I had been doing so well for about two weeks and thought my disease was truly arrested. The RD was also pleased and "graduated" me to four month appointments instead of two. I thought certainly, if I keep taking the meds that got me to this improved point, I should continue to feel well, right? Even though I've read of so many others who've had bad days, I thought I was different because my disease is relatively mild and was caught earlier on than some. But once again, I'm slammed back to painful days with an ache and spasm that started at my elbow, then moved through the arm and left side of my face and now ecompasses my leg with my heel also aching today. So, is this what I can expect from now on? If the normal path is for symptoms to come and go, how will I know the meds aren't working anymore? Will blood tests always tell? Or will the symptoms become so much worse that it becomes obvious? I know I have no right to complain compared to what many of you deal with on a daily basis, but this stinks. It was hard enough grasping the concept that I'll need medication for the rest of my life, don't ask me to accept that I'm going to have to expose myself to the side-effect dangers and still have pain. One or the other, OK? Rant over.
Take care and I hope you feel better soon
Jesse...I am going throught the same thing right now. I was dianosed early after sudden onset, not any joint damage. My meds worked well and my life was pretty much back to normal. Yesterday things went south. Don't know how long it will last, hopefully not very. I am so disappointed, I really was thinking all of this RA stuff was going to be a thing of the past that beyond meds I wouldn't have to deal with anymore. I was even starting to think that it was all a mistake.
Hope you feel better soon. And thanks for your answer Pin. I mean, I know it wasn't for me, but it might as well have been.Linncn. I spent so many years in denial and didnt take my meds that I'd hate to see anyone do the same. If i had taken my meds in the first place i might not be in the situation i'm in now. Pin Cushion, what was your life like when you didn't take any meds? Did
you have periods of time where it was like you didn't even have RA?
(I'm still trying to sort out how my AP is going).
Could be just a bad week. I have them at times. It doesn't really mean the medication isn't working anymore. If you go a long stretch and your symptoms do not improve or even seem to gradually get worse then it might be time to either increase the medication you are on or change medications all together.
RA for me isn't nearly as bad as it is for many we talk to here. I'm so very thankful for that but I have had it for more than 13 years now. Over time a medication that works great at first will kind of wear off and it take more and more and more of the same medication to get the same results. You can increase it to a point where it can't be increased anymore and then you'll have to move to something a little stronger. It's aggrevating especially when you've were on a medication and doing so well. I've been up and down that road many times. It gets discouraging.
To go around the LONG way to an answer; Yes: This is your life now. It's not really that bad for those of us with a milder for of RA. It's not always easy and it's unpredictable......but it doesn't have to be horrible once you adjust. Keep your chin up.
Good q Gimpy. Pin, I guess this is an example of one of the truely valuable things about this board, to learn from other's experiences. Thanks for caring. I mean that sincerely.When i was first diagnosed I was put on to arthrotec and lived life quite happily but just stopped taking it because i felt fine, I carried on feeling great for months without it but then got ill with pain, swelling and fatigue. Again I was put on sulphasalazine and again I got better over time, you would have thought i had learnt my lesson but i took myself off of it and felt good with no meds. This backwards and forwards with meds went on for a while until I got really sick and ended up at the hospital, all my bloods were highly elevated and i couldnt walk. 6 months of housebound and weekly dr visits were enough to make me see sense. I stopped working, took my meds and was good to myself. I changed my eating habits and let my family look after me. I am allergic to a lot of meds so choosing the right ones is touch and go. Humira wsnt for me but maybe the enbrel will be. I still have BAD RA days but I dont think it would be so if i hadnt been such an idiot in the first place.
I empathize. It has been literally decades since I have been medication free, but was fortunate to have begun treatment under the auspices of a physician who believed in early, aggressive, and continuous treatment. Perhaps I was also "lucky" to have a long familial history of RA and had seen the devastation the disease wrecked on individuals and families.
Pin...I have been soooo tempted to stop my meds. I haven't done it just cuz my RD (and I think some on the board) told me that if you do that, you run the risk of having them not work if you start them up again.
Lovie,after yesterday and today I was afraid of that very thing, what if my meds arent working anymore? So thanks for giving me some hope there. I have read a zillion times that that happens eventually, but I've only been on enbrel since I was dx'x in the spring and it just is too scary to think it's useless so quickly.
Linncn- Unless your meds are causing problems or stop working well for you please dont stop taking them. My aunt is 80 and has RA , she has been on meds most of the last 40 years, she is a wonderful inspiration as she is still living life to the full . She is wheel chair bound but thats only because of other things. She still does all her housework, cooks, shops and loves a party. She phones me all the time making sure i do what the doctor saysThere is always a few seasons you do worse in. Mine happens to be fall & winter. I do better in spring and summer.
Pin Cushion, I love your Grandma!
That's an excellent point Joonie. When the weather changes I feel worse myself.
Don't give up on things too quickly Linn~Chances are good that things will even back out for you soon. Even on the best medications and during my most effective treatments there were still times where I wondered the same thing you are now.
You'll know when things progressively get worse that you need to considered some changes. Often just adding a little something to it might make a huge difference. I know for me just one more pill of MTX can make a difference.
No, I do not think so. It seems to kinda have the same effect that rain does, just that it is brought on by the cold and other things changing.
Like for instance... during the summer time it is the humidity and barometer pressure that seems to effect me. Or when we get a thunder storm to come thru. If I look on weather.com and at the aches & pains chart and it is at a 1 or 2 I know J/RA is going to act up. But if it says 3 or 4 I am usually fine those days, but those are suppose to be the painful days. I am just the opposite.
I love winter, because I hate to sweat, but I dread it too now since I know it makes me not do so well.
Thanks. I won't quit my meds.
Ya know I was thinking about the seasonal thing. Ra hit me suddenly last winter. The last couple days it's been cold and this morning it snowed. Maybe a connection? Also, I started running again a couple of weeks ago. I was pushing myself distance wise, just excited to be doing it again. My legs are ok, but running really involves your whole body, not just knees. Maybe that set my shoulder off. Who knows? Anyway, thanks you guys, you've been an encouragement. Now I can't wait for Jesse to to read your responses so that she can be encouraged as well.
Well, Link... I am glad to know someone on this board can run. Because if it were life or death for me to run, I could not run. Hobble yes, but not a fast hobble.
It is probably the snow, Link.
Hello all. I had just a few minutes to take a look at the posts before I have to go out and I'll respond more fully when I get home. Just wanted you to know right away how much I appreciate the kind, encouraging words. Whew. I feel a bit better already. Words are powerful, aren't they?Words are powerful but understanding what you are going through is more so. We all know how you feel and are here to help.
Take care
Jesse...so sorry to here your struggling with coming to terms with this disease. I am having the same trouble...After seeing my Grandmother suffer year after year, it doesn't give me a lot of hope that I won't as well.Alan
Kara, please try to move up your appointment. March is too long to wait, no question. Do whatever it takes to start treatment, please!
Thanks to all of you who have once again given me encouragement and good advice. The change of seasons theory was interesting, I've heard that before and it makes me wonder, but I think this may have come on because I tried exercising again. Even though I used the treadmill for only 15 minutes, moderately, I think I stirred things up. Very discouraging, but feeling so much better I thought I could start exercising again. Don't know, but maybe it's time to start that journal, as suggested. My niece with lupus advised that too and I never did it for very long. I was thinking all would be well once the meds kicked in. Some of you have noticed a distinct pattern, be it weather, diet or what-have-you. There could be some value in that. I have to keep reminding myself that this is not one of those things that, like an infection, you just treat it for a while and then it's cured and over with. In my mind I get that, but at some level I still can't accept that this may be forever, and could get worse. For now, I'll continue these meds I fear and hate and just be grateful for the many good days I have.
Jesse...maybe you should try Aquatics. I am joining my local gym so that I can get started soon. Heard such good things about it for people with RA.Jesse...I am sorry to hear you are having a difficult.
For over a year my medication has worked. Occasionally I will have issues with my hands or feet. Finally I realized that the week before my menstrual cycle, RA symptoms would rear their ugly head. Each time it happened I became concerned that the medication was no longer working.
I do find that sometimes in hot and humid weather my hands swell and ache.
It is a fear of mine that the medication will no longer work and I will go back to the beginning.
There is always the looming uncertainty...last year at this time I was hobbling around with a cane, unable to work or do much else. I didnt think I would ever get better...in June I went back to work, in Sept. I started taking Karate classes. I am doing pretty damn good..for now. Last week, 2 days before my Humira shot was due I felt worse than I have in almost 5 months. I know it is prob. b/c the weather is changing. Will I be like this every time? Will I get bad when the real cold sets in? Will I stay like that or like I am now? Will I be able to keep working? Will I be able to stay active? I am trying to get into school...if I do get in will I be able to finish? There are so many questions that no one can answer. Only time will tell.
I actually went off all meds in mid april last year because I wondered if the meds were making me worse...NO...they were helping regardless of the side effects..and trust me it didnt take very long at all for me to figure that out.
Should I stop trying to progress and move forward since I can only assume that I am going to keep hitting brick walls along the way? No...I cant do that..I have to keep trying, and just hope that it all will come out okay in the end.
From the begining of this journey with RA I have found that it is all a waiting game..and I have resigned myself to the truth that it is going to continue to be a waiting game.
Sara~Thanks! I actually have access to and do use an elliptical trainer. It was sort of a concsession. When my meds started working and I could move again I thought that if I couldn't run I'd do the next best thing. These past few weeks I'd been feeling so well that I thought I could handle running again and went for it because that's the thing I really like. Maybe this new flare has no connection, I sure hope not. As great as an elliptical trainer is, running is my fave. But, if runing is out, elliptical is in and I will be thankful for it,
Crunchy~ I like your post, I mean, I like your attitude. Thanks for putting it out there.
[QUOTE=Patti37]Finally I realized that the week before my menstrual cycle, RA symptoms would rear their ugly head. Each time it happened I became concerned that the medication was no longer working. [QUOTE=Patti37]
Whoa! You may have something there! In fact, I think there was a discussion about flares DURING menses as well. Maybe that's all it is, since it's the week before (sorry, TMI?). This also show the wisdom of a journal.
It's a bad day today. Aleve didn't do anything for the numbness and neuropathy. If it's just my cycle I guess I'll just have to wait it out. I'm really going to take notice now. Thanks!