Author Topic: need advice recently diagnosed w/ primary SS  (Read 4575 times)

yankeeinthesouth

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need advice recently diagnosed w/ primary SS
« on: January 02, 2010, 12:13:57 PM »
Hi everyone I am new here, and wondering if anyone can offer me some advice. I was diagnosed in July with SS. The Rheumatologist that diagnosed my wants me to start immediately on IV Cytoxin. After reading many of the stories on here I have not heard of too many people on it. I wanted to try the Plaquenil therapy and see how that worked but he said I just need to accept the Cytoxin or there is nothing he can do for me. I have had problems for several years - fatigue,joint pain, numbness, pins and needles, brain fog, forgetfulness. about a year ago my teeth got really bad and several just broke off, then in April 09 I had the worst acid reflux and dry throat and could barely swallow. My primary put me on steroids at the time and sent me to a GI. Thank god it has healed to the point that I can swallow soft food now, but still have reflux really bad. Does anyone know anything about the Cytoxin or have had it before and with what kind of results.

Thanks,
Patty
38 year old female
Primary SS

lynnmarie219

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Re: need advice recently diagnosed w/ primary SS
« Reply #1 on: January 02, 2010, 01:06:12 PM »
Hi Patty and Welcome to Sjogrens World!

I don't personally know much about cytoxin but hopefully someone will come along soon that does to fill you in some more. I always thought it was a more powerful drug to be used as a later option, but I could be wrong. I think you are right about the plaquenil though...it is usually the first medicine that docs give us to help with the symptoms and slow the progression of sjogrens. Did he give you any explanation as to why he doesn't want to start with the plaquenil and go right on to the cytoxin?

Please read all you care to...there is a lot of information here and you can learn a lot from old posts...but if you have any other questions that you cant find an answer to feel free to ask it here....someone will always be around to help you out! This is a safe and friendly place with many kind and knowledgeable people from all over the world who visit here!

Welcome to the family!   

Joe S.

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Re: need advice recently diagnosed w/ primary SS
« Reply #2 on: January 02, 2010, 01:19:24 PM »
Hi Patti, I am sorry to have to welcome you to this forum.

 My first question is do you have cancer? I ask this since the primary use of the drug appears to be for cancer.

As most will tell you I am into alternative care. I suggest that you find what will work for you. Learn all that you can. With an AI disease you are doing battle for your life. The better that you can manage the better your life can be.
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yankeeinthesouth

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Re: need advice recently diagnosed w/ primary SS
« Reply #3 on: January 02, 2010, 01:23:01 PM »
Thank you. I have read that Cytoxin is used only in serious cases, but this Dr. said that is not true and I am reading old information. He told me that I am very sick and I am an unusual case, but after reading other people's stories here I am basically the same. I am so happy that I found this site because I was feeling like nobody understands what I am going through. I have an appt to see another doc in a few days and see what his opinion is.


Patty

lynnmarie219

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Re: need advice recently diagnosed w/ primary SS
« Reply #4 on: January 02, 2010, 02:22:21 PM »
Glad that you are getting another opinion...let us know what the second doc says...is he/she also a rheumy??

yankeeinthesouth

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Re: need advice recently diagnosed w/ primary SS
« Reply #5 on: January 02, 2010, 03:46:42 PM »
this new dr is also a rheumy. I hope I don't have cancer. my white bllod cell count is high so my primary had me get a bone marrow biopsy which came back good.

Patze

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Re: need advice recently diagnosed w/ primary SS
« Reply #6 on: January 02, 2010, 03:53:05 PM »
Hi Patty,

Let me also welcome you to the SJS World and family!  Please look around the board as there are just tons of topics and oodles of information that you might find interesting.

I also can't speak of Cytoxin, as I've never used it either.  And like Lynnmarie said, hopefully a more knowledgable member will stop by soon.

I'm also glad to see that you're getting a second opinion, that must make you a bit more relieved, whew, your rheumy is a bit intense, isn't he?

Again, welcome, and I hope to chat with you soon.

Take care -

Patze
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Bucky

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Re: need advice recently diagnosed w/ primary SS
« Reply #7 on: January 02, 2010, 09:14:12 PM »
Hi Patty - welcome.  I can't help you with any of your questions either, but just wanted to say "hi".

I'm glad you are getting a second opinion.  I am no medical person, but you rheumy doctor seems pretty aggressive with his treatment.

Good luck with your app't. this next week.

Feel free to come here to the forum where you will find fellow members who "get it" when you describe fatigue, aches and pains, etc.  We're all in the same boat - not all at the same level - but, all on the same boat.

Bucky

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eyeamdry

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Re: need advice recently diagnosed w/ primary SS
« Reply #8 on: January 02, 2010, 10:41:06 PM »
Hi Patti-
I've been on Plaquenil and Methotrexate for almost 3 years, along with many other drugs. Those two are mostly for the SJS and they do help alot, are cheap and i have had no side effects from them.  I'll bet the drug you are talking about is very expensive!!  Most drs try the cheaper drugs and then move on down the line to the more expensive.  Many times insurance companies will not cover the more expensive drugs, or they have a whole bunch of hoops you have to jump through.  Like taking several other drugs you must have tried first without a good outcome.  I take Lyrica for neuropathy and this is a newer drug, but I had to go through all that stuff before ins would cover part of it.  I have to pay $50 co-pay on that.  Thing is, it helps so it's worth it.

I hope this helps some. Maybe your doc could start our with the most conservative things and work his way on up.  Lucy

Chickpea

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Re: need advice recently diagnosed w/ primary SS
« Reply #9 on: January 03, 2010, 04:44:45 AM »
Hi Patty

It does sound as though this doctor is jumping in at the deep end.  Most of us start with Plaquenil and maybe Prednisolone, with meds for specific symptoms like dryness or pain.  Some of us - mainly the few who have central nervous system issues - then start on immunosuppressants.  I wonder if your doctor has had a lot of success using Cytoxan/cyclophosphamide with autoimmune conditions?  Or maybe he missed one in the past and is now worried that he under-medicated?

My neurologist told me over two years ago that he was going to start me on Cytoxan but then postponed it, and decided to work on my case with a rheumy.  He has since acknowledged that he was being 'over cautious' by delaying the Cytoxan.  Then I was on CellCept - another immunosupressant - for a year but it didn't do what the doctors hoped it would.  By that time I'd developed gastroparesis and severe anaemia which had to be investigated and treated before the Cytoxan could start.  With any luck I should start the treatment later this month but I won't believe it until the infusion is actually set up!

They haven't made me any promises about what the Cytoxan might do, beyond saying that it might slow the progress of the disease and maybe give me some remission time.  I'm not sure how you quantify SjS progress or how you'd know whether the meds had affected it or not!  But nothing else is making much difference so I'm prepared to put up with the side effects of Cytoxan for the chance of some improvement.  It has to be an individual choice whether the side effects - quite tough for Cytoxan - are worth it.  You also need to know what the doctor recommends when/if symptoms worsen once the Cytoxan has given all the benefits it's going to.  What is his plan B?

There are a couple of other people here who have had Cytoxan in the past so maybe they'll be along here soon to share their experiences.

Thinking of you - Chickpea

yankeeinthesouth

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Re: need advice recently diagnosed w/ primary SS
« Reply #10 on: January 03, 2010, 08:06:56 AM »
Thank you Chickpea and Lucy for the reply. My dr. did not seem to want to try anything else on me and he does the infusions of Cytoxin right in his office. It seems like a lot of his patients are on the Cytoxin for some reason. I have talked to very few in the office that are on anything else. It just really scares me to jump right into IV Chemo instead of trying something less toxic. Everything has side effects but I am sure that Cytoxin would have the worst side effects of all. I was put on steroids back in April, before my dx, when something flared up really bad and the steroids made me very sick so I can't imagine something stronger. I am still newly diagnosed and still very anxoius and scared about all of this and I am trying to make the right decision on treatment. My brother in law goes to the same dr for RA and is on Cytoxin and he has no quality of life, is sick as a dog all the time and catches staff infections at the drop of a hat. All very scary to me.



Patty

mary11760

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Re: need advice recently diagnosed w/ primary SS
« Reply #11 on: January 03, 2010, 09:00:46 AM »
Hi Patty, Welcome!   I am new also and never heard of cytoxin.  My rhuemy wanted to start me on plaquenel but I said no meds for now.  I am not doing so bad so he agreed to just monitor me closely for now.  I am sure this is all so scary for you.  It is wonderful that you found this site as there are so many knowledgeble people here who understand and care.  I am sure we will learn much from them.  I too question your rhuemy wanting to start with such a strong med.  It is great that you are going to a new rheumy to see what he/she says.  Always keep yourself very informed..that is so important with any illness and especially this very wierd one.  You, and all of our other Sjoggies are in my prayers.

yankeeinthesouth

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Re: need advice recently diagnosed w/ primary SS
« Reply #12 on: January 03, 2010, 11:25:05 AM »
Hi Mary. Sorry to hear that you are facing the same problems as me. I want to take the Plaquenil because I hear it helps. My primary dr. tells me if they don't treat the SJS at all it tends to get progressively worse with no remission, and with no treatment people tend to get lymphoma more often. Hope everything works out for you.

Patty

mary11760

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Re: need advice recently diagnosed w/ primary SS
« Reply #13 on: January 03, 2010, 11:39:52 AM »
I think I am just being a scaredy cat regarding meds.  My only complaints currently are flares with extreme fatigue, Joint pain, stiffness.  I really hate taking medicine.  I have been trying to research healthier alternatives but not too much luck as of yet.  I am sure I will know when I need to give in and take the plaquinel.  He is monitering me and if my inflammation levels go up rather than stay the same I know rheumy will press the issue with the plaquinel.   I am looking forward to how your 2nd opinion turns out. 

yankeeinthesouth

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Re: need advice recently diagnosed w/ primary SS
« Reply #14 on: January 03, 2010, 02:24:14 PM »
I don't blame you I am scared to death of meds as well. Unfortunately when it comes to these autoimmune issues I dont want to play around. My brother in law has RA and went undiagnosed for years and when he finally was diagnosed he didn't takes his meds right. Well he got so bad he ended up in the hospital for 6 months and almost died. And let me tell you he is the worst case of RA I have ever seen. He thinks he is so bad because it was left untreated for years.

Patty