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
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.)
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!
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
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.
Sorry to hear you're still having trouble and pain. Bless your heart!
I haven't had such pain or UTI problems and have never been on Relafin or pred. Hope "they" figure out some curative combination for you - and soon! It's the deep fatigue that is my major hinderance and my recent ANA was just 1:80.
I haven't seen you back on Lyme, but wanted to let you know that my Igenex Lyme Western Blot came back completely negative, but with some +++ at band 41 for IgG and thatband can be the first to become +. I'm still on the Doxy with two weeks to go and the lab suggests a re-test in 4 to 6 weeks.
Hi, I have had many bouts of bladder infections over the years too, though a couple times I didn't even know it. I had spine surgery last year and at my pre-po testing I was found to have a bladder infection again. In the past I've had it where I had severe pain in my bladder area plus it was extremely painful where the urine comes out. Pain spread to my lower back; i've had burning and had blood in the urine. One time I thought I might have another infection, went to a doc, they did the dipstick tests and said there was no infection, but I had traces of blood & Protein in my urine. However, they gave me antibiotics anyway & sent me on my way. The meds didn't do anything and I felt quite sick for many months, and slowly all the symtoms just went away, so I have no idea what that was about. Over the past 4-5 yrs, I've had urinary symptoms, but usually no pain, no burning, no blood,etc....just having to go sometimes as much as 20-30 times per day, including several times at night, and/or it seems not much comes out. That in itself is exhausting! What's odd though, is in the last few years, it seemed that everytime I was given steroids (either oral pred or medrol dose packs, and even epidural steroid injections) my symptoms would disappear while on the drugs. I don't know what's going on & no one seems to think anything of it. I've never mentioned it to my gyno, though...so I think I will at my next appt.
As for Relafen, yes I have tried it, but it didnt do anything for me. And in fact, it caused my eyes to almost swell shut, so I had to stop taking it.
Hey, I was just recently diagnosed with Lupus as of Wed. Anyway, while I was taking topamax for migraines I started having major bladder problems. My bladder drove me crazy because I had to go all the time and my bladder never felt satisfied. I had doctors do bladder tests which confirmed over active bladder. The meds like detrol la didn't help. I went to a urilogist and he wanted to test me for intersticial cystis. I decided not to go through with the procedure. I got off the topamax and my bladder went back to normal (not normal but not terrible like it was). Anyway, my point is that I did a lot of research and I know that intersticial cystis is caused by inflammation of the bladder. Someone with Lupus would likely have an inflammed bladder. Since prednisone helps inflammation that would expain why your symtpoms stopped. Prednisone works miracles for inflammation but the side affects are horrible. Anyway just wanted to share this with you in case it might help you. I've also heard of people with lupus having an overactive bladder even if it's not intersticial cystis. I'd say the inflammation just goes to the bladder and aggravates us to death. I was glad that getting of the topamax helped mine to go back to normal. That medicine helped my migraines but definitely gave me bladder problems for some reason.
Thanks to everyone for their responses. My bladder problems are definitely better on the prednisone, however I just do not know what to do about my joint pain lately. I started plaquenil on May 1st, and am still hopeful that my pain will be better when it fully kicks in. So far, I have seen an improvement in my fatigue and swelling, and my pain is slightly less, but now I have this new horrible joint pain on my dominate hand. My last 3 fingers hurt so bad that I can hardly bend them. They don't appear swollen, but they hurt so much. My pinky bothers me the most. I have the same stiffness in the other hand also, but not the severe pain that is in the right. I am on 7.5 mgs prednisone, and I have been taking relafen for about 1 1/2 weeks now with no improvement. Has anyone found another NSAID that actually works for them??? Ibuprofin, tyelenol, relafen, diclofenac, naprosen have not touched my pain. I NEED MY HANDS TO WORK!! I am a nurse, and the charting kills me! Any advice would be greatly appreciated. I think my Rheummy is becoming more suspicious of Lupus or RA, but doesn't want to plaque my charts with that diagnosis yet. I am 6 years into this whatever you want to call it disease. (UCTD )