When Doctors Disagree on Treatment

I was diagnosed with Lupus in 1995 at the age of 17 and ITP in May 1998 at the age of 20. My ITP progressed to TTP and Hemolytic Anemia in October 1998. After hospitalization for plasmapheresis, I was treated with high dose prednisone and solu-medrol for almost a year. I went into "remission" of the ITP/TTP/Hemolytic Anemia for 5 years with normal platelet, RBC, and HgB levels. Some 5 years later, my ITP returned (platelets range between 70-90k) and I have had chronically low platelets for the last 10 years (no return of TTP/Hemolytic Anemia, thankfully).

As I mentioned, I also have Lupus and it is widely thought by all of my physicians that the ITP and Lupus are related. Although, all of my doctors admit that there is no way to be certain. Of late, my problem lies with treatments (or lack there of).

My hematologist is steadfast - he does treat ITP until platelet count is below 50 (since my "remission", I have not dropped below 70k). However, when he looks at my blood smear, he tells me that he sees "many" signs of inflammation and he questions why my rheumatologist is not treating my Lupus with biologics.

My rheumatologist says he does not treat "inflammation". And he honestly doesn't know what the hematologist is seeing on my blood smear that is causing alarm. He, on the other hand, does not like my platelet count being below 100. He would like me to take a course of prednisone to bring my platelet count up to 100.

What is your hematologists threshold for treating your platelet counts? Is it 50 or lower? Higher? Does it depend on how you're feeling?

Wow, they sure do disagree! This is how I see it:

ITP, TTP, and Hemolytic Anemia are symptoms/complications of Lupus. Any time they appear by themselves, they are the primary disorder. If they appear with a Lupus diagnosis, they are secondary to Lupus and are connected by, as I said, a complication of Lupus. They are listed as part of the diagnostic criteria for Lupus. I'm sure glad you are in remission for TTP as that can be so scary!

As for the Hematologist and his assessment of inflammation, do you know what particular labs he is looking at? Are you having any inflammatory symptoms such as swollen joints that is making life difficult? You'd have to know those answers to determine whether treatment is necessary. The biologics are scary and I am going through the same conversations with my Rheumatologist who keeps pushing them. I am holding off as long as I can. Sometimes they do more harm than good. I've been trying everything under the sun before moving on to those, but am on the very last option right now (Imuran).

A Rheumatologist should treat inflammation if it is causing symptoms or damage to joints or muscles. If not, there is not much to treat. Treating just to get normal labs is not worth it, but you'd want to treat if inflammation is interfering with your quality of life. Benlysta is the only biologic for Lupus; the rest, Enbrel, Humira, etc are mostly for Rheumatoid Arthritis and can actually make Lupus worse. They keep pushing those on me too but I won't go there until they determine for sure if I even have RA, so I just had some tests done last Friday to try to find that out. I've had swollen joints in my hands for over a year and am losing dexterity.

As for your counts, I don't see any reason that you'd need to treat your platelets to get to 100. I'd be fine if my counts stayed above 30k. That's my personal threshold. Unless you are on blood thinners, 50k is a reasonable count.

You've had a really tough time and have been through so much. It sounds like you are doing better. I don't know what your Lupus symptoms are, but if they are not too bad, I wouldn't rock the boat with biologics unless I had to.

Thanks Sandi. Sounds like you are in the same boat as me with both a Lupus and ITP.

I've had my fair share of issues over the years and am also glad the TTP/hemolytic anemia has not returned. Plasmaphereis is not a procedure I ever want to repeat again!

My hematologist's concern is based solely on what he sees through the microscope when he looks at my blood smear. The only labs he orders are CBC and iron/ferritin/TIBC. His exact words to me were: "I see many signs of inflammation on your blood smear. I am surprised your rheuamtologist is not treating you with biologics. Please mention this to him at your next appointment."

I, of course, already knew what my rheumatologist would say - he doesn't treat inflammation. My sed rate has been elevated (100+) for years. But I've been relatively asymptomatic of late. My main complaint is fatigue. I never have any energy. It has not progressed to the point that I cannot go to work or get out of bed, but it does interfere in my life. I have a 4 year old son who is full of energy and wants to go-go-go, but I can't keep up. Thankfully, my husband is able to step in when mom can't play ball or run around in the yard.

My initial symptom when I was diagnosed with Lupus was joint pain and swelling in my hands. My pediatrician (I was 17) was excellent and suspected Lupus immediately (I also had bouts with mouth ulcers and stomach issues) and sent me for lab work. My lab work was highly abnormal and I was sent to rheumatology who confirmed the diagnosis.

Ironically, I have not had any joint pain since my initial diagnosis. I have a positive Rheumatoid Factor which I've been told is unusual in people with Lupus. I'm not sure if this means I'm on my way to developing Rheumatoid Arthritis or not, but it is something the rheumatologist keeps an eye on.

As for treatment, I currently take nothing, not even Plaquenil. I have stomach issues and try not to take anything unless absolutely necessary. I resist medications as much as I can, so when my rheumatologist mentioned treating with prednisone to get my count up -- well, I'm not sold on the idea. And I'm certainly not interested in taking biologics either, hence my confusion with these doctors who vastly disagree!

I feel for you with the joint pain/swelling and loss of dexterity. It is awful and not much helps ease the swelling. When I had those symptoms, I was still in high school and I remember having much difficulty holding a pencil while taking my SATs. It is terrible to lose dexterity in your hands. I hope you have get some answers and can make a decision whether to start treatment.

I agree with Sandy regarding the ITP. Most doctors don't treat ITP with your numbers. Usually, 50 is the starting point; but, I, too, would not treat unless they were below 30. It seems you are doing fine except for the fatigue, so why rock the boat?

As far as the fatigue goes, I think that is something you just have to work out. I always have intermittent extreme fatigue. But, taking a nap seems to help out and I just keep going.

Try to stay of the prednisone for as long as possible.

Dee Dee

Lwinning:

Wow, you don't even take Plaquenil? That is a pretty important drug for Lupus and might even help with your fatigue. It prevents so many complications and I would still take it even if I were asymptomatic. I've had no side effects from it.

I have never ever heard of being able to detect inflammation from a blood smear. I tried to look it up and came up with nothing. Hmmmm.

I don't think it's unusual to have a positive RF with Lupus. Many of the inflammatory autoimmune disorders can and do overlap.

After you got the joint swelling in your hands to go down, did your dexterity improve? I'm hoping that happens to me, but have no idea what will happen. It's been over a year and I can't get it down. I've tried various things including Methotrexate, but no luck yet.

Sandi,

I took Plaquenil back when I was first diagnosed with Lupus. At the time, they were desperately trying to get the swelling down in my hands, so I was also taking numerous NSAIDS and other drugs, including Prednisone. I had major stomach upset back then and it was thought that the cause was either the NSAIDS or Prednisone. Some years later (long after my hospitalization for TTP), my rheumatologist took me off all my medications since my husband and I were planning to start a family.

Last year, my rheumatologist suggested trying Plaquenil again to see if it would help with the fatigue. I tried taking it for a month and my stomach just did not adjust. My rheumatologist does not push Plaquenil on me - says it can help shorten a flare, but will not prevent one. To him, it isn't worth the stomach upset since there is no guarantee it will help, especially since I had been taking Plaquenil when I developed TTP.

To answer your question - yes, once the joint swelling went down, the pain was gone and my dexterity returned completely. I tried so many different medications to get the swelling down, but ultimately, the only thing that worked was Prednisone. It has been both a blessing and a curse for me over the years.

Did you try taking anything to help with the stomach issues? There are so many articles that state that Plaquenil does help to prevent flares and other issues. Of course things can still develop while on Plaquenil, but it is used as a preventative in many cases. It can even prolong a diagnosis for those who seem headed in the Lupus direction. Ha, I sound like a drug pusher, sorry. I'm just a huge believer in Plaquenil.

I take many meds that cause stomach issues, but can pretty much control it. The drugs are a blessing in disguise. I've been on Prednisone (15 mg's) for 8 years and it hasn't helped the swollen joints. A higher dose might be helpful, but since I've been on it for so long and keep having stress fractures, they are trying steroid sparing drugs instead. They are all evil. Although things are not going all that well, I wonder if things would be worse if I were not on the meds I am taking.

I'm glad to hear that your hands became normal again. I was losing hope that would happen since it can cause irreversible damage. I hope it's not too late.