[Rustyroom]Updates on Rob/long

[Guest guest]

Hello gang...

Well, we went to Cincy Thursday and made a fun trip out of going since Rob was off for a short fall break. I had my rheumy appt first on Thursday, then we left on our trip. I am getting some joint changes in my hand, I can't flatten my right palm fully anymore. They increased my MTX. It is oral. I am up to 25 mg a week now. We talked about Enbrel, Remicade and Humira, and MTX injections. The nurse practicioner said they will do whatever I decide...can you imagine...I get to call the 'shots'. Well, really, not feeling my arthritis is severe enough to jump into the new drugs, I want to give the increased dose of MTX a chance, and if that doesn't do it, I'll probably go for the MTX shots next. I go back December 5 and maybe by then either I'll have good results or my own body will tell me what I need to do. I am also having some trouble with the small joints in my feet and toes. But I still feel that this is pretty mild.

Anyway...Rob and I headed to downtown Cincy, went to a mall there, then headed out to the suburbs. We found a Pro Bass Shop complete with all the camo gear a young man could ever want, and the ultimate for Rob....paint ball equipment (he loves to play paintball, but doesn't hunt). They even have a huge waterfall and giant aquarium in this store! It was too awesome. Then we found another mall and of course, Rob said that bribery was in order for his doctor's visit on Friday, so Kay Bee toys was the answer. I found a couple of goodies at bath n' body and we were tired and sore at this point, so headed to the motel and soaked in the hot tub. It was heaven. We got up this morning to frost on the windows!

We were supposed to see Dr. Strife, but for some reason we saw a Dr. Mitsnefes. He was a very nice man. He said that it is obvious that Rob's gross hematuria isnt stopping...I brought him a calender with the occurrences listed....usually 2 -3 times a week. He said that due to the fact that there is no protein in Rob's urine at this point, he does not feel Rob needs a renal biopsy. We were so glad!! He does think there may be some correlation between Rob's bone and calcium loss and this bloody urine. He thinks it is one of two things...either Rob is excreting so much calcium that he is making small stones and this is causing the bleeding, or he does have the beginnings of Iga nephropathy. If it is the calcium that's a problem, they use a drug called Diurel. If it is Iga nephropathy it can be scarey, if you have the aggressive form it leads to kidney death and the need for dialysis or transplantation. But, in Rob's case, the fact that he has no protein in the urine is indicative that if he does have Iga nephropathy, it is not yet active and probably mild. In that case, he will just have to have a urinalysis every few months to check for protein. If protein starts showing up, then it would be time for the renal biopsy.He was also concerned about Rob's bone loss. He had been on Actonel for that, but last month the endocrinologist discontinued it, because he said that the growth hormone Rob is on would take care of that. I told this doctor that, but he was unconvinced, so he wants to recheck Rob's bone density there at Cincy.He says there are drugs for osteoporosis that are given IV once or twice a year that might be helpful. He'll talk to us more about that when he gets the bone density/dexa scan results. He also wanted to check a spiral CT of Rob's kidneys. He said that the renal ultrasound is good to rule out tumors, etc, but that the CT would allow us to see more in depth to see if there were other abnormalities or small stones.I really liked his approach. Instead of the wait and see attitude of the other doctor, he thought that this bloody urine has been going on long enough (5 months) and we needed to get more aggressive in the investigation and fully find out what is going on. He also said that he would call me with the results, but they also worked with me to see Rob back for a follow up on the exact same day he sees Dr Passo in Cincinnati, on December 30, so we don't have to come to Cincinnati so much. Rob will have the spiral CT and Dexa scan in Cincy on November 6.

He also has to go to the infectious disease doctor this coming Tuesday to find out about the INH treatment for his positive TB test. Then, we'll be able to get a timeline from Dr. Passo on when he can start the Enbrel. So I am hopeful that by the time we go back 12/30, we'll have a lot more answers, find out about starting Enbrel, and maybe, just maybe, 2004 will be a fantastic year for Rob. Wish us luck!Love, and Rob 14 Spondy

[Guest guest]

Sounds like you had a pretty positive visit with the dr. Glad he sounds like he is trying to get to the bottom of the blood in the urine. Good luck to you and hope that Rob does well. Michele (16,pauci & spondy)

-----Original Message-----From: snooksmama@... [mailto:snooksmama@...] Sent: Friday, October 24, 2003 6:57 PMRustyroom ; Subject: [Rustyroom]Updates on Rob/long

Hello gang...

Well, we went to Cincy Thursday and made a fun trip out of going since Rob was off for a short fall break. I had my rheumy appt first on Thursday, then we left on our trip. I am getting some joint changes in my hand, I can't flatten my right palm fully anymore. They increased my MTX. It is oral. I am up to 25 mg a week now. We talked about Enbrel, Remicade and Humira, and MTX injections. The nurse practicioner said they will do whatever I decide...can you imagine...I get to call the 'shots'. Well, really, not feeling my arthritis is severe enough to jump into the new drugs, I want to give the increased dose of MTX a chance, and if that doesn't do it, I'll probably go for the MTX shots next. I go back December 5 and maybe by then either I'll have good results or my own body will tell me what I need to do. I am also having some trouble with the small joints in my feet and toes. But I still feel that this is pretty mild.

Anyway...Rob and I headed to downtown Cincy, went to a mall there, then headed out to the suburbs. We found a Pro Bass Shop complete with all the camo gear a young man could ever want, and the ultimate for Rob....paint ball equipment (he loves to play paintball, but doesn't hunt). They even have a huge waterfall and giant aquarium in this store! It was too awesome. Then we found another mall and of course, Rob said that bribery was in order for his doctor's visit on Friday, so Kay Bee toys was the answer. I found a couple of goodies at bath n' body and we were tired and sore at this point, so headed to the motel and soaked in the hot tub. It was heaven. We got up this morning to frost on the windows!

We were supposed to see Dr. Strife, but for some reason we saw a Dr. Mitsnefes. He was a very nice man. He said that it is obvious that Rob's gross hematuria isnt stopping...I brought him a calender with the occurrences listed....usually 2 -3 times a week. He said that due to the fact that there is no protein in Rob's urine at this point, he does not feel Rob needs a renal biopsy. We were so glad!! He does think there may be some correlation between Rob's bone and calcium loss and this bloody urine. He thinks it is one of two things...either Rob is excreting so much calcium that he is making small stones and this is causing the bleeding, or he does have the beginnings of Iga nephropathy. If it is the calcium that's a problem, they use a drug called Diurel. If it is Iga nephropathy it can be scarey, if you have the aggressive form it leads to kidney death and the need for dialysis or transplantation. But, in Rob's case, the fact that he has no protein in the urine is indicative that if he does have Iga nephropathy, it is not yet active and probably mild. In that case, he will just have to have a urinalysis every few months to check for protein. If protein starts showing up, then it would be time for the renal biopsy.He was also concerned about Rob's bone loss. He had been on Actonel for that, but last month the endocrinologist discontinued it, because he said that the growth hormone Rob is on would take care of that. I told this doctor that, but he was unconvinced, so he wants to recheck Rob's bone density there at Cincy.He says there are drugs for osteoporosis that are given IV once or twice a year that might be helpful. He'll talk to us more about that when he gets the bone density/dexa scan results. He also wanted to check a spiral CT of Rob's kidneys. He said that the renal ultrasound is good to rule out tumors, etc, but that the CT would allow us to see more in depth to see if there were other abnormalities or small stones.I really liked his approach. Instead of the wait and see attitude of the other doctor, he thought that this bloody urine has been going on long enough (5 months) and we needed to get more aggressive in the investigation and fully find out what is going on. He also said that he would call me with the results, but they also worked with me to see Rob back for a follow up on the exact same day he sees Dr Passo in Cincinnati, on December 30, so we don't have to come to Cincinnati so much. Rob will have the spiral CT and Dexa scan in Cincy on November 6.

He also has to go to the infectious disease doctor this coming Tuesday to find out about the INH treatment for his positive TB test. Then, we'll be able to get a timeline from Dr. Passo on when he can start the Enbrel. So I am hopeful that by the time we go back 12/30, we'll have a lot more answers, find out about starting Enbrel, and maybe, just maybe, 2004 will be a fantastic year for Rob. Wish us luck!Love, and Rob 14 Spondy

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[Guest guest]

Hi ,

Wow! It sounds like you and Rob both had incredibly effective

appointments. And, even better, that you were also able to turn the trip

into a fun mini-vacation, too. What could be more fun than enjoying a

day of browsing and shopping, and then being able to relax with a soak

in the hot tub afterwards?

I hope the increased dose of Methotrexate is able to get things better

controlled for you. If not, like you said, trying the injected form

might help. You won't let it get too far before you make a switch to

something that's more effective for you. I think it's wonderful that

your doctor is so willing to work with you cooperatively, according to

what you feel may be the best treatment for you. They obviously realize

that you are a well-informed health care consumer, one who knows a lot

about the disease and the avilable treatments.

That must have been a big relief, for the doctor to feel that it was not

necessary, at least not yet, for Rob to have the renal biopsy. Hopefully

they will be able to learn a lot from this upcoming CT scan. After the

results are back from the bone dexascan, and you speak with the doctors

about the possible need for Rob to start re-taking the Actonel, please

do let us know. 's endocrinologist discontinued his miacalcin once

he started taking growth hormone. I wonder now, after reading your post,

if maybe that wasn't the best idea?

I'm a little bummed out right now, since the endocrinologist cancelled

our appt scheduled for last week, at the last minute. His receptionist

phoned us late Wednesday afternoon, saying he had a meeting come up and

couldn't see us Friday as planned. Could we make it in on Thursday,

instead? I guess they forgot that we don't live on that island and our

flight reservations had been made nearly a month ago. So had my

arrangements for child care, for my daughter. Well, since the President

was here for a 12 hour visit on Oahu, flights were really hard to come

by. I've since heard that many roads were closed too, so I guess it's

just as well that we weren't able to change our flight. Even if we flew

over we might have had a hard time getting to where we had to go.

Needless to say, now we have to go ahead and reschedule.

Take Care,

Georgina

snooksmama@... wrote:

> Hello gang...

> Well, we went to Cincy Thursday and made a fun trip out of going since

> Rob was off for a short fall break. I had my rheumy appt first on

> Thursday, then we left on our trip. I am getting some joint changes in

> my hand, I can't flatten my right palm fully anymore. They increased my

> MTX. It is oral. I am up to 25 mg a week now. We talked about Enbrel,

> Remicade and Humira, and MTX injections. The nurse practicioner said

> they will do whatever I decide...can you imagine...I get to call the

> 'shots'. Well, really, not feeling my arthritis is severe enough to jump

> into the new drugs, I want to give the increased dose of MTX a chance,

> and if that doesn't do it, I'll probably go for the MTX shots next. I go

> back December 5 and maybe by then either I'll have good results or my

> own body will tell me what I need to do. I am also having some trouble

> with the small joints in my feet and toes. But I still feel that this is

> pretty mild.

> Anyway...

> Rob and I headed to downtown Cincy, went to a mall there, then headed

> out to the suburbs. We found a Pro Bass Shop complete with all the camo

> gear a young man could ever want, and the ultimate for Rob....paint ball

> equipment (he loves to play paintball, but doesn't hunt). They even have

> a huge waterfall and giant aquarium in this store! It was too awesome.

> Then we found another mall and of course, Rob said that bribery was in

> order for his doctor's visit on Friday, so Kay Bee toys was the answer.

> I found a couple of goodies at bath n' body and we were tired and sore

> at this point, so headed to the motel and soaked in the hot tub. It was

> heaven. We got up this morning to frost on the windows!

> We were supposed to see Dr. Strife, but for some reason we saw a Dr.

> Mitsnefes. He was a very nice man. He said that it is obvious that Rob's

> gross hematuria isnt stopping...I brought him a calender with the

> occurrences listed....usually 2 -3 times a week. He said that due to the

> fact that there is no protein in Rob's urine at this point, he does not

> feel Rob needs a renal biopsy. We were so glad!! He does think there may

> be some correlation between Rob's bone and calcium loss and this bloody

> urine. He thinks it is one of two things...either Rob is excreting so

> much calcium that he is making small stones and this is causing the

> bleeding, or he does have the beginnings of Iga nephropathy. If it is

> the calcium that's a problem, they use a drug called Diurel. If it is

> Iga nephropathy it can be scarey, if you have the aggressive form it

> leads to kidney death and the need for dialysis or transplantation. But,

> in Rob's case, the fact that he has no protein in the urine is

> indicative that if he does have Iga nephropathy, it is not yet active

> and probably mild. In that case, he will just have to have a urinalysis

> every few months to check for protein. If protein starts showing up,

> then it would be time for the renal biopsy.

> He was also concerned about Rob's bone loss. He had been on Actonel for

> that, but last month the endocrinologist discontinued it, because he

> said that the growth hormone Rob is on would take care of that. I told

> this doctor that, but he was unconvinced, so he wants to recheck Rob's

> bone density there at Cincy.He says there are drugs for osteoporosis

> that are given IV once or twice a year that might be helpful. He'll talk

> to us more about that when he gets the bone density/dexa scan results.

> He also wanted to check a spiral CT of Rob's kidneys. He said that the

> renal ultrasound is good to rule out tumors, etc, but that the CT would

> allow us to see more in depth to see if there were other abnormalities

> or small stones.

> I really liked his approach. Instead of the wait and see attitude of the

> other doctor, he thought that this bloody urine has been going on long

> enough (5 months) and we needed to get more aggressive in the

> investigation and fully find out what is going on. He also said that he

> would call me with the results, but they also worked with me to see Rob

> back for a follow up on the exact same day he sees Dr Passo in

> Cincinnati, on December 30, so we don't have to come to Cincinnati so

much.

> Rob will have the spiral CT and Dexa scan in Cincy on November 6.

> He also has to go to the infectious disease doctor this coming Tuesday

> to find out about the INH treatment for his positive TB test. Then,

> we'll be able to get a timeline from Dr. Passo on when he can start the

> Enbrel. So I am hopeful that by the time we go back 12/30, we'll have a

> lot more answers, find out about starting Enbrel, and maybe, just maybe,

> 2004 will be a fantastic year for Rob. Wish us luck!

> Love,

> and Rob 14 Spondy