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TOPIC: Lupus and Low Blood Platelets

Lupus and Low Blood Platelets 6 years 7 months ago #27031

  • Mina001
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Hi,

I am a 53 year old female and was diagnosed with Lupus and had a low blood platelet count in January 2012. For the last seven months I have been on Prednisone up to 60 mg a day and Imuran 150 mg a day. Needless to say not only did neither drug work to bring my platelets up or suppress my Lupus, I suffered with every side effect almost in the book. My first RA and I parted ways in July after he kept wanting to increase the doses of the medications even though I was getting high liver enzyme and bilirubin levels due to the drugs. My hematologist also was very wary of the side effects and I am now off the Imuran and my Prednisone is down to 15 mg a day with less of the drug side effects.
But, the big obstacle are my platelets which hardly budged on the high dose of Prednisone up to 67,000 peaking and now back in the low 30's again.
I see people on this site have much lower platelet counts so I am not complaining but feel like a walking timebomb. I just finished another round of labs for a second opinion with RA #2 and hematologist #2 at a research hospital here in Louisiana. I know my hematologist #1 is concerned because I have to get labs done 1 a week now.
To be honest, I am scared to death. I have researched Lupus until I am going crazy and low blood platelets and treatments and outcomes and have only learned a couple of things.
One, the doctors so far have no concrete answers and two, each person has their own set of issues and reacts differently to any and all treatments.
It seems as though my Lupus is also killing my red blood cells although I am blessed because it seems to be a slower process but if the docs cannot get the Lupus to go into remission, the damage is going to keep going.
Hematologist #1 has similar thoughts as #2 and we are now discussing Rituxan. I just don't do well with drugs period but am having to reevaluate everything and am going to have to get some coping skills. I literally drive myself crazy especially since I have not been able to sleep well with the Prednisone.
I just really wanted to talk to someone that has combination problems and what they found worked for them. If I get anything in an IV I am going to need some type of tranquilizer to get through it. I can take pills all day long but when it comes to something shot into my veins that is another story. And I keep thinking I have no alternative, without treatment I will not survive. Sorry I am just having a hard time dealing with this as it is so new.
Thanks if anyone is out there and feels like responding I would be greatly appreciative.

Mina

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Lupus and Low Blood Platelets 6 years 7 months ago #27036

  • eklein
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Couple of things. You may survive perfectly fine with platelets in the 30s and no other lupus symptoms or bleeding symptoms. I don't know about the red blood cell issues?
A few of us on the board with lupus and ITP have had good luck with Rituxan, with remissions of years and still counting. But several of us have also had allergic reactions to the Rituxan.
They pretty much always premedicate you with benedryl for the Rituxan which should knock you out pretty good although it isn't really a tranquilizer per se. You could ask for something like lorazapam or valium as well. Then you'll just sleep through the whole thing for sure.

The only major problems I've had from lupus are ITP (in remission now from Rituxan), skin lesions and extreme sun sensitivity. Lupus really varies person to person.

As you pointed out yourself - the Pred does not help with coping skills! I told people that I was on a drug whose side effects were rage and hunger. Like one of the sick people in 28 Days (movie).

Another thing to consider, - is there any ongoing irritation, inflammation in your body that could be kicking up the lupus? For me, at the time I got very sick with ITP (my count went down to 8k and I felt awful and had a huge bald area on my head...) I was also experiencing the worst irritable bowel issues of my life. After a couple of years of that I discovered I had a digestive disorder called fructose malabsorption. Bottom line - I got my intestines healed by changing my diet (colonoscopy showed healed scars) which coincided with my sustained remission from Rituxan. Did the elimination of the intestinal inflammation make a difference? Maybe. Dr. Liebman at conference said it might have helped and didn't hurt.
Good luck - Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Lupus and Low Blood Platelets 6 years 7 months ago #27044

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Mina:

Hi, I also have Lupus and ITP. ITP has been in remission for about 7 years, but before that I treated off and on for 7 years. I used Prednisone and Rituxan which were the only two things that worked. My lowest count was 3. A count above 30 is a safe count, so I wouldn't worry about that. I once hung out in the 20's for months because I wanted to avoid treatment as long as possible. Some people do not treat ITP at all, live with low counts and they do survive. Low counts do not mean death.

I have had more problems from Lupus than I did from ITP. Are you taking Plaquenil? If you are only on one med, you're doing pretty good.

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Lupus and Low Blood Platelets 6 years 7 months ago #27057

  • Mina001
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Hi,

I started out with a 69 percent inflammation and was started on the Prednisone and Imuran and it did get as low as 28 but then with all the side effects and the high doses of Imuran I became jaundiced and my liver panels started going up. Last reading my doc said my bilirubin levels 3x what they should be and the Imuran had to go. Doctors have done a liver biopsy and I am negative for all hepatitis and cirrhosis but my medication choice seem to be limited based on my liver problems and enlarged spleen.
So, I am just trying to decide what choices to make next. I am finally down to 15 mg of Prednisone but the muscle stiffness and aches are starting to kick back up again but that is ok I handle pain better than the crazy side effects of the higher doses. That about did me in with the hair loss and moon face and peeling nails and blurred vision and speech impairments just to name a few. My headaches are better too as long as I stay out of the sun and keep the room darker. I have just become reclusive though because even my friends I have or had don't seem to understand the multi facets of the disease.
You are right though everyone is different. The hematologist #2 just said that the only reason I was not severely anemic was because my bone marrow is still functioning but with the high inflammation rate and the red blood cells being destroyed it won't be long until something will happen with the marrow. He wants to get the Lupus into remission because he believes that I am and have been in one continuous flare for some time and just did not know it until we started watching my labs.
So, next Thursday I will see my RA and have another ultrasound on my liver and spleen to see if there is something else.
I guess bottom line I have a lot of different issues all of which are contributing someway to the destruction of my body.

Thanks for listening, I am just trying to deal because there is no simple answer, no one drug, no one problem, and no one thing to go after.

Mina

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Lupus and Low Blood Platelets 6 years 7 months ago #27059

  • Mina001
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Hi Sandi,

I have not tried Plaquenil yet as my first RA said it was not a very fast acting medicine and he wanted to treat me aggressively which as we see did not work with the Prednisone/Imuran combo, it only made me worse and killed my liver on top of it all.
So, I am only on 15mg of Prednisone right now but am going in on Thursday to decide on next course of treatment.
I hear what you are saying about being ok with the platelets in the 30s and I was all right with the wait and see too until they said there was a recent destruction of the red blood cells from the Lupus not going into remission and that the damage could be a lot worse and happen quickly if they did not treat me so I am having to look at that too.
I am getting so many opinions and advice it is hard to see clearly and ultimately I know it is my decision and that is what is so hard. How much damage is done all ready and how fast will I deteriorate if I do not make a treatment move.
I just need time to digest what I am hearing, I really need a vacation away from doctors. I have been going as I said 1 a week to a Hema and 1 every 2 weeks to a RA for 8 months and I am burned out and confused. That's where I need the therapist part, just to cope; going from just taking blood pressure medicine and thinking I was just tired and depressed to having a life changing disease. It is just alot to take in.
Based on the problems that I know of, I have to make and educated choice of treatment with 5 basic problems. My liver, spleen, low blood platelets, red blood cell destruction, and full blown active Lupus. If you put that into Web MD symptoms, it blows up....lol

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Lupus and Low Blood Platelets 6 years 7 months ago #27062

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yes, Lupus can be tough. I haven't had a remission yet either and things do keep getting worse.

Plaquenil isn't fast acting, but it is one of the best DMRD's for Lupus and I don't see what harm it would do to start it. Many people see an improvement after a few weeks and it is well tolerated. I haven't had any side effects and I've been on it for 8 years.

Do they think the red cell destruction is Hemolytic Anemia? Have you had the Coombs test?

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Lupus and Low Blood Platelets 6 years 7 months ago #27064

  • Mina001
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Yes, I was tested and Coombs test was negative. They ran the Haptoglobin and supposed lowest normal range is 41 and mine was 8 so something definitely wrong with the liver and even the Imuran would not have lowered it that much so I guess they are trying to find out why that is happening too.
The hema said that the lupus was responsible for the destruction of the red blood cells but I am not sure if he knows why but he said the saving grace was that it was a slow destruction rate right now.

I think that they just keep running blood tests and then it seems like something else shows up. I have to say though that I feel so much better just being off that Imuran and this lower dose of Prednisone. I still slur my speech some and have hair loss and it has not done anything for the platelets but I feel better.

Feeling better makes a lot of difference but the doc says with my problems you won't feel it, it will just happen and that is what scares me that I might not have any warning.

I am going to ask about the Plaquenil though. Have you had any eye problems because of it? They told me at first when I was going to try it that I would have to go to the eye doctor every 6 months regardless of any changes.

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Lupus and Low Blood Platelets 6 years 7 months ago #27065

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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No, I don't have any eye problems with Plaquenil. I go every six months for the exam.

I go through the same things and try not to panic every time something new shows up. I started having neuropathy a few years ago and was really worried that would progress, but it hasn't - it comes and goes. I have APS antibodies and worry about clots; take a daily aspirin for that. A few months ago I began having swelling in my knuckles, so we think I have an RA overlap. My fingers are losing some dexterity and I'm just hoping it doesn't get any worse.

I have been doing Methotrexate injections every week for the past 8 months. I tried to quit a few times but every time I do, something flares up and I have to go back on it. The side effects of that are the worst yet (only Lyrica can beat it in my book).

All you can do is take one day at a time and try not to worry. I've worried so many times and it turned out to be for nothing....the thing I feared didn't happen or wasn't as bad as I thought.

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Lupus and Low Blood Platelets 6 years 7 months ago #27067

  • eklein
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Yes you have to go to the eye doctor, I go once a year, for the most boring medical test that exists. I've been taking plaquenil for 20+ years. The eye problems are very rare. The test is really really boring. I'd rather have a mammogram, honestly.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Lupus and Low Blood Platelets 6 years 7 months ago #27072

  • Mina001
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That's great to know that you have not had any problems with the eyes. The eye exams are quite painful for me though because of the light that the doc shines to look in my eyes. My sensitivity to light is so great that I come out of the chair and eyes are just tearing, so yes, I too would rather have a mammogram which reminds me that I need to make an appointment for that too.....

Thanks for the encouragement.....

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Lupus and Low Blood Platelets 6 years 7 months ago #27073

  • Mina001
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Thank you for all the information. I do feel better talking to people. I will go on Thursday and ask about the Plaquenil and hopefully I can do it.

I sure hope you all feel better too, my friends on other Lupus boards have really had some struggles too with the disease and most have had it a while.

But I am a massive worrier so I will try to not worry so much.

Thanks for the support, it means alot.

Mina

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Lupus and Low Blood Platelets 6 years 7 months ago #27078

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Ha, yeah, that is a boring test. I don't have the attention span and am surprised every time I pass. My mind wanders....

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Lupus and Low Blood Platelets 2 years 8 months ago #54862

  • Girlygrl102075
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I am 40yrs old, was dx with discoid lupus 6yrs ago and dx with ITP in December 2015. I am currently on NPlate and Prednisone for ITP but nothing for Discoid Lupus. Counts are currently in the 70's and holding. Wondering if anyone else has discoid and ITP AND what txs are you doing? Are you seeing positive results?

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Lupus and Low Blood Platelets 2 years 8 months ago #54863

  • eklein
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I was diagnosed with DLE at age 22, then ITP (count of 8k) and SLE at 46. I'm 56 now and in remission from the ITP. I occasionally have DLE and SLE problems but they are mild I take plaquenil since 1989.

Your counts are great. What are they without the meds? Maybe you don't need the prednisone?

It is interesting to see a lupus person responding to nplate, I don't remember seeing that here before.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Lupus and Low Blood Platelets 2 years 8 months ago #54866

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I don't remember seeing any Lupus patients on N-plate here. Most use steroids or Rituxan and respond well so no need to move on to N-Plate. There aren't many of us here to begin with.

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Lupus and Low Blood Platelets 2 years 8 months ago #54872

  • Girlygrl102075
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Currently counts are holding in the 70's - 78 to be exact. December it was 19. Hematologist started me on 80mg Prednisone daily and NPlate weekly. I am now down to 5-10mg Prednisone daily and continue NPlate every week.

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Lupus and Low Blood Platelets 2 years 8 months ago #54873

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Your counts are perfect. I'm glad it's working for you.

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