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TOPIC: Lupus.... maybe

Lupus.... maybe 5 years 4 months ago #39430

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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I've been in the watch mode for ITP for almost 1 year with counts between 50k - 70k and I thought all my pains were just because of the long term prior prednisone use. Last week got very ill (I thought virus) and ended up at the doctors :( well the follow up appointment yesterday was a bit of a unexpected event. My primary care physician and I converse well together and he allows me a big part of the deciding how to treat. Well, when I told him about being sick (I had to see the NP instead of him on the first visit) he looked puzzled. After reading all the labs the NP ran he wanted to do a more thorough exam and mentioned "Discoid Lupus" and "Lupus" in general.

My symptom's were a progressively getting worse lower back pain (I did not relate it to inflammation until today 2nd day of prednisone and I feel great - must get house clean before this wears off :laugh: ), pain on my left side where my Spleen is :unsure: ,leg pain, my hands did a complete sluff in two days(I have pustule psoriasis on my hands) and he noticed discoloration of my skin on upper arms.

Treatment - two week Prednisone 20mg 7 days 10mg 7 days and stop (in an attempt to get my immune system to settle down) and then see him one week later. He spoke of Plaquenil - I can't take (took in 2009 and get severe vertigo from it) and Methotrexate need to learn a lot more about this one before I will take it!

So, with all this running thru my head I have some questions -

1) What would happen if I don't treat? Is that even an option?
2) Methotrexate - side effects (I have read them but would like to hear from those who have taken it as well)?
3) I know I don't want to take Prednisone - but would take a low dose say 5mg daily stave off the pain and inflammation? Is it worth it?
4)What test should I be asking for? Will the answers change anything about how to treat?
5) What else might it be? Dr. said my immune system was "Hot" and we need to figure out why/what is causing it.

So much to consider - my mind says I don't have time for this - I have a life to live darn it :angry: but I know that is not the right way to treat this (look how long I ignored the pain in my back and that got me nowhere but sick :sick:

Enough blubbering - any thoughts would be greatly appreciated!

Cindy Ann

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Lupus.... maybe 5 years 4 months ago #39431

  • Sandi
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Cindy:

Is this your Primary Care Physician? It seems like he might be jumping the gun a bit.

Lupus can be difficult to diagnose, and it takes some specific lab work to diagnose it, along with symptoms. It's not a good idea to just start treating it or handing out meds until you know what you are dealing with. Methotrexate is a very harsh medication, I've used it, and the side effects can be nasty. It's not even a first line treatment. I would not consider it until I had a solid diagnosis and severe enough symptoms to warrant it. That should be decided by a Rheumatologist.

Your symptoms could be Lupus-related, but do not seem like the typical symptoms that most people have. Back pain can be caused by many things and is not really a common Lupus symptom. It can take weeks, months or years to be diagnosed because it can develop slowly. I don't know what labs you've had or what they revealed, but you'd need an ANA, dsDNA, Anti-Sm, SED rate, C3 and C4, etc.....Also, being on Prednisone while having the tests done can alter the results, so you should be off if it.

Personally, I wouldn't use a PCP for an autoimmune problem and it's odd that he'd consider taking it on. My sister once had her PCP diagnose her with probable Lupus and all she had was a slightly positive ANA and a red rash on her nose. She was referred to a Rheumatologist and she did not (still does not) have Lupus.

You could be on your way to a diagnosis, but everything you've been told seems a bit premature. Discoid Lupus is diagnosed with a skin biopsy and is totally different than Systemic Lupus.

Those are my thoughts since you asked.
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Lupus.... maybe 5 years 4 months ago #39432

  • CindyAnn
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Thank you Sandi - VERY MUCH

I value you expertise greatly and I agree - way too early for diagnosis - just was caught off guard with the subject.

I believe and hope my PCP would refer me to a Rheumatologist (he has run blood test three times over the last six years for RA and they have all come back negative). I have had joint pain in my hands and hips since taking Prednisone (hence why I thought it was all prednisone side effects related).
I read a lot today on Lupus and I don't have most of the symptoms - just a lot of joint and lower back pain (and ITP of course). My immune system is going berserk - just need to settle it down.

Again - THANK YOU

Cindy Ann

Cindy Ann

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Lupus.... maybe 5 years 4 months ago #39433

  • Sandi
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Cindy:

Have you had an x-ray or MRI on your back? I'd start there if you haven't already.

I had herniated disks in my neck for years that were very painful. Prednisone also helped that. Herniations and other spinal problems can cause inflammation because they can irritate and inflame muscles, nerves and bones, so anti-inflammatories do help and are one way those things can be managed. I wouldn't assume it's autoimmune because steroids helped.

All of your symptoms could be different, unrelated things going on and I'd surely want them investigated before hopping on Methotrexate! That drug has caused permanent lung damage for me and I had no benefit from it. The side effects were not pleasant (very sudden diarrhea while at work). It took months of a Lupus flare before my Rheumatologist and I decided to try it and I'd tried a few other things first. There should be a very good reason to use it such as damage to the body from Lupus or another autoimmune disorder. And again, I would not trust a PCP to prescribe or monitor a patient on Methotrexate. Heck when you look it up, some sites list DEATH as the first side effect. It's nothing to mess with.

For what it's worth, I think you should see a Rheumatologist and a Dermatologist and skip seeing the PCP for these things. Specialists are very common these days and they are there for a reason. No disrespect to your PCP, but the things he said made me say, "Whaaaaaaat?"

One long term side effect of Prednisone is arthritis. I don't know how old you are, but if you were on it long enough, you just might have plain old arthritis now. Just a thought. Also, do you get bone density tests regularly? That should be done yearly if a person is/has been on Prednisone.

Follow up on this, but from your description, I didn't really see the usual Lupus symptoms with which most people present. I'd be the first to tell you if I did. I've read so many stories over the years. Good luck with everything and please keep me posted!

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Lupus.... maybe 5 years 3 months ago #39507

  • DanC33
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Cindy, I agree with Sandi. There are 11 things that they look for when diagnosing SLE, to even be considered you must hit at least 4 of the 11 but most Rheumatologists want 5. I can't find my list but I'm sure Sandi knows them off the top of her head. And Methotrexate is very toxic I wouldn't even consider that yet.

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Lupus.... maybe 5 years 3 months ago #39509

  • Rob16
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1) Joint pain (lower back and leg?)... [maybe???]
2) Organ involvement (spleen?)... [maybe???]
3) skin rash
4) blood disorder (ITP)

So four possible, including two probable symptoms and two maybes, if I got it right.
Certainly worth following up with an antinuclear antibodies test, but not worth jumping to conclusions.
Besides, a diagnosis is not helpful unless there is a lupus related condition that is serious enough to be worth treating. For that, only time will tell.

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Lupus.... maybe 5 years 3 months ago #39516

  • Ann
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In reality I'd suggest that a good rheumatologist wouldn't simply count symptoms and declare that there aren't enough to give a diagnosis, but would look at the actual symptoms. For example if someone has a highly positive speckled ANA and a positive dsDNA with some joint pains I think they would give the diagnosis and treat.

Also some treatments are designed to prevent worse symptoms appearing so they will want to treat now and not wait until the disease gets worse. It would be worth checking out whether that is the case with certain symptoms of lupus.

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Lupus.... maybe 5 years 3 months ago #39519

  • Sandi
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Rob:

Her back and leg pain sounds like sciatica, not typical Lupus joint pain. As for organ involvement, it's usually the kidneys, heart, lungs....never heard of the spleen. The skin rash could be anything, and should be diagnosed with a biopsy. It's probably a totally unrelated thing. Yes, ITP is one of the criteria though.

They diagnose with blood work and symptoms. You do not want a diagnosis that isn't correct. It can really mess with the ability to get life insurance or disability insurance. Luckily, health insurance will now cover pre-existing conditions, although I was denied a temporary policy when we were changing over this month. Long story.

See Rheumatologist, yes, but don't jump into treatment with a GP who does not have a clue what he is doing.

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Lupus.... maybe 5 years 3 months ago #39529

  • CindyAnn
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Thank you ALL for your responses

I have looked at the labs from Jan 17th when I was sick and a couple things stick out
CBC – Platlets 55K and Lymphocytes, Absolute was low at .70k/uL (range 1.0-3.9)
CRP – C-Reactive Protein was high at 2.0 (range 0.0 to 1.5)
PCP also ran Amylase, Lipase and Metabolic Panel w/GFR all within range

I have had Bi-Lateral hip x-rays and a Bone Density test back in May 2013 and both came back “normal for my age” 48 

I am treating with Prednisone 7 days 20mg then 7 days 10mg and then stop and see PCP on Feb 7th to discuss way forward.

I know that I want to ask for a MRI of my spine, even with prednisone the back pain is lingering and now that I am on 10mg instead of 20mg it is getting worse again. Sandi had mentioned an ANA, dsDNA, Anti-Sm, SED rate, C3 and C4 - should I be asking for these test or only some in what kind of priority?

I don’t know what else is going on but definitely something is – I sure don’t want Lupus or any other autoimmune for that matter – but I do want to feel better with as little “treatment” as possible.

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Lupus.... maybe 5 years 3 months ago #39558

  • Sandi
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They will probably want to do the ANA first. They usually do and if that comes back okay, most doctors will not look further for autoimmune disorders. You might have to push any doctor that you do see to keep looking.

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Lupus.... maybe 5 years 3 months ago #39687

  • CindyAnn
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I had an appointment yesterday with my PCP and he wants to put me on Methotrexate and Prednisone :angry: neither of which I want to take so today I decided to find an Immunologist in my area and take a better look before taking the Methotrexate (I have it, but I won't start it till I am sure I have to!!!!)

The Prednisone did help at relieving the back and hip pain by about 75% so my PCP thinks it is inflammation and not muscular or disc related - we will see.....

the four days without Prednisone and the back and hip pain progressively got worse again :(

This is very frustrating

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Lupus.... maybe 5 years 3 months ago #39688

  • Sandi
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CindyAnn - Again, I strongly suggest that you see a Rheumatologist before using those meds. A Rheumatologist will not use Methotrexate to treat pain. It is a chemotherapy and should only be used in serious situations. There are other options. As for Prednisone, that is a much more benign treatment but does have nasty side effects (as you know). Methotrexate did nothing for pain for me and I went from the pills to injections. I was on it for about a year.

I also mentioned that I had disk problems, severe ones (spinal stenosis) and Prednisone did help. I got intramuscular steroid shots every four to six weeks for two years. Disc problems cause inflammation. He is very wrong about that.

www.webmd.com/back-pain/corticosteroids-for-a-herniated-disc

Your doctor needs to diagnose you properly before treating. He has no idea what is wrong with you at this point since he's done very little testing. To be honest, he scares me. I'm glad you are getting another opinion. You need a Rheumatologist and a Osteopathic Doctor.
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Lupus.... maybe 5 years 2 months ago #39980

  • CindyAnn
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I saw an Immunologist on the 20th and I will be seeing a Rheumatologist on March 11th with test results in hand.

the Immunologist did several test and two things stood out

ANA Screen, IFA came back Positive with a titer of 1:160
and
Antimyocardial Antibody screen came back - Myocardial AB, if Antimyocardial antibody - positive with a titer of 1:80 (sarcolemma pattern)

I also noticed that my MCHC on my CBC was low 31.8

So maybe we are getting somewhere? - All of the labs are being sent ahead to the Rheumatologist and we will take it from there.

The Immunologist mentioned Mixed Connective Tissue Disease possible - but he will leave it to the Rheumatologist.

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Lupus.... maybe 5 years 2 months ago #40008

  • Sandi
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Yes, that's a good start. What did he say about taking MTX?

Mixed Connective Tissue Disease is what they usually call it when they don't have a definitive diagnosis yet.

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Lupus.... maybe 5 years 2 months ago #40011

  • CindyAnn
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The Immunologist did not want me to take the MTX until we have a definitive diagnosis - so still not taking anything till I finish up with the Rheumatologist.

I have not got to talk to the Immunologist about the lab work yet, he was in conference all week last week - so I hope to hear his interpretation soon.

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Lupus.... maybe 5 years 2 months ago #40017

  • Sandi
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Please keep me updated!

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Lupus.... maybe 5 years 2 months ago #40201

  • CindyAnn
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Saw the Rheumatologist yesterday - I like him - very experienced and not in a hurry - lots of good questions.

More blood test and x-ray of my back. He does not think that I should be taking Methotrexate at all and maybe Enbrel if anything. He seems to be leaning towards Psoriatic Arthritis and Mixed Connective Tissue Disease but will wait for definitive diagnosis till all test are in. He also wants to be sure to discuss any medication with my hematologist first.

This is such a SLOWWWWW process, I am more of a lets get it done kind of person.

Cindy Ann

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Lupus.... maybe 5 years 2 months ago #40211

  • Sandi
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Cindy:

I'm glad he tested more and I'm glad you like him.

It can be a slow process. I wasn't diagnosed for a year and a half after symptoms began. My blood work wasn't definitive until then. Since Lupus has so many criteria, it took a while for me to meet enough to be diagnosed. I saw the results and slowly, more and more of them became elevated. It has taken many people even longer than that. Symptoms for many disorders can appear long before it shows up in blood work. I was always happy NOT to have a diagnosis, so I didn't care that it took so long. I preferred not having a label, even though I had symptoms.

Let me know when you get results. Good luck!

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Lupus.... maybe 4 years 8 months ago #43729

  • CindyAnn
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Hello all – I have not posted in a while due to long waits between appointments (Doctors are so slow to followup)
I did end up taking MTX for 8 weeks and by the end of the 8 weeks I was sick for three days after each pill and throwing up blood so I finally got my GP to stop pushing it. He gave me Tramadol for the pain and said I need to lose weight. (six years mostly on prednisone and you see if you don’t gain weight – I’m working on it!)
He also has a problem with "Partialist". I will be changing primary care physicians next month - I one more appointment scheduled by my insurance company - due to chronic illness (ya think :angry: )
As for the specialist I did see – the immunologist at least ran the blood test to get things rolling – he wants to treat me for allergies – but felt I was far beyond his knowledge and a Rheumatologist would be best.
So went to the Rheumatologist and told the whole store he ran additional test, an abdominal ultrasound and back x-ray. Finally 8 weeks later after waiting in his lobby for 2 hours (he was late) his only comment was – your platelets are low (45K at the time) and your getting old (I am only 49) it’s degenerative disc – I don’t need to see you again.
So now…….. I take Tramadol 50mg three times a day and am still searching for help – I found a chiropractor that has done some amazing things after only two appointments – he believes that fixing my spine will help with my platelets (as long as I can move without pain – I’ll be happy)
So for now – platelets 35K without treatment and working on the pain factor.

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Lupus.... maybe 4 years 8 months ago #43735

  • Sandi
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Oh my! So you ended up taking MTX for a disk problem after all? I had a feeling that was what it was. Cindy, there is something wrong with that GP and it makes me sick. I think my BP just went up to 180/100. A GP should not be prescribing MTX. He didn't even have a diagnosis for you!

Let me tell you something. I went to a chiropractor for six years for my neck problems that were actually degenerative disk problems. It worked well as long as I kept going. It relaxed the muscles. As soon as I stopped, the pain was back. I did finally stop for good because it wasn't helping long term. At the time, I had the ITP struggle going on and going to the chiropractor did not help counts one iota. I found other ways to manage the neck pain until I ended up with stenosis and needed surgery to remove the disk. That was two years ago. Some of the things I did that were better than the chiropractor: Massages, heat, ice, an acupunture mat, NSAID's, a TENS Unit, muscle relaxers, steroid shots in my neck every six weeks and a good mattress. You can try a pain management clinic or an osteo. They deal with the problem and don't just crack it.

Sorry for telling your story above. I just wanted to make a point about GP's. I could not and still can't believe what that guy did. And thanks for checking in - I was worried about you!

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Lupus.... maybe 4 years 8 months ago #43739

  • DanC33
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Hi CindyAnn, I'm glad to hear you don't have Lupus!! :cheer: Although ITP does have it's owns problems and challenges as do herniated discs.

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Lupus.... maybe 4 years 8 months ago #43747

  • Melinda
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Glad you don't have lupus!

Tramadol is now controlled - are you having any trouble getting it? I just partially tore/ruptured the FCR tendon in my arm just below my wrist and the hand surgeon gave me tramadol for pain, had to show driver's license and sign for it. I only took it 2 nights at bedtime since wasn't sure how I would react to it, 50mg each night.

Hope you can get your back pain under control!

Have to ask - do you still go to that GP?

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Lupus.... maybe 4 years 8 months ago #43759

  • CindyAnn
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Melinda - I have one more appointment with that GP because my insurance company scheduled it and then it is time to find a new one! I have no problem getting Tramadol - right now it is the only thing that helps a little, I take it every 8 hours and if I miss by an hour I know it :S - on most days I end up taking Alieve with it as well.

Sandi - Thank you for your concern - I am one not to take any medication if I can get away with it and taking the MTX was not what I wanted but my GP would not even look at the x-rays or other reports until I tried so on the bright side at least now I know I can not take it :sick:

Dan - I read your story often and feel so sad for all you have to go through :( I know with all I have it is nothing compared to your challanges.

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Lupus.... maybe 4 years 8 months ago #43761

  • Sandi
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That's unreal. Sounds like he needs to be reviewed by the AMA. I just can't wrap my head around that one. :unsure:

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Lupus.... maybe 4 years 8 months ago #43771

  • DanC33
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Thanks CindyAnn, I have been through a lot the last few years. But we all have our challenges, some are dealing with far worse than I am. But this forum has given me a place to vent, get info and support. So even though you don't have Lupus please feel free to chime in because we ALL need support. One more thing be careful with the Tramadol, while it's not an opiate like Norco it can still be addictive.

Sandi you are right about that GP. A doctor like that is dangerous.

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Lupus.... maybe 4 years 7 months ago #44232

  • CindyAnn
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Had my appointment scheduled by the insurance company – all went as expected – kind of like a physical without any lab test. The student Dr. wanted to add to my pain medication to help me sleep thru the night – I questioned the drug and asked if it interferes with platelets – he said “No” but go ahead and do your research and if you want it just call and we will have the prescription filled.
I did my research and low and behold the very first warning on the drug said “tell your doctor if you have any bleeding issues” and by the way major interaction with tramadol “do not take with!!!!” :ohmy: I don’t think I will be calling for the prescription to be filled.

My EX-Primary care Dr. then came in and went over everything again and said it would be fine to take the two drugs together (Amitriptyline is the second drug they wanted me to take). I mentioned that my Hemo wanted me to have a CAT scan of my Abdomen and a Colonoscopy because of the pain on my left side under my ribs have not gone away since December – his response – "she is just looking for tumors and you don’t have any – it’s just “IBS” and if you want the Colonoscopy I will order it but the CAT scan is just way to much radiation."

Yes, I am sooooo done with this Doctor!!!!

Went for third visit with Chiropractor – he actually looked at the back x-ray ordered by the Rhumy and told me “I don’t know why it is not mentioned in his report, but you have an extra Lumbar Vertebra”
Could be reason for some of my back pain – it causes instability and makes one susceptible to back injuries.
Anyway – I see a New Primary Care Physician on October 23rd – she is a Naturopath – so my fingers are crossed

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Lupus.... maybe 4 years 7 months ago #44245

  • Sandi
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I'm so glad that doctor is an 'EX"! He's worried about radiation but exposed you to Methotrexate for no reason? Grrr.

As for meds, it's hard to find one that does not list thrombocytopenia as a side effect. Most drugs have it listed and it all depends on how any one individual responds to it. Even the meds used to treat ITP list thrombocytopenia. Just because it's listed does not mean that it will lower your counts. Most antibiotics also can affect platelets.

Good luck with your tests and let me know how things go.

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Lupus.... maybe 4 years 7 months ago #44249

  • Melinda
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I look up at Medline Plus any med - if it does say to tell your doctor if you have bleeding issues then for sure I don't want to take it until I do talk to my doctor. As Sandi said, lots say they can cause unusual bleeding or bruising - but I tend to not like it when it says tell your doctor if you have bleeding issues.

Let hope your new doctor is The One - not much longer until you see her.

By the way - it is wonderful that your Ex-Primary has x-ray vision and can see inside a patient to know whether they have a tumor or not or an abnormality, he really is amazing! [yeah, CATs have a lot of radiation but there are times when one is necessary - I just had one and Dan will be having one - you do what you have to do]

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Lupus.... maybe 4 years 6 months ago #44689

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Well, saw the new Doc on Thursday - I like her and she may work out to be "the one" she is running a food allergy test along with some others and agrees about getting off Tramadol. Also doing a CT scan on my abdomon to find what is causing the pain under my rib - going on 11 months now :(

She is a Naturopath and has specific interest in autoimmune issues.

It will take a few more visits to get a good feel for each other, but I can tell she is interested in solving the whole body and finding what is causing the symptoms not just treating the symptoms. She even drew the blood herself for the test :blink: (never had the Doctor do that - always a nurse)

I will post next week or so when I get the results back from the test she ran - fingers crossed we find something to work with :unsure:

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Lupus.... maybe 4 years 6 months ago #44691

  • 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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Sounds good! Let us know what you find out.

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