Nasal Wegeners diagnosed in August 2013 . Losing confidence in the recent past.

**adith** · 10-28-2016, 06:23 PM

@ Gab122 , annekat .... Thanks for those replies ... I have shared with my mom as to how she is not alone in her battle and that many across the globe feel much the same way. Well she does take a tablet called Anxit to keep herself calm and also to get some sleep. Beyond all these medications there are some unavoidable irritabilities and some inevitable downcycles in mood . I understand that it has to be dealt with . @ annekat , like you said my mother too is not very keen on travelling but we did the singapore trip as it is closest to my country and Singapore is one of those countries which has been praised so much and rightly so and hence we went there for a change . No more travel for my mother as she saw the place she always wanted to and now the rest does not matter to her . @ Gab122 Also I am Adith (her only son) and it is very much a male name

.

@ Gab122 can you tell us what medication you are taking to keep anxiety or mood swings under control???

Also friends , i wanted to know how many of you have issues with taste buds going numb . It is relatively less discussed and so I was curious to know.

Overall my mother is doing fine (new normal for her) and she still cooks for us and does most of her daily routines herself but yea with difficulty. Its just that the medication for almost 3 years after diagnosis worked pretty great to the extent that she or for an outsider it was as though she had no ailment and was quite healthy . Anxiety only in the recent past for about past 6 months where the normal for her is going down as days and weeks pass by.

Anyway friends , I am grateful that there is a community with which i can share and get some feedback. ALL the best for everyone and keep posting

**Gab122** · 10-31-2016, 10:34 AM

@adith you are a good son.

I take Effexor for my anxiety and it helps a bit with depression. I tried other meds too prior to this (Wellbutrin, lexapro, Prozac) and it may take a while to find the right med for your mom. I am mostly calm and not irritable (tho prednisone does make some people irritable) I am perhaps only slightly less patient with my husband and 12 year old daughter at times. But not usually. I think getting enough sleep and resting when I am tired is really important. I think I'm close to your mom's age. (?) I'm 49. It is a stage with hormone fluctuation already. Then when you add medication side-effects and the anxiety and depression of an incurable disease... it's a heavy burden at times.
Tell your mom, Gabrielle in America is thinking of her and saying a prayer.

maybe she would enjoy being on this forum herself as well? Does she speak English?
Peace

**annekat** · 10-31-2016, 02:36 PM

Adith, to reply to your question about taste buds; yes, I think mine have gone a little numb, but not to the point where I can't enjoy the taste of most food. But texture of food has always been important to me and I think now is even more so. I cannot smell, and I know smell and taste are related, so I guess I'm lucky I can taste pretty well. I know that smell and taste can return, though at this point I'm not expecting smell to return for me. Can your mom smell things? Everyone is a little different. I hope she will regain any of her senses that have been lost or impaired by this disease.

**Lilly** · 11-10-2016, 08:37 AM

Hi, I have had wegeners for 26yrs. At first, when I was diagnosed, I had Granuloma tumors in my lungs. Oral Cytoxan took care of most of them, and they shrunk to little dots of scar tissue. No lung issues again until 2014, when I had pneumonia symptoms....and then it all started. I did not have any wegeners tumors in my lungs, but I was having a very hard time breathing, and I was wheezing a lot. I saw my PCP and he gave me breathing treatments and antiobiotics, and he said I had developed Asthma...Then when lungs were not getting better, I went to my Cardiologist....Same thing, CT showed no wegeners tumors, but areas of clusters of spiculated density. (They had NO IDEA what is going on) But that's not their fault, so I was put on home breathing treatments, and an inhaler, and a follow up CT Scan. 3 months later, CT scan no changes, but I am still having shortness of breath, heavy wheezing, especially at night. Sooooo, Cardiologist finally did a Bronchoscopy. Everything looked good, which surprised him, but when he rinsed my lungs with water and sent it off for culture, it came back that I had MRSA in my lungs. YIKES!!!!!! So I had a pretty heavy treatment for that for a month with the strongest antibiotics that will kill this infection. After a month, I was having some relief,(that was last year) but even now, I am on the inhaler "Spiriva" and I am still short of breath, and get tired easily. I also got a blood clot in my lung that was found in May. So now I am on blood thinners. I am going back to my cardiologist this month, on the 29th....I will let you know how all the tests on my lungs turn out. Best of Luck....So sorry that you are going through this.....its not easy, but we have to stay strong, listen to our bodies, do our best to not get depressed, and if you need to vent your aggravation, just do it here! We will listen :-) Blessings.... <3

**adith** · 03-01-2017, 04:23 PM

@ Lilly , @ annekat , @ Gab122 and others who have replied to this thread ...... Thanks a bunch for all the information shared . However i have to share a bad news to you all which is that my mother passed away on 25th feb 2017 morning around 7.30 am approximate in our house itself.

To give a brief history since i last updated this thread as to what unfolded in the last 2 to 3 months. So we got back from Singapore in October and as stated before the shortness of breath , wheezing , asthma were showing no signs of relief . So rheumy said he will start her on Rituximab . So she was given rituximab i guess 500 mg twice with a gap 15 days . Doctor had informed us that it might take upto a month or a little more for it to start reacting . So my mother held on to her life with the some hope that rituximab might work like how the cyclophosphomide infusions worked for her during early diagnosis . So after rituximab injections twice while all her breathing problems and other usual side effects of prednisone persisted she did get some releif and just a little energy sometime after 20-25 days after rituximab injections. As you all know the regular crp and esr reading check up was scheduled and was done a week before the unfortunate incident happened . Astonishingly when we had her checked up with the rheumy after 2 injections of rituximab for the last time , although she still was very weak and hardly had any energy and ofcourse breathing issue was still a nightmare , her CRP AND ESR readings were very much in control and at that point she was on 15mg of prednisone for maintenance. rheumy was very cautious with the dosage of prednisone drop in my mothers case always , however that last meeting with the rheumy when he saw that crp and esr reading were pretty much in control and that rituximab had probably started to work , rheumy took a little confidence from those readings and also to relieve those horrible side effects of prednisone he suggested that she drops her prednisone from 15 mg to 10 mg and as usual he scheduled us to meet him again in a month. While coming back after this meeting with the rheumy , since i had read information about the disastrous effects of dropping prednisone , i had discussed with my mother beyond rheumy suggestion that she can try dropping prednisone as the rheumy suggested only if she felt her body could handle it. So we got back and she dropped prednisone on the 1st day after the suggestion and she felt miserable . She complained that dropping of prednisone was making her even weaker . unfortunately on that same day she had taken this tablet called osteopos which is given to most WG patients but that tablet is not a regular one. From experience we knew that the day she takes osteopos , she always suffered and had a bad day on the day she took the tablet. So it became hard for us to decide whether she was feeling horrible due to usual osteopos tablet effect or the dropping of prednisone . Anyway i did not want to take a chance and with discussing with my mom , i told her to step up 5mg of prednisone back to 15 mg with which she had always maintained her condition . one day passed by and the situation somehow did not get better . Usual no sleep in the night , severe breathing issue and asthma continued.basically she dropped prednisone for just a single day before we ourselves stepped her back to original dosage. Although we stepped her back to original dosage , situation did not improve and on the early hours of 25 th feb 2017 around 4.30 am , her suffering was quite severe and my dad called me to come down to see her since he was also getting very tensed about her suffering the entire previous night. At 4.30 am in the morning , me and my mom and dad discussed amongst ourselves that we cannot wait for a month of this kind of suffering and then meet rheumy according to usual monthly schedule but rather we visit him that day itself . Usually she used to have no sleep in the night but was able to find some relief at around this time and get some sleep from 5 to 7 am. So my mother said finally on that morning after we discussed amongst ourselves that we meet rheumy after 7 since she always found some sleep during those hours . With this discussion she tried sleeping for a bit and asked me and my dad also to go to get some sleep and discuss again at 7 after coffee. At 7 my wife got up and has gone downstairs to prepare coffee. She has asked my mother if she wanted coffee and my mother said yes with nodding her head but not orally. At this point my mother has got up from the Drawing room where she was resting herself sitting (Offlate she used to get some sleep sitting rather than sleeping because of the breathing issue) and it seems with great difficulty she managed to come back to the bedroom where my dad was sleeping. She sat next to my dad with no reactions . My father tried telling her to sleep a bit but again there was no reaction from my mother . In the mean time my wife had brought coffee to the bedroom and observed nil response from my mother even while my father was making an effort to persuade her to lean on him for support if not sleep completely. Both my wife and my father were shell shocked to see total 0 response from my mother and it seems she was counting her last breaths. My wife shouted out to me to inform of the emergency and i immediately ran down to her bedroom and in the presence of all the three of us her multiple agonies came to an end within seconds and it was all over . With this my mothers journey came to a close at the age of 53 and we had lost the central support of the family.

**drz** · 03-01-2017, 05:42 PM

Sorry to hear this. Hope you and family are getting the support you need.

**annekat** · 03-03-2017, 06:08 AM

Adith, I'm very sad to read this, and thanks for sharing with us. Your mother was too young to go this way. Treatment of WG has so many variables and doctors sometimes have to guess at the right course of action. You were right to return her to her previous pred dose. A jump from 15 to 10 is too fast for most people after being on it long term. What a let down after seeing her blood work improve. I'm so sorry. I wish you all the strength you can find to get through this difficult time and eventually be at peace. With love from all of us.

Sent from my MotoE2(4G-LTE) using Tapatalk

**vdub** · 03-03-2017, 07:12 AM

So sorry to hear about this. I have added a candle in honor of your Mom to our Wegs map.
https://www.zeemaps.com/map?group=242717#

**Alysia** · 03-12-2017, 04:31 AM

I am deeply sorry for your loss, adith. May your mother rest in peace. Thank you for sharing with us....

we just lost 2 more weggies only this week (friends on facebook)...

Do the docs tell what was the cause of her death ? Was it an adrenal crisis ? Something with her breathing ? Other ?

You did the best you could have done with her, including your good advices about the pred.
Sending prayers for strength and consolation.