ITP-TTP and Sjogrens NEW HERE!!!

I have many issues with Sojgrens,I am currently very active that attacks my blood. Very low white blood counts, current platelets at 92. with occasional Schistocytes. There doesn't seem to be anything that stops that from happening and I developed TTP. I was in the hospital and given plasma replacement for months. I was on daily blood test.  Now on weekly blood test. ( I was on once a month for a while)

I am extremely fatigued.  I know the damage it has created to all of organs and systems. I feel the effects of my diminished breathing.  I know that TTP is a reoccurring disease. I am very nervous that I am in the beginnings of another episode. I do not necessary think I can make it though a second one as the effects appear to be more severe with each reoccurrence.  My initail episode  was classified as severe as I had 40 plasmapheresis treatments as well as IVIGG, Rituxan and steriods. This is all caused by SJogerns. I am being treated by a hemotologist and Rhum locally and at the cleveland clinic. Anyone else ever have any of these issues?

I had half my thyroid removed.  I have joint pain, constipation, dry eyes, dry mouth. Have had plurisy many many times. I get sores in my mouth, nose, I have digestion issues. I never knew that a deaseae could create so many issues

Nancy

NanciLee -

This is a newer forum for Healing Well, and does not have a lot of experienced Sjogren's patients to help with advice. The people who do read here consistently, such as myself, just don't know about the more extensive cases. I know they exist and are really difficult to deal with - but I don't have those issues and had no idea how to respond to yor post.

I'm sorry I didn't chime in and say that - unfortunately I was in a bad way due to lupus and didn't have the energy to respond. I hope you will keep us posted -- I for one am interested in learning about the more sever forms of the disease.

You're right there's something new everyday. Let me introduce myself. I'm Suzi,47, dx'd in 2004 Hypothyroidism,2004 MRSA, 2005 with sjogrens',2006 cirrhosis, and 2010 Pulmonary arterial disease.The MRSA scares me,it can be a fatal infection and it's hard to tell when it's active. I don't know if one led to the other but when I went to Shands-Gainesville for evaluation for liver transplant by the time they were done they told my I had P.A.D.  the Dr.'s said that needed to be dealt with first before a liver transplant so off to the Pulmonary Center.  It seems every time I go to a Dr. they give me another dx.  I have so many dx's within the main dx. it's frustrating. Just within the the ESLD (end stage liver disease which started out as cirrhosis) I've been dx'd with Varices,edema,ascites,portal hypertension, and a few more.  The sjogrens' was dx'd by accident. I didn't have any symtoms. Dr. was doing routine blood test and my ANA test came back pos. but Lupus neg. so she sent me to rheumy who did more test, checked symptoms, and asked a lot of question and told me I had Sjogrens' and to come back when I had symtoms and she deal with them as they came up and for 3 and half years I didn't have any symptoms but the last 6 months everything started happening at once. 1st it was nose bleeds-dry nose,dry eyes,dry skin,dry mouth,dry ears with sores and dry scalp with sores. Now all my joints are causing debilitating pain. I can hardly get up I'm in so much pain,my knees are the worse not only very painful but they pop all the time now. I can't take steroids for relief because of the liver. The fatigue is all the time. they said that was a result of low blood oxygen 62% so now I'm on 02 therapy 24/7. I've basically  become a shut in. For someone who's been very active her whole being reduced to sitting in a recliner on 02 makes me feel like my life is over.  It's also confusing because some of the symptoms can go with 2,3,4,....dx's. It's hard to tell which dx is flaring up.  BTW what is ITP-TTP and IVIGG?  I haven't come across those yet.  Sorry for rambling I just have a lot happening right now and I'm very frustrated.  I've never run across as severe a case as yours before. I pray they find some relief for you and you feel better soon.

I hear ya NanciLee, I'm on my third relapse of TTP as I am writing this. My auto-immune disorder was in what I thought remission last July before I came down with my initial episode of TTP. I lost count of the number of Plasma Exchanges done. I've been on lots of steroids, had the Rituxan but it almost wiped my bone marrow out so they stopped that. Took ATG (Rabbit) and Cyclosporine for a few months along with prednisone that seem to help me out of my initial episode. Then about 1 month later after the cyclosporine was stopped I had another relapse and back to plasma exchanges again. I didn't even get all the way off of the medications on this round when they were tapering me off of prednisone and I was down to 10mg when the platelets dropped again to 9K. Relapse number two. Plasma exchanges were started again and I'm still getting them now. They want to start me on CellCept to see if that will help. CellCept is a drug used for organ transplant rejection. It appears to have many side effects. I'm looking for individuals who have been on this this drug. It has many drug interactions with several of the medications that I am on. I have a Hemotologist monitoring this as my Rheumy is just monitoring this and I'm not sure this is the best or not since this disease is triggered by the auto-immune. To sum it up I can feel your pain and frustration. Fortunately through all of this I have not been in any pain ( except when the catheter is being inserted) and just had a huge rehap after the initial episode. Keep me up-to-date as there doesn't seem to be many with this combination of illnesses within this thread. TIA

Its easier to just say TTP. Here is one basic description:

Thrombotic thrombocytopenic purpura (TTP) is a blood disorder that causes blood clots to form in small blood vessels around the body, and leads to a low platelet count (thrombocytopenia).

If you Google it you can find additional information on TTP but I did not want to get to lengthy.

I was glad to hear you had good results with Cellcept, it gives me a little hope. Oddly enough they are saying the auto-immune disorder I have is triggering the TTP. Our normal platelet counts should be between around 140K and 450K, when I was DX it had dropped to around 5K and I was bruising very easily with blood in my urine. I have had two relapses since where the platelet count had gotten down to 13K and 9K respectively. One week I'm 170K and the next 27K. You can imagine then that they need to monitor my blood almost weekly to prevent another major relapse. The sooner we catch it the better off we are.
I guess the hope is that the CellCept will stop my body from attacking the platelets. Thanks for replying.

NanciLee,   I have recently discovered HealingWell, and I was looking for just what you posted. I have Sjpgrens, and ITP is a real issue with me, as my platelets are constantly in the 27-79 range.    I just want you to know I am responding to your post, and will be back . WOW, maybe I am not so alone.   

 

Post Edited (Baxters Peaches) : 7/26/2011 5:52:07 PM (GMT-6)