ITP-other symptoms "coincidence????" Lupus??

Hi Everyone,

I was diagnosed with ITP back in December of 2009 at the age of 24. I went to the doctor after weeks of bad gastrointestinal pains (pains that were so bad they would wake me in the middle of the night). The doctor ran numerous tests, and called me the next day with the news that my platelet count was 20. I was referred to a hematologist who diagnosed me with ITP. She put me on 60mg of prednisone, and over the next two months my counts went up and down as we tapered, eventually steadying between 80-100 without prednisone. At the same time this was taking place, I saw a doctor for my stomach issues. He did a colonoscopy and said it appeared that it looked like "something" had a caused inflammation in my bowel. He said it looked like it could be asprin related (except I hadn't taken asprin within the last few months). He said he didn't see any major issues, and sent me on my way. During this time period I also began having pains in my joints. I ended up seeing a second hematologist for a second opinion, because I really felt it was odd that all of these things seemed to happen simultaneously. He told me it was all just conincidence.

Flashforward to now. I've been off of prednisone since February of 2010. My last platelet level was 207 in April. I am now 14 weeks pregnant. About a month ago I started having stomach issues again. I had 4 days of bad diahrrea, where I couldn't keep ANYTHING in. My OBGYN determined it was not pregnancy related, and seemed more like a gastrointestinal issue. She ended up sending me to the ER to get hydrated because of the pregnancy. While in the ER they did bloodwork, and discovered my platelet count was 18. The next day I was placed back on prednisone. In the next week or so I also noticed joint pain again. One day as I went to sit down I felt like something had ripped apart my knees. When I got up, I could hardly walk.

My hematologist is now sending me for another opinion due to my pregnancy and the fact that my count isn't responding to the prednisone as quickly as we would like. I don't know too much about lupus, but have been doing some reading tonight. I also read about nose/mouth sores, and interestingly I had cuts in my nose for about 4 months that went away when I started the prednisone a month ago. I had attributed them to a dry workplace environment, but now realize they are also a lupus symptom.

I guess my question/concern is that none of the doctors seem to think that any of these things could be related. Doesn't it seem odd that my body seems to have all of these inflammmatory attacks at the same time? How is this a coincidence? I don't want to go into my new doctor self-diagnosing myself, but I'm concerned that something more is going on. Am I crazy?

Not crazy, these sound like good inferences. So many doctors will only see one small body part. Can you get a referral to a rheumatologist?

Erica

When I go see the hematologist for the second opinion I will ask about seeing a rheumatologist. I just feel like there is more going on here.

I'm wondering also if there could be a gut issue that is setting off your other immune issues by inflaming your bowel. I have lupus and ITP and I think that was a big one for me. When I cleared up my gut I also had (have) a sustained remission from both ITP and most lupus symptoms (also had Rituxan so I'm just guessing...). What I had turned out to be fructose malabsorption. Maybe google it and see if what you are eating fits with the problem foods. My colonoscopy after I'd changed my diet showed recently healed scarring and inflammation.
Erica

Court:

The only way to know is to see a Rheumatologist. Some autoimmune problems can take a while to diagnose since they can develop slowly and not all symptoms and corresponding blood test results are present at first.

I had ITP for 8 years before I was diagnosed with Lupus. I'd had Lupus symptoms for two years though before I was diagnosed because my labs were good except for the ANA. I was monitored every three months and over those two years, watched my labs slowly evolve toward meeting the Lupus criteria. It can be a long process.

Seeing a Rheumatologist will at least give you a baseline if nothing is found.

Prednisone can also cause joint pain, so it would be hard to tell if it is that or something else causing it.

i am going through similar issue with my drs. heres my story:
i was diagnosed with itp during my pregnancy in 2009 (steriods during pregnancy). always having a severe pain in my right side, diarrhea on&off-- drs said nothing to do with itp
i delivered at 37wks (drs said this was rare but my son had to stay hospitalized for low platelets for 10days and recieved ivig- he is perfectly healthy 21month old now)
My issues got worse after delivery... the pain in my side became horrible- the ER kept sending me home saying they didnt know what it was. scans showed my appendix was fine and gallbladder test showed my gallbladder wasnt emptying properly but didnt know why. I eventually went into surgery tho they didnt know what they were looking for- ends up they did take out my appendix because it was extremley inflammed) Within the next month I needed blood transfusion (platelets were around >20, aslo got c-diff, and colonoscopy showed yeast in my colon-- they blamed all this on low immune system.

Everytime my platelets drop strange things happen to me and hemo. ignores the things i bring up like they are not important (my recent issues were a rash that covered my hands/feet that ER did not know what it was and sent me home- which i read was a rash related to lupus. But my main issue is they leg pains they are severe when my platelets are low and headaches)

I also feel that there is something else going on with me but I dont know how to get drs to take me seriously or even see a rheumatologist.

also: ive been getting ivig every 2months but hemo wants me to try rituxin which i get wednesda. i was actually on here to see how others did on that treatment and saw ur post and wanted to share

Brit:

Do you need a referral to see a Rheumatologist? If not, you could just make the appointment and skip the other docs.

Rashes can be related to Lupus, but not always. You probably do have some other issues going on, but it might take a while to figure out.