New Member Intoduction - More Info on Husband and I

[FERRETSMOM]

His medications are as follows - AmLODIPine Besylate 5 mg oral tablet (one daily), Cyclophosphamide 50 mg oral tablet (one tablet 2 times daily), Gabapentin 300 mg (2 capsules 3 times daily), Hydrochlorothiazide 25 mg oral tablet (one tablet daily), Sulfameth/Trimethoprm (one daily 3 times week) and Prednisone 20 mg oral tablet, 2 daily.

Here is a short summary of how things happened: six months of missed diagnosis, foot pain (misdiagnosed as gout), sever muscle pain from waist down, shoulder and arm pain, blood work, severe sinus infection, MRI showed something behind inner ear, GP referred him to ENT, ENT put tube in right ear, more blood work, did a nasal scope, said I had Weg/go to a rheumatologist, mmore blood work, positive for Weg, started medications 12-19-13. He still suffers from feet pain.

Now I will share a little personal history with you. My husband and I have been married 36 years. We have two beautiful daughters. One is in heaven - Donna died 5 years ago from complications of juvenile diabetes. The other daughter, Valerie lives in Milwaukee. She is a graphic designer and has a wonderful dog, Pickles - our grandog. We also have a wonderful grandaughter, Kylie who live with her Dad in Oklahoma. Kylie is Donna's daughter. In a short time span of ten years I lost my Dad, daughter, mother and sister. My great husband helped me cope with all of this. Of course all those deaths affected him too. So you can understand my first reaction after hearing my husband's diagnosis - can you spell "not again". However, we are both being VERY positive about this "turn" in our lives.
My husband built his own company - 30 years strong last year. He owns Precision Laser Alignment. He has traveled all over the country. He has not been able to work for months and that is hurting him. He takes such pride in his work and hates to tell customers to put a job on hold. He uses lasers to align machines. It is a very specialized line of work.
His other passion in life is boating on the Mississippi River. We love boating! That is one place my husband relaxes - at the wheel of his boat.
Right now we are trying to decide if he should retire. I have gone on too long in this post. I will try to come here more often.
Oh, I work at the courthouse. I am in charge of the judges schedules and jury summons. Thanks for listening everyone! Please reply - thanks!

[Pete]

Welcome aboard, Ferretsmom. Sorry you had to find us, but glad you did.

There are a lot of great people from all over the world on here. So, there's almost always someone on here who can answer your questions, validate your experiences and emotions, or just let you vent.

Where are you located? Sounds like somewhere in the Midwest. If you're close to Mayo Clinic, you may want your hubby to visit one of the Vasculitis specialists there. If not, perhaps his doc can consult with one. That will ensure your hubby's treatment is in accord with the latest protocols. Your hubby needs to stay well-hydrated while on cyclophosphamide. It can be rough on the bladder.

Good luck!!

[FERRETSMOM]

Thanks Pete. We live in Moline, Illinois which yes is in the midwest. I am very familiar with the Mayo Clinic. my daughter who died from complications of juvenile diabetes was on their transplant list for a kidney and a pancreas. We made many visits there. My husband has a team of 4 doctors now and they are providing him with good care. However, I would like to visit Mayo Clinic in the future because they have the latest information available. Take care!

[Alysia]

welcome to our weggie family, Ferretsmom.
my heart is going out to you, I am so sorry for all those painful losses
and now, that wg of you husband enough is enough.
thanks for sharing with us. plese continue to write.
we are holding your husband's hand and yours, all the way

[DJS]

His medications are as follows - AmLODIPine Besylate 5 mg oral tablet (one daily), Cyclophosphamide 50 mg oral tablet (one tablet 2 times daily), Gabapentin 300 mg (2 capsules 3 times daily), Hydrochlorothiazide 25 mg oral tablet (one tablet daily), Sulfameth/Trimethoprm (one daily 3 times week) and Prednisone 20 mg oral tablet, 2 daily.
!

Welcome to the group! I noticed that he is on two tablets of cyclophosphamide daily. If that is the same as cytoxin, that is what the lung Dr prescribed once at 8am and once at 4pm. But then he consulted with a rheumie specialist familiar with Wegener's then he changed it to both tablets in the morning with plenty of water. The reason given for the change was that the pills are so toxic that not enough water would be present for the afternoon dose and it may damage the kidneys.
you may want to consult with the prescribing Doctor to express a concern. Also be aware that pred eats bones and also teeth as we are now learning. I also kept a record of every drug prescribed and read the side effects, scares the crap out of one. It took about a year to get on top on this, but my bride was in great shape before, and now is getting back to her old self after two years. Admitted to hospital May 5, 2012. Now dealing with bad teeth and planters warts on her feet.

Dennis

[kelly]

your story sounds like a deja vu I also have been married for 36 years and also have lost a daughter in 2005 and was diagnosed with wegeners in 2008. I also have 2 wonderful granddaughters I also run a verry succesful business. Your husbands symptoms are very close to what i had. i was so glad i found out what i had so i could start treating this yucky disease
I was also fortunate that i didn't miss much work ( i also love what I do) I was on prednisone untill Jan of this year i had put on a wack of weight I have always been a big, strong and active but i really got big. so 3 years ago my wife and I joinrd a gym i still go 3 times a week in the winter and golf 2to 3 times a week in the summer and i lost all the weight i put on and i am stronger then i have ever been i have been i am very fortunate i didn't have any side effects to the meds except when i take my weekly dosage of methotrexate i am tired for a couple of days again i am so fortunate as i still work around 10 hours a day. my glass is always half full if i can give any advice is to try to be positive there is always someone who is worse off then you my doctors are so impressed with my attitude i am not a complainer i just deal with it and i am alive mind you iagain i am so fortunate as i read a lot of posts of people in this form are so sick my feelings go out to them. anyway i don't post much but like i said your storry is a deja vu and wanted to say something i hope it all works out for the both of you

[windchime]

Welcome Ferretsmom, I'm so sorry for all the losses you've suffered. It sounds like you've done a good job of coping, but I'm sure it's taken it's toll on you. Make sure through all this as your husbands caregiver that you take time for you. You will also need some down time to recover from everything as well as learn to cope with this new life you now have. There are other caregivers on the forum that will hopefully chime in for you.

This disease will require some life style changes for your husband I'm afraid. Stress is one of our worst enemies as it affects the adrenals and they're already being screwed with because of the prednisone. That is the very unmedical explanation of what stress does to them (but the truth.) Stress puts our bodies on high alert when it needs rest to recover from the disease. So retirement is probably a good option for him. If he is able maybe he can do some consulting in the same line of work, but with fewer hours and less stress (hopefully,)

I'm on CTX also, but 200 mg in the morning. Like Dennis suggested check with your doc on taking all the CTX in the morning otherwise it sits in the kidneys and bladder overnight and is very toxic. Sorry to repeat that, but it's very important as CTX can cause bladder cancer even many years down the road when you're no longer on it. So anything that can be done now to mitigate that is in his best interest. The CTX dose seems a little low as it is based on weight. Just an observation on that. Is the gabapentin helping the foot pain? Is it a neuropathy type of pain? I take Lyrica for nerve pain in my feet and along with Mirapex works fairly well. Just a thought for down the road if you need it. Side effect of the Lyrica is weight gain in some people. The rest of the meds seem pretty standard for this disease. Adding folic acid may help with any hair loss he is having and a B complex plus a B12 vitamin might help with the muscle pain as they are both muscle vitamins.

I hope this helps you in some way. Please keep us posted on his progress. Hugs to you both.

[woz]

Hi Ferretsmom, I hope things are starting to get better. This is the best place to find out information, read the posts, already here, and ask plenty of questions, the more you know the easier it gets, especially when talking to doctors. As Pete said, drink plenty of water when taking cyclophosphamide, and especially when taking Sulfameth/Trimethoprmg. All the best.

Regards Woz......

[Jaha]

Welcome to group and I hope that you find the support that you and husband need for this journey.
I am so sorry that you two have had to get this dx,on top of all the terrible losses of loved ones,
in such a short period of time. I've been married 30yrs and this has been such a life changer.
I too had my own business and it was really hard to close and go on disability, but like others here
Have said, the stress was bad for me. I was dxed in09/10 and still not in remission, I finally quit working
In 09/12. My point is maybe I could have achieved remission if I hadn't been so stubborn about taking
Care of business instead of taking care of me. Go boating, take care of you and your husband, stay strong.
From a fellow boater on the Ohio River, best of wishes to you and your family.