http://www.medpagetoday.com/Rheumatology/Arthritis/51993?xid=nl_mpt_DHE_2015-06-08&eun=g475607d0r
This is always a concern for me, but I am relieved to see that the main risk factor is the additional presence of high ESR or CRP. I have never had those. So far so good. I thought some others here might be interested.
Here is the original article:
http://rmdopen.bmj.com/content/1/1/e000066.full#T3
Thanks Nymph - I appreciate the medical articles you post.
Nymph, you've never had abnormal ESR yet you are treated with Plaquinel? My Rheum says I don't show significant disease since my SED rate is normal (5) so no need for Plaquinel. He offered pilocarpine and said ophthalmologist will get me Restasis. Is my Rheum off in using SED rate as a marker for disease progression? I assured him I'm struggling with fatigue from this but he assured me there is something else causing fatigue sine SED rates are normal.
Thanks!
Quote from: Nymph on June 09, 2015, 12:11:49 PM
http://www.medpagetoday.com/Rheumatology/Arthritis/51993?xid=nl_mpt_DHE_2015-06-08&eun=g475607d0r
This is always a concern for me, but I am relieved to see that the main risk factor is the additional presence of high ESR or CRP. I have never had those. So far so good. I thought some others here might be interested.
That's correct, Cal. From what I understand, sed rate does not accurately show inflammation in all people. At first I was told that I had RA, and so I read a lot about RA. Even in RA, not everyone has elevated sed rates, even though their joints are being destroyed. You can read about that on RA Warrior with references. I am on Plaquenil and it has helped me significantly despite not having the markers. I think it would be worth finding a rheumy who is at least willing to give it a six month trial. Side effects don't come until much later so where's the risk? ....you could say. ;)
Now that I think about it, my rheumy may have initially prescribed the Plaquenil due to the suspected RA, because you can't let that go untreated. However, there are others who also take it who do not have elevated numbers. Do a seach for sed, esr, crp and plaquenil. Maybe you can find some discussion.
Thanks Nymph! My biggest complaint these days is fatigue and brain fog that comes on for weeks at a time then gone mostly then back. I read Plaquinel helps in this regard for some. Did this help your fatigue or brain fog (if you had these symptoms)? Yes my mouth and eyes are dry but I manage with OTC devices pretty well and the worst of it is while I sleep. Thanks again bud.
Quote from: Nymph on June 18, 2015, 06:09:08 AM
Now that I think about it, my rheumy may have initially prescribed the Plaquenil due to the suspected RA, because you can't let that go untreated. However, there are others who also take it who do not have elevated numbers. Do a seach for sed, esr, crp and plaquenil. Maybe you can find some discussion.
Yes, it helped my fatigue and brain fog. However - big caveat - I started the gluten free diet at the same time. I definitely have a gluten sensitivity, so it's impossible to know how much was the gf diet and how much the Plaquenil. However, I had such a turning point at the six month mark that I believe that Plaquenil was a big part of that.
I have never, ever had an elevated sed rate. Mine has been usually below 8 or so. A couple of years ago it was up to 18 and my doctor got so excited!!! My CRP is also in normal range. I have been on Plaquenil for about 4 years and it does help with inflammation, fatigue and I do feel some better when I am on it.
I have extremely high antibodies for any of the autoimmune diseases that I have. I have many signs of inflammation with tendons, muscles, and other issues. My immunologist did not think it would help but I told him I wanted to try it prior to going on some of the big gun meds. I am glad that I did go on it.
When I go off the Plaquenil the cartiledge in my nose where it attaches to the area above my top lip gets very sore. My septum also gets very sort and the hard palate also gets tender---not the skin, but the bony part. This is something I never expected to improve on the Plaquenil. Irish
Cali ..... I have never had elevated Sed Rate or CRP, even when I am in an Autoimmune Flare. I do not think they are accurate markers of inflammation for everyone.
The first set of labs my Rheumatologist did were very inclusive. At the time I was very fatigues, had multiple joint and tendon pains and inflammation, had edema in my lower legs and feet and ankles, had bilateral calf rashes, had other rashes, and had a multitude of other symptoms. My lab was all normal except for ANA and SS-A.
Your Rheumatologist is wrong when he says your fatigue cannot be from Sjogren's just because your Sed Rate is normal. My Rheumatologist started me on Plaquenil right away because it slows progression and improves symptoms. My symptoms did improve significantly. My Rheumatologsit also confirmed that people can be having severe inflammation and their labs may not show it.
I have flares for which I take Prednisone (20 day taper). When I am in a flare, I am extremely fatigued (along with other symptoms). The Prednisone gets me out of the flare. Then I feel very good for a while, until I get another flare. My Sed Rate and CRP levels are normal during the flare.
If I were you, I would find another Rheumatologist.
Nymph, Irish, Jasper: thank you for the replies. I know now what I need to do...new rheumatologist and I'll see her next month. Thanks again, I'm really appreciative of you all sharing your knowledge and experiences. Not sure what is do without this forum.
Much love.
Hey, no problem. It's confusing out there. Best of luck with the new doc. 8)