Any supportgroup or WG doc here in Vancouver?
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Any supportgroup or WG doc here in Vancouver?
I remember talking to a WG patient by the name of Monika Martens in Kelowna and I think she was the founder of the Okanogan WG support group. As far as any docs go I have no clue. I can get Monika's number if You like.
I certaily would, thanks. Kelowna is just a couple of hours drive.
I don't know if these numbers are current. It was about 6 or more years ago I talked to her.
250-222-3163 or 250-869-0924
You might want to get a hold of Donna Wall with the Canadian support group.
877-572-9474 or 519-653-8030
I think Donna may know of a Wegs specialist in Vancouver area. I heard of Simon Carret in Toronto.
Jolanta may know of someone as well or even Germaine. There are a few others I cant remember right now that also have WG in BC.
Thanks a billion and while I remember may this year be a good one for you.
The nurses who tended to my toe gave me a doc who was supposed to be WG spec, but by now I think I know more than he :)
Moyan
They probably think any rheumatologist is a Wegs specialist. Regular rheumys can handle a lot of autoimmune diseases but not Wegs. We're just too weird. :)
My last note seemed to disappear, so here it is again maybe. The general contact for the support group in Vancouver is WG Support Metro Vancouver wegener'[email protected]. I also have personal email addresses which I don't like to post on line, if this doesn't work. Perhaps Andrew can help us with this.Quote:
Originally Posted by moyan
Thanks!! You can call me collect if you want. I have a peculiar telemarketer answering message, so let that go throu. 778 278 3004
I always bemoan not having a specialist, i don't think there are any real specialists in Vancouver, only rheumys that treat a few weggies.
Hi Jolanta, Germaine knows about a supportgroup in Vnacouver and that would be a step in the right direction. She gave me an e-mailaddress, but unfortunatly that took me nowhere. Asked her to call me collect. Phil B also gave me a couple of # to people with WG. Still trying them. One is not active any more but the other one might be. Have had a bad month with spinning thoughts :)Quote:
Originally Posted by jola57
Hope you are all right.
Jolanta-- have you called or emailed the VF to ask for help? Many VF docs consult internationally.
moyan, I am here if you ever want to talk, just a phone call away anytime of the day or night. If I can't answer I will call you back. Keep well and positive
Thank you Jolanta, I am in a pickle right now, despite never having had a full remission, I think I am having a flair. Many small signs and lungdoc said yesterday that inflammation factor is up. And no reliable doc!
If we could find that supportgroup, maybe we could get a doc to become a wg specialist. I have an ENT app. Wed and will talk with him, he seems very knowledgable and has had or have some wg patients, more than 10.
Today is not a positive day, but there is one good thing about that: Tomorrow is gonna be better :)
Sorry to hear this Moyan. It's ok to have a not so good day, like you said tomorrow is gonna be better!
Hi elephant, thanks. I hope your worst turmoil is over and events have quieted down a bit. Actually, I am not sad any more, took some extra preds and got some immidiate energy. I always wonder how I would know if wg acts up, and now I know: It starts with I don't want to get up in the morning and then I leave the dishes spread on the counter! So now I have a visual alert :)
Moyan, please ask your doc before taking extra pred. It's dangerous....
I GUESS WE ARE ALL HAVING A NOT PARTICULARILY GOOD DAY.
Happy Easter to all and may you have a bunny day tomorrow. I am picking up my son tomorrow, go to the Polish Church to bless the eggs (polish christian tradition even if its pagan) so I am hoping that tomorrow is definitely a better day.
I had a couple of hours today that I felt less dead. Then dead came back. I only lowered pred by 1/4 mg yesterday and today. Wondering if I'm less dead because of that!
Sangye what dose are you on now. I can't seem to taper from 8, I have been alternating with 7 for over a month. Sheesh can't believe it has been 3 and half years of pred.
I've been on 4mg since September. It doesn't sound like much, unless you know that each 1mg acts like 10mg in me.
My Wegs doc suggested tapering by 1/2 mg or even 1/4 mg. I decided to start by dropping to 3.75mg each day and see how it goes. If I'm okay after a few days I'll alternate 3.75mg and 3.5mg. He said I could do it any way I wanted, as long as I don't drop more than 1mg per month.
Maybe alternating between 7 and 8 is just too big a jump for you. What happens when you do-- do you get Wegs symptoms or what?
Sangye and Jolanta that is what my rhuemy thinks, if I can't seem to wean off the prednisone slowly then it means I am flaring...my ears got full and sinus more stuffy. Hope I made sense. My blood pressure was low today 94/73.
I start to ache all over, my fingers, wrists, it feels like last year when I had a flareup. So I am trying to go very slow this time. I will do as you and half the 1mg pill and maybe that will work
last year it was around 5.75 that I flared
Moyan, I agree with Sangye about upping the pred on your own. I have done it and think I may being doing worse now because of it.
Jolanta, have you had joint involvement with Wegs? If so, can you tell the difference between Wegs joint pain and pred-taper joint pain?
I'm assuming I'll be able to tell the difference. For me, the Wegs joint pain is very distinctive. Between the 3rd and 4th ritux infusion last month, I got weird random joint-ish pain that lasted a day. I can't even call it joint pain, really. It came on suddenly and migrated down a finger or wrist very rapidly. Kind of like I was under a scanner or something! It wasn't nerve-like, either. It came and went. I knew it wasn't Wegs, though.
Thank you Phil. The reason is it is easter and no doc is "at home". My wg attacks the kidneys so.... When the infection in my foot acted up, both the ER doc and my internist recommended to double the pred dose.Quote:
Originally Posted by pberggren1
Will see a doc as soon as possible, but 4 hours waiting in ER is not appealing, just to hear add pred, LOL
The emergency rooms are aweful. I called my hospital and told them that I got terrible care when I was there. I gave them my piece of mind. When I stayed in the ER the ER physician tried to kick me out and I told her, " Hey, I did not ask for Wegeners disease! This is a horrible disease! I said some other things and she got the picture and started to be a real doctor! I even told the other doctor who was trying to blow smoke up my hemorrhoids and he knew not to mess with me. So I have become a very tough Wegener's patient. You really have to fight for your health care rights and be an advocate to yourself or have someone do that for you.
That's so true! All of my ER docs have had the "I can't believe you have a dx of Wegs and you're still alive" look in their eyes, though. They take Wegs seriously but they don't always take the complications seriously. So if they rule out active Wegs (eg lung hemorrhage) they think the rest is a walk in the park. They don't understand that I'm in horrible shape on a regular day. Every so often I get a doc who says "You know best-- what needs to be done?" It's such a relief, because if I don't know what to do I can just let them take charge.
Elephant, maybe you are training to become a mom of teenagers :)
Sangye, I so envy you hav ing the knowledge to suggest what to do.
As of now I will mention cellcept instead of the azathioprine, seems to be worth a try. And ask him to look up pred, does an internist often prescribe that?
Moyan :)
I am a tough little elephant. Usually I am sweet as pie and very cheerful! The good doctors will ask what can we do, just like Sangye stated. I really don't want to get that way, It is too bad that I have to stump my elephant feet to get their attention. "Wake up and smell the darn coffee." So good to get steam out!
Moyan - Regular gps do prescribe steroids. Probably too much in fact. All docs use them to bring down inflammation, and I know that recently, when my husband had strep they wanted to start a course of steroids rather than antibiotics. He argued with the internist a little and got the antibiotics, which cleared things up in a few days.
Moyan, yes all docs can prescribe pred and are very familiar with pred (including its side effects/risks). You'll likely have to be the one who keeps count of how much you're on and for how long. All of us should keep a list of our drug histories including dosages, though.
Though I didn't have a clue about Wegs or treatment, etc... when I began on this road, I did have my training in diagnosis, diagnostic techniques (eg CT), etc.... It has served me well. It's why I try to help on here a lot. But yeah, if I didn't have it, I'd envy someone who did.
Jan-- steroids for strep? Good grief! You must have been horrified. I bet your husband gave him an earful, knowing what casual prescription of pred has done to you. Last year there was a newspaper article about how many people in the US are immune-compromised. I don't remember the number, but it was surprising how many were on pred for one thing or another. Even though I'm saddened by the damage pred did for you at "safe" dosages, I'm sure glad you're on here to inform people about it.
Although the doc-in-the-box prescribed it to him way before I was dx (probably a year ago), even I was saying at the time -- "don't take that, my pulmologist says that it's not to be used lightly because it's a potentially very dangerous drug" -- and it's not like he was allergic to antibiotics or anything! My daughter also had (real) asthma, which she outgrew, and I remembered her pediatrician being furious that a doc at the ER she went to (having trouble breathing) gave her a prescription for such a huge dose of pred. So much so that she called him, the pharmacy told me it was a huge dose (the pharm said something like ''Is your daughter 100 lbs" -- she was maybe 7 at the time and doesn't weigh 90 now, at 12), and I called him.
The asshole (pardon my language), blasted me and said, "I gave the maximum dosage that is allowed by the PDR...if your doctor wants to question my judgment she should have opened her office and seen your daughter herself." Both times my son went to the ER, he was given pred for croup (which now they don't even treat really -- it will go away on my own). My ped is a youngish doc (my age) and really stays on top of the medical journals. I think that's why she was always extremely agressive on limiting the use of pred at all times. She is the first person who explained to me that pred use can even interfere with the 'fight or flight impulse', impair your judgmeent, shut down your own adrenals -- all things I didn't know.
As my rheumo said, "you saw all those great pictures of RA patients rising out of their deathbeds after pred was discovered at Mayo...but you never saw what they were like 10 years later." It does make you wonder what JFK would have been like if he had lived, although he would have had to have been on it chronically for Addison's. It clearly saved his life.
There is a movie on this theme, a great one and very good lesson
I know what you mean Moyan. By the way, what movie are you refering to?
Very well put Elephant, Sangye, and JanW. I agree with you all 100%.
Hi Phil, I have no clou of the title, but I think Jack Nicholson played the doc. All in an institution where patients were severly mentally handicapped. Some med did wonder, but eventually effect stopped.
LOL-- Moyan, I think you're mixing "One Flew Over the Cuckoo's Nest" with "Awakenings." I combine movies sometimes, too! It can be hilarious.
Our movie would be called "Awakening the Cuckoo's Nest." Sounds about right. :D
Excellent idea , Sangye. Not "Cucko's nest" but "awakenings" could be it. You see, I take prednisone.........
LOL-- Because I'm on pred I couldn't remember the title of Awakenings. I googled "Psychology Movies" and got a list of movies involved psychology!
What else can we blame on pred? :D
The corn on my toe?!Quote:
Originally Posted by Sangye
my hubby could name a few ive left the deep fat fryer on twice ........ left things out off the frezzer i was suppose to be putting in ........leaving the bath taps on.................
and others......my answer DID I ?.............. I DONT REMEMBER .....ITS ALL THE PREDS IM ON ................. :) DEE x
It's like we become obsessive compulsive. Checking to see if we turned the iron, stove, water off. I check and then I have too checked them again. That darn Prednisone!
to true elephant i forgot about the iron and oven done that too !!! still on 40mg too ive got no chance it getting better yet :) DEE X
OOPS brain malfuction added to list by getting better i mean in the memory department hopefully it will help this recent wg flare !!! does not help in the thinking departmrent either :) DEE x ps but it has heiped me feel far better than i did three weeks ago
hope you are recovering too.
Thanks Dee. Back at you too. :)
I've done things I never did before, too. I have a tiny kitchen space. The two counters are 1ft long and 8 inches deep. So... no room at all. The little electric oven winds up acting as additional counter space sometimes. I've always had a gas oven and never ever kept things on top of it for fear of a fire. I'm usually so careful in a kitchen.
One day I left an empty dinner plate on the back burner and put a pot on to boil on a front burner. Turned on the wrong dial, and a few minutes later "POP!" the plate broke in half. About a week later, I did the same thing, but this time it was a bag of birdseed on the back burner. Actual flames, burning plastic, and 3 lbs of birdseed that flowed like a river into the area below the burners.... The kitchen is in the same room that I live in, so I was only 10 ft away--thank goodness! Ever since, whenever I turn on a burner, I read it out loud two times or more. "FRONT, REAR."
Too funny! "Front, Rear." :>)
Omigosh...SEE?? I didn't even notice that!!! I'm skeered.
That's OK Sangye. No one will hear you. Just your two dogs. They are probably use to that already. :)
Yeah, they're used to me leaping out of my seat and putting out flames.... Okay, it was only flames once but still. I had an impeccable 46-year history of "no flames."
I am so glad to hear that I am not the only one forgetting things. I was starting to become a little paranoid, even started writing things down for fear of turning around and not remembering.
Along with the physical, the mental sluggishness and forgetfulness has been a big reason why I haven't been able to work all this time. I know I seem "together" on this forum--thank goodness you can't tell how long it takes to write a post or how many times I edit it-- but in real life I'm mentally mushy. No way to take care of patients in that state.
I have my iPhone with me all the time and jot down everything i have to do, as it is I have missed 3 of my meetings in the last few months. It is good they all understand and I live only 25 minutes away from most of them and could still go to the meeting although a bit late. sheesh
I agree with the mental sluggishnesh. For easter weekend I thought it would be a nice idea write up riddles for the kids to find their easter treats. I did up 10 riddles, we had 3 teams of 2 on each.
The first clue would lead to the next clue an so on, I had a really hard time of putting the clues in the right locations, I kept putting the clue with the answer locations as opposed to the location before it. My brother inlaw ended up putting all the clues out because I just could not get my brain to work that way. I was a sorce of entertainment for the rest because I would look so perplexed, but it was actually quite scary. I think they were scared that they would have as much trouble as I was having. My dad is in Extended Care in the hospital, he has alzheimers and dimentia so we are all a little worried about our chances of inheriting it.
Cindy don't be so hard on yourself. I forget stuff everyday. :)
Cindy, your mental sluggishness and difficulty with cognitive tasks is totally normal with pred. I can only imagine how much the threat of Alzheimer's lingers in the back of your mind. If you're really concerned, just go and get tested. I thought I had something wrong at the end of 2008 and went to JHU's Memory Center. I saw the head doc and he said it was pred. (I'd been off it for about 2 yrs but knew it was still affecting me physically and mentally) It put my mind at rest to do the testing and hear that I was okay.
Chronic depression--even mild-- can cause also cause it because the brain chemicals are depleted. I think I mentioned that already, but I don't remember. Ironically. :)
I used to play a lot of computerbridge after retirement, but with a predhead I don\t want to expose partners to that :)
Cindy, I used to make up "treasure hunts" for my childrens birthday parties. I even tried them at work(day care). I found them very hard to set-up. I had to go through the course a few times to make sure the clues were in the right order. It would take me 1/2 hr to set-up and the children 2 minutes to solve it, but they loved them. This was well before pred. (if I remember correctly one of the 1st times I did a treasure hunt I had to tell them where it was because I had it so messed up.)
I know of a person in Vancouver. I've emailed with his parents. I will try to follow up with them and see if I can give out their information.
It might be nice to have a support group close to home
Hi Coco:
How are you doing lately?
hi moyan,
i have a rhuemy, Dr Michael Ramsden, in new westminster right across from Royal Columbian Hospital. I have been going to him for 2 yrs now and was diagnosed 1 yr ago today with WG. He has been very good and on top of things with me. I also have a respritory specialtist in surrey, Grant McCormack. both docs are friends and i have been very happy with both of them. My ENT specialist.....well all
I can say is that I need a new one!
If you want I can forward the phone#'s for both docs. My WG has been active and I have just finished 4 rounds of RTX and am tapering off the prednisone from 50 mg and am currently at 35 mg.
My rhuemy has several patients with WG and is associate, I think his wife, also have several WG patients. From what I have seen, he nows about the treatments and gets the ball rolling asap. I was also was on a IVIG (immune globulin) treatment as I had bleeding in my lungs.
Let me know if I can help in any way.
thanks. Harvi
Harvi, our dear Moyan passed away some time ago. She was a real treasure.
thanks sangye. I feel horrible! I wish that I could have done something sooner.
take care and once again thanks for letting me know.
harvi
Hi Jolanta, I haven't been on this group in ages, and it is nice to see the progress everyone seems to be making and nice to see your picture. We now have a support group in Nanaimo. The Next one will be March 10th at 2 pm. It is fairly close to the ferry and I would pick you up and bring you to the group, or send my husband as I might be setting up the room for the meeting. The contact email for our group is [email protected]. I'm not the monitor, but you could ask Jim for my info. We meet every second month on the 2nd saturday of the month.
Hi, Germaine--it is nice to know another Weggie in the area (I am across the border, but can nearly--but not quit-- see Nanaimo)! Can't promise to get to regular social events, but you never know...!Quote:
Originally Posted by germaine
Al
Hi Germaine, I look forward to meeting with you all in March, it's a date :)
Harvi, how were you approved for RTX, my Rheumys says I have to pay for it. It seems my GFR is 35, so there is a bit of a panic that mtx is not working so RTX might be next
Jolanta, what is GFR?
Hi Jolanta,
I see you live in Canada. Maybe this article pertains to you:
ROCHE | Approval of first-ever medicine for rare blood vessels diseases offers hope for Canadians
Hi! My mom was recently diagnosed at 71. I am looking for any support groups, or contact information on specialists in the Vancouver or Okanagan area. I am up in Kamloops, I am finding limited resources so far and dealing with BC Health Care can be taxing.
Thanks in advance :)
Hi howattzer,
I saw a post from moyen's thread and my heart skipped a beat.
I'm sorry for your momma, but the first thing teveryone'll tell you here is to get a doc that gets it, and the team from CanVasc seem to be pretty on top of it. They consult with each other and with specialists at Mayo and CC, so you'd be in good hands. My doc is on there and she's a godsend. InformationCanVasc
I hope this helps and best of luck. There are a couple of members on here from Vancouver and surrounding area, but they will let themselves known for sure.
All the very best.
Howattzer, welcome to the family.
I used to be contact with a Monika M from Kelowna. Her number is 250-869-xxxx. (contact me with a private post for the number) I forget if she had a good doc in the area or not. I would try to give her a call and see what she has to say. I know she has had Wegs for well over 12 years. Does your mom live in Vancouver?
There are others on here from lower mainland and the Island. Jolanta, Pmarsh, Germaine, etc.
I wish I'd thought to post this sooner. There is a meeting of the Vancouver/BC WG support group this evening in New Westminster. Here is the info:
june 12 @ 6 pm
La Spaghetteria Restaurant (private upstairs room)
232, 6th St
New Westminster, BC
There is a Facebook wegeners granulomatosis group with details about the support group. It has 18 members plus family members/caregivers.
I'm doing my utmost to go tonight! (I don't like to tempt fate by saying any plan is certain, but I INTEND to be there. Anyone else on here who lives in the area, sorry if you weren't aware and I didn't post this sooner. I will tell the group about this forum; I'm sure they know but just in case. I you can make it despite last minute notice I'd love to meet you. And if nobody there minds having their pic posted I'll try to get a group photo to share. Cheers!
Have there been any meetings of Lower Mainland folks lately? (The previous post was 6 months ago.) I just got diagnosed on Dec. 19/14 and would love to connect with others in person at some point.
- Susan
Hi Susan, welcome. Sorry to hear you've got the disease but glad you found the forum, which will give you lots of info and support. I haven't been on here in too long a while but hope to catch up with posts etc when my kids are back in school. I've been in touch with one of the support group leaders here in BC and she said they usually plan something in mid- to late January. I will dig up the group contCt info and post it here for you so you can ask to be added to their list. When I receive details of the event I will also post it here. Whereabouts are you? And who is your WG doctor? I'm in Ladner but I see Dr. Jason Kur in Vancouver. I've also been to Dr. Robert Rothwell in New West, who treats many Of the group's members and seems fantastic. Unfortunately I saw him for my insurance issue (hired by my insurer to do an independent medical evaluation), so can't go to him unless or until I settle the legal matter. If you're looking for an expert he would be a good choice if he's still taking patients. I look forward t getting to know you and hope you're feeling okay.Quote:
Originally Posted by duffybear
Lisa - Thanks so much for responding so quickly (yay!). As mentioned, I was only diagnosed about 2 weeks ago, and kind of by accident, so I don't seem to have much of a plan at this point (viz. no WG doctor, hard to find a few days before Christmas!). (Long story short - progressively sicker and sicker in Fall 2014 with sinus problem, cough, laryngitis, sinus infection, never got better even after antibiotics and 1 month off work, sudden major joint pain onset, swollen thyroid, gums all swole up, finally saw ENT on Dec. 12 who freaked out over crusting in my trachea, sent me to VGH ER - I live in Vancouver - where I had bronchoscopy 4 hours later, respirologoist saw me Dec. 19 and gave me diagnosis, put me on prednisone (that's all right now), am due to go back to respirologist on Monday Jan. 5. I know I need to hone in on them about who I should see, also - although respirologist described my condition as "mild", do I need other meds? Etc, etc.) Thanks for the names of a couple of rheumatologists here in town - my GP (in her 50s) has never had a patient with this. At this stage, the prednisone has helped with about 90% of my symptoms (thank heavens, I was SO sick), so I'm not feeling too bad right now. I look forward to any updates you have on a get-together!
How were you diagnosed? Hopefully someone ordered bloodwork so they ensured your kidneys are ok. Usually you are started on one more drug along with prednisone. The sooner you can get started on an immune suppressing drug and tapering down the prednisone, the better. The respirologist should know who to refer you to. If not ask for the VGH rapid access clinic for autoimmune arthritis.Quote:
Originally Posted by duffybear
There is also a group of ENTs at VGH otolaryngology / head and neck surgery who seem to be the right people to see for upper respiratory WG... Dr. Scott Durham is the one I see, and he was teaching his students about the protocol followed by Dr. Lebovics in New York who seems to be the leading expert. So, although I don't love his people skills, if your doctors don't know who to send you to he might be a good bet. I've also heard of one at St. Paul's who is supposed to be great, and his name is Dr. Amin Javer but apparently there's a long wait list to see him.
Finally, there is a list on this site and the vasculitis foundation canada site of experts connected with the vasculitis foundation. I'll see if I can find and post it here. The reason I'm giving you all these names and info is that having a doctor or team of doctors experienced with WG is crucial. You're so fortunate that that ENT followed his instinct and you got a quick diagnosis. Now you need someone who really knows what they're doing to treat you and hopefully get you into remission. I had Undiagnosed symptoms for years and am still struggling to get better symptom control, although I'm fortunate that i seem to have 'limited' WG (not affecting my kidneys), and my respiratory issues are under control.
Keep us posted on your appointment. Maybe we can meet for coffee and chat one day. I'm in vancouver all the time to see my doctors there.
Wow, a lot of Weggie Angels on this thread. Moyan was the first Weggie I got to know a little to pass away unexpectedly.
InformationCanVasc
Here's the CanVasc page that has some of the most interested Vascie docs in Canada.
It is with Dr. Pagnoux and Dr. Yacyshyn that we've submitted our survey results (the one we all submitted to and got almost 1000 Weggie replies) as a research paper.... I just saw Dr. Yacyshyn at the ski hill two days ago and she told me that we were denied publication in the Journal of Rheumatology, but they're going to keep trying.
Best of luck to all in 2015. May this be the year something miraculous happens in terms of awareness, research, findings... or all three.
Hi Lisa - I saw the respirologist at VGH on Monday, he prescribed methotrexate (which I will start tomorrow, I'm a little worried about the side effects, but the current dosage is low), as well as some prophylactic anti-fungal for my lungs that is WILDLY expensive. (Being a respirologist, I guess he worries about lung issues - but I need to talk to him - I can't afford $100/week, and that's AFTER insurance has paid their portion). He set me up with the rheumatology department at VGH; my appointment is next week. (I'll send you a private message - I think you have a dog and maybe we could walk the dogs together one day. No point dragging everyone else through our schedules...:biggrin1:)
I am not being sent to a specialist and live in Surrey BC..going to a rheumys which I don't think they know what they are doing. I shall soon find out how this doctor wants to deal with my treatment on Sept 25/17.
Hi duffybear
I just ready your post and I live in Surrey BC. I am just wondering how it went seeing rheumatology? I see a respirologist for COPD just wonder if I should be calling her to let her know about this new disease GPA. I would love your feedback and to hear about your personal experience if your willing to share..thank you
I live in Surrey BC. Is there anyone in my area? Would love to chat
Hi Susan, I'm in Ladner and replied to your pm. Whereabouts in surrey are you? A close friend of mine is in south surrey. I'm away right now and will be in touch in more detail when I'm able. In the meantime, please ask for a referral to a Vasculitis doc. There are some great ones in Vancouver--Dr. Natasha Dehghan runs a Vasculitis clinic at Mary pack Arthritis centre after doing a fellowship in Vasculitis. I believe she also has a private practice. i have seen her on occasion, but my regular rheumatologist, Dr. Kur is also good and starting me on rituximab next week. There's also a really good doc in New West who has helped members of the support group. (There's a local support group through the Vasculitis foundation of Canada. I'm not sure how active it is as I haven't heard from them in some time.) His name is escaping me but if you Google rheumatologists or wegeners docs in new west, he's the guy with all the amazing recommendations. Many local weggies credit him with saving their lives. If you're not yet being treated, consider it urgent to get to a good wegs doctor. I will be in touch again soon. Hope you're doing okay. I don't know much about your disease or history yet but query whether COPD could have been a misdiagnosis when it was actually wegeners all along?
Everything Lisa said, I second.
Great advice.
Great info on docs.
Great lady.
With someone like that in your neighbourhood Susan, you will do great.
This group (on here) saved my life by forcing me to look for a Vasculitis specialist. I was sick and tired and it seemed like an insurmountable task at the time, but I did, and it was the best thing I ever did. The best advice I ever got. The best advice I ever followed.
This one single piece of advice was the most important and valuable advice I ever got.
Best of luck.
It's always great when you have other Weggies backing you up.
Thanks, Marta! I have a ton of admiration for you as well. I'm sorry I've been AWOL for so long. Phil's passing made this a difficult place for me to be for a while, and then Life just got crazy and I figured I'd hear any major news on fb. I now realize I need more than the major news. I also feel like I should support new members like you all supported me. So I'm glad Susan reached out and that other members let me know she needed a local contact. It's nice to be back here. I'll have to catch up. Maybe I'll use my infusion time on Tuesday to read all the recent posts and threads.
Jolanta, Susan, anyone else in the Lower Mainland BC area: Woukd you be interested in meeting up for an informal support group/chat at some point this fall? Just coffee (or wine) and visiting with others going through similar stuff would be awesome. I know it can be tricky to find a time at which everyone who wants to come feels well enough to make it, at the same time. I've often wished for a local friend who really gets it. I am fortunate to have an amazing bff who deals with navigating the world with very little vision (legally blind but has a fraction of vision and compensates for what's missing so most would never know). She is hugely empathetic and understanding, and gets it as much as anyone possibly can, other than someone going through the same (or almost the same; every Weggie seems to have different symptoms and story, but we're similar in the inconsistencies as well). Anyways, let me know. This coming week I'm starting RTX while my kids start school. Maybe mid-September we can get together a small group of locals. I can ask the other mom I know in Ladner if she's interested as well. I thought I'd post here so anyone else looking for a group would find us.
There is a local chapter of the vasculitis foundation canada but I've heard nothing from them for many months. I'm afraid that maybe the woman who runs it and plans the meetings may not be feeling well. If I do get an email or invite, I'll share it here. If they're active I would imagine they'd plan something in the Fall.
Hello
I am very interested in meeting up for an informal support group in the fall. I live in Surrey near Gateway Sky train station and live in a Co-op. We have a hall here we can use or even my small place :) or a restaurant. Meeting others with this will really help and I won't feel so alone. Looking forward to it and hope others join us :)
Hi Lisa, Happy New Year to you and everyone else here on the site. I'm been out of touch for a while just trying to deal with dr's etc. I am still looking for a support group here in the Surrey/Vancouver area. If anyone knows of someone running a group please do let me know. I got to meet Dr. Natasha Dehghan and she was amazing, but she wants me to continue seeing the rheumatologist in Surrey that I saw three months ago. So kind of back to square one looking for support. Still would love to meet up with you Lisa when the time is right for you.
Finger's crossed I can find a support group soon and be able to move forward.
Hey Sue,Quote:
Originally Posted by Susan55
I didn't get the private message you said you sent on here. But I'm curious. Why does Dr. Dehgan want you to stay with your original rheumatologist? Is it because your diagnosis is not verified by a biopsy? I don't get it. If she was awesome why didn't she keep you as a patient, especially if she is taking new patients. I'm confused.
I'll text you back my email address and we can talk there since I'm not getting anything on this end on the forum.
Take care sister. We'll chat soon.
Hello
Just got back from seeing the rheumy is surrey and she is NOT happy I saw Dr. Dehgan in Vancouver. :( she told me not to see her anymore and to stay with Dr. Dehgan as too many doctor's now wanting to do different treatments. Dr. Dehgan didn't say why to go back to the Dr. in Surrey, she just said "she's your rheumy so stay with her" and now the dr in Surrey is telling me to go back to Dr. Dehgan and let her diagnose me OH BOY..not good. I don't see Dr. Dehgan until July to go see her for all the blood work she ordered in December. So I'm not on any medications now and no doctor.
Not sure why the heck your not getting my private messages on here. I checked my sent folder and it says I sent both you and Lisa a msg, maybe my setting? not sure. I will try to msg you again.
sue
Send you an private email :)
Hi All,
Does any one know of any active support group in vancouver area I got diagnosed with wegner last year ans recieved two rtx infusion and currently on 12.5 mg of pred but one of my eyes is still slight red and its has been 3 months from infusion. I am seeing doc in vancouver, I asked him how long will it take to recover but not getting any answer.
I cannot help you with a supportgroup in Vancouver, but I hope you 'll be able to talk to your doctor soon.
I wonder how many people with GPA can access a face to face support group. I suspect only those living in a major metro area could do that