Lupus right after ITP? Or Rheumatoid arthritis?

Hi there, just seeking some advice or thoughts. I have posted my ITP journey before but in essence had splenectomy at the end of August, platelets stable and great. Weaned slowly off the prednisone and finished tapering end of September. Since weaning I have found horrible fatigue, some days better then other but many days just "hits" and can't do anything else! Also a lot of joint pain, started evening before stopping the prednisone but was in hips then, shifted to my shoulders after a week or two and hips better but occasionally sore, and knees. Well about 4 weeks ago now started in my hands, stiffness and pain that wakes me at night and can barely use my hands in the morning until after I "wake them up" painfully but slowly. So saw my GP and he wanted to check out rheumatoid arthritis, did bloodworm. Saw my hematologist today and My RF is negative but the ESR and c-reactive protein are elevated. She said she wondered about less about RA and more about lupus and an "autoimmune storm" in my body. She said it was unusual but possible to still be after effects of prednisone but definitely possible.

Does anyone here have a history of getting diagnosis of lupus right after ITP or so close together? Was your presentation like this at all?

Also, I did have an ANA test done in May which must have been negative as they had determined it was ITP and nothing else (I know I should rememberit better but there were so many blood tests then- only could pay attention to so many)....

Hi. My first thought as I was reading this was to chalk it up to the Prednisone taper. Joint pain is very common during and after the taper and can last several weeks to months.

However, as I kept reading, a few things struck me. First, I will say that autoimmune disorders can cluster, meaning that it is possible to develop more than one. ITP can be a symptom of Lupus, and they can each occur at any time, weeks, months or years apart. ITP is actually one of the criteria of a Lupus diagnosis. For that reason, I wouldn't quite call it an autoimmune storm. The two can go together quite often. I was diagnosed with ITP in 1998 and Lupus in 2006. That's fairly far apart, but many have the two diagnoses closer together. Prednisone can also mask the symptoms of Lupus and when going off of it, you can begin to feel the joint and muscle pain.

When I began to suspect that I had Lupus, my symptoms were like yours. I'd already had pretty bad muscle stiffness, but when the joint pain began, it started in my hips which lasted two weeks, moved to shoulders for a few weeks, went to elbows, etc. It moved around which is not likely with a Prednisone taper. Lupus can sometimes take a long time to develop enough to diagnosed. I had symptoms for a good year and a half before the specific labs began to be elevated. For some people, it can be much longer.

There is a difference between Prednisone taper pain and Lupus joint pain. When I had it in my elbows, I could barely straighten my arms out to push open a door. When it was in my hips, I couldn't sleep on my side. It does wake you up at night. Prednisone joint pain is bad when you first stand up and start walking and things like that, but it's not nearly as severe as Lupus joint pain.

You will need to see a Rheumatologist and have more tests to find out what is going on. There are more specific tests that will be helpful. Did you just have another ANA done? If so, do you know what the titer was? Do you know what other tests were done? It is helpful to always get copies of labs. I have a huge folder full of them and refer to them often.

In the meantime, try not to worry. I know that's easy to say, but you've had a lot going on lately so there is the possibility that this is due to the taper and the stress on your body from the surgery.

These are the criteria that must be met for a diagnosis. Usually if you have four of the eleven, it's good enough for a diagnosis. You do have to have either of these two antibodies: dsDNA or Anti-Sm, among other things.

lupus.webmd.com/tc/lupus-criteria-for-diagnosis-topic-overview

Please let me know if you have any other questions.

Thanks Sandi! That link is really helpful and your thoughts are as well! I did wonder if perhaps the symptoms were masked with the plrednisone because even on it I had quite a bit of muscle pain which I figured was just to be expected but perhaps not with lots of prednisone on board! Hearing your story helps me know to keep following up then on it. The hematologist suggested I wait 3-4 mmore weeks and then go in to my GP to ask for a referral to a rheumatologist which in many ways makes sense- she was thinking then would be cleared up if prednisone related but I think I may go sooner since referrals here (Canada) often take a loooooooooong time! Especially rheumatologists I hear!

I didn't have another ANA this time. ESR, protein c, westgren factor Rheumatoid factor. I have a folder for all my itp papers.and think.perhaps shall start a new one!

Thanks for your time and help!

Good idea to get a jump start on it. If it turns out that you don't need it, you can always cancel. Keep me posted!

Well two weeks ago now saw the rheumatologist as he had a cancellation right after he got my referral! Lucky! So... He says my ANA is negative for lupus but thinks the pattern looks to be progressing to lupus potentially and said blood can take time from onset and very difficult to diagnose quickly. He noticed while reviewing my file that my liver levels are extremely elevated do sent me for a swack more blood and an ultrasound of abdomen. Thinks I may have primary biliary cirrhosis (have a family history). Saw the GP to get results instead of waiting and waiting and he said looks like that I have "something like the PBC" so then I think... "Okay well at least not lupus" before he informs me "oh and the rheumatologist think lupus or another connective tiisue disorder as well so he wants to keep seeing you"!! Lucky me!!!

Anyone else with ITP or lupus also have primary biliary cirrhosis? I dont know for sure yet that I have it as need liver biopsy and specialist to confirm but trying to inform myself as much as possible! Also, incidentally on my ultrasound they found a large kidney stone and a 3 mm gallbladder polyp so anyone has those? I know the kidney stone common but the gallbladder polyp a bit worrisome to me so wondering if anyone else had that and has any experiences to share. Currently waiting for a specialty appt to get more diagnostics and info in that!

Thanks for any advice or thoughts on any of these!!!

Oh my - sorry to hear all of that! I can't help you with the other stuff, I only know about Lupus at the moment.

My impression: I like your Rheumatologist. Too often, I hear stories of people who get blown off because they have nothing in their blood work to indicate Lupus. They tell the patient that they are fine and that they don't belong there. That leaves a person spinning in circles because they have no where to go and they think they are crazy. When I hear about a Rheumatologist who admits that Lupus takes time and they see the red flags in a person, I think that doctor is knowledgeable and worth keeping.

The very first Rheumatologist that I saw blew me off. He didn't even do any blood work. I went into his office with an ANA of 1:320 and a history of ITP, plus physical symptoms. He told me that I looked fine and didn't need to be there. Later that day, I saw my Hemo and told him what happened. He referred me to another Rheumatologist and I went to see him. He did additional blood work and although I didn't meet the criteria at that time, he continued to monitor me and help me manage the symptoms. A year and a half later, I did meet the criteria. I loved that guy, but he moved across the country and I had to find another one.

Anyway, my advice would be to see him periodically and let him monitor you. You may never fully develop Lupus or it could take 10 years. In the meantime, he is available to you if things change or get worse.

You have a lot to deal with at the moment, but it's better to know so you can treat it all. I hope none of it is too difficult...please let me know how it goes.

Have you had your adrenaline gland tested to make sure it's working ok after the pred?

Hi MommaBee,
Watching your story with interest. Sure is great to have someone like Sandi with advice.
I hope you find some answers soon & are feeling better.
mj

Thanks ladies. Sandi I agree! I was thinking how fortunate I am to have referred to him in particular! He seems great and the fact he is looking outside just rheum stuff is also pretty amazing and helpful in this case! My GP says I will get another call to see the rheum in the near future. Just trying to patiently wait now for all these specialists and diagnostics the GP said to expect! Glad to know what to e pecf but sure wish I knew when to expect it!

I did not have my cortisol checked after prednisone. That was actually what I thought was going on that led to me going to the gp to begin with but he felt he would start with "more common" causes of fatigue and pain and said if all this was negative wouldlook jinto it. Then since inflammatory markers were elevated he says no need, especially when combined with liver which can also cause fatigue. Given ALL the other blood work I have had not sure why not just check to be sure but he doesn't feel necessary...

Thanks for your responses... And Sandi yes for sure better to know! Trying to be patient until I know more! Luckily lots to keep busy with to distract until I know more! Thanks!