Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Other Platelet Disorders
  • Page:
  • 1
  • 2

TOPIC: oh crap

oh crap 5 years 7 months ago #46171

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Starting last week I started having signs of a lupus flare like I haven't seen in almost ten years when I was initially diagnosed with ITP and platelets at 8k. I'm pretty sure my platelets haven't tanked like that (I'm one who can usually tell) but I'm waking up every morning since last week in all sorts of pain that moves around. For example, for the last two days I've had a spot of burning searing neuropathy on one foot and my right index finger knuckle is red and swollen and hot. My knees have been stiff and painful. The shoulder I was sleeping on kills me. It's worst in the morning (or wee hours too if I wake up at 3am or so) then gets much better as the day wears on. Normally for my whole 35 years of having-lupus life I have no pain and none of these problems. I'm on the road for work right now and it isn't an ER situation but I'm guessing I am running a very low grade temperature, maybe 100 or at most 100.5. It was only during the few months preceding my diagnosis that I had symptoms like this. And even then I wasn't having this much pain which to be reasonable about it might be a 4-5 out of 10. Maybe a 6.5 when I wake up in the morning.

Seeing GP next week and rheum the following week.

Yes lots of stress, I'm starting a new job in March. But I've had lots and lots of stress over the last years and felt much worse stress symptoms and never had this kind of a flare. Like I said, oh crap.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46174

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
I'm sorry to hear that, Erica! I didn't like that title from the second I saw it.

Can you call your Rheumatologist and ask for some meds? Maybe bump up the Plaquenil and get some Prednisone (short-term) until you can get to the office? That is the only way to get relief....or you could throw in some Advil or Naproxen and see if that helps. Naproxen makes a difference for me; I didn't realize how much until I stopped taking it for a few weeks. You only take 200 mg's of Plaquenil, right?

Maybe you have a virus that is triggering a flare, hard to say. Hopefully you can get it under control soon, but I must say you've been very lucky all these years (other than the hives).

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46175

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Thanks Sandi. You are so right that I've been lucky. I did plan to double my plaquenil and somehow only brought 4 pills on this 5 day trip DOH. But I'll double as soon as I'm home Friday night, I have plenty.

I can't take advil or naproxen, have allergies, like coughs. But pain is managed ok with tylenol except for those first hours in the morning when I hobble and make bad faces, so I can deal at this point. I was thinking of asking my dr. for a dosepak if I'm not a lot better by then.

Mostly I'm hoping it will blow over, yes some underlying virus, something like that.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46177

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Tylenol won't help inflammation though and you don't want that to get worse. That can sometimes spiral out of control.

Hot showers can help in the mornings (if you aren't already doing that). I can't do anything until I take my handful of pills and shower.

I hope you feel better soon and don't wait too long to call the doctor. You tend to do that, ya know!

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46196

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
So what is the deal with the lupus fairy visiting overnight with new pain? Is it because of laying still? Because I sit still a lot during the day but the pain gets less during the day. Or being upright helps?

It's weird, I don't have fatigue like when my platelets dropped.

GP Thursday, then rheum Wed the following week. Then I move to Alabama. I understand there is an excellent university medical center in Birmingham, seriously.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46199

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Ha, I know that fairy well! Laying still does make things worse, I usually wake up a few times a night due to burning hips or some other pain. Getting out of bed is horrendous. I think things get a bit better during the day because you are at least moving around and blood is circulating. If I sit too long though in one spot, I get so stiff I can barely move. Long car trips with a seat belt on are torture. Have you been doing your yoga?

Good luck with the doctors and the move. The warmer weather should help, winters are awful!

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46200

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
I know it's unusual but cold weather does not make things worse for me, I'm just cold and miserable like a regular person. Some of the pain is helped by cold, like when a joint is hot and bothered in my finger or toe. Heat doesn't really help or hurt.

I have new pains today but they are less bad, and last night I had the distinct feeling of being less inflamed. So I'm hoping, mending.

I've been doing ddpyoga (both a trademark plus it is pretty different from regular yoga) through this flare although more carefully and with more modifications. By doing the same workout I'm able to be more sure that my energy level is still good, and narrow down what hurts and what doesn't.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46266

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
How'd the appointment go?

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46332

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Rheum is next week but I had bloodwork at GP this week. Everything was normal except for TSH, they upped my thyroid med from 100 to 112.

So that happened once before and it strikes me as really weird. My thyroid was killed with radiation so why would my need for thyroid hormone ever vary?

But also I wondered if it could be a cause or a result of a lupus flare.

Also strange is that my sed rate and some other test of inflammation was also normal. Platelets were a lot lower than usual for me but in the normal range.

I'm still waking up with moving pains but they have not been as severe in the last few days and they subside more quickly. Could the inflammation markers be normal because the flare is subsiding?

Wondering what you think Sandi and other lupus-ians.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46336

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Erica:

I don't have an exact explanation, but thyroid meds do sometimes need adjusted in people with no thyroid. My daughter had hers surgically removed and I have a friend who had hers removed due to cancer, and both of them have needed Synthroid adjustments a few times over the years. Sometimes there is a bit of thyroid tissue left and certain factors can affect it.

Here are some reasons why levels can change:

www.thyroid-info.com/articles/tsh-fluctuating.htm


As for inflammation, I have also had periods of worsening pain and inflammation levels tested normal. Kim and I talk about that all the time. When that happens, the doctors generally do not believe what the patient is telling them. It's very frustrating because they won't treat it. I have noticed a few things that make pain worse: Nightshades - huge! If I drink tomato juice or eat spaghetti sauce, it lasts for days. Cold weather: huge! I know you said it doesn't affect you, but maybe it's starting to. Have you added anything to your diet lately? Sometimes food affects people with Lupus in ways they couldn't imagine. Things that can help: Tumeric and coconut juice/water.

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46337

  • milly
  • Offline
  • Posts: 600
  • Thank you received: 51
Erica, not sure if this helps but I had my thyroid removed about 5 years ago, my thyroid meds are constantly adjusted anywhere from 100mg to 150mg, I don't understand why this needs to happen either but I do know that the body aches and pains are really bad when they need adjusting. I don't have lupus just no thyroid. I hope you feel better soon.
There is no practice run in life.

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46341

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
OK thanks Milly and Sandi. This is just the second time I've needed a dosage tweak since I had the thyroid ablation about 7 years ago. I wonder if the thyroid imbalance could have triggered the flare, or was it possibly caused by the flare. I don't have other symptoms like fatigue or weight change. Just the lupus type arthritis and muscle pain and neuropathy.

Sandi it seems weird to me too that cold doesn't bother me, I mean it really sucks that it is like zero degrees here but going out in it only makes me as miserable as the average person, it does not affect the pain. Hot showers feel good but don't seem to make a difference in pain either. Meanwhile the pain is staying manageable and is less bad than two weeks ago. It's more the uncertainty of what will happen next. If it stays like this I could manage my life and new job by just getting up an hour earlier in the morning.

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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46347

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Hopefully, you won't have to learn to manage it. I started out that way, getting up an hour earlier. Then it was two hours, now it's almost three. I get up at 7:30 every day so I can get showered at 10:00. I'm done by 11:00 then can start my day.

Hard to say what is triggering what. That's what sucks about multiple disorders and I have the same problem. I never know what is causing anything and don't even know when I am sick half of the time.

See what the Rheumatologist says and give yourself a few weeks on the new Synthroid dose. Bad time to have all of this going on in the middle of moving and a new job!

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46349

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Yes bad time. You mentioned about having a hard time spending time in the car. Well we are driving 1100 miles starting Feb 26, in two days.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46357

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Yikes! I drove straight through from PA to Texas in 1982. Had no problems then. I sure couldn't do it now!

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46475

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
I made my way to the rheumatologist this morning in sub zero temperature by bus for a 7:20am appointment so I guess my stamina is still decent and the cold does not make my pain worse. Mostly just a painful shoulder today so I got lucky there.

He ran a few other tests and I had him repeat the platelet count although I still feel fine energy-wise so pretty sure platelets are fine.

He gave me a new script for pred in case I need it. Said he was sorry I was having this new problem, and that it could get better or not. I knew that already, it's not like there is a cure, and at this point my symptoms are such that I can live with them without resorting to scarier treatments and meds. He gave me a list of rheumatologists in Birmingham.

I'll watch for the test results.

Sandi we are planning to do the drive in two days, about 550 miles per day. I'm already dreading it even if I was feeling totally fine. But I think that is a reasonable amount to attempt. If weather looks bad we could leave a day early, and if we are delayed we could arrive a day or two late. So there is some wiggle room. I used to drive Pittsburgh to NJ a few times a year, 350 miles in 6+ hours and it seemed like a long drive.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46476

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
It gets harder as you get older too, that's for sure. Every year for vacation, I used to work a full day, get home and pack for five people, we'd leave at midnight to drive to North Carolina, get there at 10 a.m., unpack, go grocery shopping, then go down to the beach. Now I have trouble just sitting in the car for more than an hour.

I hope your test results come out okay. A few days of Prednisone might be very helpful and could reduce the inflammation. When do you start your new job?

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46479

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
My first day is March 2.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46540

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
More test results. C4 complement low at 11 (15-40 range)
C3 complement low at 55 (80 - 150 range). Dr. says these are signs of lupus activity.
ANA weirdly came back negative after it has been positive in the past.
Other blood and urine markers normal or the same. Platelets holding steady 165.
Sandi, what do you know about the C3 and C4?

I'm continuing to wake up with pain, less severe than at first, and it is almost gone in a few hours.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46543

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Erica:

Low C3 and C4 were the first things ever found in my labs before I was diagnosed. This is a good explanation:

C3 and C4 are proteins produced by the immune system to fight infection. If your C3 and C4 levels are low then it means that the immune system is actively trying to kill something. In a healthy person this means that there’s an infection, but in someone with lupus the immune system is trying to kill cells in the body. This is obviously a bad thing, so doctors will try to calm down (by which I mean kill) the immune response by giving the patient steroids, methotrexate, and/or other immunosuppressants.

This is a prime reason why people with Lupus need a spleen. When someone has Lupus, their body kills cells often and those dead cells need to be filtered and cleared. When that doesn't happen, they accumulate in the blood and cause 'cell garbage' that exacerbates inflammation.

www.samvslupus.com/2011/03/lupus-tests-c3-and-c4.html

It's not surprising that your ANA is negative, that titer can change all the time. It's just a measurement of antibodies and those come and go. I've actually heard of doctors who reverse a Lupus diagnosis because the patient's ANA was negative some time after an initial positive. Ridiculous! I've looked at my labs over the years and the ANA titers change, the dsDNA titers change, etc.....if the titers can go up, they certainly can go down.

Have you taken any of the Prednisone?

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46545

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
No I haven't taken any of the prednisone. I would like to avoid it if possible. If things start getting worse I will take it. He suggested 10mg/day. I have 60 pills so I feel like that's a good safe cushion if I need it. I would prefer not to undertake an 1100 mile drive on prednisone if possible. What do you think? I can get up and manager ok and feel almost fine after an hour or two. The doctor left it as optional to take the med.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 7 months ago #46546

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Just got back dna antibody and it is 'still negative a good sign' says the doctor.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46549

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Erica:

It's a tough decision to make because on one hand, Prednisone is nasty but on the other hand, it is useful to stop the immune system from getting out of hand. Things can spiral and then it's harder to control. The fact that you seem to be feeling better is a good sign, so it could go either way.

10 mg's isn't that much, would you have side effects at that dose?

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46572

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
I actually feel pretty good when I take prednisone. It's when I stop taking it that I have a problem with painful withdrawal and moods, and also the long term problems like bone loss, fatty knees and hips, etc. When I'm on prednisone I tend to have good energy, I can drink a little bit more with no ill effects, my appetite is good. It's like good speed to me. Of course when I'm on it at higher doses I've got a little issue with mood swings and rage and eating too much but 10 mg probably wouldn't do that.

This morning the bottom of my left foot was messed up (wtf, right, like what could be happening, it was like the sole and heel of my foot was two sizes too small and painful) and my left elbow muscles were painful. It's so weird. After an hour and a half I was feeling almost normal.

But like I said it is milder than when this started at the end of January. I could start the pred at any point and I think I'll hold off for now.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46573

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
My shoulder muscles had been the worst, the most painful, and they are not at all painful for the last few days. Neck is ok too.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46582

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Couldn't have come at a worse time, gf. Yep, coming off is the pits. Heck, maybe you should just go for it to get you through the move.

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46592

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
I'll take it if I need it but I'd rather not be on pred the first week of a new job!
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46594

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Hey at 10 mg's you'd get that burst of energy you were talking about!

Ok. I'm a pill-pusher.

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46621

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
I woke up this morning without new pain, first time since the last week of January. Hopeful.
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

Please Log in or Create an account to join the conversation.

oh crap 5 years 6 months ago #46624

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Good news! I'm happy for you.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo