Update on my hubby....

[khaisley]

Well, we finally got the "official" diagnosis of WG yesterday. I have to say it was diagnosed in a little over a week after the first Rheumy visit. Now that it is confirmed, reality is setting in. I asked, if him not having a spleen would be a major factor in his treatment or prognosis she paused, sighed and said "yes, it will have a significant factor". When we told her he has an appointment at Cleveland Clinic next Friday, she was pleased. She was going to recommend him to go there with his spleen situation. WG has affected his Sinuses and his lungs. She said there was no scarring, but there are spots. She changed him from 60 MG of Pred to Methylprednisolone 8MG T...8 (64 mg)pills a day before 9:00. That is all it said, so I am assuing he is to take them all at once...why 8 pills? Is there not a different dosage? CC will be making the final decision on the complete treatment regiment, so chemo will be added next week. We have 2 options...don't treat and die....treat...possibly die from side effects and/or live with longterm side effects. I need to get off this pity party and know that he is going to be fine. We just have to make some changes, and pray that he stays healthy until next Friday. My daughter and I both have colds and sore throats, so we are staying clear of him and using Lysol on all door handles. I am also going to buy a dispenser for antibacterial gel at our door. Anyone that enters...needs to use. Maybe I am over reacting...but her pause and sigh was all I needed to increase my fears. A positive thing...it appears that it has not affected his kidneys! Ears and Eyes have not been checked, but he has only had minor issues with those. I wonder if CC will check those out when we are there. Any suggestions or information on this new med is greatly appreciated. I am so thankful for you all that have been through and currently going through the fire, went into remission, survived relasp and share your stories to help us new to this disease.
Kelly

[Pete]

Hi Kelly,

Here's hoping your hubby will be ok. I see Dr Villa Forte at Cleveland Clinic, and I can assure you that she's very thorough. My first appointment with her lasted almost two hours. Follow on appointments last 30-40 minutes. I feel that she gives me enough time. I have a written list of questions and concerns that we review completely before I leave. She also gives me a written after visit summary to make sure I know what I need to do.

[windchime]

Kelly, Sorry to hear you are both going through this. I'm sure it's a relief to have the dx as nasty as this disease is. The predisone comes is many different MG sizes down to 1mg. It may be that they will step him down 8mg at a time, then it may all change after you go to CC next week. They want him to take the Pred all at once in the AM because that mimics the natural pred release of the adrenals. Also it may affect his sleep like not sleeping much. Hopefully you and your daughter will get over your colds soon. Keep us posted on his CC visit. Hugs to all of you. :hug3:

[debhaz22]

Hi Kelly,
I'm sorry for what you are going thru, but at least now you have an answer and you can move forward and do whatever needs to be done.
I see Dr. Villa Forte at Cleveland Clinic and she sent me right to an appointment to see an ENT while I was there to check nose, ears, sinuses... So I imagine she'll do the same with your husband.
I'm not familiar with your husband case to diagnosis, can I ask what started the concerns that it may be WG? I am still in the "we're not 100% sure it's WG yet..." stage.
Hugs to you all, hang in there, and there's nothing wrong with a little pity party now and then, just be sure to invite the right people!!

[khaisley]

I wanted to see her, but there was no way they could squeeze him in with her. I just wanted to get him there ASAP. We have everything written down and writing questions as we think of them. My sister is also going with us, she is an RN and I think it will be nice to have another medical person in there. Poor doctor...he will probably ask PJ....do they always ask these many questions?!?!?! I will be asking for a written summary because these things can be a bit overwhelming! Thank you and I will keep you update on our visit!

[khaisley]

im not too familiar with these threads yet..lol
She does have him talking all 8 pills at once. Is this a more powerful steriod? These meds really scare me but I try not to make it obvious to him. We will take it one day at a time, and I am very thankful for all of you in this forum!
Thank you!

I believe he has been in a flare up the past 3 1/2 months. Pretty much was blamed on chronic bronchitis, sinuitis, Gerd, chronic upper respiratory infections, colds, chronic blood clots and lots of blood when blowing nose..then a couple weeks ago he started experiencing a rapid onset of joint pain...severe joint pain and it was moving. Since that was a complete different symptom I said..thats it. I took him to his GP and his GP referred him to the Rheumy. She looked over all the blood tests, history, examined him and came back into the room and said she was pretty confident we were dealing with WG. I had suspected this after the GP visit, I went home and researched...saw symptoms of WG and read it to PJ, he was like "yep, pretty much sums it up". We didn't tell her what we suspected so I was very surprised when she said that on the first visit. He has had a positive nasal biopsy, and Chest CT scan. We are going to CC because he also doesn't have a spleen, which complicates things and his CC doc will contact our local Rheumy and will do what ever can be done locally. We are hoping to only have to make the trip to CC every 3-6 months...but will obviously do what we need to do! I hope they are able to find out what is going on with you! are you currently being treated, even if it has not been confirmed?

[Debbie C]

Hi Kelly,well at least you got an answer, I am sure it is not the one you were hoping for but now the treatment can begin. Did they change him from Pred to Methylprednisolone due the the no spleen issue ? I really don't know what the difference is but I have heard of other people taking that.Who are you going to see in Cleveland. I see Dr. Hoffman. It is good that your sister is going..maybe she can think of other questions you might not. And the first visit ( actually everytime) I've been there, it has lasted 2-3 hrs.
If you and your daughter are really sick maybe he should wear a mask until you are well. Good luck to all of you.Another thing if you are not certain on how to take the pred. ..page your doc. or ask the pharmacist,to be on the safe side.

[Allisonquast]

Looks like everything is coming together nicely. Best of luck at cc and were all praying in our own way that he gets healthy!

[pberggren1]

I can certainly understand your fears Kelly. This will be a major learning curve for you guys.

First of all, I am surprised that the Rheumy has not prescribed ctx. And yes, all 8 pred pills at once.

Which doctor will you guys be seeing at CC? When you go to CC get them to check out everything. You learn quickly that even the best docs make mistakes and you have to be on top of everything. You have to question everything. But most of all you have to learn everything quickly and become your own best doctor.

Your husband will probably live many decades to come.

[drz]

change him from Pred to Methylprednisolone due the the no spleen issue ? I really don't know what the difference is but I have heard of other people taking that.

The latter is consider about 1.6 x of regular pred so 100 methylpred should equal about 160 of pred so I would regard it as an increase. It has other benefits too and is often used for inpatient care when things are critical. The last time I had to do inpatient care they put me on 100 units per day but I remember at one time I received a 1000 units of it. It should help reduce inflammation and symptoms of Wegs.

[LillysMom]

After living for over 20 years with Wegeners (with our daughter) the only advice I have is pick up the phone and MAKE someone who knows something talk to you, referring to the medication you have a question about. You have to be an advocate and very firm with the doctors you deal with, or most will blow you off. Looks like you have a lot of specialists working on his behalf. am not familiar with some of the medications that are being recommended for your husband, but I hope you have a doctor who is willing to collaborate with other professionals. From our experience, Wegeners takes a lot of phone calls! Try not to live with a lot of questions, call the doctors and make lists of questions to ask when you have an appointment. When our daughter was diagnosed she took prednisone and cytoxan. Bactrim was added and now an infusion every 6 months. So far it has not affected her kidneys either, but ears, lungs, sinuses, etc. Everyone is so different. Our hopes and prayers for you two are that confusion will not rein, and that a good treatment will be agreed upon by his doctors and that you two will understand what is being done, why it is being done, and you can relax and not have this disease control your lives. You are not in this alone. Let us know when your situation begins to calm down and you have more of a peace with the situation.

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[khaisley]

Thank you all very much for all your support and advice! We are actually on our way to Cleveland right now! His appt is at 10 am. I have everything written down and a list of questions... As does my hubby and sister (she is an RN and is going with us). I am not sure why the Rheumy didn't put him on cytoxin, the only thing I can think of is she wasn't sure due to his no spleen issue?! I'm sure tomorrow he will be put on chemo of some sort. He did wind up on an antibiotic because of an infection in his throat. The RN's told him that the GP had a meeting yesterday morning with all of the staff letting them know what he was diagnosed with and that he is to be a very high priority patient due to the severity of this disease. He is to be brought back immediately and not left in the waiting room around other sick patients. He also said that PJ is to always be scheduled with him, not the NP's. I really appreciated that! It can be a pain trying to explain everything to a new person before they let you talk to the Dr or their RN. We are very blessed to have such support from our GP and Rheumy! I do have some concerns with his lungs and will ask them to check them again. We also got a picture of a clot... If that's what you call it...that came out of his nose. Oh my...it seriously looked like it was part of his brain! It was so gross and sounded like a torpedo when it blew out! Will keep you updated and thanks again for your prayers and support.

[Debbie C]

Good Luck tomorrow,I hope you get the answers and meds needed to get your hubby back on the road to recovery. Keep us posted after the visit? Are you seeing an Ent or rheumy there?

[mishb]

Good luck at the appointment. I hope they start him on the correct meds and then things will start to get better.

I'm glad you are going to CC

[MikeG-2012]

We also got a picture of a clot... If that's what you call it...that came out of his nose. Oh my...it seriously looked like it was part of his brain! It was so gross and sounded like a torpedo when it blew out! Will keep you updated and thanks again for your prayers and support.

Welcome to the wonderful world of SINUS CRUSTING! From the files of, "OMG!! Where did THAT come from..."

Getting the disease under control and a lot of nasal rinsing will take care of the bad crust issues. After two years, mine are pretty much under control now. No finger sized crusts anymore, just stuff that looks like what normal people would blow into a tissue.

Good luck at your appointment! I hope all goes well!!