New Diagnosis

Hi Everyone,

I was just diagnosed last week with Lupus(SLE), and I am freaking out a little!
I've had ITP for a couple of years and had multiple rounds of Rituxan have been on steroids for most of that time.(my platelets won't stay up) So because of that my Hematologist is recommending I get my spleen removed. My question is , would that do anything? My rheumatologist thinks my ITP is caused by the Lupus, my hematologist thinks my ITP is a stand alone thing. As I mentioned I am really starting to freak out a little. Also how can I help my wife who is REALLY freaking out over all this?( she wants me to go on disability)

Thanks everyone!!

Dan:

It's okay, I freaked out when I was diagnosed with Lupus also. It's a scary thing to deal with at times. Like you, I had ITP for years prior to being diagnosed with Lupus. ITP was the first symptom.

I disagree with your Hematologist. ITP is a primary disorder until Lupus comes along, then it is considered to be secondary to Lupus. Since ITP is one of the Lupus criteria, it is a symptom, not a stand alone thing.

I would also seriously do research before committing to a splenectomy. It may or may not solve the ITP, but it can cause other problems in a person with Lupus. 1) Some people with Lupus (and/or ITP) have APS antibodies. These can cause blood clots even with low platelet counts. A splenectomy also raises the risk of blood clots, so it can create an additional risk. 2) It's known that a splenectomy can raise the risk of infection. People with Lupus are often on some strong immunosuppressants, in addition to having low white blood cells at times. Risk of infection goes up. 3) People with Lupus have problems clearing dead cells from the body (cell apoptosis). Those cells accumulate and cause inflammation and sometimes infection. The spleen helps to clean those out.

How are your counts?

Disability - do you think you are ready for disability? Can you get through the work days? I am in the process of waiting for approval or denial right now. I worked for 7 years after the Lupus diagnosis and finally reached a point where I couldn't do it anymore. Let me tell you some things: You have to quit working before you can apply. There is a 5 month waiting period where you will have no income. You find out during the 6th month if you are approved or not. If not, you have to appeal and that can take another year. You will lose health insurance if you have it through your employer. You can apply for COBRA. My COBRA payment is $1,000 a month. You can apply for Medicare two years after being approved for Social Security Disability. You have to prove that you cannot perform any job, not just the one you have. There is a lot of paperwork you need from doctors. Tests, medical records, etc. You will need to prove that symptoms and medication side effects keep you from performing job skills on a daily basis. None of it is easy.

As for your wife - the only thing you can do is work through it together. My husband worries about me constantly. I cannot change that. I do the best I can to make him believe that I am okay, even when I'm not. He is, however, the only one who knows the full truth about what is going on with me. I don't tell the rest of my family....I don't like to put that worry on them. For me, this has been an 8 year long struggle with no break. Things keep getting worse. It gets really old in time and can place a strain on relationships. We do the best we can and he keeps repeating "For better or worse" to make me feel better.

Some people do quite well with Lupus and can lead a normal life. I tried for a very long time. I worked for about a year on Methotrexate and that finally did me in. I went to work my last week with a boot on my foot due to a stress fracture from prolonged Prednisone use. I also had pneumonia that week due to Methotrexate use (raises risk of infection). I was a mess!

Thank you Sandi! My counts have been all over the place, I had four rounds of Rituxan in December and my platelets shot up to 279K then a week later they dropped to 220k then to 170K and still dropping fast! My ANA was 1:32(?) speckled pattern and I did have a positive RA test and my antiphospholipid panel was barely positive as well. My Rheumatologist thinks that because he ran all those tests just after my fourth round of Rituxan it might have affected my tests.

As far as work is concerned I am having a very hard time dealing with the fatigue and the joint pain as I am on my feet all day (retail manager) 10-12 hours is a common day for me. But I do have long term disability through my work.

My Hematologist has been pushing splenectomy since my first ITP incident in 2009, my Rheumatologist does disagree with him on that and just recently started me on Planquinil 200mg twice daily and took me off steroids.

The plaquinil may help a lot. Also stay out of the sun. Keep the spleen!
Erica

Your counts are good and just might stabilize. Really, if you can just stay above treatment level (above 30k), that is a realistic goal when one has ITP. Counts do not have to be normal.

I think I would be more prone to listen to the advice of the Rheumatologist. He/she is looking more at the big picture instead of just the counts. That can be very important in the future.

If you had an elevated Antiphospholipid test, then you do have the antibodies. Those can come and go, but knowing that you have them gives you an advantage when making decisions. Do you know which antibody you have?

Plaquenil probably will help to an extent. I'm not sure how much it will help the RA. I have an RA overlap as well and it has affected my hands. Plaquenil isn't helping that and I've tried a few RA drugs without success.

You're lucky to have long-term disability. That can really help. I didn't have any. You might be able to use that while waiting for a disability decision. It might be a good idea to consult with a lawyer. They can give you a good idea as to whether or not you have a good case or not before you apply.

I go in today for another CBC as my Rheumatologist is concerned about how fast the platelets are dropping, I will be happy with anything over 30K.

I'm not sure about which antibody I tested positive for, (I was never told I was just told that I was mildly positive) so my Rheumatologist didn't seem real concerned about it . But he does want to redo that test again in July/August time frame.

The Planquinil I just started so here's hoping that it works, cause like you the RA is affecting my hands(really bad in the mornings) I also take 400mg of Motrin twice daily.

As far as my work is concerned they are getting frustrated because I am in the middle of a flare (and the fatigue that goes with it) and I have constant doctors/lab appointments that I have to leave for so my boss has indirectly suggested that I use my LTD benefits.

Try to always get copies of labs. That way, you know exactly what's going on. I used to just take their word for it that everything was okay, but learned that even a low normal can cause symptoms with some things (such as low potassium, B-12, ferritin), etc. These are an easy fix, but can really add to the symptoms list and make you more miserable.

Hopefully, Plaquenil will kick in soon. I found that it did stop the most severe of the Lupus joint pain within a week or two. It's hard to know the difference between Lupus joint pain and RA joint pain. My hands actually have swollen joints and I'm losing dexterity, so that is probably not Lupus-related. Don't know.

I use Naproxen....1,000 mg's a day. It helps a bit, but Prednisone helps the most.

How odd that your employer would rather have you not there at all than to have you for the hours you can give. Mine was fine with me coming and going as long as the work got done. There was no one to fill in for me so I had to do it. If you need to take the LTD though, it's there and you're lucky to have it!

Just got out of the ER! My legs decided to stop working and I almost fell at work. Fortunately one of my employees saw my legs turn to rubber and he caught me. The ER doc said that it was a real bad flare. And I now have a discoid rash on my legs. (they also feel like I am walking through thick mud) Is this normal?

There is no "normal" with Lupus, but no, that is not normal, With symptoms like that, you should watch for things like Guillain–Barré or another type of polyneuropathy syndrome which is more common for Lupus patients than the general population (especially after any illness or vaccine). Don't hesitate to go back if it gets worse. I do not trust ER docs when it comes to Lupus - they just don't know enough.

I have been having problems with very weak muscles too...jello legs and lack of coordination. At an ER visit two weeks ago, I found that I have low Magnesium. It was the lowest normal number on the reference range, but they gave me an IV anyway. Low Magnesium can cause symptoms like that, in fact, many mineral or vitamin deficiencies can cause things like that, so you want to be sure that they check all of that. People with autoimmune disorders do not absorb vitamins and minerals through food as easily as normal people do, so you could be at risk for deficiencies.

Did they do anything for you? What tests did they run?

They did a CBC and a CMP all my electrolytes were at the low end of the "normal" range the Anion Gap was high and my Globulin was very low. The ER doc said it was just a bad flare and said to see my Rheumy doc. I did that now he wants to do a bone scan and a uric acid test next week. They did put me on Tramadol for the pain.

I can sure tell you that low end of normal can cause symptoms. I can always tell when my potassium is on the low end which it often is. Docs won't treat but it sure makes a difference when I do it anyway.

About Magnesium...I've researched it lately and found out so much about it. I just typed a really long response to someone the other day, so I'll find that and copy/paste it.

Cont....

Since I've had vitamin deficiencies before though and suffered with symptoms for years before discovering the problem, I try to really do my research. I have found out that if Magnesium is low in the blood, it is low in the cells and can take months of Magnesium supplements to see improvement in symptoms. It's not a quick fix. Doctors tend to believe that as long as your level is in range, even low normal, you are fine. Not true.

You also cannot just take any type of Magnesium. Most supplements sold in drug stores are Magnesium Oxide, and that is the least absorbable kind there is. I'd been taking that daily for a long time and apparently, it wasn't helping at all. A lot of people with autoimmune disorders have problems absorbing vitamins and minerals from food and basic pills, so you have to get mega-absorbable brands. I've just learned that when buying Magnesium, any type that ends in "ide" is the worst, and anything that ends in "ate" is the best. Magnesium Orotate is the most absorbable.

I'm telling you this because you have to check things out for yourself. Get copies of labs and check out your results. If anything is borderline high or borderline low, research it and find out the symptoms. Request that vitamin and mineral levels be checked because those are often overlooked or not thought of as a potential problem. It took me two years to find the reason behind my RLS, and it was something that was overlooked by 3 of my doctors. I had low ferritin which was not considered a problem because it hadn't affected my red cell count yet. When I researched the symptoms of low ferritin, I found that RLS was a possible symptom. None of my doctors knew that and once again, blamed Lupus. I started my own iron supplements and within 2 weeks, the RLS was gone and I could finally sleep more than 2 or 3 hours a night. It's been a few years and I have not had the problem since.

I know how frustrating it is when you can't find what's wrong. You can't really blame doctors though because they really can't know everything. They know their specialties but that is just the tip of the iceberg. We are very lucky in this day and age to have so much information available; that is a huge advantage.

I've struggled with low levels of many things for years....B-12, potassium, ferritin, Vitamin D, Magnesium, to name a few. I am taking a good Magnesium supplement now and I can't believe how much it has improved the all-over muscle weakness and energy level. I'm still having problems in those areas, but two weeks ago I couldn't even stand long enough to do a few dishes.

You feel lousy enough as it is with Lupus, so having any other thing along with it can make you feel much worse. These are things that doctors wouldn't normally think a thing of because labs are technically still in range. I'm tired of depending on them to help me when nothing they have suggested over the years has really done that. You wouldn't believe the long list of meds I've tried that ended up just doing more harm than good. I've been on a quest lately to try and improve my over-all health, so have added a lot of supplements based on lab results and research. I have also changed my diet and the thing that made the biggest difference so far has been cutting out night shades (potatoes, tomatoes, peppers and egg plant). If you research them, you will find that they can contribute to inflammation and I didn't realize how much they were causing muscle pain until I stopped eating them. It was hard because I love those foods, but it's been worth it.

I do take a few supplements right now, flaxseed, calcium, D3, C and a multivitamin. All of these were recommended by my family Doc. But I've never heard of taking magnesium supplements I will do some research on it, it sounds like it could help.

I also did a quick check on the lab work and everything I found was talking about kidney issues.

Sorry if I'm driving everyone nuts with all the questions but my Docs don't seem to be very forthcoming with answers.

Dan:

That's what we're here for. Ask away! I will do anything to help anytime and if you can benefit from anything I say, that's great!

Multi-vitamins are crap. Not enough in them to do squat. I take individual vitamins, high dose, mega ones. Hard to find, but they are around and Amazon is a great place to look.

Don't get upset and start thinking kidneys just yet. Have you had Creatinine/BUN test done?

My bun and the creatinine were both at the upper end of the normal range. I will most certainly look at other supplement choices. And I do use Amazon a lot!

As far as the kidney thing, I don't think I have any kidney issues it's just what was on WEBMD.

And I am VERY grateful for all the help that you (Sandi) and everyone else on this site as it has educated me and very much enlightened me.

I just can't stress enough how much you have to stay on top of things for yourself. There was a woman here a year or so ago who was having a lot of symptoms. She was diagnosed with RA and given a script for Methotrexate. She and I started it at the same time, and compared notes on the Forum. It is a very powerful immunosuppressant, actually an injectable chemo and has some nasty side effects. Anyway, she took it for months only to discover eventually that she was having thyroid issues and didn't have RA at all. How can that happen?

I've had so many things missed or misdiagnosed since I started having Lupus symptoms 8 years ago and really paid a price for it.

These are the meds and supplements I take daily: Plaquenil 400 mg's, Prednisone 15 mg's, Flexeril 5 mg's, Toprol 50 mg's, Naproxen 500 mg's, Norco 325/500, Xanax .25 mg's, Vitamin D 50,000 IU's weekly, Magnesium 800 mg's, Sublingual B-12, Iron, Krill Oil, Ultimate Flora, B Complex with C and Potassium 595 mg's. I had to quit Methotrexate because it was causing lung damage.

WOW you have been through a lot. I know I have some thyroid issues as I have been on levothyroxine for years and I also have hypertension which I take Lisinopril for. My Rheumatologist says that the Lupus could be the underlying cause for both and that I could have had undiagnosed Lupus for years. I did have another RF test done and it was positive again. So he wants me to think about doing the Methotrexate along with the Planquinil he also wants to restart me on Prednisone within the next month. But I have read about some serious side effects of these, so I really am not sure.

I asked the Lab for all the copies of my lab work and they said they would email them to me.

Sandi wrote: ... only to discover eventually that she was having thyroid issues and didn't have RA at all. How can that happen?

I'd bet you it happens more often than not. My friend was diagnosed with lupus years ago and was being treated for it [for years] only to find out a few years ago she didn't have lupus at all, she has MS.

You are probably right.That's why it's a good idea to get copies of everything, ask lots of questions and forums like this where there are people who've been there and willingly share their knowledge.

Melinda - my daughter with Graves just went through a lot of testing at a Rheumatologist's office. She has so many weird symptoms similar to Lupus. All labs came back normal, thank God, but now they are blaming Graves and the medication she takes, which could very well be the cause. She is having her thyroid removed on the 16th, hoping it will help.

Dan - I've had no problems with Plaquenil. I've been on high dose Prednisone a few times for ITP, and have been on 15 mg's for about 8 years. I'm sure you know those side effects. I consider those tolerable now though compared to some other drugs I've tried. The two worst for me were Lyrica and Methotrexate.

I see my Rheumatologist this week and have to face some hard choices. It's either high dose Prednisone, Imuran or doing nothing and getting worse.

Sadi,

I have graves and I we on medicine for 2 years until I went into remission. I never had any badcreactions. My sister had her thyroid removed after cancer and it was a very challenging surgery. She would recommend doing small dose radioactive iodine rather than removing it. Has she considered that?

The prednisone I am very well aware of, but the Methotrexate is the one that I'm most concerned with as I have heard that it has some nasty side effects.

I hope your daughter does well.

Vdeutsch:

My daughter and I have done so much research and have found that RAI can cause more problems than the surgery can. The chances of TED and other Graves symptoms are much higher with RAI and the risk of cancer goes up. In the UK, they never recommend RAI, especially for a young woman and I tend to agree with them. She's been on the meds for 5 or 6 years and is not even close to remission. Her TSI is still too high. Did you take Methimazole? She is having the new robotic surgery (no throat scar) and really liked her surgeon. I have a friend who had thyroid cancer and had her thyroid removed and did great. I guess it all depends on the patient.

I have always thought of thyroid removal the same way I think of splenectomy....last resort and not an option unless the situation becomes dire. I think she is at that point since her symptoms are becoming debilitating. She's 27 and it's her choice. I am behind her decision. It's a gamble, but I think it's time to try something else.

Dan:

Some people do okay with Methotrexate. I did it for a year and a half, first the pills and then the injections. I never found that it helped much with symptoms and I felt awful while I was on it. My biggest problem was uncontrollable bowel movements...anytime, anywhere, no warning. Yes it is horrifying for me to admit that, but that is the unpleasant truth and I wish someone had warned me. You might not have that problem. I also kept getting sick with bronchitis and pneumonia all the time and found out it was causing lung damage. That was the end of that!

Sandi,

I wish her the best of luck! That is really cool that they can do it robotically without a scar. My sister's case was much different since she had cancer, so they had to go in and remove a lot more. She has a huge scar and her vocal chords were damaged. She had several infected lymph nodes so they had to do high dose rai as well. She has no sign of cancer 16 months later, which is good.

As for my graves, I was on methimazole for 2 years being diagnosed right before graduating college and have been in remission for 4 years. I was diagnosed with itp right after grad school. ( its a running joke that i cant go back to school or will get another autoimmune disorder)It is not a fun disease to have. It basically feels like you are on speed all of the time. I can see why your daughter is ready to try something else. I hope that your daughter's surgery is successful. It took my sister about five months to find the correct dosage of synthroid ( she actually is on something else like synthroid but I'm not sure what it is called)

Do you have any signs of Graves? My mom was told by the endocrinologist that her thyroid feels like someone who has graves but her levels have never been high, so it's a mystery.

The lung damage is one of the things I'm concerned with as I have already had PCP pneumonia (I almost died twice from that) when the ITP first came around because it is an opportunistic disease on compromised immune systems.

Vdeutsch:

I found out in December that my thyroid is enlarged. I was having a lung CT and that just happened to show up. My TSH was normal and a subsequent thyroid scan did not show any nodules. I am going to follow up on it though and request a full thyroid panel including antibodies this week when I see my Rheumatologist.

The robotic surgery still carries a risk of damage to vocal cords, but that is true of the open surgery too. They go in through the arm pit. The surgeon is an Endocrinologist specialist at a top Pittsburgh hospital, so I have to be confident. My daughter works in the OR with these surgeons, but has not seen this particular surgery (and doesn't really want to).

I appreciate your input. We were hoping that my daughter would go into remission too, but it's been 5 years and there's no sign of that. Her goiter is still quite large and never did shrink in size. I think she stuck it out for a long time. She could never have children while on Methimazole due to the possibility of serious birth defects, and PTU has black box warnings of liver toxicity, so we knew this would come eventually.

Dan:

You'll want to consider MTX very carefully then. I used to handle immunosuppressants pretty well, but not anymore. I get sick a lot more often and it gets more serious as time goes on. You get to a point where you're stuck between a rock and a hard place because symptoms get out of control and cause damage, but so do the medications to stop it. Either way it's a risk.

Keep in touch. It's nice to have someone to bounce ideas and thoughts off of.

My hematologist would not let me take the anti-thyroid meds because of my ITP - after reading and researching I was very glad she wouldn't! Those drugs have a lot of nasty side effects. I think we discussed it when your daughter was diagnosed.

I'm sorry she is having problems - I wish her well with her surgery and getting her thyroid levels in range!

I know, Melinda. But there are so many people that reach remission on those meds, like Vdeutsch did. We were really hoping that Holli would too. I've seen other people with the same symptoms as Holli who were not on the meds (discussion boards), and it was caused by the FT4 level being too low (but still in normal range), so other things can cause it. We felt it was worth a shot. Her TSI levels were always way too high and still are, so remission is unlikely. She was on a pretty low dose of Methimazole and it did keep her thyroid levels in a good range

I am still having moments when I want to call her and make her stop the surgery. Usually it's when I read something negative about removing the thyroid with Graves. There are so many pros and cons and it's hard to know what will work for each patient. We always knew there was no rush to have her thyroid removed, just like there is no rush for a splenectomy for ITP. Holli made this decision and I will not make her second guess it now, that would just torture her! So, I will be there for her and pray that her research proves to be the best move for her.