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Possible RA...what to expect? 5 months 5 days ago #70167

  • Carcamoc10
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Hi, I hope this message finds everyone well! It’s been a while since my last post, but I haven’t had any updates since I postponed my follow ups due to COVID. However, I am looking to go to my GP because I want to get tested for Rheumatoid Arthritis and I’m kind of scared. Does anyone here have it along with the ITP? What can I expect as far as testing and doctor’s appointments? I just requested an appointment at my general practitioner for next week after a few years of struggling with joint issues. I decided to do it because of some pain in my right hand and my knuckle is very swollen, which is new. I used to just have joint pain but no swelling/redness. Now I know I need to go get it checked out. I’d appreciate anyone’s experiences here, thank you in advance!

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Possible RA...what to expect? 5 months 5 days ago #70168

  • MelA
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I know nothing about RA & ITP. But I do know it took my niece forever to be diagnosed with RA as her symptoms didn't match the "norm". So if you feel it is RA and tests don't show it then keep pushing. Also I think I'd want to see a rheumatologist.

There used to be someone here many years go who had/has RA and ITP - she was treated with rituxan for ITP and it helped her RA.

Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Possible RA...what to expect? 5 months 5 days ago #70170

  • Carcamoc10
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Mel, thank you for the advice! I figured it wasn’t a straightforward thing, as I myself have doubted having it since I don’t seem to fit many of the symptoms. It has bothered me for at least a few years though, and with symptoms worsening I cannot continue without looking into it further. As far as the combination of ITP/RA I was hoping someone here would have insight, but it’s ok. Thanks for commenting, I hope you’ve been well :)

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Possible RA...what to expect? 5 months 4 days ago #70171

  • ImPatient
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Carcamoc, are you taking any medication right now? My joint pain, cracking and swelling improved a lot when I lowered my dose for Revolade. I could hardly turn my head or see my ankles before it was that bad. Just an idea because I thought you took it at some point too, but not anymore right? Maybe you have something different. Good luck!

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Possible RA...what to expect? 5 months 3 days ago #70172

  • Carcamoc10
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I was on Promacta for 9 months last year, but it has been a long time since I’ve been on any medication. My hematologist had actually mentioned this as well when I told him about my pain. Of course, at the time, I was on Promacta so I thought he might be right. Now, I’ll have to try to navigate figuring this out. Thanks for your input, though!

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Possible RA...what to expect? 5 months 3 days ago #70173

  • poseymint
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Good you are getting it checked out! There are so many causes of joint pain! look here at this list-
www.mayoclinic.org/symptoms/joint-pain/basics/causes/sym-20050668
So self-diagnosing is probably not going to be accurate. As Mel said, see a rheumatologist, they deal with joint inflammation/connective tissue disorder.

I have done all the testing for Lupus and rheumatoid arthritis. Its complicated, 8 vials of blood for over 50 tests. CRP or C-reactive protein is a test for wide-spread inflammation. There are 3 tests for Rheumatoid Arthritis, they are looking for Rheumatoid Factor RF. I was positive for all 3 so was diagnosed with Rheumatoid Arthritis. I was also positive for ANA/anti-nuclear antibodies so was diagnosed with Lupus and Sjogrens. But finally after a few years, I really only have symptoms that fit Sjogrens Syndrome so thats what I identify with.
The symptoms of Lupus, Sjogrens, fibromyalgia, and MCTD mixed connective tissue disorder are similar and overlap. Basically everyone has their own set of symptoms so it takes time to sort out the diagnosis. Rheumatic disorders do sometimes go along with ITP.

I've found with rheumatic disorders that diet and exercise, lifestyle changes do make a difference. My CRP markers were high in 2017, but I've lost weight and quit wheat, sugar also went more towards vegetarian and my levels of inflammation have come down, tests are now normal. (my platelet count doesn't seem to be affected by lifestyle changes)

My only advice for seeing the doctor/rheumatologist is to be prepared. Write down all your symptoms and dates of when the joints flared up. Write down any other odd symptoms- fatigue, mouth ulcers, skin issues or discoloration, rosey cheeks, nerve and muscle pain, cold chills, low grade fever. Just anything even if it seems unrelated.
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Possible RA...what to expect? 5 months 3 days ago #70174

  • Carcamoc10
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Poseymint, thank you so much for this informative input!! I feel a little less lost. I am hoping it is nothing serious but since I’ve been struggling with it for some time, I feel like I need some answers. So, I was going to see my GP first but to be honest maybe I should try to find a rheumatologist who can see me without a referral. I don’t need one with my insurance but I was told some rheumatologists like the GP to do the legwork and require referrals. Hopefully I’m able to see one without one though, as I feel like they would be infinitely more helpful than my GP in figuring this out. Thank you for the information and I will heed your advice about writing my symptoms down, I appreciate it!

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Possible RA...what to expect? 5 months 3 days ago #70175

  • b2h
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I don't think I've ever had a GP refer me to a rheumatologist. I've always researched and found rheumatologists that I wanted to see. Just be aware that you may see many rheumatologists that aren't a good fit for you. I've had a couple great ones, some that were helpful at times and at others times not, and some that did not help me at all. Don't be afraid to change rheumatologist and don't get discouraged.
For me, when I have been at my sickest, my rheumatologist has been the central figure to my health/healthcare/life. It's odd to me that they can be so crucial and it can be so hard to find one that is a good fit. Having a good doctor/specialist is invaluable.
I understand why you are scared and concerned, but once you have a diagnosis then you can research and get better treatment, so whatever the diagnosis, it will be helpful. I know you have been struggling for a while. I remember you mentioning pain when you first joined this group...
Best in your search ~
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Possible RA...what to expect? 5 months 3 days ago #70178

  • Carcamoc10
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b2h thank you so much for your words of encouragement! And that is great advice as well to not give up in finding the best care possible for me. I am going to start calling rheumatologists offices here in a bit...thank you :)

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Possible RA...what to expect? 5 months 3 days ago #70181

  • MelA
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Carcamoc if you like your PCP can't you call and ask for recommendations for a rheumatologist who might fit with you?

And one should always look for the best care - I fired an endocinologist because he kept calling me Melissa instead of Melinda, even in emails when I signed my name Melinda - fired a neurologist because she kept looking at herself in the mirror on the back of the exam room door - fired a PCP because he told me a side effect known to a med I took was all in my head. The patient is #1 - we need to look our for ourselves!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Possible RA...what to expect? 5 months 3 days ago #70182

  • Carcamoc10
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Mel, I like my Primary Care Provider enough but I can never seem to get an appointment with her since she splits her time between 2 locations and spends most of her time in the one an hour away from me. I have found a few rheumatologists close to me and I’m waiting to hear back on who can see me the earliest. I definitely feel like I’ve learned a lesson or two from having ITP in regards to healthcare providers, so I feel very comfortable advocating for myself, luckily!!

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Possible RA...what to expect? 5 months 2 days ago #70184

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Well done Carcamoc, I spent all my working life encouraging patients to learn about their conditions and advocate for themselves.
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