RA with Sjorgrens

[SLCR]

Hello and thank you for reading or responding. I am 59 and have been on a 2 year journey to get a diagnosis. That’s a long story but now with a move to a new city and a new rheumatologist I am told I have Sjorgrens, a strongly positive diagnosis and RA with a non typical presentation. I am negative for the CCP antibody, but yes to the other RA tests. I had very expensive tests to rule out mixed connective tissue disease and lupus. I am on plaquenil for 1 year which has helped the sjorgrens symptoms except for the joint pain. I failed methotrexate and Arava and Imuran. I’m simmering at tolerable pain with 7.5mg of prednisone and plaquenil and some occasional ibuprofen. It’s not ideal and I suffer but it’s what I have right now. My new doctor is ready to get approval for Orencia. She said the Enbrel and humira and remicade could push me into lupus. She said the sjorgrens is a sister to lupus and she’s trying to keep me from going down that path, hence the Orencia. She needed for my insurance company an ultrasound of my wrist to find some inflammation. My joint pain presentation is sternoclavicular joints, ribs and sternum, think costochondroitis that never improves. I’ve never had swelling or pain in any small joints etc. I was asked to wean off prednisone and ibuprofen for the ultrasound of my wrist yesterday, which I did. Uncertain of the results yet but need it to show some inflammation for my dear old insurance company. My question, weaning off prednisone and ibuprofen I was positively miserable, I could barely walk I was so stiff, of course my shoulders and ribs and arms were on fire but my hips and knees and legs and my calf muscles and everything! I felt like a tin man with no grease can. Is this RA pain? Generalized stiffness and pain? Oh I had no pain or stiffness in my head, my hands and my feet, the rest of me was lit up like a Christmas tree! Is this RA?? My stereotypical idea of RA does not fit with my symptoms the last few days. I’m now on a prednisone taper to get this flare under control! Any information about non typical presentation of RA and how it might look and feel would be helpful. I keep thinking I don’t have it, but it’s been confirmed and I believe it, but it’s strange to me.

Thank You!

stephanie

[Fruitandnutcase]

Do you know that when you are taking plaquenil ( hydroxychloroquine) it is very important to have your eyes checked and have an annual OCT scan? Ideally one before or just as you start taking plaquenil then annually and if you notice anything ‘odd’ with your vision see an optometrist right away.

You can download a thing called an Amsler Chart - it’s free - the instructions that come with it are very clear and it will let you check at home.

[AgedCrone]

Once you accept your test results & the explanations of their meaning from your Rheumatologist…things will start to fall into place.I think most people’s first reaction is “that can’t be right” followed by “I’m too young/old, nobody in my family has it”…….but unfortunately RA creeps up on all kinds & all ages,& we all have our own symptoms not shared by others.

So take your prescribed medications,& when one starts to bring relief..try to accept that yes you have RA……and life will soon get better,

Hope you find the right set on meds very soon.

[Deeb1764]

I think the biggest thing I have learnt in the 4 years is every day can be different and what I get others won’t and same for them. I take oral prednisone 5mg a day when not having a bad lung day which means I have been on 30-15mg for 2months now as every day a bad lung day it seems.

However I am acutely aware that some of the damage to my heart and lungs could be from pred usage. So if you can get off it great BUT if in so much pain it’s weighing up the medication vs the pain vs the side effects and going with the best route for you.

It’s not an easy journey for some so it’s working with your team for the best options that you and your body like and fingers x.

[MuppetBaby]

My first symptom was costochondritis. I had this for over 3 years and everyone kept telling me I was fine and discharging me. Fourth opinion later I developed another form of enthesitis (Achilles tendonitis) and they started to take me more seriously and was eventually diagnosed with seronegative RA. I have since had Achilles tendonitis bilaterally and insertion tendonitis of the quadricep and patella tendon (all forms of enthesitis) Costochondritis is still my biggest symptom 9 years later and quite debilitating when it flares

[SLCR in reply to MuppetBaby]

thank you for this, costochondroitis pain is absolutely horrible and perplexing! Thank you!!!

[OldTed60]

hi are you in the States perhaps? Yes I had non typical RA diagnosis for a while but it turned out to be overlap ctd , scleroderma and Sjogrens. Sjogrens can mimic RA and is often misdiagnosed as Fibromyalgia when the expected joint damage doesn’t show after a few years. It can also mimic MS and be misdiagnosed as this. It’s a good mimic but if you’re already diagnosed then I'm surprised your rheumatologist is pursuing the non typical RA label? Perhaps because RA is more common and has more established and effective treatments than Sjogren’s?

[SLCR in reply to OldTed60]

She said with my positive Rheumatoid Factor and a positive 14.3.3eta Protein and ruling out all the lupus and scleroderma etc, the RA was certain but I just don’t present in the typical way, my joints affected are shoulder and ribs. Also the treatment options for RA are more established within the insurance guidelines, you’re right not so much with sjorgrens.

[SLCR in reply to OldTed60]

yes, I’m in St Louis. What is your treatment with Sjorgrens and scleroderma?

[OldTed60 in reply to SLCR]

I'm on mycophenolate (brand CellCept) which I tolerate well at max dose and works well for my Sjpgren's Sicca - but I'm very immunosuppressed on this - which brings other issues of course such as greater risk of infections and viruses. I'm unusual for someone with Sjogren's in UK - most are only offered Hydroxichloraquine and if they don't tolerate then only get Rituximab if they develop signs and symptoms of lymphoma or neurological involvement - and even with neuro issues often ignored. I got much better care when diagnosed with RA previously and now I have systemic sclerosis I'm having to trek from Scotland to London to a specialist centre due to rarity of my overlap and very unusual antibody status. I also have atypical scleroderma in not much skin involvement - mainly severe GI.

[SLCR in reply to OldTed60]

It seems so complicated. My first Rheumatologist told me that having the RA was my key to getting treatment, not so much with the Sjorgrens. I don’t care if my diagnosis is RA, I just don’t understand why my only joints involved are shoulder and ribs, at leayas far as I can tell, waiting on results of my ultrasound of wrist. I wish you well, I’m a nurse with enough information to make me dangerous, so I try and just be a patient when I’m at my doctor office, but it’s difficult. Thank you for responding. Stephanie