Preliminary Diagnosis: Systemic Arthritis?

Updated on December 03, 2011
D.P. asks from Seattle, WA
5 answers

I saw my doctor yesterday for help with some significant and lasting joint pain (both shoulders, both hips, one knee, four fingers so far, and all 10 toes), and 3 of the 5 tests she ordered are back. They results show that I have systemic arthritis. The other two more detailed tests won't be back for a week. I got the referral I needed to see a Rheumatologist and they actually had a cancellation tomorrow, so I feel lucky that I could grab that appointment.

My kiddo has two appointments tomorrow at the same time that he can't miss, so my husband is taking him to those. I have a good friend who will come with me to my appointment to be an extra pair of ears and my "note-taker".

I know so very little about this - it appears that systemic arthritis is an umbrella term for RA/Lupis/Sjorens... and other autoimmune disorders. Aside from the obvious questions (what exactly do I have, how do I treat it, what's the best way to manage pain, how do I avoid further flares) - what else should I ask?

Have any of you had this diagnosis and how are you handling it?

What can I do next?

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So What Happened?

Thank you to all of you for your responses! I saw the Rheumatologist today and even without the results of two tests that aren't back yet, it's almost certainly RA. My RA readings are 7 times the normal range. I'm *So* *Relieved* that it's not Sjogens or Lupis that I could do a jig. (Except that I'm hurting too badly right now!) Tomorrow I'll start a low dose of steroids and methotrexate and we'll try tapering those down over the next few weeks. I'm so glad to be getting some answers! Thank you again for your help.

More Answers



answers from Portland on

My mother was diagnosed with rheumatoid arthritis and osteo-arthritis. She was told she had 5 years before she was in a wheel chair.

She started on Shaklee. Took her 6 months to get off her 3 high powered pain meds like darvocet, vicodan, and another one. She was pain free in one year after starting Shaklee.

She took the multi-vitamin, joint health, osteomatrix, (calcium) and alfalfa. The alfalfa has trace minerals which people seem to need with arthritis.

If you are interested in help and want to try Shaklee go to:

Lots of people tell me they are helped not only with joint pain but rheumatoid and osteo-arthritis. If you would like to try this please go to the website above and check it out and give me a call.


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answers from Seattle on

I was diagnosed with RA(I'm 37) three years ago after the birth of my son. No real explanation for the cause, just a big hormone stir is how it was explained to me. I prayed the tests would come back as parvovirus because it's fixable but it was RA. I was prescribed Enbrel which may have worked great however I have just been on prednisone with hopes to conceive another child(my choice). If your done having children then I say go for a DMARD(Enbrel, orencia, etc). You should have great relief and range of motion in about two weeks. It's helpful to check out Web MD or for resources. Ask lots of questions and like your rheumatologist because your going to build a long relationship with them. Good luck, I know your pains.

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answers from Chicago on

So the banner on the top left is hiding some your question..but I am seeing that maybe it was your primary doctor that is making this diagnosis? your symptoms aren't all on both sides if your body...correct? And you have other tests still waiting to come back?

I have an autoimmune condition/systemic muscle condition called dermatomyositis. It's similar to lupus, etc. I was diagnosed 3 yrs ago. Been through many doctors/rheumatologists. Have been on high dose steroids for 3 years as well, now on IVIG to try to get me off if them (you can't stay on those long).

A few things....from my experience...
1. I'd let the rheumatologist (and ask if they are even the correct specialist to see) be the one to make the diagnosis. They are the spcialists in autoimmune conditons. I'd ask about why you don't have the symptoms on both sides- usually systemic/autoimmune is equal on both sides. Trauma is one side.
2. What tests have they run? Ask for an antibody blood work. Did they run your ANA? Was this positive? That I believe is a marker for autoimmune. I would also request a vit d level test. Just another blood test...good to know and low in many autoimmunes. Easily treated. In my condition, the tests that are the indicators of disease activity are my CPK, aldolase, sed rate, c-reactive, ALT, AST, Jo-1 anti body. All autoimmunes are different though. In your case ask what they are. Always get copies of your blood work!! Keep a file. And know what the normal ranges are.
3. Do some research online for organizations with your condition. There is an arthritis one I know. They also may have resources and referrals for doctor's that specialize in your condition. This I believe is important. I would ask if the Rheumatologist has treated your condition. What success they have had. Have they used the standard treatments? Know if new treatments? Off use labels? Find one that knows your condition.
4. Treatment. One of the other ladies mentioned that steroids are often the first line of treatment for autoimmune. This is typically true. And they are terrible! But necessary sometime. I have been on them for 3 years and an having a terrible time getting off. if its only a short time (less than year) I'd be ok with it personally. If not I'd really research and ask about alternative options. And push for those first. You have to fight for it though. Not easy getting the docs to agree to that before the steroids.
5. Seems like you already are- but most important- with a chronic condition- you must be your own advocate! The doctor's have many many patients with all different diseases. They do their best but you can help. Stay on top of it yourself. Keep your records. Research. Discuss options you find with your doc. They will tell you if they are valid in your case or not. Kind of like a continual brainstorming activity :).

Sorry for so much! Excuse my typis- im on my phone) Good luck!

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answers from Seattle on

I have fibromyalgia, not the same, but I can understand pain. Some questions you should ask are; about your diet (would going gluten or milk free help) or adding any supplements (fish oil, etc..). I would also ask how any medications you will be taking will affect your life. For me, I am trying to conceive (after a 21 week loss)and
my flare up is really bad, but can't take any medications in case I do get pregnant cause the meds are not safe For use during pregnancy. I would also maybe talk about how this will affect your family and maybe how exercise would affect how you feel. Good luck!

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answers from Portland on

I was diagnosed a couple of months ago with a related systemic rheumatic illness (polymyalgia rheumatica with visual complications). The specialist told me that for my condition, the only real treatment (sometimes a cure) is intensive steroid therapy for at least a couple of years.

I did a trial run and could not begin to tolerate the side effects (without hospitalization) after just a few days, so I opted out. Instead, I'm taking large doses of Omega 3 oils, bromelain and turmeric extract for their anti-inflammatory effects. This seems to be helping, but it's too early to tell whether these will protect my arteries and vision, which are at risk. Financially, I have no other options right now, since my insurance is totally inadequate.

I hope you get the answers and help you need.

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