ITP / Lupus diagnosed

Hi,
I'm new to the forum , was diagnsed with ITP 20 years ago ,
diagnosed with Lupus (for certain) 2009.
age-56 , employed 35 yrs same company
recently forced to retire , was granted SS Disability almost immediately -thank GOD

History: heart atack 2004 , Spleenectomy-2011
brain bleed 2010 ,2013 (requiring surgery)
other diagnosis too numerous for me to bother with
Mother also had ITP !

Am seeking support/ commardery through Fourum.
Hoping y'all can identify .
Question- anyone attend the meetings at Morristown NJ ??
I'm curious.... as I have 20 years to share .

THANK YOU
LOOKING TO SUPPORT ..... AND ALSO FOR IT ...
Trying to stay positive .
Love Super Dave

Hi Dave - welcome to the group. There are only a few of us that post here that have both ITP and Lupus, but we talk a lot/support each other. You're not alone!

I was diagnosed with ITP in 1998 and Lupus in 2006. ITP has been in remission for 8 or 9 years, Lupus is active.

Welcome Dave,

I was DX with ITP 2010, Lupus, 2013 and Parkinson's 2013. As Sandi mentioned there isn't a bunch of us but the support I've had here has been a HUGE help!

So ask about just about anything and I'm sure you will find an answer to what you ask. Trust me I think I've worn this forum out with stuff!

Dan - never! You don't wear us out! There used to be three of us, two other women who were my lifeline in the beginning. One passed away and the other doesn't post here any more. We do talk on FB and through e-mail; she is on the PDSA board of directors. Anyway, I don't really have anyone to discuss this with either. I did post on a Lupus Forum for a while but there were too many clueless people and no personal relationships like we have here. Lupus is tough because it affects every part of the body in some way and it can't be fixed.

Anyway, I get just as much out of it as you do. I don't talk about Lupus much with my kids or other family members because I don't want them to worry or see me differently.

Sandi, I was just saying that I've found more support and information from this forum than even the Lupus Foundation forum. And it's nice to find a place to go just to vent or get serious information.

So Dave NEVER be afraid to ask anything on here,(Lupus related or not) trust me if it wasn't for Sandi, Melinda, Jeff and many others on here I would have gone crazy. Just look through my prior posts on here and you will see that I have had some serious problems even if some stuff is not directly related to Lupus or ITP. Trust me you will find friends here because I have.

I just joined this site. I have lupus and ITP as well. I've been on prednisone since 2010 besides brief pauses during 2 of my 3 pregnancies. I seem to just go up and down with my platelet counts. I respond well to higher dosages, but when we taper, my count tapers.

I've never joined a support group like this. My Lupus is currently inactive besides my ITP.

So, much to be thankful for, but looking for other ways to deal with ITP besides being on Prednisone for the rest of my life.

There are other options besides Prednisone. Your doctor should be familiar with them and if not, a second opinion wouldn't be a bad idea.

I've been on Prednisone since 2005, but for lupus, not ITP.

Hannah, my rheumatologist sent me to a hematologist when my only problem was ITP and it was the smartest move ever. Do you see a hema? The rheums don't know the ITP treatments. Erica

Yes, I see a hematologist. I started seeing a rheumatologist, but since I thankfully have been okay with the the Lupus side, stopped seeing him because nothing was really different seeing him or not. The problem is that we have moved several times. So new doctor almost every move. While seeing the Rheumatologist, he put me on hydroxychloroquine just to see if it would help the platelets- while I was also on prednisone. There seemed to be no help given from that drug, so I stopped taking it after about 9 months since there seems to be a greater risk of eye problems while on it. My new doctor (will be a year with him in Aug.) has said that we will look into other options soon. I have researched the other options. It sounds like my doctor would like to start with Promacta possibly.

6 years ago we discovered my ITP when my platelets were a 12k at a normal physical exam with blood work. I had been sick- but also bruising easily, but hadn't really been overly concerned. I also have had Raynauds syndrome in the past- in high school and basically up to the point when I had the low blood platelet issue arise. According to my blood work, I had tested positive for the lupus marker (or whatever they call it) then in high school but had no other symptoms. Now when the ITP came around- the doctor said that I do have Lupus- gave me an official diagnosis even though I haven't had many of the common symptoms- for which I am thankful. But, obviously, I am cautioned to take care of my self and try to stay healthy.

We have had 3 beautiful daughters. My body was able to get off the prednisone with my first pregnancy since my numbers soared. 2nd pregnancy, my numbers soared and then dropped half-way through, so I got on for the second half and stayed on afterwards. 3rd pregnancy I was never really able to get off the prednisone. And I got a blood clot in my lung 1 week post delivery.

So- now that we are officially done having children, we are ready to consider other options. I respond well to prednisone with higher dosages. (Usually 20mg does the trick to get me into low normal range...but then when we taper- my numbers lower to 30 or below once we get to around 5mg. It has seemed to be a constant yo-yo. I would love to just ignore it all and live my life- but I want to be mindful too- since internal bleeding is a factor.

I've recently finally noticed that the side effects of prednisone is starting to really wear on me. Obvious face bloating, hunger, sleeplessness or restlessness, moody, easily agitated, irritable, (noise will often bother me- like over-stimulation. I feel like I will go crazy at those points) I've notice slower wound healing in my finger tips when they cracked from dryness.

So, thanks for listening. Just ready to pursue other options. I hate the idea of more side effects or cutting out my spleen- but I know it works for some. It is just hard to figure out what is best in my situation. I am wondering if I should go to a bigger teaching hospital and ask to see the head hematologist. I live close to a major city- so there are some big ones around. I just picked the closest doctor to my house to make appointments easier with 3 small children.

Thank you, Sandi. I wrote a longer reply to eklein below, so I will let you read that for more info about me. Yes- I the many options. Just not looking forward to figuring out which one since it seems that prednisone is not working long-term. Thanks again for your interest.

Hannah:

Be sure to mention the blood clot to your Hematologist. As a precaution, he should test you for Antiphospholipid Syndrome. People with ITP and/or Lupus can have these antibodies, which can cause blood clots. Using Promacta when a person has APS antibodies can raise the clotting risk (even if counts are low).

I also think that you should be evaluated again by a Rheumatologist. Just having ITP and a 'marker' with no physical symptoms does not add up to a Lupus diagnosis. It takes physical symptoms and a few elevated labs to confirm it. If you do in fact have Lupus, you should see your Rheumatologist at least twice a year since things can sneak up on you quickly. Labs are especially important on a regular basis since people with Lupus tend to have low levels of certain Vitamins and minerals.

Sorry to preach, but I worry about everyone that comes here!

Hannah, I had a similar story with lupus and ITP. I was diagnosed with discoid lupus around age 22. Other than skin lesions, no other lupus issues until more than 20 years later when I was having a variety of symptoms and was found to have a platelet count of 8k. That adventure started in 2005. I've now been in remission from ITP since 2008 due to Rituxan treatments and (I believe) resolving a serious long term IBS problem through the FODMAP diet.

Out of the blue in January 2015 I suddenly had traditional type of lupus flare which I had never had in my life, with joint pain etc. That lasted one month. Since then I've been fine.

I've been taking plaquenil for 30+ years. Not sure if it helps but it doesn't seem to hurt and maybe provides some protection.
Erica

Plaquenil (hydroxychloroquine) is also helpful in preventing blood clots, especially with SLE and especially if you have antiphospholipid antibodies.

Along with many potential benefits for SLE patients, there is a risk of retinal toxicity; that risk can be partly mitigated by proper dosing and by adequate screening. Screening technology continues to improve.

I think Plaquenil does wonders to prevent complications. It can suppress antibodies that do damage. I've taken 400 mg's daily for 10 years with no problems.