Hi, it's me.
I've been off line for a few weeks trying to get caught up with my life. It didn't happen.
I finally got to see my rheumatologist earlier this month and told him all the things that have been going on. He had many of them on call slips, but we took a good 45 minutes going over everything, with my husband there to help fill in the blank parts due to brain fog. He added a couple of new meds - Voltarin, lacriserts (don't like and don't think I'm going to be able to use them, what a waste!), Flector patches, I think that's it. He also wants me to get another infusion of Rituxan since the last two were in Nov. and March, and he said that's not close enough to be effective.
I went to the Sjogren's Patient Conference in Arlington. Wow, what a world of knowledge was shared there! I'm still reading through my notes and processing what I learned. The one thing that threw me quite a bit was when my own doctor, Dr. Vivino from PENN Presbyterian Hospital in Philadelphia spoke on managing patients with immunosuppressive treatments. Rituxan was the last one he covered, and he said he saves that for his "sickest patients". I never thought of myself as one of his sickest patients. I asked my husband what he thought, but he says he only knows one SjS patient. Dr. Vivino did tell me at one point that my back injury combined with Sjs makes me a tough case but not to worry, he's handled worse. I guess that should make me feel good.
I met a lot of very interesting people. I kept asking if anyone was on this Forum, but unfortunately, didn't get to meet you if you were there.
I'm still having the usual problems, no sleep, lots of pain and stiffness in the joints and my back. In addition to the usual blood tests, he's testing me for Lyme Disease and Parvo? I don't know what that is. I go for the Rituxin in 2 weeks, I have to have injections on my back first, as I am having a great deal of leg pain and weakness. I ended up needing a cane to get around at the Conference. It's always something, isn't it?
For those who have been following, my son is doing well in Iraq. I just talked to him on the phone yesterday and he really sounded good. He's back working in the warehouse and fixing generators and not going off the base which is fine with me. The best news (as far as I'm concerned) is that he's declined their offer to stay for another 3 months to a year.
That's all the news here that's fit to print. I've missed you all and hope to get back to posting after my injections sink in tomorroow.
Tracy
tracy
good to see you back, not so good to hear youve not been keeping great, glad you enjoyed the sjogrens conference, dunno fi anyone from here was attending.
parvo is parvovirus, its a viral infection more commonly knows as slapped cheek syndrome, can cause facial rash/ looks like face has been slapped, sore thorats or all over rash, usually short lived, but in some it persists, sorry its all i know about it, most ppl are immune as they likley had it briefly as a child, you could google to see if there is deeper information on this .
sorry youve got more meds to get, id ask him about your drugs and your concerns about " worse patients" , not very comforting i know, but ther eis comofrt that your rheumy knows enough about SJS as is invited to speak at a conference, least he knows what he is up to
welcome back after your break, hope your feeling better soon
T x
Tracy, I am fairly new to this site. Just wanted to say that my thoughts are with your son. Roxanne
Hi Tracy :)
I'm sorry you're still in so much pain and I hope the doc manages to sort it out for you so that it lessens.
That's positive news about your son though. Nice to hear he's sounding good and that he won't be there for longer than he needs to be.
The conference sounds as though it was interesting.
Take care - Scottie :)
I was just curious what other immunosuppressants Dr. Vivino uses and recommends before rituxan. I have mostly neuro
complications and we are getting close to considering rituxan.
Also, do you know if any conference summaries will be available anywhere. I am especially interested in the neuro and immunosuppressent talks.
Thanks
Ruth
Tracy,
Your husband sounds like a funny guy.
Hi Tracy. I was just wondering how you like your Dr. Dr Vivino is supposed to be one of the leading doctors on sjogren's syndrome. I've seen 2 rheumys in Texas and I went to the mayo clinic in February. I was considering making a trip to see him. I can't seem to find a doctor with enough knowledge about sjogren's, who listens to their patients, is compassionate, etc.
Hi Butterfly, where in Texas are you? Have you posted a message and see if a fellow member can recommend a good doctor?
Hi Tracy, welcome back! Wow, you have your hands full girl! And I'm glad to see that your hubby is in there with you, that's so neat. I'm glad that you've got a good rheumy, and that's half the battle!
Hang in there lady, and please keep us updated, okay?
Take care -
Patze
Tracy, My girlfriend with Sjogrens has a daughter who has had the parvo virus. She was really sick. She did not have the flushed face but did have the swollen joints and had to be admitted to the hospital for a few days. She also had some episodes that affected her lungs with really bad pneumonia. At first they thought she had Rheumatoid arthritis but did all the testing and came back as the parvo.
It is a virus that can affect dogs and is quite common. Some people don't seem to be very ill at all and others are a mess for quite a while. Hope you can get some help. Glad that things aren't any worse. That is a joke!!!! I hope you are still able to share some humor.
Glad to hear your son is doing well. They say the service really makes one mature and I bet you will find that is true.
Glad you enjoyed the conference. I went to one in Minneapolis about 5 years ago. They are really good. I bet yours was even better as they have learned so much more since then. Irish ;D
Thanks so much for the good wishes for my son. I try very hard (and not often successfully) not to let his ups and downs in Iraq to stress me out and add to all my symptoms, but I have to say it's truly helped that he's having a good run right now that will hopefully take him right into September and the trip home. His "roommate" is involved with field feeding teams, so is rarely in their room, which also helps. They actually live in shipping containers that have been fixed up inside and air conditioned and have US current.
Anyway, thanks, Wednesday, for the information on Parvo. I did Google it and found that it can be worse for adults and those who are immune compromised. I'm not sure I qualify for the first, mentally anyway, but definitely the second. I had them send a copy of the test results to my family doctor as well, so she can at least give me some insight at next week's visit.
Butterfly - I like Dr. Vivino very much. He's very thorough and very sympathetic. My only complaint is that it often takes days, even a week or more, to get a call back when you call with questions or prescription renewals. If money isn't a concern, I would definitely consider a consult with him at least. He'll give your local doctor avenues to explor that she or he might not have considered.
Ruth, as far as I know, conference summaries aren't available. I've looked for them after the yearly conferences have been held in different parts of the US, but have never had any luck finding them. As for immunosuppressants, in my case, he gave me information about Humira and Rituxan, then told me to go home, read them over, talk to my husband and decide which way I wanted to go. For me, the Rituxan sounded like it fit more of my symptoms, and he agreed that it was the right choice. Especially since I get daily Sjogren's headaches which the Rituxan has really helped. He also talked about Methotrexate, Imuran and Cytoxan. They are all classified as chemotherapy, while Rituxan is a Biologic Response Modifier. He really didn't go over how they were differand and I'm drawing a blank on how it was explained when I started on Rituxan (major Brain fog these days!) I'm sure someone else here could explain the difference and there's plenty of information on the 'net as I did a lot of research when making my decision 2 years ago.
And last, but certainly not least - Scottie - I'm trying very hard to keep a sense of humor as my body and I fight each other on a daily basis. Without a sense of humor, I'm very afraid o where I might be!
Thanks for all of the good wishes. Sorry this is so long and late in coming. As usual, my pain decides how much computer time I get each day. The injections yesterday helped, as did a chiropractor's visit Thursday. I'm keeping my fingers crossed that these will be enough, because my pain doctor is talking about me seeing another surgeon because of thenew pain and weakness in my leg. I'm taking it one day at a time!
Tracy
Hi Tracy my name is Jonnell and Im new here. My 4 year old was diagnosed with sjs. Ive learned a lot from this site about what you go thru. All of you are truely heros in my eyes. You are all a very strong group of people I only hope Jenna can grow up as strong. Hugs and Kisses and lots of love Jonnell and Jenna
Thanks for your reply Tracy. I have actually been on cytoxan in the past when I was really sick and it helped alot. Unfortunately because it has a high risk of causing cancer there is a limit to how much they want to give you and I maxed out. Immuran lowered my counts too much and I am currently on methotrexate. It is good to know my docs have been using the same meds Vivino favors.
I will have to read up on humira. Regarding rituxan- are you part of a study? If not, how did you get insurance to cover it?
I do hope you get some pain relief and feel better soon.
Ruth