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Other Platelet Disorders

TOPIC: Here we go again

Here we go again 6 years 4 months ago #41280

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Good luck with the surgery. Check in as soon as you can so we know you're okay.

I'll have to look into the steroid/lesion thing. I've been on steroids much longer than that, never heard of that one.
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Here we go again 6 years 4 months ago #41310

  • Melinda
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Good luck with your surgery Dan - will be thinking of you.

I've never heard of steroid induced lesions either - I know someone who has been on different doses of prednisone, non-stop, since 1989 due to an auto-immune disorder and it's side effects - very very thin skin, cataracts, arthritis, now osteoporosis but no lesions.

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Here we go again 6 years 4 months ago #41313

  • eklein
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My dad may have died from steroid induced lesions, it's not certain. He bled out from ulcers in his digestive track, he was taking steroids and some other potentially corrosive meds for multiple myeloma. He ignored early symptoms (or his doctor did) of intestinal bleeding and then it was too late. My understanding is they can be corrosive like nsaids - ??
Erica
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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

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Here we go again 6 years 4 months ago #41317

  • Sandi
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I have heard of steroid induced ulcers from Prednisone, but are ulcers the same as lesions? Huh, I don't know but that would make sense.

What were your Dad's symptoms, Erica? I'm always afraid that is going to happen to me with all of the steroids and NSAID's I take.

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Here we go again 6 years 4 months ago #41322

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I don't think my dad's symptoms are comparable since he was taking some other meds and was also not a good reporter of symptoms and also not that self aware of symptoms. But he noticed some blood in stool. He was having some weird passing 'spells' that we didn't know what was going on. It's hard to know what was related, he was also constipated and not taking in the fluids required for his medications.

Watching for blood and pain would make sense.
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

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Here we go again 6 years 4 months ago #41327

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I think I asked you that before. Memory is shot. :unsure:

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Here we go again 6 years 4 months ago #41412

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Dan? How did the surgery go?
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Here we go again 6 years 4 months ago #41432

  • DanC33
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Hi everyone,
The surgery was a complete success! I am in a lot of pain but that will subside in a few days. I also saw my Rheumatologist and he said that they were precancerous polyps not lesions. But he said that lesions can be caused by long term steroid use(like 10+ years at very high doses). And he also put me on a bone building drug ALENDRONATE 70MG TABLETS(never heard of) because he's afraid that I am starting to have bone mass loss because of long term steroid use.

Thanks everyone for the good thoughts!! :laugh:

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Here we go again 6 years 4 months ago #41437

  • Sandi
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I'm glad that all went well! I hope you continue to feel better!
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Here we go again 6 years 4 months ago #41445

  • Melinda
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So happy all went well Dan! Alendronate is Fosamax if I remember right - and you have to take it as directed.

Hope to keep hearing good things from you!
Take care!

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Here we go again 6 years 3 months ago #41460

  • Ann
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Any tissue abnormality is called a lesion until they know what it is and then they call it something more definite.. like cancer, ulcer, fatty deposit.. whatever. It's just a catch-all term.
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Here we go again 6 years 3 months ago #41590

  • DanC33
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Well it's been 2 weeks since the surgery and doing fine with that. But I am still having issues with the change in the weather here. It has become very hot already and I for some reason am not adapting to it very well. But the worst is the fatigue, the kind where you move from your bed to your couch and that's about it.

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Here we go again 6 years 3 months ago #41592

  • Sandi
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I have days like that too. I have found some hobbies to do when I feel like that...learning Italian and painting on canvas. I refuse to give in and lay around which will only make muscles weaker. I don't watch TV at all during the day. Brain fog is making it difficult to learn the language and losing use of my hands makes it hard to paint, but I need to feel productive.

It's weird how much the weather plays a part in daily activities. It actually dictates how my day will go and what I will be able to do. I'm glad you are doing better. I hope you have air conditioning!

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Here we go again 6 years 3 months ago #41622

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I try to keep busy and like you I try not to watch too much TV. But for some reason I can't keep out of the ER. I went back in yesterday with a severe UTI because of the catheter I had in for a week. So for the next week they don't want me doing much. And yes I have a great air conditioner.

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Here we go again 6 years 3 months ago #41626

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Those darn catheters always seem to lead to a UTI. Hopefully it gets cleared up soon. People with Lupus get UTI's frequently anyway. Cranberry caplets and juice can help....I have those around all the time. I hope this is the end of the bad things for you! Time for a break!
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Here we go again 6 years 3 months ago #41636

  • Melinda
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Dan catheters are no fun to start with and then add the "gift" of a UTI, that is a bummer! Happened to me too the one [and hopefully only] time I had to have one. I'm assuming you were put on antibiotic? Hope it has kicked in and you are feeling better!

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Here we go again 6 years 3 months ago #41641

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They put me on doxycycline and bed rest. So any ideas as to why people with Lupus get UTI's so easily?

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Here we go again 6 years 3 months ago #41644

  • Sandi
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Most likely because Lupus patients are more susceptible to infections due to inability to fight infections and because of immunosuppressants.

Having lupus also increase your risk of:

Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.


www.mayoclinic.org/diseases-conditions/lupus/basics/complications/CON-20019676

I usually get at least 2 or 3 UTI's a year. I also frequently have the symptoms of a UTI, but don't actually have an infection. Lupus can cause recurrent cystitis or bladder inflammation which can have the exact same symptoms of a UTI. I treat it with OTC's - Uricalm and Azo, and cranberry juice. I can usually tell the difference by fever and chills which mostly occurs with a UTI and not usually with cystitis. I give it a few days and if it doesn't clear up, I get a UA.


A common complication among lupus patients, especially women, involves the development of bladder infections or cystitis. While many women suffer from recurrent cystitis, as part of their lupus complication, there is also risk for developing cystitis in response to a recovery from surgery. When gastrointestinal infection or surgery takes place, cystitis is a relatively common occurrence among lupus patients.

Interstitial cystitis (IC) is an inflammation of the bladder which can occur by itself or in conjunction with other autoimmune diseases, such as fibromyalgia,, scleroderma, lupus, or Sjögren's Syndrome. (Also see: Autoimmune Diseases)
Although interstitial cystitis can occur with scleroderma, it is not part of the diagnostic criteria for any form of scleroderma, and many IC patients never go on to develop scleroderma or other autoimmune diseases.
Symptoms of interstitial cystitis (IC) include bladder spasms (which can be very painful), bladder frequency, bladder pain, low bladder capacity, and incontinence. Very often, Interstitial Cystitis patients are wrongly treated for what their doctors assume must be bladder infections, urethritis, or "emotional" problems.
Repeated symptoms of urinary tract infections which do not show actual infection on testing is a hallmark symptom of interstitial cystitis. The frequency and urgency which IC can cause is not the same as that brought on by drinking a lot of fluids, or from the use of diuretics, although the symptoms do worsen for some people with coffee consumption, etc.

www.sclero.org/medical/symptoms/associated/interstitial-cystitis/a-to-z.html

voices.yahoo.com/recurrent-cystitis-risks-lupus-patients-695612.html?cat=70
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Here we go again 6 years 3 months ago #41650

  • Melinda
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That seems to be the drug of choice for me Dan since I'm allergic to everything else. You do know you should not lie down for 30min [or is it an hour?] - that surprised me when I first read that in the instructions.

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Here we go again 6 years 3 months ago #41658

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Great info Sandi, I will print it up and give it to my doctor. While I did know that we are more prone to infections I never thought of UTI's as they are more prevalent in women the ER doc even said that men rarely ever have UTI's so he was calling my Rheumatologist to get treatment ideas. But then again so is Lupus, so I guess it still applies to me.

Melinda, I too am allergic to a lot of drugs so they have to be very careful with me.

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Here we go again 6 years 3 months ago #41661

  • Sandi
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Dan:

UTI's might be more common in women, but catheters frequently cause UTI's and can happen to anyone. Taking immunosuppressants sure raises that risk.

I have problems with a lot of antibiotics too, especially Quonolones and Sulfa.

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Here we go again 6 years 3 months ago #41675

  • DanC33
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Well my Doc decided to try another antibiotic cephalexin. He said that I wasn't responding to the doxycycline. I can't do either of those too.

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Here we go again 6 years 3 months ago #41677

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Still having symptoms?

When my Mom had hip surgery in January, she was catheterized. She got a UTI and it also took her two antibiotics to beat it. It took a few weeks. Since she couldn't get to the bathroom fast enough, she was peeing herself all the time. She'd call the nurses in Rehab to help but they didn't show until it was too late.

Hang in there, it will get better! I use that antibiotic all the time. It's one that I can take.
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Here we go again 6 years 3 months ago #41679

  • Vdeutsch85
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I'm sorry I haven't been on here in a while. I hope you feel better. I have been on that antibiotic twice for a kidney infection and a uti. It worked pretty quickly. Hope it works quickly for you as well and you can heal .
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Here we go again 6 years 2 months ago #42230

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Hi everyone! Back from vacation.

Got back from vacation and still dealing with the UTI. :angry: I ended up in 2 different ERs one in OK and one in MO. Sandi you are right about ER docs not knowing how to handle lupus patients.(the one in OK was good but the one in MO was an orifice 3 feet below the neck)
But it's a good thing I went in because they ran a cbc and found my platelets were dropping fast. They said it could be that my Rheumatologist was trying to reduce the amount of Medrol I take. I was trying to going down from 12mg to about 8mg but everytime I try to do that my platelets drop like a rock. So I went back to 12mg. My Rheumatologist is very concerned about the long term affects of being on that high of a dose. What long term stuff will I get to deal with since I can't seem to lower the dose?

I also discovered that Lupus and high humidity don't mix. My knees, feet and hands were inflamed the whole time I was gone. So I lived on Norco, Tramadol and Dilaudid the whole time. But I forced myself to do things anyway. I even caught 19 crappie fish in one day!!

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Here we go again 6 years 2 months ago #42243

  • Sandi
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High doses of Medrol can cause long term problems such as arthritis, cataracts, glaucoma, diabetes, bone loss, thin skin, etc. It's such a catch 22. You need the drug for ITP/Lupus stability, but you end up with more problems. I did okay for years with no side effects but once they started, won't stop.

I'm on my third stress foot fracture now in two years and I'm really sick of it. It's just going to keep happening and they never fully heal. My Vitamin D is low again; it just keeps dropping as soon as I stop taking the script D. I'm sure that isn't helping matters. I'm also just getting over 6 weeks of coughing non-stop....two antibiotics and pneumonia from a simple cold. Just can't kick anything. My Rheumatologist was concerned with my Prednisone use too - talked me into going from 15 mg's a day to 10 mg's. I did manage to do that and she is okay with this dose since she realizes I cannot go any lower. Keeps pushing CellCept but I'm always getting sick so I don't see how I can add another immunosuppressant.

No, Lupus and humidity are not a good combo; neither is Lupus and cold weather, or rain! Ha, good days where the weather is perfect are hard to come by. I'm glad you had a good vacation though in spite of it all. I live on Norco and other meds all the time too. Just part of life now. I screwed up with Savella and didn't get the refill right away, so have to start all over again with the titration pack. Muscles have been very painful lately, but I'm doing it to myself. I'm hooked on cucumber/tomato salad and the nightshade is killing me with inflammation. Must stop! Tortured by tomatoes!

Where did you go for vacation?

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Here we go again 6 years 2 months ago #42247

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We went to Oklahoma, Arkansas and Missouri. The temps were in the mid 90's with 85-95% humidity. We also had an F3 tornado :woohoo: My wife and I are from that part of the country and went to see family that we haven't seen in a while.
We also went to look into moving to the area but I don't think I can handle it. My lupus was in one constant flare that I am still dealing with. The malar rashes on my face are so bad that even the steroid cream isn't working. But I did find some spf 100 sunblock that helped a lot! I also ended up with a couple of tick bites that my doctor wants to look at on Monday.(along with the UTI that won't go away) The ER doc in MO wants me to get into a Urologist and a Nephrologist asap because he thinks that I might be showing early signs of prostate cancer or kidney issues because my blood work was so off that he couldn't make heads or tails of it.(he was also the one that was not so sure how to deal with a Lupus patient.)

The lab showed my WBC was high normal but my RBC was very low. The platelet count was ok(145) but the MPV was very low. Neutrophils was very high and Lymphocytes was very low. I tried to explain to the doc that lupus patients blood work will do this because of the drugs we take but he wouldn't listen. My Creatinine and Bun were a little high as well.

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Here we go again 6 years 2 months ago #42252

  • Sandi
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Yeah, the drugs can do that for sure. Have you ever had the Coombs test? Best to get it all checked out since things can go bad quickly with Lupus. You just never know. Do you have proteinuria?
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Here we go again 6 years 2 months ago #42260

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The ER doc mentioned having a Coombs test done along with a PSA and a serum tumor marker test. As far as proteinuria my last 2 24hr urine tests my protein levels were high. They wasn't too worried at the time but the ER doc said that because of the constant UTI and the presence of an enlarged prostate, he said it would be wise.

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Here we go again 6 years 2 months ago #42264

  • Sandi
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As much as I do not put much stock in an ER doc's opinion, I think this one may be right. Sure couldn't hurt!
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