A Brick Wall During Treatment

[Helping Hand]

Hello all,

First I would like to thank Andrew for helping me with my sign up issues.

My name is Charles and I am new to the site. I am writing for my father along with being a concerned son. After MONTHS of numerous doctor's not being able to diagnose a problem, the diagnosis of WG finally came about for my dad in January of 2011. It started with the same symptomes as many of you have said: Loss of hearing, blurred vision. And after many blood tests and seeing the blood test counts go up, they finally said "Hospital, ASAP"!

We were told 6 Chemo treatments and Prednisone. (Forgive me if I may have forgot one.)

Well here we are, end of March and 4 Chemo treatments down. He did have a bad case of the shingles which started a few weeks ago. We were told it was due to the Chemo. His bad shaking and being bloated due to Prednisone.

HERE IS OUR CONCERN:

After his release from the hospital and first chemo treatment, all his blood counts were going back down to normal levels. Like I said earlier he has now completed 4 sessions including one yesterday. Out of Nowhere, My parents received a call last night from his doctor saying his blood counts have all gone up and he needs to go back to 30mg of Prednisone rather than the 15 he was at. (Doctors dropped him from 30 to 15 over the past 3 months due to his blood counts looking good). Anyone ever experience this? WHAT HAPPENED??? Doctor says there is swelling somewhere. Im just curious if it has to do with the drugs he has been on.

It has the family nervous because he was on a great road to recovery and then this BOMB dropped on us out of nowhere. He is 62 years old but had the health of bodybuilder up until this happened. Any insight into this situation would be great.

Thank you all ahead of time for reading this post and responding. My family and I greatly appreciate it. Our hearts go out to ALL who suffer from this terrible disease.

[Sangye]

Hi Charles, welcome to the group. I know it's completely overwhelming in the beginning. If you don't have a medical background you have a lot to learn. People in this group can help you with that. It's important for you to get more details about exactly what changed in your dad's labs and what they're thinking.

Unfortunately your dad is experiencing something very common with Wegs. It isn't at all a straightforward disease and neither is the treatment. Some people are very fortunate-- they go on the drugs and go right into remission without a blip. Many don't. It's fairly common to change drugs and/or dosages and to have other complications arise.

It's very important to have someone who specializes in Wegs overseeing your dad's care. Not just a rheumatologist, and not just one who has treated a few cases. Where are you located? We might be able to help you connect with a Wegs specialist.

[delorisdoe]

ya, I was going to say...sounds pretty normal to me. Unfortunately wg and normal play out just as you described.

[Helping Hand]

Wow Thanks for the quick responses!

I wanted to add that, although as of right now I don't have the exact names, he is taking a few more medications that pertain mainly to the kidneys and helping them heal. Also, he was given a medication to help with the healing of shingles.

We do realize, especially after the phone call last night, that this is a process that takes a while. I will get the exact names of all these meds to further help you help us. I'm sure some will be familiar with them.

Thanks to those who have responded so far. Your thoughts and suggestions are appreciated.

P.S. - We are in Chicago. Weather definitely not helping.

[drz]

The reason we often refer to our treatment as a roller coaster ride is because it is seldom a straight line. Ups and downs seem par for the course and something you have to learn to accept (anyway for many of us). The important thing is to keep monitoring things and making adjustments as needed and then looking at long term trend which is usually for the better with proper treatment.

The Cleveland clinic might be your closest specialty place or Mayo in Rochester since they have direct flights.

[Jack]

It is very early days for your father at the moment and you may have to adjust the time frame for your expectation of results. It took my doctors who specialise in the treatment of this disease 5 years to bring it completely under control and of course it will never be fully cured. This is by no means an unusual situation, but some people are lucky enough to do much better. This will depend on the severity of the particular case (everyone is affected in different ways!) and how quickly it was diagnosed. All I can advise is to be prepared for the unexpected and do not try to predict the direction it might take.

[Daggar]

Hey Charles.... sorry to hear about your Dad! I hope you get the answers and treatment he needs. Our daughter Holly (14 at the time) was diagnosed in November 2010. She started the taper after 2-3 months but the Nephrologist stepped in and extended the higher dose and it has worked so far.

There is a vast amount of knowledge on here so you've found another asset in your quest to gain more info on this very confusing disease. Don't feel bad -- it confuses most doctors!

What chemo drug are they using for your Dad? How much kidney involvement is there -- serum creatinine and urea levels and/or protein in the urine? Not sure what they would be giving him for his kidneys other than a form of blood pressure med (ACE inhibitor / ARB) to avoid further damage?

Hang in there -- it just takes a bit of time....

[Helping Hand]

Thank You,

Thank you to all who have replied and put some ease to my families minds. My father is going for a blood test next week so I will have better numbers to share with everyone. This is definitely a close family here. It seems the support is second to none.

Daggar, as much as our hearts go out to EVERYONE who suffers this awful disease, it really hits home to have to learn your 14 yr. old daughter suffers from this. She must be very strong.

I hope to hear and learn a lot more about all this as the time goes on. Thanks again to all for the support.

[Daggar]

Yes, if there's anything positive to come from this type of disease it is the fact that it does bring families closer together.... nothing more valuable in the time of crisis!! A lot of friends will surprise you as well.

Give your Dad our best and let us know the lab results once you get them.

[Sangye]

Yes, if there's anything positive to come from this type of disease it is the fact that it does bring families closer together.... .

LOL Not always! Oy.