see a Rheumatologist. Ok, done. We set up an appointment for the next day as now my sinus surgery is only 2 days away. I go see DR. Hermantanio, and he gives me the once over. Tells me it could be 20 different things, and sends me for a blood test . Come back in a week.
    Go in for sinus surgery, on Wednesday, walking like a 80 year old man. Get there at 7 am because the first CT was not good enough ($$$) so the need a new one (Striker Scan). My card says surgery scheduled for 9:55. Nurse comes in at 9:45 and we ask when I will go in to surgery and she says 11:45, and the doctor is running late. Great. So lay around and listen to all the other people get prepped for surgery, good times. Now, done with the surgery and recovery time and out of the hospital at 4pm. Go see the sinus doctor in a week.

    Thursday through Monday, still not feeling good. Joint pain, fatigue, sinuses ripped up. I think that now the sinus thing is done that all of the rest of this will go away. Then Dr. Hermananio calls, and leaves a message on my voice mail, “your blood test came back positive for WG, we will discuss more tomorrow during you appointment”. Wham, right in the face. So guess what I do? Run to the internet, find out that this could kill me, and start planning my funeral. I wait until my wife gets home to tell her and we both spend an hour crying on each other. (Her mom died of kidney failure, lupus about 6 years ago)

    So, now it’s Tuesday and my wife and I go to see DR. Hermantanio. We go In with a lot of questions. He explains the disease (limited at this time), tells me the treatment plan, and sends in the scrips. We ask how many cases he has had—5 or 6 , ok not his first go around, good. We ask a lot of the other standard questions and get the standard answers. Ask about a second opinion, he says fine, where do you want to go, we say we will get back to you. Now my wife asks a few questions about remission and if this is like lupus, and the doctor was short with her and didn’t look at her, she was sitting behind him. Now my wife thinks he’s a quack and really wants me to seek a second opinion. I said that’s fine, you set it up. To me, even though he is not very personable, he seems to know the disease and how to treat it.

    Alright, here is where I am today: been on the meds for a week and a ½ and it has been up and down. Most days energy until noon then out of gas. If I push longer, I am shot the next day.


    Med list:
    Prednisone 40mg twice a day
    Azathioprine 50mg twice a day, the 3 times in another week
    Bactrim DS 800/160 twice a day
    Gabapentin 300mg 3x a day
    Also taking, calcium supplement, acid blocker and fasomax(1 every 2 weeks)
    This sounds like a treatment that others have been through, so I feel comfortable right now. Doctor says it may be 4-6 weeks before I feel noticeably better. I hope I start feeling better.

    Now for questions:

    Anybody have any success with a prescribed sleeping pill on these meds?

    What do you take for pain?

    I missed my afternoon meds because I was vomiting, and felt like that bus ran me over again, sound normal?

    Any suggestions on how to beat the fatigue?

    Does it get better with time?

    I feel about 75% in the am and about 50% after noon, what can I expect and when?

    If you read all of this, thank you. I have read a lot of yours and plan to be here often. I hope some of you can weigh in on my situation, I look forward to it.

    Mark Reinhard

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    Hi Mark, sorry you had to come and find us.

    First thing I would say is that you really should be treated by a vasculitis specialist. There are people who will come along soon to tell you how to find one. You also need a positive diagnosis, this can't be done by blood tests alone, they will only give an indication that you may have Wegener's, but there are other diseases out there that give similar results. A positive biopsy from your nose would be good (perhaps not the right word? )

    The medication you are taking is quite mild, you might get away with this because your symptoms are fairly limited and it is early days, but the consequences of Azathioprine not working are quite serious. I went from sinus problems and joint pain to full blown renal failure in two weeks! You can see why a specialist is a good idea.

    As far as prognosis - treated correctly, you have a very good chance of going into remission (there is no cure) and living a fairly normal life. I only say "fairly normal" because few of us get away with this unscathed, but you can reach an acceptable New Normal. For some this can take only months, for others it is many years.

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    Hi Mark,
    Welcome to the group. I'm glad in your internet searching that you found us! I'm sure you don't feel very lucky right now but boy, did you get diagnosed fast from the onset of your symptoms. That's very unusual with Wegs.

    I have to get a bunch of things done right now and I know others will weigh in on many of your questions. I do want to advise you to get a Wegs specialist involved asap. Your local guy with 5-6 cases is no way able to manage Wegs. Basically he's getting his treatment info from the internet, textbooks and research papers-- NOT from direct experience. Since you're in Wisconsin, Mayo Rochester (Minn) is the closest major center to you.

    It's best if you can go yourself and receive direct care from a Wegs specialist. They will do a thorough assessment and generate a treatment plan for your local guy to carry through. You'd have direct contact with the Mayo doc, which is the best case scenario.

    Second best is get your local doc to consult with a Wegs doc through the VF. You wouldn't have direct contact with the Wegs doc. This is much better than nothing, but I cannot emphasize enough how important it is to have the Wegs doc treating and contacting you directly.

    Here's the contact info for the VF, where you can also find the number for Mayo.
    Contact | Vasculitis Foundation

    If it were me, I'd be on the phone with Mayo today.

    Quack or not, your local guy is way out of his league with Wegs. He may not even know it. I really don't like that he was rude to your wife. Dealing with a serious illness like Wegs takes a village. She's your village and he was out of line. That may be an indicator of how he'll be with you in the future, as well. My original rheumy was the same way.

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    hi mark
    you wont go far wrong if you listen to advice from jack sangye elephant and plenty more that follow they have helped me on many occasion confusing of what ? i sometimes only make it through the first few hours of day before i wiped out
    take each day as it comes now
    hoping tomorrows better and some days it is im working towards new normal and these guys have helped me to believe it is possible they have been through so much
    keep your chin up DEE x

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    Does anyone else have soft tissue pain? I have joint pain (hips, ankles, knees, and sometimes shoulders, wrists and elbows) but i am also having muscle and soft tissue pain. Calves, thighs, ect... Does this happen to any of you, and how do you deal with it?

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    I've also had soft tissue pain, but not that much. Did you have it before you started the meds?

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    Hi, I so wish somebody could give me a name of a doc in Vancouver,Canada, area, that at least has heard the name Wegener. I am too dumb to find one!

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    I have a lot of soft tissue pain. I used to take ibuprofen, but discontinued that a year ago for fear of ruining my kidneys. I don't take anything during the day, and have learned to stuff the pain somewhere in my subconscious. I take arthritis strength tylenol (2) at night in order to sleep with it. It comes and goes and does not really seem to follow the pattern of my flares, at least I think so.

    I had terrible pain in my left thigh, knee and calf for years, but it seems to have moved on these days.
    I'm sorry for your pain, Mark. It can be a terrible blow when it descends upon you so quickly - like having a bad case of the flu.

    Hang in there, and know that narcotic pain medication is most likely not the answer. It may take awhile for the gabapentin to kick in if it's going to help you.

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    Thanks everyone for the advise and well wishes. I hope all of you stay well also. I will be here often and keep you all in the loop. Glad to have all these new friends. Thank you all

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    Welcome, Mark -- Sorry you had to find us but glad you're here. What the others say is right -- get yourself to a specialist that can work out a treatment plan. I was only diagnosed in January, but have already been on one medication (mtx -- poorly tolerated by my liver) and have had surgery to correct a subglottic stenosis (narrowed windpipe). In my case no biopsy was done before diagnosis but I have two very clear markers of the disease -- the bridge of my nose has collasped (saddle nose deformity) and the aforementiond SS. I feel pretty good most days although I have a lot of ankle pain in one ankle that makes walking difficult and joint pain. I feel older and more out of sorts than I should at 44, but compared to many, I am doing all right.

    These are the kindest, most knowledgeable Weggies that you can find on the Internet (and it's highly unlikely that you'll meet any in real life). Settle in and enjoy the company -- that's what I did.

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