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. :laugh::blink:

[Daggar]

Sorry Sangaye... let me rephrase that .... it brings "most" families closer together but it is a challenge! We have had a lot of help so I guess we consider ourselves lucky in that way.

[Sangye]

No worries, it gave me a good chuckle. :smile1:

[Daggar]

Do you have family nearby?

[Sangye]

No, but my sangha is here.

[Daggar]

There's your "family".... it can mean many different things.... and don't forget those K-9 companions.

We're unlucky to have allergies in the group so we've never been able to have the dogs or cats. It drives Holly crazy! She has to settle for parrots.

[Sangye]

Yup to that.

What kind of parrots do you have?

[Daggar]

Pickles - Miniature Amazon
Poco - Quaker
Squeegee - Senegal

We had to sell Poco due to over aggressiveness .... he definitely needed to be in a one-bird home.

[Jack]

A lot of friends will surprise you as well.

Let me join in with the negativity too! :wink1:
I think about half of my "friends" deserted me when I was seriously ill.
My wife was disgusted and fell out with them all, but I guess that I'm more understanding and could see that they just wanted to live in their own safe world without bad things like this happening.

[Sangye]

Whew Daggar-- that's a lot of screaming! Our temple has a parrot rescue. I volunteered in there before I got sick. At the time we had about 40 parrots-- mostly large ones. You had to wear ear plugs and even then it was incredibly loud--holy smokes. We have even more rescued birds in there now. It's right next to the temple and we have a huge outdoor enclosure they can play in on warmer days. You can hear them screaming at least a mile away.

[Sangye]

I got dx'ed when I lived in Flagstaff, AZ. Most of my friends stuck around and became even closer, and I actually acquired a number of new friends who came to help me. Still it was surprising how many friends fell away--people I would have thought would never leave.

[Daggar]

Ouch!! Sorry to hear that Jack. It is still early for Holly and I'm hoping that isn't the case as she moves forward. I guess she'll discover who her close friends are and if any of them are of that inclination it'd be better to find out sooner rather than later. Time is precious -- no point wasting it on "friends" like that!!

Sangaye - here's an interesting clip of a "small" but "smart" Senegal - they are quite the characters.... ours constantly forces the miniature amazon to groom him. Only oddity -- he loves my wife yet tolerates the rest of the family!:confused1:

YouTube - Kili Senegal Parrot - Play Dead and other tricks (http://www.youtube.com/watch?v=0QCmP0CebB8)

[Sangye]

It's very common for parrots to bond with one person or even one gender. They mate for life in the wild and are inseparable from their mates. One of the macaw parrots in our aviary used to chase women around biting their ankles. One of our nuns is very quiet and subdued. One day I watched as this parrot chomped at her ankles and she just continued working. LOL

Here's the link to our aviary, with all the stories about each bird. They're as unique as children. Welcome to the Garuda Aviary / Sanctuary for Birds (http://www.garudaaviary.org/index.html)

[Daggar]

Luckily the miniature amazon is so small it isn't very loud and the senegal is one of the quietest breeds. They keep each other company and that probably helps.

Watched the video - how true!! Pet stores should be forced to show how difficult some breeds can be and stress the length of time these birds live and the "commitment" needed.

Squeegee "demands" a lot of the wife's time... not a bad thing at times!:wink1:

[Sangye]

Okay, before someone else tells us, I will self-monitor with:

:back on topic:

LOL!!

[delorisdoe]

i sipped right to the last page of this thread and thought I was going crazy...could not figure out why both of you did not notice you had spelt parents parots. I guess page 2 was important. lol

[jola57]

Aw ha ha ha