Lupus or palyndromic (sp?) RA relafen?? - Lupus Message Board

Kel123 · 06-27-2007, 12:48 PM

Hi there,

Well, I have been seeing a rheumatologist for the past 6 years with a definite autoimmune-- something going on. I had an appt today, and my rheummy has added yet another mediation.

I am now on plaquenil (generic started may 1st) prednisone (started low dose continuous 7.5 mgs in May) Folgard, and Calcium with Vit D (to guard against osteoperosis from pred). I tried diclofenac for breakthrough pain with no luck, Ibuprofin, naproxen, and Tylenol also do not touch my pain. He has now added relafen in hopes that I will be able to wean the prednisone down to 5 mgs in a couple weeks. I am still in pain--I am definitely better, but I have almost lost the use of my pinkies and the two fingers next to it on both hands. They are very sore, with no swelling. They just ache whenever I move them. It really makes it hard to function. I have had 6 episodes of increased pain over the last 2 mos putting me in an almost chronic flare state. (my symptoms are always sore throat, fatigue, swelling, joint pain in the knees, ankles, hands, fingers elbows) The prednisone has definitely helped with the swelling, and I can now get out bed without limping like an 85 year old. I am 34 years old and feel so old. I guess I was really hoping to start to feel better by now, and I didn't think I would be on steroids like this! My rheummy doesn't want to chart me as Lupus, but he said again today it is a definite possibility. He has given me the UCTD diagnosis now. He also said I have a lot of palindromic RA symptoms (neg RA factor) and that is also a possibility. He said today that it sounds like I may have irritable bladder or cystitis also. Does anyone know about this? Has relafen helped any of you? My fatique has also been a lot better since all of these meds started, as well as my cognitive function. I was Severely depressed and psychotic on 10 mgs of prednisone, but feel better since I dropped down to 7.5mgs. My ANA went from 1:320 back up to 1:1280 now. I inquired about lymes, and had a negative western blot done. He really does not think it is lymes. He said it is definitly auto-immune in nature. I would love to hear some insight from anyone with similar experiences. A month ago, I also was diagnosed with chostrochondroitis (sp). These things just keep adding up ( and there are more I haven't mentioned) Hoping to feel better soon. TIA
Kelley

VeeJ · 06-27-2007, 02:33 PM

Hi, Kelley. You asked about cystitis. YES!!! In the 10 or so years before I was Dx'ed, I had multiple bouts. And in the final year before, OUCH. At first I went in to my GP every time, to have urine checked, then got tired of doing that & learning nothing. During one bout, I formed grit (tiny stones) that caused a complete blockage. Misery!

I took a bladder antispasmodic for awhile (at least a year prior to the lupus Dx), but because it made me feel worse (terrible abdominal cramping), we all agreed I had to quit the drug.

The urologist toyed with testing me for interstitial cystitis, but my GP & he concurred that the test is so rough (you have to be put under) that I should hold off.

My urinary irritability/frequency cleared up a few months into Plaquenil & also strict sun avoidance. Further, I'd had severe irritable bowel for 25+ years---and that also cleared BIG-TIME. Ditto with migraines, sciatica, neuro-like tingling, torso/arm rashes, and vrs. infections (UTI's, conjunctivitis, etc.)

I still have periods of fatigue. Also, almost daily pain, but much milder than before & of lesser duration.

Just yell if I missed anything you were hoping I'd address, OK? Thinking of you & hoping things improve for you PDQ! With my best, Vee (P.S. My Dx was the SCLE subset, positive for anti-Ro.)

Kel123 · 06-28-2007, 05:12 AM

Thanks Vee,

I feel like I can never get a good nights sleep because my bladder is always irritable. (burning, frequency sore--hard to explain) I can go, and I still fell the need to when I get back into bed. I seem to wrestle around in bed with a very uncomfortable feeling in my bladder. I also have had multiple UTI's was diagnosed with urethral reflux, had an IVP and voiding cystourethragram performed in my teens. If I hold my bladder at all, I will get a UTI. I had 2 UTI's in January and February of this year after some rectal surgery I had done followed by a yeast infection and my poor bladder has not been the same. Of course my urine sample is negative. (except a little blood and white cells which they are never concerned about!) What were your specific symptoms like that made the dr. think you had cystitis? My dr. also mentioned that the test was a difficult one. You said the plaquenil helped it? I only mentioned it to my dr. this last time because It has been really bothering me lately. The relafen seemed to help my pain yesterday about 8 hours after I took it! Hopefully a few more doses in my system will make it better. Again, thanks for our wisdom. Its funny, I also have had bouts with sciatica and numbness and tingling on and off which I never related with all of this stuff. The list seems to always keep going!

Kelley

VeeJ · 06-28-2007, 08:50 AM

Hi, Kelley. My symptoms were a pretty steady burning sensation in bladder, pain on voiding, urgency, and frequency. I did have a few UTI's. But yet when these symptoms intensified, I didn't test positive for infection. And THAT didn't make sense to GP, urologist, or me. So that's why interstitial cystitis, also an autoimmune, was discussed (but not tested for).

For me, so MANY of my problems have abated with Plaquenil, which makes me wonder just how many of them were lupus related---or, minimally, problems seen in people during the trajectory towards lupus. But honestly? I'll never know for sure.

My bladder can still get "annoyed"---which beats flat-out "furious".

I minimize spicy foods, diet cola (artificial sweeteners seem to bother me), acidic foods (coffee, vinegar, salad dressing, tomatoes, etc.). And I make sure to drink plenty of plain water.

If you were to read up on interstitial cystitis, you'd find food & beverage lists that may be worth a look-see. Of course, food & drink may have absolutely NOTHING to do with your problem, as only your drs. & you can judge that...

Yes, you're right: our "lists" can keep going & going. ( could make a terrible joke here, but I'll restrain myself.

) But here's hoping your list of issues is steadily shrinking, Kelley. You hang in there, OK? All my best, Vee

Kel123 · 06-28-2007, 12:05 PM

Hi Vee,

Thanks for the reply. Sounds very similar to what I seem to be going through. I have been to my ob/gyn several times swearing that I have yet another UTI, and I also test negative sometimes and wonder why I have the symptoms. They even treat me for yeast sometimes thinking that is what it could be. I didn't realize it is autoimmune related also...HMm.......Thanks. I will definitly look it up and do some research about the foods.
Best wishes to you too. I hope I have the same positive results as you with the plaquenil. My dr. said not to pass judgement on it until at least mid-August.
Kelley