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Joint inflammation no RA diagnosis

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Posted 1/26/2015 5:03 PM (GMT 0)
I am hoping to get some input from you all! I have read several posts and have found them helpful. Here is my story...
I am 25 years old. I have had joint pains for about 9 months now and the originally thought it was sure to systemic strep so I had my tonsils removed, that did not help! Now I have gone to see a rheumatologist and all of my blood work came back great with the only thing being a slightly elevated CRP. So he tells me I have some inflammation in my joints. Don't know the cause or anything. I was put on 5 mg prednisone for 3 weeks and since that was helping ( mostly, I have some days where it does not seem to help). Now I am being put on Plaquenil. I understand this medicine is relatively safe, and I need an eye exam. I am just wondering of anyone has been on Plaquenil for a really really long time. I'm just thinking ahead for my future since I am only 25 and having these issues early.

I am also wondering after reading about gluten if it may have an effect on joint inflammation as many things I read say that it does. Have any of you seen a difference with cutting out gluten? I just hate to go on meds so early and eagerly if I am going to have this issue for ever.

I feel I have something going on with my joints but as of yet have nothing to call it other than inflammation.

Help!! :)

Michaela
Posted 1/26/2015 6:46 PM (GMT 0)
I've been on plaquinel for about four years. So far I've had no problems with my eyes. It does help with my fatigue and some pains.
Posted 1/26/2015 8:12 PM (GMT 0)
There's nothing wrong with trying a GF diet for a few weeks to see if it makes a difference. Have any imaging studies shown changes in your joints? I don't have RA but I do have enteritis arthritis and adopting a GF diet did help a bit.
Posted 1/26/2015 8:22 PM (GMT 0)
They have not done any X-rays or anything! I am a little frustrated with this, as I am sure most people with these sorts of ailments are since they are so hard to diagnose. I have thought about the GF diet and I don't think it would be so bad. I have just seen talk that if you want to be tested for a gluten intolerance or celiac disease that you have to be eating gluten at the time. I suppose I could always start eating it if I felt like it was the gluten causing my issues.
Posted 1/26/2015 8:31 PM (GMT 0)
Exactly. You do need to be eating gluten to be tested. I tested negative, then adopted a GF diet a few years later. My rheumatologist just kind of rolled his eyes, but it was my GI that suggested the diet change.

My kind of arthritis does not damage joints, but RA will. The only downside I could see to a GF diet is that you might have joint damage happening while you are not taking any meds. This is beyond my experience. But I will say that if a GF diet is going to make a difference you will know within a month. But you really do have to be diligent and be completely GF. "Gluten lite" is not going to tell you anything.
Posted 1/26/2015 8:35 PM (GMT 0)
I just started the Plaquenil today so I hope that I can see a result from going GF before I see results from the meds. How will I know what is making me feel better. I do not even have a diagnosis I'm just trying to be an advocate for my health. Thank you everyone for the input, it's very helpful and I love hearing everyone's thoughts.
Posted 1/26/2015 9:18 PM (GMT 0)
If you want to know what is working you have to do only one thing at a time. Although I suppose you can do both right now and then stop one of them in about a month.
Posted 1/28/2015 3:37 AM (GMT 0)
I've been on Plaquenil for a bit over 9 months. You do need a "baseline" eye exam so that your Ophthalmologist has an idea what changes have been made if any to your vision. Please ask your RA MD to check for Anti-CCP, this test will prove that you are RA positive. Hopefully you were told that it can take up to 6 months before you notice the Plaquenil is working? For me it hasn't. Hopefully you will see results in a few months. But you first need to get used to the drug. Make sure that you eat prior to taking the dosage. It just makes it easier on your stomach to start with. Later on you'll be able to take it on an empty stomach, hopefully. Best of luck to you Michaela!
Posted 2/5/2015 2:25 PM (GMT 0)
Reading your post I saw similarities to where I was. I was originally diagnosed with UC in 2010. I was put on remix aid and prednisone. I finally got relief and my UC flare subsided but I kept having issues with my hips, ankles, feet and wrists. I thought it was joints but my GI sent me to a rheumatologist and from then on found i have what they called diffused tendonitis - inflammation of the sof tissue connecting my joints. This is what I'm suffering most from now and trying to find something to keep the aches, pains and trigger fingers down. I was removed from remicade as it was too hard to keep apts due to my work life and use humira instead. I have learned that the autoimmune disorder I have is the cause of my UC, swollen tendons and inflamed eyes which all get aggravated under stress.
Posted 2/6/2015 2:27 PM (GMT 0)
Michaela, did any of your Drs. think you had rheumatic fever from the strep? You can have post streptococcal issues. Did any of the Drs. think this might go away in time?

I've had several health issues in the past 7 years. I had a rare form of colitis called diverticular colitis that was "cured" by surgery. However, around the same time I got a skin form of scleroderma called morphea and also joint pain!! Well I then developed swelling in my hands and pain, along with other joint pain and fatigue plaged me all ths time as well. So, a rheumy told me he thought I had seronegative RA. I took plaquenil but stopped it but started back on it this week. I actually think it's working already, even though it's too soon.

Anyway, to the gluten. Back in the fall, I went gluten free and it really helped the swelling in my hands, until recently. LOL. I've had a bad flare. It's worth a try. Go to Whole Foods or another organic grocer and you can find all kinds of gluten free stuff. You can find pasta made out of rice or corn (I prefer the corn) or even bean pasta! It's not too bad. I love my Millet Bread, it makes the best toast.

It seems auto immune diseases are tricky to diagnose but they can sure make us pretty miserable. Fatigue and pain are tough.

I hope you get some answers and relief soon Michaela. Don't be afraid to seek a 2nd opinion. If there is a center of excellence or a teaching hospital near you, you might try them. Mayo, Johns Hopkins, Cleveland Clinic, etc....

Posted 2/6/2015 3:29 PM (GMT 0)
I have been on plaquenil for 25 years with no side effects. I do get eye exams regularly and haven't shown any signs of problems.

Good luck to you!
Posted 2/10/2015 10:03 PM (GMT 0)
I was on plaqunil for about 6 months and did have regular eye exams. I stopped this drug when it caused me to loose my sence iof smell and a result if no taste buds p. I had previously been hospitalized for 2 weeks and almost died from taking gold injections. . Since I was quite thin 98 lbs after my hospital stay ,,mi didfnt want to loose more weight from not being able to taste or smell food ...I stopped plaqunil before I noticed ant other side affects. Donna (A0166747)
Posted 4/16/2015 5:21 PM (GMT 0)
Gluten free saved my life. It started as bone weakness,joints so swollen that bending them was impossible. Than my pains spread to my heart feeling tight, my breathing was not normal-had to take deep breaths, cartilage grinding and gosh at least 10 other symptoms devoured my body. After gluten free,no alcohol,no sugar, I feel like I am not dying like I was last year.

Google Functional Medicine they will detox your body and get your bones and tissues the vitamins you need. Also, Check out Dr. Susan Blum The Immune System Recovery Plan. She explains the leaky gut theory related to gluten. Our bodies see gluten as an invader because it leaked into our blood stream from our gut. Invaders must be taken out and so the inflammation begins.
Sure hope I helped
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