I've been a lurker for a while, but finally decided to join all of you. I do not have a diagnosis yet but already feel like I know you!
I have had mild and occasionally moderate joint pain, mostly in my feet and knees. This has been going on for probably a year at least, but worse for the last 6 months. I had an "episode" in January with 3 weeks of (mostly) low-grade fever, usually just in the mornings. The only other symptom was extreme (and I DO mean extreme!) fatigue, where it was a real effort just to walk across the room. Oh, and I did have back pain, but didn't notice real joint pain increasing. After ruling out everything in the book they finally did the RA/Lupus workup and I did have a +ANA and RF (around 27 I think). I finally started feeling better and my PCP repeated the labs a month later. ANA was a lower +, but the RF was now 103! So, I was referred to the rheumy, but couldn't get in until June.
The rheumy examined my joints and didn't seem real sure about a diagnosis. I don't ever have any swelling, but do have the morning stiffness lasting an hour or more. The pain in my feet and knees has not gotten any worse. On my 2nd visit he gave me 2 steroid injections in my lower back for back pain, which he didn't really think had anything to do with autoimmune disease. However, he did say if I noticed an improvement in my other joints it would probably indicate it is an inflammatory arthritis. Well, after about 4 days I noticed a remarkable improvement in the stiffness! I could move in ways that were very difficult before (squatting down, walking down stairs without pain, etc.). It was really something, after all this time to have such an improvement.
If I understand this correctly, the steroid was a kind of "test" for inflammatory arthritis. When I called the rheumy's office a week after the injections to report in, he did not want to see me until September. I'm not on any meds, although he mentioned Plaquenil, so I called back to ask about that, but he didn't want me to start it yet.
It's great that I'm feeling better, but wonder how long this'll last and does this sound reasonable to wait since I did see this improvement after the prednisone shots? Does this sound like it's probably RA or ?
Sorry for the lengthy post but would appreciate any feedback you might have on this.
I look forward to getting to know all of you better!
I just wanted to say Hi! I am new here too and so cannot really answer any of your questions based on my experiences. But I am kind of surprised they didn't want to see you back until Sept. considering those lab numbers. I'm glad the shots made you feel better!
Rocky
Actually happy to be sick and not just crazy . . .
i too wanted to shout out a hi to you. i agree with rocky sept. is a bit of a wait, especially when u r still uncertain of a diagnosis.
i go every month to my rhuemy, but that might be due to the mtx and all the blood work to monitor the meds? i really do not know what the norm is for rhuemy apts?
i am certain someone will get back to u as soon as they sign on like erin or ducky with some better insight. good luck ~*yalinda
I agree, you should be seen sooner. I don't understand the thought behind making you wait and not getting you on something that will 'kick in' before the prednisone wears off. That is awesome, by the way, that the shot has given you so much relief.
You know, it can't hurt to call again and question the wait time on the appointment. It is possible, they just don't have an opening unless it's considered an emergency.
From what I understand, Plaquenil is a very common medication given to Lupus patients. I've been on it for a year and am pleased with the results. Not perfect, but very pleased! I have a lot of lupus symptoms, but have not been diagnosed w/it. Though my ANA has been positive most of the last 3 years, when they finally did further testing, all my labs (inlcuing ANA) were in normal range (first time in a very long time) - go figure! I hope you continue to get relief and help from your physicians! ***
Hi winwin! love the name. Welcome to HW. It does sound like you have some inflammatory arthritis going on, especially since you responded to the steroid injections. And with your positive ANA and RF, you did the right thing by consulting a rheumatologist.
I'm also a bit surprised that you are not to go back until September, and you weren't given a prescription for anything. I think at my first rheumy appt. I was offered NSAIDS at a minimum. OF course, I've never had (or needed) a steroid injection--perhaps that lasts a while. Like Yalinda, I normally go at least once a month (2 months this last time), but that's because of the drugs I'm taking. When I was just taking NSAIDS, it was not uncommon to have 3-5 months in between appointments. I'm currently taking plaquenil and enbrel which requires closer monitoring. In any case, I just started taking plaquenil (4 months), but I've heard great things about it. It just takes a long time to kick in. It also has the safest profile of any of the DMARDS--I'd rather take plaquenil than any of the other drugs, including the biologics like enbrel.
Thanks! He did mention Mobic but the NSAIDS seem to all raise my BP, which is borderline high now, so he was reluctant to go that route. I am starting to notice a little bit more stiffness creeping back in the morning. I guess if that gets worse I'll call and see what to do. I'm certainly NOT in any severe pain, but all this is such a change for me I feel like something's not right anyway. I lifted weights for years and ran a couple miles 2-3X a week and now I'm doing good to walk on the treadmill for 20 minutes! Seems to me everything started going downhill after my hysterectomy. Anybody else experience that? I AM 53 years old, but at 50 I was in the best shape of my entire life, and now....
Hi, winwin. I understand how you feel about going downhill fast. I am 55 I went to the Rheumy first when I was 49 with mild symptoms, stiff hands and feet. Now I have so much pain in my knees and hips and back I sometimes have trouble sleeping. And I had to go on disability a year ago. I have an immune problem besides the arhritis, so I can't take any of the good drugs. ( steroids, methatrexate, and all the new ones,Enbrel, Humera etc) Plaquil is helping, but I depend on pain meds, and pennicillin. ( no one knows why it helps) Anyway I used to do every thing, and now it is a big deal if I cook a meal, or do a little housework. the important thing is to keep doing as much as you can without hurting yourself. It's a fine line sometimes.
hi win win in regards to the high bp i am on the methotrexate because i was told i could not go on the other types of meds due to my bp and the effects on my kidneys, so we are killin my liver instead lol (hopefully not?) but my rhuemy told me my choices for meds were more limited due to the bp. and right now i have no bp meds and my bp was 96/60 on saturday and 148/ 88 today so as u see i fluxuate alot.... mtx is powerful drug with side effects and i am still questioning it and my usage every month but i must say my pain is reduced greatly on the med, but i do have side efffects..... good luck and you know come to think of it, september is like what 6-7 weeks away? ugh way to soon for me ~* yalinda
you have the right idea with the shot being a "steroid test" so to speak. at times, doctors will Rx antiinflammatories and even the Enbrel and Humira drugs to "see" if there is a response. many of times that is how a definitive diagnoses is made.
if you respond to steroids, then most likely there is an inflammatory process going on.
the autoimmune diseases like RA and Lupus have pretty much the same treatment plans and medications....many of which are by trial and error unfortunately. but FORTUNATELY there are many MANY medications to run through.
like yourself, i typically do not swell either. only on rare occassion will my joints get very swollen to where a rheummy can "see" the swelling. i asked about that a few weeks ago and my rheummy said, "some people just do not accumulate a lot of fluid in their joints." it's more in your body's makeup the fluid factor.
i wish you the best.
erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
For me, the plaquenil took about 9-10 months to really kick in. But when I started it, I was also put on prednisone 40mg per day. I tapered off of that veryy slowly over about 8 months or so. When i went totally off, I got some mild joint pains and fatigue back but this slowly went away as the plaquenil had a good build up in my system. I never had one side effect of the plaquenil and have been taking it since Feb '04. My rheumy said I will be taking this for a long time as long as I have no ill effects from it. I was out in the sun all day one time and had a bit of a flare while on the plaquenil but it was nothing like before and went away in about a week. And I did use sunscreen and did NOT get a malar rash, so that was great.
I did have a major flare recently, though. But I think it had to do with some spinal epidural injections I had. When they wore off it hit every joint in my body horribly. I even had pain and stifness in my entire spine which isnt really related to lupus so im told. My rheumy said it will go away b/c im on plaquenil and he was right. Its finally just about done and it took about 3 and 1/2 weeks to go away.
I hope you continue to get relief and help from your physicians! ***