Newly diagnosed w/SLE+ITP

I know. It stinks.

I'm doing okay. Tired lately, but stress has been high. I take: 10 mg's Flexeril, 10 mg's Prednisone, 1,000 mg's Naproxen, 400 mg's Plaquenil, 5/500 Vicodin 2x day. I think that's it. I've also been getting muscular steroid injections and have been using a TENS. The combo seems to be working okay.

Hi Sandi,

I'm sorry to hear you're stressed out, hopefully whatever's going on will pass soon. Stress sucks! I've been reading about the TENS unit, and it sounds very interesting. I'm pretty sure I had it used on my back for dance physio years ago.

I'm going to see the rheumy again in early Sept., so I'll ask about a simple NSAID.

I took the first Cellcept a few minutes ago. Fingers crossed! I read something you wrote about Cellcept a while ago- how you didn't think much of Rituximab flowing through your veins, but the box of Cellcept felt like poison in your hands. I am definitely feeling the same! What were your side effects?

Does anyone know how they treat infections while on Cellcept? I'm just wondering, since the drug info specifies no antibiotics.

No antibiotics? I never read anything about that.

Ha, I do remember saying that CellCept felt like poison. I don't know why I felt that way. The main side effect I had was hard to describe and sounds strange. I felt like my brain went black. I couldn't function at work...the thought process just wasn't there. It was worse than brain fog where you just feel slow or dense....this was total inability to think. Lyrica did the same thing to me plus caused confusion. I can take side effects as long as they don't mess with my brain.

Good luck! Let me know how you do.

Well, 10 days of Cellcept hasn't been terrible, but it hasn't been fun. I'm on my first day of taking one 500mg in the morning, and one at night, so we'll see how I feel tomorrow.

Sandi, I understand what you mean about the 'brain fog' that's difficult to articulate- I feel like sometimes I can't pull myself away from staring at something, like I get suddenly really, really tired. I feel exhaustion like a freight train now. I've also had stomach cramps and nausea that I've never experienced daily, like this. Bleh. I don't feel nauseous until later at night, ~10 hours after taking it.

I'm still willing to give it a shot though, if I can get off/lower prednisone (10mgs/day now), and if the arthritis and swelling gets better.

One weird side-effect is that my overall pain and swelling hasn't seemed to improve, *except* for in one place: my inner ankle area that runs to my arch. The area in both feet used to be swollen and super stiff every morning (I was doing the stairs backwards), and it gradually improves over the day (most days). It's been like this since last October, and after my 3rd dose of Cellcept the pain was almost non-existent the next morning. It hasn't reappeared to the same strength, despite the pain in my joints all feeling the same.

Strange? But thankful.

Yes, that is weird, but I guess you take what you can get. Maybe the rest will come in time.

Firstly, I hope everyone is enjoying their holiday season!

I updated this thread about 2 months ago, but my post seems to have disappeared! In that update, I discussed my poor tolerance to CellCept- I was able to increase my dose over 3 months, from 2000mgs to 4000 mgs. I stayed at 4000 for just a few days before the nausea and general sickness was too much, then decreased to 2000 for a couple weeks before my rheumatologist appointment. In early November, she switched me from CellCept to Methotrexate (MTX). MTX is sometimes tolerated better, and can be injected (bypassing the stomach, avoiding issues) if needed. It's only taken once a week, in a split dose.

Well, the daily GI problems I was experiencing on CellCept are gone, but on my MTX day and the next day is not fun. I started at 10mgs (5mgs morning + night), and have only been able to increase to 15 mgs. I take my first dose at 9am, second dose at 9pm. Then I wake at 3am and vomit. I had one week a couple week ago where I didn't puke, but I don't feel I did anything different that day. I feel like a zombie the day I take it, and most of the next day. I have to drink ginger beer all day to quell the nausea. I saw the rheumy again just last week, and she wants me to try to increase the dose. I decided to wait til after Xmas.

I feel like it is helping with joint pain, even though I still get some swelling and pain. I feel like my fatigue and muscle aches are as bad as ever, though. Hair hasn't started falling out or noticeably thinning, but my skin has become very thin, and cuts easily. My platelets are still unwavering from the ~200 mark, so that's great! I'm still getting blood every 2nd week to monitor everything while on MTX.

Also, I am finally going to be tapering the Prednisone! I've been on since Jan. 2010, starting at 70 mgs. I've been taking 10 mgs/day since May. She wants me to go to 9mgs for 2 weeks. Increasing MTX, and tapering Prednisone sounds like an adventurous start to 2011!

I'm trying to drink a lot of water, and avoid caffeine. Also, avoiding wine (a no-no on MTX) sucks, especially during the holidays! Sorry to be such a Debbie Downer!! I just wish we could shove aside all these drugs and symptoms!

Good luck with all of that! I haven't been able to get off of Prednisone. I'm resigned to it. I used to hate it, but consider it one of my best friends now.

Sorry for unloading so much in the following... I feel like this thread has served as an open journal for me during the past year, and it's so helpful to look back and get some context (and remember good advice!) I thought it was time to quickly update, and hear your thoughts on my situation.

From January through March, I was able to taper from 10 to 7.5 mgs of prednisone, with the typical crappy side effects. I saw my rheumy mid-March, who saw the swelling in my hands and feet, and said not to taper further. She gave me a script for Naproxen 1000 mgs, to take daily for 2 months (til I see her again), to decrease the swelling.

I am still taking Methotrexate, but FINALLY got switched from the pills to an injection. I go once a week to a clinic at the hospital, and get the painless shot. I am so happy the injection bypasses my stomach, so the severe nausea is gone. I still feel really sick on MTX day, but it's bearable.

However, the pharmacist told me the MTX and Naproxen is not a recommended combination, as Naproxen impairs the excretion of MTX. She seemed very surprised at the dose and instructions. I also have a lot of GI issues that it could aggravate. So, I haven't been taking Naproxen. The swelling isn't that bad anyway, and I think the MTX will really improve it (now that I'm actually absorbing the drug). It is useless to try to relay messages about drugs through my rheumy's secretary, so I have to wait til I see her in May.

My platelets have been staying pretty much around 220-230 for months. Since starting the MTX injection a month ago, I've had to get my blood taken every week (instead of biweekly). My platelets went from 233 (first injection) to 178 (today, 4th injection). I know how much they can fluctuate, but it has been a steady downward trend so far, just like the last time they dropped (from 200 to 25, when I got Rituximab). I know they could randomly stop at 150, and stay there! I SO hope for that.

BUT- I do feel that now it's time to think about the practicalities of what comes next if they continue to drop. When I met with my Hemo in January, she was satisfied with using Rituximab again if my platelets dropped. I told this to my rheumy last month, and she said she would NOT recommend it, because of the possible serum sickness reaction I had last time. BOTH doctors were on vacation at the time and didn't see me paralyzed in hospital, so neither can say for sure. At the time of reaction, I was on the 4th day of a major reduction in my plaquenil, which my Hemo feels caused my reaction. My rheumy's office is the reason I was taking WAY too much plaquenil and had to taper so severely, so it's in her interest to blame Rituximab.

I don't want my spleen out. It seems unrealistic to get IvIg every week. So what are other possibilities, if Rituximab isn't a good idea?

Penny:

It's good to hear from you! I'm pretty convinced that you had serum sickness, so I agree with your Rheumatologist on that one. It's not worth it to risk that again. My serum sickness reaction the second time was much worse than the first, and caused permanent problems. I've had doctors tell me that I didn't have serum sickness because, get this...they had never had a patient who had it. So what does that have to do with anything? It's a well documented adverse reaction. Grrrr.

Anyway, try not to worry about your platelets yet. You're still good, and you know there are many ups and downs with ITP. I have dropped into the 60's twice since my last Rituxan, but rebounded on my own.

How much Plaquenil were you taking by mistake? Was it 800 mg's a day? If so, I really don't think Plaquenil was to blame. Some people actually take that dose, and it is high, but it doesn't cause side effects like that!

Hi Sandi! Thanks for the reply.

At the time of my reaction, I was taking 800mgs of plaquenil, and instructed to drop to 200 mgs. It was 4 days later that I became so ill. The rheumy at the hospital seemed to blame the plaquenil drop, said that it could be a big shock to my system, and the head hemo came up to see me, and allowed me to go in for the 3rd infusion. I just don't know what to think!

The only reason I'm thinking the platelet drops could be a trend is that the methotrexate injections can cause that. I've been taking it in pill form for months, but tolerating it so poorly I was hardly absorbing any.

Like you said, I'm still in great shape now, and I'll continue to get biweekly CBCs.

I hope your platelet drop stops, Penny. Keep me updated.

The timing of your reaction, whatever it was, really stinks because now you don't know the truth. It always seems though that doctors find something to blame that exact same reaction on, other than serum sickness. I can understand that Lupus symptoms such as joint pain would occur with a drop in Plaquenil, but I've read that the drug stays in your system for a while, so I don't know if four days would be enough time to feel the affects. I take 400 mg's a day and have for 5 years. Last month, I ran out and for the first time ever, waited four days to get it filled. I did that because I had another script that was running out and I didn't want to go to the pharmacy twice that week. Anyway, I felt no different while I was off of it those few days. It supposedly has a cumulative affect.

Since I had the reaction both times I had Rituxan, and the reaction occurred in the exact time frame that serum sickness usually happens, I have no doubt that's what happened to me. I don't care how many doctors don't believe it. Ha - even the doctor who originally diagnosed it the second time at the ER (my hemo) tried to take it back a few months later. I had an appointment and he handed me a list of drugs known to cause serum sickness. Rituxan wasn't on the list. I don't know what he thought that would prove. I just considered it an incomplete list.

Penny,
I had a bad reaction to my last Rituxan infusion although it wasn't nearly as bad as yours and Sandi's. At conference I asked Dr. Liebman and he said I should never ever have Rituxan again because the allergic reaction could get worse into anaphylactic shock. He said that a full response to Rituxan predicted a full response to Imuran and that Imuran should be my next line of treatment if needed. He said I should only need several months of Imuran (I forget, maybe six months) to get another sustained remission.
Erica

I've read that too...that further exposure to the drug could cause anaphylactic shock. I'm surprised it didn't happen the second time. Good thing it didn't, because I was home alone for hours. I woke up with serum sickness but told my husband to go ahead and go to work and just take me to the ER when he got back. He was an hour away. I laid there for 8 hours and couldn't even get up to go to the bathroom or turn over in bed. (I don't like to inconvenience anyone.) I know, call me stupid.

wow, I had a bad reaction to Rituxan too and also have been told that I can't take it again... Imuran has been been brought up along with Methotrexate,, I am currently just taking Plaquenil and prednisone... and my platelets are on the fritz again... yikes... once again, its nice to come to this site because I don't feel so alone. Sorry that this is happening to all of you guys too.

I'm surprised you are on plaquinil with low platelets. My rheumatologist told me it not only doesn't help low platelets but can harm them.

It doesn't affect my platelet count, and it might help by slowing down the lupus. I went of plaquenil when I was first diagnosed but went back on it after a couple years off. I've been on it for most of the last twenty yeasr.
Erica

Flashmom:

I have actually been in ITP remission since starting Plaquenil 6 years ago. Plaquenil is known to hinder antibody production so it's possible that it keeps anti-platelet antibody levels down as well. Many people with ITP successfully take Plaquenil without platelet drops.

It is quinine based which can cause a problem for some people, but only those who have platelet-reactive antibodies specific for GPIIb/IIIa or GPIb/IX. That is rare. Plaquenil also has a slight blood thinning quality, but this is actually good for those with APS antibodies or anyone at risk for heart attacks or strokes (Lupus patients do have an increased risk).

Hello everyone, I am new here. I am from Ontario Canada. I have found you as I research for myself and have found as I fit this thread. I have SLE among other auto immune disease. But recently have had a new diagnosis of ITP. My platelets dropped in the spring to 13 and I started the high dose prednisone course. The platelets got much better for a while but last week I noticed the bruising again. My platelets are back to 13. So now we know that it is the Lupus causing the problem not leukemia.
What I have been trying to research is the symptoms one feels. I feel my specialists have things in hand, they are conversing about what medication I will need to go on to control the Lupus and therefore the ITP, but they never have much time for the rest of the stuff.
I deal with a loot of symptoms and have for a long time, being that I started with my first auto immune problems in my teens and now I am 54. But the ITP is new and I feel there are new and different symptoms and am looking for some guidance in this regard.
My stamina hits a brick wall at times/often now. I just get so tired I can't even think. My feet hurt especially my right heel bone. I limp around allot. I do hurt allot. What if anything can or should I take for pain when it gets too bad? What should I not take? My hair is dry. My skin is dry. I have a terrible time eating as I always feel too full after two bites. Does the sun affect ITP? or is it just the lupus and the sun driving the ITP? I am sorry for the questions, but I am just trying to learn to navigate this new normal and fit it in my life the best I can.
I am grateful to have found you and do hope you are all doing well on your journey. thanks Sandy Too.

Hello Sandi Too! Same name, nearly the same age, same problems....

Unfortunately, ITP can be a symptom of Lupus. It was my first one. I was diagnosed with ITP in 1998 and Lupus in 2006.

I think that you are experiencing Lupus symptoms, not ITP. Either that or you are feeling the effects of the steroid taper. Pain is not a symptom of ITP, but can be from steroid tapers or Lupus. I have foot pain from Lupus, it feels like I got hit on the bottom of the feet with a baseball bat. Were you taking any antibiotics recently? Some of them can cause Achilles Tendonitis, especially if a person is on steroids. That might account for the heel pain. Or, you might have Plantar Faciitis. I've had that a few times and found that shoe inserts really help. You can buy those at a drug store. Getting a correct diagnosis will help because then you will know how to treat it. I also have hip pain and well, just about everything hurts all the time. Did you not have these symptoms prior to ITP? Sometimes, a steroid taper will cause a Lupus flare.

As for the dry hair, I don't know what could be causing that. It could be a thyroid problem, or due to menopause or steroids. I've had the same thing going on for five months and can't figure it out. My hair is breaking so much that I'm getting bald spots. I've been taking Biotin for months and it's not doing much. I also put coconut oil on my hair overnight and that does help some. Steroids can mess with hormones so it's possible that your body is out of whack.

As for pain, everyone is different with what they can tolerate. I have taken Naproxen, Flexeril and Norco for years. It helps to take the edge off. I also take Magnesium Malate which also helps. You should talk to your doctor about some sort of pain management. Most of the time, they will give you some direction. How long ago did you take Prednisone?

As for the sun, it is not known to affect platelets, but it does affect Lupus. The sun could cause a Lupus flare which in turn could cause symptoms such as ITP. Staying out of the sun though may not necessarily cause platelet counts to go up. Do you treat Lupus at all?

Thanks Sandi and everyone, for this information.
I have had my blood work and it was back to 87 from 13 this week.
I was on 50 mg of pred last week and now will be on 40 mg this week.
I got a call from my Hemo about the new blood work and I am to go for a follow up next week.
She had talked with me last week also before the blood work and said that at this time
I would need to go on some other medication now to control the Lupus low platelet problem.
I expect that is what the discussion will be about.
I have read a little from this site about the drugs. They scare me to death.
I have avoided them at all cost since my definite dx in 2006 for Lupus.
I tried the IVIG after much coaxing, I know my body, and ended up having a reaction so bad it almost took my life while my husband watched.
It was that fast. Nurses and doctors running around, equipment flying...a very bad situation and
terribly painful, never had that kind of pain before.
So you can understand my fear. What is serum sickness? That sound very similar.
I just know what my body will and won't do and I cannot imagine being able to handle these drugs.
I got a second chance with the IVIG situation, but sometimes you don't get second chances,
and if something similar happens I will be in no place to change or do anything about it.
I have problems with my IgA and IgG immunoglobulin. I have read a bit about the IgA and it can be a problem with blood products, perhaps this is what happened with the IVIG treatment??
I wonder about imunoglobulins and these new drugs?
thanks again, so much, Sandy Too

Sandy - it seems that many of us with autoimmune disorders have bad reactions to many drugs. It's a catch 22 because we are the ones who tend to need them. Serum sickness is a delayed hypersensitivity reaction, sort of an allergic reaction that occurs 7 to 21 days after you use a certain drug. It can cause swollen joints, headache, diarrhea, hives, fever, etc.

If you have been able to avoid drugs for a long time that is great. Drugs can cause damage. They sure have to me. If I could go back and do it all over again, I would do things much differently. I wonder what other medication they are talking about with you? There are other options, but some of them can be worse than Prednisone.

Thanks Sandi, it's what I need to know. What drugs that you took have made you feel that you would have done things different now? What situations did these drugs help and what did they harm and how bad?
I am unsure about what drugs my dr is talking about. I just had a call from my hemo/oncologist in which she stated that the problem with my platelets is being caused by the Lupus. That at this time it was lupus that needs to be controlled to control the ITP. She was not giving up any information about what she was thinking past that but to tell me she would be discussing my situation with my rheumatologist of 10 years. I have done a fair amount of reading in a short time. I feel as I always have, I need to be informed. I have been offered drugs before that were not for me. Plaquenil,and methotrexate although I did try them for a short time. I find my worst symptom of drugs is how they affect my thinking and feeling. What I know is that in all this mess I call my health it has been a clear head and a determined and positive attitude that has taken me far. That is not to say that there have not been times when my back was against the wall and wondered why to still fight. I am grateful for your input.
To others reading this, as not to scare them, I have a multi-system problem. Hypothyroid, Addison's disease which is the main problem with any kind of control when things get bad, I have no fight or flight, I dehydrate easily... sjogren's disease, IgA and IgG problems, digestive motility disorder probably due to the dryness and smooth muscle issues that come with sjogren's, my lungs have been affected by Lupus, pleurisy mostly and I have been told of primary biliary cirrhosis due to prednisone use. Now ITP. But honestly so far I am absolutely amazed at the human body and spirit through it all. I have done very well and am happy to get up everyday and do anything no matter how small some days. I keep telling myself others have not gotten to be my age for a zillion reasons, I owe them so just keep going. I listen to my body very closely and do not to tolerate stress. Life is good. thanks so much, Sandy Too

I have tried Imuran, CellCept, Methotrexate, Rituxan, Lyrica and countless others. They were all horrible and not worth it. I've been on Prednisone since 2005. Can't get off of that one.

So one can just stay on prednisone for ITP then? It is what I have chosen, or at least what my body has chosen for me, for my auto-immune stuff so far. I take a standard replacement dose of just 7.5 mg per day for the Addison's disease. Then over the years I have had to raise of lower if I got sick or if the Lupus, or other things got out of hand. I complained miserably at 15 mg....funny how things can change....now I am thinking of being grateful to be allowed to stay on a much higher dose rather than the other drugs I fear. Life IS like a box of chocolates!...oh chocolate I love chocolate and I am so hungry.... :laugh:
So Sandi what dose of prednisone do you take now and what is your platelet count?
You have tried several drugs, very brave of you. I think I have decided with your help and the help of this site and my hubby and sister that Friday will be a learning day only. I will ask all the questions I could not in the first two visits because I didn't know what to ask. Then I will learn about my doctor's ideas and then go home and think and do something fun with those I love.
I have an appointment in a few weeks with my long time rheumy and she knows me, and I will have lots of questions and a good discussion with her too before I ever make any decision. thanks so much again, for all you do. Sandy Too

Hi new Sandy. I've also got SLE and have been in remission from ITP since about 2009. I noticed you mentioned something about gastro problems and I wanted to tell you my story - I'm hoping eventually it will help someone else who was in a situation like me.

My entire life (I'm 57) I had problems with IBS - irritable bowel, nervous stomach, whatever. It was really bad at times, I was one of those people who always knew where all the bathrooms were and seldom got anywhere by car without pulling over to find one. Always sat in the aisle seat, etc. I had discoid lupus since I was 22 but never had much problem other than skin lesions.

Around 2004 I started being much much worse with the IBS. I would leave for work (take the bus) but have to leave the bus stop three times to run to a coffee shop bathroom. I also started having weird bad symptoms like joint problems and major bald spots and fatigue. I got diagnosed then with SLE and turns out my platelets were down to 8k. I managed to keep my spleen. Prednisone helped a little. WinRho helped briefly. Then I had Rituxan in 2007 and 2009 and I've been in remission ever since but I also did one other thing that seems for me to have made all the difference. It's IBS and diet related,

Around 2008 I finally discovered what was wrong with my gut. I had fructose malabsorption and I went on a low FODMAP diet. You can google all that stuff. Basically I can't absorb short chain carbohydrates well and I end up with alternating D and C, which for me, a person with SLE, the chronically inflamed intestines triggered lupus flares.

The diet changed my life. It took a while but my gut got under control and my platelets stopped dropping. When I would eat the wrong thing I'd have a platelet drop along with the horrible gut cramps and other symptoms.

So this long story is to suggest that if you have SLE and gut problems, consider doing whatever it takes to get your gut under control and just maybe not having that inflammation in your body will calm down the SLE.
Best, Erica

Sandy Too I noticed you explained how sjogren's can cause gut motility issues, that was very interesting. My doctor has told me I have the type of lupus that is associated with sjogren's. I never knew it could have gut implications and I wonder if that was tied in with the fructose malabsorption or made it worse. To the bat cave! (I mean google)
Erica

Sandy - No, it is not usual to stay on Prednisone to treat ITP. There are too many long term side effects. I've been on Prednisone for a long time, 15 mg's the past few years, but not for ITP. I've been on it for Lupus. I've tried Imuran, CellCept and Methotrexate to try to get off of Prednisone, but the side effects were worse for me than the steroids and didn't help the symptoms at all. Those three are considered to be 'steroid sparing drugs' but they didn't help and were awful. MTX caused a nodule on my lung and caused me to lose control of my bowels. Imuran and CellCept caused frequent bronchitis and pneumonia, and I still get those even now that I'm off of them. It's constant battle with symptoms vs side effects. No easy answers.

I have Sjogren's too. I have very dry eyes, problems with salivary glands and IBS.

God bless you, for hanging in. You and I sound so much alike. I was talking with my sister yesterday and said that I feel like my back is against the wall this time.
I have been taking pred since 1998. I do believe that it has done me well and the fact I did not choose the big guns. Wish there was something I could do for you, as you have done so much for me these past days. take good care, Sandy Too.

I see my Rheumatologist tomorrow, not looking forward to that. She's new and I've only seen her once. My last one left the practice. Things did not go well the last time. She's trying to force Imuran on me again. I do not want it! I have too much going on to start that drug again. It takes forever to break in a new doctor. I think I've had 8 or 9 Rheumatologists in the past 11 years. Ridiculous.

Have you had any long term side effects from taking Prednisone so long? I have very thin skin and have osteopenia. I've had a few broken bones in my feet and have had spinal stenosis twice.

Oh dear, bad enough to have to deal with it all but the business end of healthcare makes everything much harder. How did it go?
I have been pretty lucky with the pred, but normally I am only on a replacement dose for Addison's
of 7.5 daily.
Now however..... I am puffy, big, pale, tired and drawn looking, hair is falling, terrible leg and foot cramping until my feet hurt and it's hard to walk, and I don't sleep period. Funny about the puffy and big,...where does it come from? It's not over eating as I really don't feel well enough to eat, kind of nauseated and full feeling...and oh, don't forget the brain fog...just a real attractive girl! LOL!
I started with osteopenia but now it's osteoporosis, the bone density read... "high risk for a major break in the next 10 years"...cheery thought...Good heavens, at least I am still able to laugh at myself...Sandy Too