View Full Version : Worst things about having Wegener's granulomatosis
Worst things about having Wegener’s granulomatosis:
On a support forum for diabetes I saw a thread on things people hate most about having diabetes. It got me thinking about the most irritating things that come with having Wegener’s so here is the start of my list in no particular order:
1. Having to learn to spell it so you can write it on medical forms, emails, and other places.
2. Never knowing if that cold you just got is just a cold or start of new flare.
3. Never know if the pain in your joint means Wegener’s is coming back. Never knowing if any new pain or symptom means something bad might be going on.
4. Having to try explain to people that auto-immune disorder doesn’t mean your immune system is too weak. It just doesn’t work right so you have to take dangerous meds to try keep it weak and subdued.
5. Having to takes lots of different meds with undesirable side effects just to stay alive.
6. Being your pharmacists best customer and having to support a number of health care providers so they can take trips with your money while you can not travel anymore.
7. Having to adjust to various losses in your ability to function due to damage from the Wegener’s such as loss of hearing, trouble walking, poor balance, lack of endurance, etc
8. Having emotional meltdowns from number 7 or effects of prednisone.
9. Having a good day means being able to get out of bed and engage in some activity for a couple hours even if it is at a very slow or limited basis.
10. Having to try educate or explain to some doctor, other than your treating rheumatologist, what your symptoms might mean or what treatment might be needed. Why you are concerned?
11. Hearing people say you look better now that you gained some weight after you gained 50 pounds from being on prednisone,
12. Seeing how you look in the mirror after your weight gain and not having any clothes that fit. Feeling you have to eat again three hours after eating a big meal because of the prednisone.
13. People not recognizing you because of your new new look with nice moon face and Buddha belly. Maybe this is a good thing sometimes, but not when trying to cash a check at your local bank.
14. Wondering why you had to be the lucky one out of 25,000 to get this nice disease?
15. Having to give blood and urine every week or two so your phebotomist looks like your best friend.
delorisdoe
03-12-2011, 01:05 AM
13. ha ha. Customers used to come in to my work and ask me how my sister was? I dont have a sister. I figured out that they thought i was my ugly larger sister. once i figured this out i would answer " great". she is on vacation.
Thought of couple more:
16: Being germ-a-phobic because of weak immune system. Having to cancel social activity because other people are sick and you need to avoid them. Having to wear germ mask when going out due to low WBC.
17. Being afraid to travel cause you might get sick and they won't know how to treat you. Fearful of flying since it is bad place to catch germs.
18. Checking for blood when you cough or urinate cause....
gurinbasra
03-12-2011, 02:45 AM
19. Telling people that chemo is just not for cancer patients and then explaining that WG is not cancer 'cos they just don't get it.
20. Having to take some kind of pill every hour of the day, seven days a week for the rest of your life.
LisaMarie
03-12-2011, 03:20 AM
Heck I have to wear a mask regardless of my WBC...per Mayo I basically have no immunity now...up side ...my kids try to make lips on them t dress them up some.....so i look like a clown with a mask...could be worse .....
21. Missing out on those favorite restraunts for special occasions cause you have little or no immunity to keep WG at bay!!!
22. Movie theater popcorn at the movie theater watching a movie with my kids.(making it at home is just not the same)
23. Overdoing it because you want to do something with your family then sleeping days away to pay for it.
Lastly from me:
24. Explaining to your kids that even if the meds make you sicker it is actually helping you get better...then you don't get better...you just may not get worse!!
25. Feeling tired and exhausted from walking up a dozen steps or any other"strenuous" activity.
26 Being sick and tired of feeling sick and tired most of the time.
27. Having to qualify or hedge any social engagements cause you don't know if you will be up to doing it.
I bet we can get a hundred so keep going.
NicShaf
03-12-2011, 05:57 AM
28. The look of pity you get from people when they ask you how you're feeling...I know they mean well, but I hate that look.
29. Trying to find clothes in my closet that hide my extra 20lbs that Preds has so kindly bestowed on me.
30. Bruising easily from all the meds...I'm clumsy and run into stuff all the time.
31. Not being able to spend time with my nieces and nephews because they carry too many germs.
32. Staggering when you walk. If you don't have a cane or walker, they think you are drunk.
33. Seeing the anxiety in your family members who worry about you.
34. Feeling guilty because you need so much help and can't do much to help anyone else.
gurinbasra
03-12-2011, 07:19 AM
35. Having shaky hands from the Prednisone.
36. The Crusties - only a Weggie knows!
37. No two Weggies having the same symptoms.
Hammy8241
03-12-2011, 08:21 AM
Nice thread Drz
38. Having to learn how to pronounce wegeners granulomatosis
39. Listening to someone you have told the name of the illness, correcting your pronunciation!
40. Having to call for a first aider to stem the flow of blood coming from that clever 'buggers' nose after a touch of pred rage!
41. Not looking as ill as I feel.
42. Knowing that you have no real reason for feeling depressed & grumpy but you are.
43. letting a loved one know that 'it's not funny' and your pred rage is taking a 'fast lift upwards' and they don't listen!
44. Loved ones don't talk to you all week just cos you 'blew your top' when they were only making a joke!
45. Fear of fractures due to bone loss from prednisone. Fear of falling cause you will break like an egg. Fear of going out in icy or wet weather for this reason.
46. Knowing your big outing today will be a trip to pharmacist or lab for blood draw.
rephrase of 41--hearing people tell you that you look good when you feel like crap.
Tim Roberts
03-12-2011, 09:31 AM
45. Not feeling so "special" about having such a rare disease.
46. Trying to stay on top of all the new changes and treatments for the disease (this forum helps greatly!).
47. Wondering who will take care of your family if the treatments don't help or work.
48. Feelings of despair at having an incurable disease.
49. Continually wondering when the next flare will come and how bad it will be.
50. Trying to remain strong and positive for your family as they have never seen Dad sick before now.
freakyschizogirl
03-12-2011, 09:34 AM
51. playing disease top trumps with your nearest and dearest
52. trading pred like they were sweets with my mum!
53. Blood tests
54. Nasal douching.
55. trying to have a conversation with a normal person about what "crusting" is
56. fighting to get the best treatment
57. bitchy receptionists!
NicShaf
03-12-2011, 09:53 AM
#41, either way, is a doozie.
I like #45 too:rolleyes1:
58. Keeping track of ALL the pills you have to take daily, and not forgetting a single one!
59. Drinking so much water
60. Knowing that making a list like this might be the highlight of your day.:sad:
delorisdoe
03-12-2011, 10:53 AM
61. That it has once again become pretty much all I think about.
LisaMarie
03-12-2011, 12:03 PM
Gotta love 41....
62. Driving somewhere and forgetting where you are going
63.remembering what doc what day and what time
64. Chewing on milk dud to keep my pred mouth in check while my brain catches up
65.Filling my lovely pill box with the right meds for the right time of day
66.Trying to explain to my kids why????????:confused1:
elephant
03-12-2011, 12:14 PM
67. Drinking so much water to swallow the pills and then getting up 8-10 times a night to pee, which causes interrupted sleep, which causes my day to be hell!
Chris G
03-12-2011, 12:41 PM
68. Waking up in the morning feeling pretty good. Then, taking a shower uses up all the energy I thought I had.
69. Knowing that all my co-workers are looking at me wondering why I've let myself go.
ArlaMo
03-12-2011, 12:43 PM
My latest...
70. Having a tooth that needs to be extracted, but having the Wegs expert tell your periodontist that bone graft and implant will have to be delayed til your labs are better.
71. Pred acne, pred puff, chemo hair loss and now a big hole in the mouth - so great for self-image/self-esteem.
Ginger
03-12-2011, 02:51 PM
72. when you have to communicate with your dad about body functions:glare: colour, quantities, texture -- you get the picture:thumbdn:
73 Not been able to see because of side effects of preds needing operations to correct
74 The look on some people face when you tell them what you have and they ask , can anyone catch it !
Sangye
03-13-2011, 04:06 AM
(#41 has my top vote, too!)
75. Being unable to sit in the sun because all the meds make you sunburn, and the heat makes you sicker
76. Being unable to enjoy physical activities you did before--hiking, biking, snowshoeing
77. How isolating it can be to have a chronic, rare disease
78. Being the only one in your circle of friends who is sick
79. Being unable to stand and talk for longer than 5 mins without heading for a chair.
80. The chronic anxiety of having a disease that acts like a stealth attacker. Ninja disease.
LisaMarie
03-13-2011, 04:32 AM
herer s one
kinda gross but o so true
73.Finding blood in the toliet then trying to figure out where it is coming from as we think "oh crap..not again"...men have 2choices...most of us girls get 3.
delorisdoe
03-13-2011, 05:17 AM
herer s one
kinda gross but o so true
73.Finding blood in the toliet then trying to figure out where it is coming from as we think "oh crap..not again"...men have 2choices...most of us girls get 3.
74. only having 2 chouices of where the blood is comming from because cytoxan took one of the 3 away from you.
marta
03-13-2011, 08:30 AM
75. Not being able to cuddle and comfort your four year old when she is feeling sick and asking for you because you're afraid that you'll catch what she has and wont be able to fight it or it will restrict you from getting your treatment. Then it ends up with both you and the four year old crying.
76. Looking at people trying to figure out if you're a drug addict because of the colour of your face and the black circles around your eyes, and the thinning hair showing your white, sad looking scalp, but they're confused because you're nice, and smiling and seem pretty coherent.
75. Not being able to cuddle and comfort your four year old when she is feeling sick and asking for you because you're afraid that you'll catch what she has and wont be able to fight it or it will restrict you from getting your treatment. Then it ends up with both you and the four year old crying.
76. Looking at people trying to figure out if you're a drug addict because of the colour of your face and the black circles around your eyes, and the thinning hair showing your white, sad looking scalp, but they're confused because you're nice, and smiling and seem pretty coherent.
Number 75 sounds like a real heart breaker. Can you do it with a germ mask and gown like they use in the hospitals? I would feel that would be something real important to try find a way around. I think that is probably the hardest thing I have read on this list so far and one I never thought considered before.
My daughter and I did have the same concern when my grand children came to visit and being worried what would happen if they were ill or sick with something cause then we would have to cancel the visit.
Number 76 could also be mistaken for AIDS victim too. I think most people think we have a form of cancer cause we take cancer meds too.
Sangye
03-13-2011, 03:21 PM
Face masks offer no protection from viruses at all. They only block some bacteria. The main thing they protect you from is droplets from sneezes and coughs.
I'm so sorry for #75 Marta. I can't imagine how difficult that must be. :sad:
jeriorleans
03-13-2011, 03:55 PM
Watching your son suffer and praying to God that he will have a normal life.
BrianR
03-13-2011, 05:25 PM
Watching your son suffer and praying to God that he will have a normal life.
I'm feeling it big time. This is a tough thread for me to read.
alhartzler
03-13-2011, 06:06 PM
Wegener's is a devastating, insidious, life-sucking, progressive disease. But, there is comfort in knowing there are others out there, who have feelings of heartache, despair, and doubt. While this is a tough thread, there is still hope, and humor. I laugh out loud at some of the posts! So funny, so sad, so familiar! My best wishes to all my fellow weggies and their families.
Hammy8241
03-13-2011, 11:55 PM
77. Forgetti ............now what was it i was going to say?
78. The instant welling up of anxiety and the inability to take the slightest pressure.
renidrag
03-14-2011, 12:33 AM
79. Looking for other "little things" to do to convey my love for my wife. She has to do what I used to do.
80. Allowing yourself to be humble, because you know you just "can't"
Sangye
03-14-2011, 01:40 AM
Wegener's is a devastating, insidious, life-sucking, progressive disease. But, there is comfort in knowing there are others out there, who have feelings of heartache, despair, and doubt. While this is a tough thread, there is still hope, and humor. I laugh out loud at some of the posts! So funny, so sad, so familiar! My best wishes to all my fellow weggies and their families.
Angela, I just want to clarify that Wegs is not a progressive disease. If it's untreated it certainly can be, but if treated or in remission it does not progress. An example of a progressive disease is ALS/ Lou Gehrig's disease. So-- there's one LESS thing on your list!
LisaMarie
03-14-2011, 04:54 AM
I am enjoying this thread....i am laughing and crying...it great!!!!
Daggar
03-14-2011, 05:11 AM
Watching your son suffer and praying to God that he will have a normal life.
I hear you loud and clear Jeri...... just to add to that...
Feeding your kid the drugs knowing full well the potential dangers involved with them and coming to terms with the fact there wasn't an option.
Kind of that "pay the piper now.... or later"..... it was a horrible feeling.
The first five years were pretty rough, but since then Wegener's has not caused me too much trouble, instead it has been the drugs that have been slowly killing me. Without them I would not be here, otherwise, for me, the medication's side effects are the worst thing about having Wegener's.
Daggar
03-14-2011, 05:55 AM
Jack -- I recall reading one of you older posts where you said the treatments didn't include all the precautions that they follow today -- did you mean they didn't use the secondary meds like sulfatrim/bactrim, ranitidine/omeprazole, folic acid, calcium/vitamin D supplements, etc.? Did they at least tell patients to consume a "lot" of water?
Compared to the treatment people seem to be receiving today, I would say that I was probably over medicated. However, I was in a very poor state (unable to stand and kidneys past the point of no return) so perhaps it was justified. I was told to drink plenty of water, but not the reason why and I would have made more effort if I had known. Calcium, Bactrim and protection for my digestive system were only added as the need became apparent. Given the chance, I would have donated sperm, but the possibility of problems was only mentioned in passing.
On the whole, I have no complaints and feel that I had the best treatment available at the time, but there is now more information available if you ask the right doctors and a slightly better choice of drugs. We are still stuck with the Pred though! :mad1:
LisaMarie
03-14-2011, 10:22 AM
prednisone prednisone go away......and don t come back another day....i can dream can t i....down to 20mg...wish me luck...
JackI think I am addicted to the crunch bar....good thing they are hard to find...lol...
I hate the fact they everyone reacts differently to treatment....we can share experiences but none of use seem to be alike...in treatment or symptoms....WG IS A BAD THING ANY WAY WE LOOK AT IT,BUT EVERYTHING HAPPENS FOR A REASON ATLEAST THAT IS WHAT I TELL MY SELF WHEN I HAVING ONE OF MY ."MAD AT THE WORLD DAYS"....:( ...Thank God today is noy one of them:love:
I am enjoying this thread....i am laughing and crying...it great!!!!
I found myself having lots of strong varied emotions too from writing on this thread and reading others comments which I think was or is therapeutic for me. Hope it is helpful for others too.
90. Just an estimate since we have double numbers from people adding things at same time.
Having a cold or any other illness hit you much harder since you are starting at a lower point than most.
91. Having to struggle at times to remember why you should be grateful for today's treatments which made it possible for you to survive since a few decades ago people didn't.
LisaMarie
03-14-2011, 12:17 PM
74. only having 2 chouices of where the blood is comming from because cytoxan took one of the 3 away from you.
How about when number 3(for women)...comes back for no reason and hangs around for 2weeks....bleeding more like stuck hog....ughh
freakyschizogirl
03-14-2011, 06:56 PM
92. Whens someone sneezes around you having to brace yourself and not breathe or cover your nose praying the cold germs dont get in!
92. Whens someone sneezes around you having to brace yourself and not breathe or cover your nose praying the cold germs dont get in!
Sam the above made me smile . When that happens to me hubby says i have a certain look that i give people , when its him !! i give him earache :w00t:
93. Trying to hide your excess wind caused by all the medication, or is that just me?!
Sangye
03-15-2011, 02:26 AM
(It's just you, Luce :biggrin1: )
94. The pred weight.
95. Becoming an expert at counting sheep at night because of our preds friend ,
96 Muscle cramps and spasms in hands and feet that are very painful.
97. Itchy skin and sores that made it hard to sleep. Fear of infection when you scratch your skin too much.
Hammy8241
03-16-2011, 05:32 AM
98. Having absolutely NO patience with cold callers on the phone!!!!!:predrage: (or is this a benefit:thumbup:)
2 to go - come on guys, make them good!
LisaMarie
03-16-2011, 06:03 AM
99. For the girls ...trying to sneeze...cross your legs and not pee your pants at the same time...and remembering to wear a pad in case you can not do it.
100. Craving foods then finding out they do not taste as good since we take all these lovely drugs.
101. Trying not to have pred rage on the insurance company that continues to bill you in correctly over and over and over again!!!!!!!
102. Last but not least and it may be too personal....but finally wanting to have sex and be allowed ...but too damn tired to do it...ughhhh:predrage:
Hammy8241
03-16-2011, 07:14 AM
103. Snoring so loudly, you have to move into separate bedrooms to allow your partner to get some sleep.
LisaMarie - Two minutes out of the day (including having Ciggie after) - try an extra pred:biggrin1: - Man talking!
Chris G
03-16-2011, 07:44 AM
haha....funny hammy
104. Constantly thinking about stretching my neck when talking to people, to minimize this aweful double chin!
105. Pred-sweating
NicShaf
03-16-2011, 07:54 AM
106. Trying to decipher between Wegs, medication side effects or just "normal" pains/discomfort, and emailing your doctor all the time trying to figure them all out...this may be for the newbies only...
freakyschizogirl
03-16-2011, 08:41 AM
lol LisaMarie...i never thought but i can now use that as an excuse! "Sorry darling you should've known me when i was on 60mg of Pred..."
Chris G
03-16-2011, 11:17 AM
Why do we snore so much? My husband says I snore like a bear now, but I don't know why.
pberggren1
03-16-2011, 11:32 AM
107. It seems like the only outings I get are to the doc, hospital, lab, radiology, and pharmacy.
107. It seems like the only outings I get are to the doc, hospital, lab, radiology, and pharmacy.
Ain't that the truth unfortunately. I had this one down earlier as knowing your big outing for the day will be a trip to the lab or pharmacy, but its the same concept.
Lets try sort out the top ten worst things and see what comes out. Please list the ones that really bother you the most or just seem the worst whether this is how you feel today, or in general most of the time, or the ones you rank a 10 on the horrible scale of worst things you can imagine and see what develops here. If your worst ones aren't already here, please add them. As you can tell this is purely personal and subjective. Feel free to argue the case for your nominations of the baddest things about Wegener's disease and see what bubbles up.
ArlaMo
03-16-2011, 02:32 PM
Kind of lumping them together, but pred side effects (weight gain, mood swings, acne, etc.) have got to be in my top ten, if not #1. I'll have to go back thru to come up with the rest of my 10.
Kind of lumping them together, but pred side effects (weight gain, mood swings, acne, etc.) have got to be in my top ten, if not #1. I'll have to go back thru to come up with the rest of my 10.
You don't need to list ten things, just as many as you feel the strongest about, but it will help make it easier if your nomination list is no more than ten.
I need to give it some more thought but I think the uncertainty of the disease and the anxiety it generates is one of my biggest bugaboos.
pberggren1
03-16-2011, 05:03 PM
Number one for me would have to be the deconditioning, gut, decreased lung function, and of course the nose stuff.
pberggren1
03-16-2011, 05:04 PM
And not being able to hold down a regular job too. And then there is the no hearing part.
freakyschizogirl
03-16-2011, 09:46 PM
People telling you "you look fine" when you feel at your worst.
Sinus pain, post nasal drip, whistling nose.
Having to remember to take you meds.
New one for me, Medicine review from your nosey, rude Pharmarcist!
delorisdoe
03-16-2011, 10:44 PM
I have never had a negative experience with a pharmasist. Not to say that they are not nosey-i imagine it is hard not to be when you are prescribing drugs like cytoxan to a healhy looking person.
You look fine is probably one of the biggest causes of feelings of isolation.
delorisdoe
03-16-2011, 10:45 PM
I have never had a negative experience with a pharmasist. Not to say that they are not nosey-i imagine it is hard not to be when you are prescribing drugs like cytoxan to a healhy looking person.
You look fine is probably one of the biggest causes of feelings of isolation.
LisaMarie
03-16-2011, 11:37 PM
Why do we snore so much? My husband says I snore like a bear now, but I don't know why.
We snore load due to the pred the cause cushing and thick fat necks...per one of my doc...plus uf you have sinus inviovement you may be blocked there too......just get him some ear pluggs and it'll all be good...I have to have a sleeep study...i have sleep apnea due to this stuff lucky me
Sangye
03-17-2011, 03:08 AM
To me nothing is worse than the fatigue and pred weight. The fatigue keeps me from doing almost everything I love, and the pred weight is just miserable and unbudgeable.
Also, waking up feeling lousy every single day. That really bums me out.
I have never had a negative experience with a pharmasist. Not to say that they are not nosey-i imagine it is hard not to be when you are prescribing drugs like cytoxan to a healhy looking person.
You look fine is probably one of the biggest causes of feelings of isolation.
All my pharmacists have treated me well, but as as one of there best customers I expect good service. If they screw up to many times I switch to another pharmacy but am happy with one I am currently using except they don'[t know how to bill for my insulin so i go to another one for that. I use a local Walgreens and like the auto refill service, email or phone TXT notices and phone calls telling me when meds are ready for pickup have. They have a nice waiting area, all the staff know me by name, and they review any potential side effects or med conflicts with me and the service is usually quick. sometimes I have to wait for them to serve another person first but usually there is no wait.
It is part of the pharmacist's job to be "nosy" since they are the ones who keep an eye open for possible drug interactions and knowing your problems also helps them to recommend proprietary medications for every day problems. Mine is really helpful. He collects my repeat prescriptions from my doctor's office and seldom makes a mistake.
I think it is important to build a relationship with your pharmacist and that they should have access to all your medication requirements.
freakyschizogirl
03-18-2011, 01:59 AM
It was probably the way she was wording the questions and the look of disgust on her face that made me feel she was nosey. After she had asked me what was wrong with me and asked me to spell Wegs she said that telling her it was an auto immune disease would've been sufficient information. My Pharmacy is my local Asda (Walmart) and i order my meds myself online. She then argued with me over a steroid spray because the ENT has written a 3 month script and the solitions only lasts a month. She was asking me why he had put 3 months supply down when he knows they run out after a month, and that she couldnt give it all to me and i'd have to come back next month. They only do the med reviews at Asda cos they get £28 a time to do it. And to be honest i find them more professional at Asda (on the whole) than my local Boots :laugh:.
I use a small pharmacy that is local to both my home and my doctor's surgery. It is run by the owner and before him his mother was the pharmacist so it is a true family business. They give a very personal service and will always have a chat or discuss drug side effects and other related stuff. They have even delivered to my house without being asked during the bad weather and when I have been particularly unwell.
LisaMarie
03-18-2011, 06:48 AM
My top ten
1. Fatigue-not being the person I used to be because of it
2.Pred weight gain..UGHH
3.All The Dang old lovely side effects from drugs we take
4.Having people tell me I look great when I don't feel it at all
5.Nasal and throat crusting
6. Having health care providers not listen to you!!!!!!!!!
7.Pred rage...I have keep mine under control pretty well thanks to mediation
8.Using oxygen...even if i am slowly weaning myself off
9. Sleep apnea due to pred
10. Lossing partial hearing in my right ear....it sucks but gives me an excuse not to acknodwledge stupid comments...or mean ones
:rolleyes1:
missc
03-19-2011, 03:32 AM
Love this thread!
mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!
LisaMarie
03-19-2011, 03:54 AM
Love this thread!
mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!
Will keep you in our prayers and let us know when your perfect baby boy arrives!!!!!!!
missc
03-19-2011, 03:59 AM
Thank you so much :)
NicShaf
03-19-2011, 05:44 AM
Love this thread!
mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!
To add to LisaMarie's prayers, I will also keep you and your baby boy in mine too! Congratulations also!
Daggar
03-20-2011, 06:55 AM
missc- a number of young women on this site are worried about child-bearing with WG.
Are you on any meds? Holly's gynecologist has told us that Imuran seems to be the one immune suppressant that has little to no effect on pregnancies ... is that what you've been told?
missc
03-20-2011, 01:55 PM
missc- a number of young women on this site are worried about child-bearing with WG.
Are you on any meds? Holly's gynecologist has told us that Imuran seems to be the one immune suppressant that has little to no effect on pregnancies ... is that what you've been told?
Hey Daggar, I am still taking meds. Which are Prednisolone, Tacrolimus, Bisoprolol, Co-Trimoxazole and Omeprazole. I was on Mycophenolate but got took of it before i conceived because it can affect pregnancies. I was took of it 6 months before to see how i would get on with out it and was fine, so doctors give me the go ahead to get pregnant. For many years i have had so many questions about becoming pregnant with WG and no one has been able to ask my questions so i hope this helps you :)
missc
03-20-2011, 01:57 PM
To add to LisaMarie's prayers, I will also keep you and your baby boy in mine too! Congratulations also!
Thank you very much :)
Sangye
03-21-2011, 03:41 AM
Holly's gynecologist has told us that Imuran seems to be the one immune suppressant that has little to no effect on pregnancies
Daggar, do you mean a drug that is taken during pregnancy? Rtx doesn't affect fertility. You shouldn't get pregnant while taking it of course.
Daggar
03-21-2011, 05:28 AM
She highly recommends you wean off Imuran before attempting to have a child, however, in some cases the patient has no choice if their disease is still threatening and they want to have a child. The doctors and family in question will sit down and weigh the risks in both cases. Some of her patients have given birth to healthy babies while continuing with low-dose Imuran (no breast-feeding) and close monitoring throughout the pregnancy. To her Rituximab is an "unknown" risk -- there isn't enough data over the long term that makes her feel comfortable with that option.
Sangye
03-21-2011, 03:07 PM
Dr Seo also uses rtx conservatively for the same reason. He still prefers to use ctx since the side effects and risks are so well-known.
Chris G
03-22-2011, 05:20 AM
Couple more to add to the list:
- I go to work with puffy, swollen, red eyes, stuffy nose, sinus pressure, feeling like crap. Someone asks "oh do you have a cold?", I reply "no, not exactly".....not wanting to get into a discussion. But they won't drop it......."allergies?" - Ugh....I say "yeah, something like that". Then they launch into a diatribe about how horrible their allergies have been lately, blah, blah, blah!!! Really!?! Please shut up. My WG trumps your worst allergy day. But on the outisde I say "yeah, I know what you mean".
- My kids have been sick for the last week........hands are so dry from washing my hands so many times, that I have tiny cuts on the tips of my thumbs. Ouch.
elephant
03-22-2011, 10:32 AM
Chris G, I remember those days going to work feeling exactly would you said...I would see my primary doctor and ENT weekly. I finally could not take it anymore and told another doctor please look at my sinus biopsy report, which named about 20 possible diagnosis. He figured it out and gave me 40 mg of prednisone which helped....then I went off to the Rhuemy.
freakyschizogirl
03-22-2011, 10:52 AM
I used to sneeze alot cos of the crusting. Colleagues would ask if i had allergies, i said no, Do i have a cold, again i'd say no its just my nose. Then everytime i sneezed it really bothered me when people say god bless you, since i am neither christian or catholic nor any religion really. And the looks i would get, especially since i am not blessed with being a silent sneezer, believe me if i sneezed everyone knew about it!
pberggren1
03-22-2011, 11:51 AM
I have sneezing fits now and then and are quite loud as well.
marta
03-22-2011, 11:56 AM
I've got another one.
Having your well-intentioned alternative medicine practitioner friends get offended when you don't take their advice and drop all of the meds you're on to try an alternative therapy... naturopath, alopath, osteophath, chiro, etc. etc.
I too am a loud sneezer.... I love it. It sure gets everyone's attention. "Gotcha"
pberggren1
03-22-2011, 11:59 AM
I hear ya Marta. I have had so many people tell me you have to go see this herbalist or naturopath and go off all my med immediately.
Sangye
03-22-2011, 02:02 PM
LOL At least you guys aren't a holistic practitioner having to deal with your professional peers telling you to dump your meds.
LOL At least you guys aren't a holistic practitioner having to deal with your professional peers telling you to dump your meds.
So how do people who belong to a faith based healing group handle the pressure. Do people still die from refusing modern medical treatment for religious reasons? Peer pressure, especially from family would be very hard to resist.
Couple more to add to the list:
- I go to work with puffy, swollen, red eyes, stuffy nose, sinus pressure, feeling like crap. Someone asks "oh do you have a cold?", I reply "no, not exactly".....not wanting to get into a discussion. But they won't drop it......."allergies?" - Ugh....I say "yeah, something like that". Then they launch into a diatribe about how horrible their allergies have been lately, blah, blah, blah!!! Really!?! Please shut up. My WG trumps your worst allergy day. But on the outisde I say "yeah, I know what you mean".
- My kids have been sick for the last week........hands are so dry from washing my hands so many times, that I have tiny cuts on the tips of my thumbs. Ouch.
I guess I would add to this is the uncertainty if it is the Wegener's kicking up, or did you catch a cold which will now wake the Wegener's up.
Sangye
03-23-2011, 01:45 AM
So how do people who belong to a faith based healing group handle the pressure. Do people still die from refusing modern medical treatment for religious reasons? Peer pressure, especially from family would be very hard to resist.
I don't know, that doesn't apply to Buddhists. I was talking about other chiropractors thinking I'm an idiot for taking the Wegs drugs.
renidrag
03-23-2011, 01:50 AM
If I remember correctly Sangye, didn't you try a more holistic and natural treatment in the beginning? Perhaps this is a great example of walking a mile in our shoes, then tell me not to take drugs.
Dale
Sangye
03-23-2011, 02:05 AM
Oh yes, before I knew it was Wegs we were treating it 100% holistically with increasing intensity. I nearly died. When I explain that to fellow chiropractors and tell them that Wegs with lung hemorrhage is 100% fatal if not treated, they back off. I tell them that as bad as I am right now, they wouldn't even recognize me from before I started the meds. Many even open their minds and understand.
Sangye
03-23-2011, 02:17 AM
I also tell them that unlike other AI diseases, there is not a single case study of a Weggie being treated exclusively with chiropractic and/or other holistic methods. That gets their attention!
renidrag
03-23-2011, 02:47 AM
How about, after three years of suffering you still have to answer your family, brother in particular, when he says, "What exactly is wrong with you again? you look O.K.." Next time I think the reply will be "Just be glad they don't THINK it is genetic."
Sangye
03-23-2011, 04:08 AM
LOL Right on, Dale. Sometimes that's the only way to get through to someone. :wink1:
alhartzler
03-23-2011, 10:23 AM
Here's one. So, your rheumy refers you to your primary care to sort out the prednisone related side effects. Keep in mind, I have no insurance right now, as I'm still waiting on the high risk insurance to be approved. So, you go to your PCP, $163 visit, who is new to the whole Wegener's game. You bring all the records and start explaining. After addressing various issues, like BP, HR, sinus infection, other meds, etc. you happen to mention that you are now out of pain medicine, and are still having quite severe joint pain. You describe that in detail...The whole arthritis thing, which of course there is no evidence of the swelling and so forth in his office, because it resolved the night before. He looks perplexed. And then you explain that you never needed pain medicine before the trip to the ER, because the arthritis was fairly new, which is what signaled that disease progression was occurring, i.e. the trip to cleveland, etc. But, instead, he refers you back to your rheumatologist because you are "on a really high dose of prednisone". (60 mg daily) Yeah, really?! Tell me about it. And you get the feeling he doesn't believe that you are having arthritic pain, and that you are some kind of drug seeker. And, all the while, I'm sweating profusely because of the prednisone!!! Well, doc, I'm not in remission yet!!! Guess he didn't think about that! How humiliating!!! And infuriating!!!
pberggren1
03-23-2011, 01:13 PM
Alhartzler, sometimes you have to ask exactly what your doc is thinking and not assume. You have to be agressive at times and lay down the law. It is unfortunate that we have to do this sometimes but it is your health, life, and future at stake.
I don't know, that doesn't apply to Buddhists. I was talking about other chiropractors thinking I'm an idiot for taking the Wegs drugs.
Do you know of some religions that still espouse this philosophy? I know years ago this was a big issue which some parents losing custody of their children for refusal for religious reasons to treat them for illnesses that would kill them. I don't remember any such cases recently and wonder if this conflict still exists.
alhartzler
03-23-2011, 01:50 PM
Alhartzler, sometimes you have to ask exactly what your doc is thinking and not assume. You have to be agressive at times and lay down the law. It is unfortunate that we have to do this sometimes but it is your health, life, and future at stake.
I am not used to having to be aggressive. I agree with you, it is necessary at times. This is just new for me, as I have never had to be on pain medication in my life. And now, I have to ask for pain medicine, and explain weird pain symptoms, of which there are no outward signs of. It made me feel humiliated, and I don't think he believed me, because I am on so much prednisone. And, to top it off, I was sweating profusely. I just can't describe how bad it made me feel. I am a professional who deals in pain mgmt and medications. I am the furthest thing from a drug seeker that there can be. I know the dependency that can come with these drugs. Which, may have contributed to my feeling worse having to continue describing my pain, and feeling like the doc didn't believe me. To finish the story, I went back to see my rheumatologist, who refilled my prescription without question.
Sangye
03-23-2011, 02:25 PM
Do you know of some religions that still espouse this philosophy? I know years ago this was a big issue which some parents losing custody of their children for refusal for religious reasons to treat them for illnesses that would kill them. I don't remember any such cases recently and wonder if this conflict still exists.
I think Jehovah's Witnesses don't allow blood transfusions but I'm not sure if that has changed.
Sangye
03-23-2011, 02:31 PM
Angela, it's incredibly difficult to communicate under those circumstances (ie, full of pred, in pain and with someone who doesn't seem to care or understand). There's a difference between aggression and assertiveness-- the former will not get you anywhere and the latter will. I'm so sorry you went through this.
alhartzler
03-23-2011, 02:37 PM
Angela, it's incredibly difficult to communicate under those circumstances (ie, full of pred, in pain and with someone who doesn't seem to care or understand). There's a difference between aggression and assertiveness-- the former will not get you anywhere and the latter will. I'm so sorry you went through this.
Thank you Sangye, I appreciate your caring remarks. Yes, of everything, this really bothered me the most. I can't pinpoint why, but I just can't describe the humiliation I felt. I guess the utter despair and realization of where this has brought me, and to what level. Just a really bad experience, and I'm not really even mad at the doc. Thank you again.
Angela
Sangye
03-23-2011, 02:49 PM
You're welcome. I've been in that situation a lot. Therapy has helped me learn to navigate appts like that.
alhartzler
03-23-2011, 03:30 PM
Therapy doesn't sound half bad, and even at this somewhat early stage of the game, so to speak. I could probably use it, and especially since I dont exactly know why it bothered me so much.
Sangye
03-24-2011, 02:36 AM
I started therapy 3 weeks after diagnosis. I would have started sooner but got tons of blood clots! It's made a world of difference. Not just surviving Wegs (and everything related to it) but using this experience to change deeper patterns and habits.
Chris G
03-24-2011, 03:59 AM
Angela -
Not to excuse your doctor's behavior in any way, but I'm wondering whether you have a long standing relationship with your GP? I think many times it has nothing to do with us, and more to do with the doctor's own fear, when they don't know us well. I'll give you an example: I have seen the same GP for years - many, many times while trying to get a WG diagnosis, and of course thru many sinus infections, etc. She has on occaision OFFERED me pain meds, without me asking, because she knows me well. But, once, when my husband was sick with bronchitis, and I was sure he was about to cough up a lung, I sent him to see my GP.......knowing that she'd take care of him. She sent him home with a prescription for a cough syrup, which my pharmacist described as something they'd give to a child!! I was SO upset !! And it still bothers me to this day, but I guess all can say is that she didn't know him at all.
I feel your anger AND your humiliation. It's bad enough we have to struggle with this "invisible" disease, and then to have DOCTORS not believe us, just adds to the frustration. Hold your head high.......don't be humiliated :smile1: (easy for me to say, I know)! Next time you see him/her, you might even want to explain to him/her exactly how they made you feel.
I think one of the worst things about having Wegener's disease is the feeling of vulnerability from having to depend upon many doctors and care givers. Some times it seems like a never ending search or quest for services you need to try understand what is happening inside your body and then to get appropriate help to try feel better.
In the past couple weeks it seems I have needed some medical service or two every day. I was just reflecting though last night how lucky I have been to get such good services even though my usual internist has been ill with flu for past couple weeks. Usually I have been seen with in a couple hours of making a request. This is at a regular clinic and not an urgent care with walk in services. I have been impressed with the apparent compassion, consideration and professional demeanor and responsiveness to my many health issues and problems. I believe I am getting good care for my issues and am very relieved it has not been a battle or source of frustration.
It is tough enough to deal with the illness without having to deal with an attitude on part on people that are supposed to help us.
I don't know if it will help improve the services to let them know how you feel when you think you have been mistreated, but it shouldn't hurt and it might help you feel better.
I hope we all can get the care we need to feel better soon and maintain a feeling of better health.
I started therapy 3 weeks after diagnosis. I would have started sooner but got tons of blood clots! It's made a world of difference. Not just surviving Wegs (and everything related to it) but using this experience to change deeper patterns and habits.
I started in the hospital and a psychologist and psychiatrist came to see me in my room until I had processed enough so I didn't feel the need for more services.
jola57
03-24-2011, 03:12 PM
There are many, many doctors who treat patients as $ signs, and then there are those that are too set in their ways of antibiotic, cough syrup and aspirin for everything and then there are the rare few that reallly care and will go the extra length for their patients. If you have one of the last ones, you are lucky unfortunately for most of us, we are stuck with what we got because there simply is no other alternative. The least you can do is insist that your primary care giver gets regular consults from a well known wegs specialist if you do not trust his/her judgement.
alhartzler
03-25-2011, 10:37 AM
Angela -
Not to excuse your doctor's behavior in any way, but I'm wondering whether you have a long standing relationship with your GP? I think many times it has nothing to do with us, and more to do with the doctor's own fear, when they don't know us well. I'll give you an example: I have seen the same GP for years - many, many times while trying to get a WG diagnosis, and of course thru many sinus infections, etc. She has on occaision OFFERED me pain meds, without me asking, because she knows me well. But, once, when my husband was sick with bronchitis, and I was sure he was about to cough up a lung, I sent him to see my GP.......knowing that she'd take care of him. She sent him home with a prescription for a cough syrup, which my pharmacist described as something they'd give to a child!! I was SO upset !! And it still bothers me to this day, but I guess all can say is that she didn't know him at all.
I feel your anger AND your humiliation. It's bad enough we have to struggle with this "invisible" disease, and then to have DOCTORS not believe us, just adds to the frustration. Hold your head high.......don't be humiliated :smile1: (easy for me to say, I know)! Next time you see him/her, you might even want to explain to him/her exactly how they made you feel.
After having several days to think about this experience, I have come to some realizations. I think that in large part this was definitely due to the physician being new to me and to Wegener's. So, in relation to your experience, I think it is probably very similar. That being said, I have settled down, and I'm not at all upset with him. I am more upset with myself that I got humiliated and tired of explaining, so I just left the office without better voicing my needs. Next time I see him, which I will, I am going to tell him exactly how I felt, but in a pleasant, assertive way. I hope not to have another experience like that one, and am taking responsibiility for not letting it happen again.
Thanks for your kind words!!! So much good support on this site!!!
Angela
alhartzler
03-25-2011, 10:46 AM
I think one of the worst things about having Wegener's disease is the feeling of vulnerability from having to depend upon many doctors and care givers. Some times it seems like a never ending search or quest for services you need to try understand what is happening inside your body and then to get appropriate help to try feel better.
In the past couple weeks it seems I have needed some medical service or two every day. I was just reflecting though last night how lucky I have been to get such good services even though my usual internist has been ill with flu for past couple weeks. Usually I have been seen with in a couple hours of making a request. This is at a regular clinic and not an urgent care with walk in services. I have been impressed with the apparent compassion, consideration and professional demeanor and responsiveness to my many health issues and problems. I believe I am getting good care for my issues and am very relieved it has not been a battle or source of frustration. It is tough enough to deal with the illness without having to deal with an attitude on part on people that are supposed to help us. I don't know if it will help improve the services to let them know how you feel when you think you have been mistreated but it shouldn't hurt and it might help you feel better.
I hope we all can get the care we need to feel better soon and maintain a feeling of better health.
It makes me feel good to know that there are those who are happy with their care, and I also hope you never are made to feel what I felt. I am also very happy with my care overall over the past month and a half, mainly with the Cleveland clinic docs and with my own local rheumatologist. This PCP was new to me, and is probably in large part why he reacted to me in the way he did. Even though I still feel it was somewhat inappropriate. But I have to take responsibility in part and be more assertive with my needs from here on out. I will be letting this physician know how I felt in his office, and any further explanation of migratory arthritis that he needs clarification on. Thanks for your supportive words. Good luck with your current treatments and progress!!!
Angela
alhartzler
03-25-2011, 10:55 AM
Jolanta,
Thanks for the support. I am taking responsibility for this one, and from here on out. I will make sure he understands migratory arthritis and Wegener's, if he is going to treat me in the future. I will definitely be more assertive with my needs, and won't be made to feel that way again. I have nothing to apologize for, or beg for. Just a treatment approach that covers all the complex needs of this disease. So, I will be making sure that he knows these things in the future, and/or to consult my specialists in Cleveland. Thanks again
Chris G
03-25-2011, 11:16 AM
Good for you Kelly!! :thumbup:
ArlaMo
03-25-2011, 11:18 AM
There are many, many doctors who treat patients as $ signs, and then there are those that are too set in their ways of antibiotic, cough syrup and aspirin for everything and then there are the rare few that reallly care and will go the extra length for their patients. If you have one of the last ones, you are lucky unfortunately for most of us, we are stuck with what we got because there simply is no other alternative. The least you can do is insist that your primary care giver gets regular consults from a well known wegs specialist if you do not trust his/her judgement.
I'm sorry you've had poor experiences with medical professionals, but I really see the opposite being true. Most of the physicians I know (and because of my husband, I know a lot) care very, very much about their patients and it is the rare few who are in it for the money. Out of all the docs I've seen for Wegs this past year, only one has left a bad taste in my mouth - and with him, he is just way too overbooked and not familiar enough with the disease. With the number of rare diseases that exist, it is very difficult for doctors to be well-versed in all of them, especially in a smaller community. Definitely fewer alternatives than a big city, but I don't think lack of experience with our disease is a reason to call into question a doc's motives.
alhartzler
03-25-2011, 01:47 PM
I'm sorry you've had poor experiences with medical professionals, but I really see the opposite being true. Most of the physicians I know (and because of my husband, I know a lot) care very, very much about their patients and it is the rare few who are in it for the money. Out of all the docs I've seen for Wegs this past year, only one has left a bad taste in my mouth - and with him, he is just way too overbooked and not familiar enough with the disease. With the number of rare diseases that exist, it is very difficult for doctors to be well-versed in all of them, especially in a smaller community. Definitely fewer alternatives than a big city, but I don't think lack of experience with our disease is a reason to call into question a doc's motives.
ArlaMo,
I agree with you that one should not equate lack of experience with non-caring or poor motives. My experience was a combination of lack of experience, the fact that I was a new patient to him, and my inability to be assertive enough to make my needs known. I am definitely partly to blame. However, I did end up ultimately feeling humiliated, frustrated, and just plain bad. This is something I am working through. I'm sure you read my original few posts, so I won't rehash. I want to say, however, that I am overall very pleased with my caregivers in general, especially my specialists. I think this new doctor, who is now my primary care doc, will need some time to get to know me, and I will make sure he consults with my specialists in the future, as I think he is also new to Wegener's treatment in general. Anyway, I guess I'm rambling, but I appreciate your voicing your thoughts. Such a broad range of personal experience and wisdom.
ArlaMo
03-25-2011, 02:57 PM
Angela,
I will absolutely admit to being a little sensitive on the subject of doctors and their motives - kinda comes with the territory when you're married to one :blushing:
I just hate that they are sometimes all lumped together as being all about the $$$ when that is so opposite of what I've experienced.
Daggar
03-25-2011, 03:20 PM
I have to admit some misguided anger with our GP leading up to Holly's diagnosis based on how long it took and the whole process of trial & error. Now that I've had time to sit down and look back at it without the "emotional" baggage -- I can't be mad at him anymore. The symptoms are very confusing (the kidney issue was silent for the most part) and for a GP it is very difficult to pinpoint anything without extensive testing. He did the best that he could under the circumstances and I can tell it eats him up whenever we see him. I'd hold on to the belief that to be successful in the medical field you have to be in it for more than the $$$'s.... at least I hope so.
alhartzler
03-25-2011, 03:48 PM
ArlaMo,
I absolutely agree with you that the bulk of physicians are motivated by more than money, etc. That wasn't my issue at all. I also understand that it must be tough to hear about those who have had experiences to the contrary, especially when you are married to a doctor. Just didn't want you to misunderstand me or my experience. Mine was more about the humiliation of having to ask for pain meds and feeling as though the doctor either didn't believe me, or didn't understand the disease process fully. And, being loaded with prednisone, so highly charged emotionally. This was a humiliating, and new experience for me. I believe most people are inherantly good. I am usually an optimist in general, or I try to be, and I am working through my mixed emotions, and how to be assertive, etc. Thanks for your valuable input. You have a unique perspective by being married to a physician. And, I respect everyone's opinion.
alhartzler
03-25-2011, 03:49 PM
Also, hate to beat a dead horse, but this has really helped me to talk all this out with everyone.
Thanks all.:rolleyes1:
Chris G
03-26-2011, 01:42 AM
Good for you Kelly!! :thumbup:
Wow, I think I was in more of a mtx fog yesterday than I thought! I meant to say good for you ANGELA!!:thumbup:
Mitch
03-27-2011, 02:14 PM
OMG! I didn't know where the shaky hands were coming from! Thanks!
alhartzler
03-31-2011, 01:12 PM
Wow, I think I was in more of a mtx fog yesterday than I thought! I meant to say good for you ANGELA!!:thumbup:
No problem. I'm in a fog most of the time anyway.
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