Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Rheumatology Appointment

More
15 years 2 days ago #743 by tacmom
Rheumatology Appointment was created by tacmom
We don't know any results and will not find out anything for two weeks. They did a TON of tests today which included 12 vials of blood for different tests (don't remember the names of all of them), EKG, chest x-ray, urinalysis, and she will have to do a 24-hour urine test this weekend. The pediatric rheumatologist seemed VERY thorough and did say that based on the earlier tests that she had done in Dec/Jan, they do have a reason to suspect Lupus. She is running all of these tests again to see if she has another positive ANA test and to see if her titer stays the same or goes higher. She does meet more than 4 of the criteria for Lupus based on a quastionnaire that I had to fill out, but that doesn't always make it "definite". Her appointment was 3 hours long.

They said if there is any indication that she does have Lupus, then splenectomy will not be an option for her. She said they like to treat the entire body and not just the platelets. She is ok with Rituximab, but said that if everything turns out the way she "thinks" it will, then she will suggest a 3-day course of high dose steroids done through an IV rather than taking pills and it will be about 1000 mg. I can't imagine that!! Seems like that would be toxic to the body!! We meet with the hematologist on Thursday to discuss any early results that have come in and then what to do next, but I have a feeling we won't be doing any kind of treatment until March until we get all results back. I know Caitlin's platelet count is VERY low because of recent bloody noses and then her stomach & chest were covered with petechaie after the EKG and then her arm was covered in petechaie after they drew the blood. I wish I knew now what her count was, but I am sure I will find out on Thursday or maybe before then if it is in the single digits.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #756 by alisonp
Replied by alisonp on topic Re:Rheumatology Appointment
Pauline,

I am really keeping everything crossed for you and Caitlin - must be hell waiting weeks for results like that. Her appointment sounds very thorough though, and I guess with all of these things, its better to know than not, because then you can make better decisions about treatment and lifestyle.

I hadn't realised that there was some connection between lupus and ITP, but I am not very well read on either.

Lots of luck, Ali

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 2 days ago #759 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Pauline:

I am VERY impressed! That isn't an easy thing to accomplish with me either. THAT sounds like a good Rheumatologist!

I do not want to come off sounding like I'm an expert on this, but I've done so much reading about ITP/Lupus over the years and can spot when something sounds right and when it does not. I've done research on the affects of Lupus and splenectomy and have seen in current research that it can cause many problems. It would be great if Cailtin were never diagnosed and that's possible, but as long as she has several criteria, it might be good to err on the safe side. I'm glad this Rheumatologist recognizes that.

I'm so sorry that things are leaning in that direction. That's tough. Hopefully, the diagnosis will not come for a very long time...maybe never. Remember the things you can do to prolong or prevent diagnosis; mainly avoiding sun exposure.

The IV Prednisone will be tough. I've heard others go through that. Reports were that the days with the IV were tough and a few days after, but she wouldn't have the weeks and months of side effects like higher oral doses cause. I wish I could have that...might clear up some of my annoying daily Lupus symptoms that never go away.

Anyway, you're on the right track now. Knowing that should help.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 2 days ago #760 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Oh - P.S. - Steve (Gort) was on 2,000 mg's of oral Prednisone for weeks. I thought that was absurd and my mind wouldn't grasp it. I don't know how he did it and still worked, I would have probably murdered all of my co-workers.

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #767 by lucidawn
Replied by lucidawn on topic Re: Rheumatology Appointment
Josiah, my other son, was treated twice with a five day pulse of 1000mg of steroids (IV). He gained a little weight, but for him, it was good cause he is such a skinny kid. He reached a normal weight for the first time in his life, lol. But, he didn't have any negative side effects, though he had two of those pulses in two months (plus the taper). He had it for MS. i was concerned because of his heart disease that it would be too hard on him, but he tolerated it well.

Tim's family (dad's side) also had alot of lupus, and Tim often gets the butterfly rash, but he has never had a positive ANA. The hemonc did an ANA last week, and at my request a TSH (thyroid stimulating hormone) because on my side there is alot of hypothyroidism, which can cause ITP. We should get our results this week, but I imagine if he was high(TSH), they would have called.

I hope you get answers, and I hope its not Lupus.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #768 by lucidawn
Replied by lucidawn on topic Re: Rheumatology Appointment
Oh, BTW, he lost all the weight he had gained fairly soon-I think within 6 months.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #769 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
Sandi...I am glad to hear you think it is a good rheumatologist since you do have experience in this field. Sometimes experience is better than expertise. I know that because I worked in a psychiatric hospital for a while trying to train to be a counselor (psychiatric disorders and drug/alcohol addiction) while I was doing my Masters. I was asked several times if I would be a chaperone for different people and I had to tell them that I had never even been drunk or tried any drugs. That was hard for them to understand and even the people who worked there finally said you have to have some experience (if not yourself than someone close to you) to really understand what these people go through. It was an eye-opener for me and I was young so I had time to change my major. (Just my point in saying why I value what you have to say! :) )

I truly hope she doesn't get the diagnosis of Lupus. If Caitlin has it, it is definitely in the mild form so that gives me leeway to keep her from getting worse. Keeping her out of the sun will be hard though. She LOVES the water and we just built a pool and can't wait to use it. We are also going on a cruise this summer for my parents' 50th anniversary and have a trip planned to Florida as well to stay at a place that we stayed at a few years ago. Caitlin spent all of her time under water diving for hermit crabs and scallops. And I'll never forget the baby shark that she and her friends caught. Scary, but awesome moment!

Seeing the rheumatologist basically nod her head when she heard me say splenectomy was a big relief for me. I really don't want to go there just yet. I am scared about the huge doses of prednisone, but glad to hear that others have gone through it and seemed to tolerate it. Caitlin did not do well on 80 mg so it really seems scary. I'm not going to jump the gun yet...there's still hope that the diagnosis won't come, but I am mentally preparing myself just in case and I can jump for joy if she doesn't have it. Thanks for your supoort everyone...it means alot!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 1 day ago #782 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Pauline:

Staying out of the sun is the hardest part for me. I was a sun lover, always have been. We also have a pool and go to the beach every year. I don't stop doing those things, but I do take precautions. I use a high SPF sunscreen with both UVA and UVB, and I limit my time. I also wear a hat on the beach when the sun is highest. I've heard stories of people who went for years with no problems in the sun and suddenly they end up with all sorts of problems.

I do push my limits though, I know. My Rheumatologist suggested that I sit under a beach umbrella at all times...I don't do it. However, I have not had any rashes yet nor have I seemed to have any problems with excess antibody production due to the sun. My blood work has remained the same every three months when I am tested. I do have an increase in neuropathy when I'm in the sun...my arms and legs feel like they are being pelted with sleet the whole week I'm on vacation. When we leave, that goes away. The thing is, Lupus symptoms can change at any time and get worse, so I know I'm taking a risk by doing it at all. I've been okay for five years so far, I just hope it continues.

I don't know that there is such a comfort as a mild form of Lupus. Things can change quickly. A person might live their whole life with few problems, but you won't know that until you get to the end of your life. Until then, Lupus is Lupus and symptoms can come and go. I think I've been pretty lucky with it so far, no organ involvement, but I do live with constant pain and fatigue. I have mild nerve damage due to neuropathy which also comes and goes. It acts up in the cold months and the week I'm on the beach. Annoying, but nothing compared to what some people go through.

Well, I didn't want to talk about me. I just wanted to let you know some of my story to give you an idea of what can happen. Talk to her doctor about precautions and see what she says.

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #803 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
I figure that if she ends up with this diagnosis, then we will take precautions at home where we will try to encourage her to swim in the early mornings or later evenings when teh sun is just coming up or going down. I just don't know if we can force her to wear a sun hat at 11 years old, but we can make her wear the sunscreen. I know when we went to Florida 2 years ago, we slathered all of the kids every hour with sunscreen, but Caitlin still had the worse sunburn ever and it was the first evidence of any sun sensitivity that she had ever had, so we were assuming that Nplate had something to do with it. Her sunburn was like the "butterfly rash", but it was not a rash...more like the worse sunburn you ever saw and it took days to go away, rather than just a few hours if she even had a sunburn before. She has olive skin so she tans no matter how much sunscreen I put on her.

Sorry to mention it being a "mild" form...I know Lupus is Lupus no matter what, but it really would be hard for me to comprehend that she could get worse in the future because she is seriously, by far...my healthiest eater (will eat fruits and veggies over chips/dessert any day) & she is so fit due to being in cheerleading all these years. Tiffany is my one who complains about joint pain and has some severe cases where we've had to keep her on Motrin for days at a time so that she can walk without too much pain. (Going to get her tested for autoimmune disorders if Caitlin tests positive.)

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 18 hours ago #818 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Pauline - don't be sorry! I don't mean to be harsh or blunt or cruel; I just don't want you to have any false impressions. Sometimes I don't phrase things as carefully as I should. My fault.

Sun burns are bad. That's the one thing I have not allowed myself to do since diagnosis. I used to get one bad burn out of the way at the beginning of every summer and tan from there. Now I do it slowly and absolutely no burning. Burning causes white cells to rush to the skin to defend infection and when they die, the body can't clear them like normal people can. That can cause inflammation and antibody production. Very simple explanation - it's more complicated than that (I couldn't explain it if I tried, it has to do with apoptosis).

I know, autoimmune disorders suck. My daughter has Graves and I have many meltdown moments and times of sheer anger about it. It's been 2 1/2 years and I still feel that way at times. Take me, but don't touch my kids!

I truly hope that things turn out okay for both of your girls. They are too young to have to deal with this crap. One day at a time though, right?

Please Log in or Create an account to join the conversation.

More
15 years 15 hours ago #819 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
Saw the hematologist this afternoon and we have agreed to start Rituximab next week. She said most of Caitlin's labs are in and they are normal which is great news but she hasn't talked to the rheumatologist yet. She will make sure the rheumatologist is ok with Caitlin starting the Rituximab first. They took more blood to rule out any hepatitis b before they start the infusion. She will go every Wed for the next 4 weeks.

Wish she didn't have to do this at all but maybe, just maybe...this will put her in remission for a long time! :). Oh, and Caitlins count today was 13.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 14 hours ago #821 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Good luck. I hope this does it for her!

Please Log in or Create an account to join the conversation.

More
15 years 5 hours ago #832 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
Sandi-thanks and I hope it does the trick for her too! I was so tired last night because we ended up "waiting" at the clinic for a long time and then I had to rush to get Caitlin to her choir concert last night so we didn't get dinner until 8:30, which I hate! The hematologist basically did say that I'm the parent and I have the final say in whatever happens regardless of what they suggest. The hematologist did say that splenectomy is more of a cure while Rituximab really doesn't work as well in children. (85% success with splenectomy vs 40% with Rituximab for complete response.) I heard from a different hematologist a few years back that the splenectomy rate was more like 60% to 70% so I think different drs look at different numbers. Right now, I am more worried about Caitlin missing school so I am going to contact the hospital to see what some of their other kids do. Caitlin doesn't fit the homebound status like the cancer patients. I am also out of days. I actually have a half day left that I can use, so the rest of my days will be unpaid days, which is ok with me as long as it is ok with my boss. They all tell me the same thing, that if it was their child...they would be taking off too rather than trying to find someone else to go with them, so that makes me feel a little better.

How is your daughter doing with Grave's? I don't know much about it. I hope she doesn't have to take tons of medication at a young age or that it isn't affecting her everyday life. I was on steroids and cyclosporin when I was 25 and it was NOT a good thing and it has side effects that still impacts me today.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 11 months ago #847 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Hi Pauline:

She is 24 years old and right now, takes an anti-thyroid med and a beta blocker. She does okay with side effects with those two drugs for the most part. She's been on both of them for 1 1/2 years. She has been on Prednisone a few times for asthma.

I know the guilt of taking off for your kids - been there! Employers seem to forget that we are mothers first - can't help that.

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #886 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
Is a beta blocker the same thing as blood pressure medicine? I've been on that since I was 25 as well. Will have to take that the rest of my life but I find that it helps with headaches too. I've taken myself off a few times when I ran out. The dr told me this is dangerous to do so I've been faithful at taking it for 3 years now. Mine are classified as an ace inhibitor though. Glad your daughter does ok with them! Three more days until Caitlin does the Rituximab! I hope she has no bad side effects!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 11 months ago #888 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Yes, it's BP medication and yes, it's dangerous to stop taking it. Don't do that!

I hope Caitlin does okay with Rituxan too~ good luck!

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #903 by wildroseao@aol.com
Replied by wildroseao@aol.com on topic Re:Rheumatology Appointment
Hi Pauline-

I do try to keep up with the board and your Caitlin's continuing saga. She's how old now? I do wish there was more info on how kids respond by age to Rituxan; I don't think the re-do of the Rituxan Scoreboard ever really took off. Have you seen the original? I've seen mostly pre-teens and up do well with Rituxan, though there have been a few younger successes that have posted here. Did they test for that JC virus among all the bloodwork they've done?

If this works for your daughter half as well as it has worked for mine, pokes and doctor appts., half-days and headaches will drop WAY down there on the frequency meter! Lay in a good supply of movies and tunes for her, and take a book (or your test papers!) for you. Remember-slower is better! At 120 lbs or so, my Caitlin's took all day, each time.

May Day 1 be nothing but BORING, and may you see speedy results! Then, Caitlin can go :silly: and :woohoo: to her heart's content, and you won't even flinch! To infinity and beyond with those platelets, girl! Ann, Caitlin's (22) Mom

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #905 by lucidawn
Replied by lucidawn on topic Re:Rheumatology Appointment
Yeah, neurologists use beta blockers to treat migraines. I took one for a while, for headaches, but stopped because it interfered with my workout, lol. I could not get my heart rate up at all. Speaking of workouts...I need to get back in the gym.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #914 by tacmom
Replied by tacmom on topic Re:Rheumatology Appointment
Ann-Caitlin is 11, but she will be 12 on April 2nd. I wish I knew if they tested her for the JC Virus, but I don't. All I know for sure is that they did run a test to make sure there is no evidence of Hepatitis B in her before they start the Rituxan on Wednesday. I am planning to get Caitlin's work in advance if they will let me and I also will have some work to do. I'm really good about staying caught up so I don't have too much to worry about when I get home. I think I recall that you are an SLP, and my job is somewhat similiar in where I pull students out of class and work with them one on one so it really doesn't involve grading papers. Just writing reports on testing that I do with them (Part C's-Communication Report) and a few other informal tests that I'm required to do each year with every student. I truly hope Caitlin's infusion is uneventful and works as well as it did for your Caitlin! :) We will be thinking of you when we come on our trip to Florida this summer. Going to Cape San Blas the 1st week in August and that is when the baby sea turtles are supposed to be finding their way into the ocean...I hope we see some! :)

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #949 by ktonooka
Replied by ktonooka on topic Re:Rheumatology Appointment
Hi Pauline,
Just wanted to wish you and Caitlin the best tomorrow with the start of Rituxan. Good luck!

Karen
mom to Jordan
diagnosed April 2009

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 11 months ago #964 by Sandi
Replied by Sandi on topic Re:Rheumatology Appointment
Yes, good luck! Please report!

Please Log in or Create an account to join the conversation.

Moderators: jaycharness