I have to know. I'm still feeling very bad physically, which is messing with me mentally. I honestly cannot envision spending the rest of my life sick and in pain. Does anyone out there feel ok? Would you mind telling me your story (how long and how bad you felt and what it took to get you pain free an feeling well?) thank you. I need a sliver of hope right now.
Things can get better,I am one of those numbers. I have pa, ra, & oa. I was to a point it was so difficult for me to drive, I couldn't hold anything in my hands the pain and swelling were so terrible, I sat and cried and wondered is this what my life is going to be like for the rest of my life?? I couldn't work on my needlecrafts, do my work, housework, could barely walk, it was even painful to go for a car ride, etc. For the longest time I was diagnosed for ra and oa but the pa wasn't recognised for about 4 or more yrs. Once I was sent to an rd, who is very agressive and recognised the pa right away, got onto the right drugs, which took about 2yrs, there was such a big difference, it was like I was a whole different person!!!!
Yes, I am better. I'm into my sixth year with RA now. The first year was by far the worst. The flares were pretty intense. I still remember very clearly one evening when I couldn't get out of a recliner. My shoulders hurt so bad I couldn't get any leverage to lift myself. I was intensely frustrated and felt humiliated. It took about a year to find some relief...with MTX. It kicked in very slowly for me, but finally was quite effective at reducing the frequency and intensity of the flares. The MTX caused some side effects but I was happy to take it to relieve the RA symptoms. Eventually I developed a chronic thrush (Candida) infection and started Humira (...about a year and a half ago)...then slowly reduced the MTX to zero. I'm on Humira alone now and have been doing very well. Currently I'm pretty much RA symptom free about 80% of the time...it typically flares up a bit a couple of days before the Humira injection. The Humira side effects, for me, are less that what I was experiencing with the MTX, so I'm very happy at the moment. I was fortunate to have found a pretty simple straightforward path to a treatment that's working well. I know a lot of others had to experience some dead-ends along the way, which must be very frustrating. But the new medications can be extraordinarily effective...you just have to find what works best for you. I hope you find some relief soon.
Alan
Juliah,
I have met and am beginning a friendship with a girl in my Doc's waiting room. She has had this disease for 7 years now and says that she is completely symptom free at this point. Also says that if it weren't for the reminder she gets weekly as she has to pop her mtx (which she is weaning off of now) and "shoots up" her Humira that she would not even remember that she has this disease anymore.
And I have to say that by looking at her and being around her, you wouldn't know it either. She says that the first couple of years were very rough for her though - did have to have a knee replacement at some point and has been left with one finger that shows some deformity. These things she says are actually due to the fact though that she delayed treatment out of fear for too long.
I am really hanging on to her as the example I am hoping to follow as she says she honestly feels as good as ever now. She is around 55 and extremely active....And NO pred., no nsaids or painkillers anymore....
I know it does not necessarily turn out this way for everyone, but here's hoping...
Melly
Not trying to start a riot or anything but...
After 3 'attacks', one of which ended me up in the ER where 2 shots of morphine didn't touch the pain, I was diagnosed in March of '06 with of severe early onset Palindromic RA. I went from 6 months between attacks to monthly to daily. It was hell and I could do nothing for myself or my family. 4 months after diagnosis I was on a walker at night. By the 5th month I had to use a wheelchair 3 times.
I started AP on 8/25/06.
I feel great. Antibiotics saved my life.
Pip
Alan -
What are you doing for the yeast?
Pip
Hi, I'm feeling better......but i can tell you better than what!! I was so sick 3 months ago i couldn't talk. My RA was messed up because of a severe operation and I didn't think (nor my doc) that anything could be so bad. I'm on a lot (it seems to me), drugs and just now I'm starting to feel better. If you think you can work with them, perhaps you could try the combination of drugs I'm taking??
Lynda
Juliah, when I was originally slammed with RA, just this past February, it hit me hard and fast. I went from having a sore wrist one day, to being hardly able to move any joint in my body (except my jaw) in about a week. I spent four months off and on on crutches, slept in a chair because it hurt my shoulders to much to lay flat. One night it hit my feet and ankles, hips, knees (one of them was the size of a large grapefruit). Not only that but my shoulders, elbows and wrists were all swelled up too. I couldn't get up, had ot have an ambulance take me to the hospital, where I spent three days. The IV dose of steroids was the only thing that got me back to normal, but when it wore off, it was back to the same. I was dianosed about a month or so later, started MTX. That helped, but not enough so I started enbrel. The very next day I was practically back to normal.
It's funny to read your post now, on my way home from church I was getting all frustrated because of ongoing trouble I have with my shoulder. But when I think back to how I was, what I have now is definatly doable, and I am very much capable of having a happy life even with my shoulder pain.
I've had my hands go bad twice and my wrist once over the last four months. Not too bad, condsidering. Don't let discouragement get the better of you, Juliah. Things can and very often do get better.
Thanks for reminding me of that.
Linda
Thank you all so much for writing. I feel like I'm in the midst of my first complete mental breakdown and feel despondent beyond words. I can't see past my tears and misery right now. It really helps to hear your stories of hope. love,j
Dear Juliah,
I feel so badly for you. Your story sounds a lot like mine. Including the depression. It's been 5 years and my pain IS finally becoming manageable. I won't try and tell you it is always great and that the depression doesn't knock me back down the black hole again from time to time. But MANAGEABLE is so much better than the constant agonizing pain. The feeling of dread at having to go through one more day, let alone a lifetime of this kind of pain, is what I have the hardest time managing now.
For those of us with severe depression along w/RA, the dread/fear can be just as debilitating, as you well know. Lexapro has helped me tremendously and I had been on a myriad of AD drugs before and this one has really helped.
I just wanted to tell you, yes, it will get better, I promise.
xoxoxoxo
Crispy
To Pip:
The Candida problem disappeared when I stopped the MTX and hasn't occurred with the Humira.
Alan
Julia~ I was first diagnosed when my daugher was only 6 months old., it came on so hard and fast that I could not lift her out of her crib. It was a horrible first couple of months after diagnosis but it did get better. It just takes some time to get the right meds into your system. I first started Humira, it'll be 2 years in October and before Humira, I could not straighten my arms at all. The furthest I could straighten them was probably about 45 degrees but after I had started on being on both Humira and Mtx I noticed a HUGE difference. I could straighten my arms again and with about a dozen exceptions I have felt pretty normal. Being dxd with RA as with any chronic disease is VERY overwhelming. But with time, and the right meds it can typically be controlled. Just remember that we are here for you whenever you need us. Dont be afraid to also talk to your husband and tell him how you are feeling. Im sure it is hard for him to see his wife hurting.
Nothing seems to change FAST. When I first came down with this, it hit HARD, and it was months before I really realized that I was in fact, more mobile, and had LESS pain. Sometimes I wonder what it would be like to have NO pain. I know that it is different for everyone and sometimes you just need to find the right meds, and sometimes that means finding the right doctor.Hey Julia, as you have read it is very possible to feel better than you
dor ight now, and the odds are you will. I think my RA had a very slow
onset and then once it got some momentum it took over. The low point
for me was not not being able to get out of the tub one day---it was
the debilitating depression I felt for months after my diagnosis. I was
(and still am on, but less) 20mg MTX and 400mg plaquenil, and I was
lucky because they both worked and almost right away. 8 months later I
was having the occasional day that was painfree, and a lot of my other
symptoms, like stiffness, were gone. It wasn't until a few months after
I started AP my depression went away. I'm on a bit of an AP
rollercoaster at the moment as I switch from one drug therapy (mtx and
plaquenil) to the new one (Minocin), but I have to say my pain free
days are getting more frequent. Like today! It's not totally pain free
but it's pretty darn good! And my fatigue is almost completely gone (I
still have one day of it, but it's always after I take the MTX so I'm
pretty sure it's a drug side effect).
There are many RA success stories. Like people say, eventually you will
find a treatment or drug combination that works for you. I think once
you're not being assaulted by RA pain and your abilities get to be more
you will feel more in control of your life and the future will look
more hopeful. Also, education is an empowering thing. Learn as much as
you can about the disease and treatment options.
I know it's not popular to say so, but a small amount of people do get
cured from RA. Some people go into spontaneous, permanent remission. A
few people have been cured by freak things like bee stings and uranium.
Some people do the AP route, go into remission for a long time and then
stop taking any drugs and they're fine. Some people have been cured
through stem cell therapy. So it's not impossible, just somewhat unlikey and difficult.
Please hang in there. You WILL feel better eventually.
I found this study...Remission in rheumatoid arthritis: wishful thinking or clinical reality?
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowD etailView&TermToSearch=16325659&ordinalpos=1&itool=EntrezSys tem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlu s
I found this part to be interesting and quite positive..
Traditional DMARDs often provide symptom relief, improvements in physical function, and the slowing of radiographic progression in patients with RA, but rarely lead to the complete cessation of RA activity. Remission, as defined by the ACR criteria, has been observed in 7 to 22% of patients treated with traditional DMARD monotherapy (ie, gold, penicillamine, methotrexate [MTX], cyclosporine A, or sulfasalazine), but these remissions have often been short-lived. Treatments with DMARD combinations, biologic monotherapy, and biologic combination therapy with MTX offer greater hope and may facilitate the higher rates of remission. Clinical trial results have shown that newer DMARDs such as leflunomide or the combination of multiple DMARDs can generally elicit greater EULAR remission rates (ranging from 13 to 42%) than monotherapies. Biologic combinations with MTX have also been shown to induce significant remission (as defined by the EULAR criteria) in RA patients, with a 31% rate observed with infliximab (Remicade) plus MTX at 54 weeks, a 50% rate observed for adalimumab(Humira) plus MTX after 2 years of therapy, and a 41% rate observed for etanercept(Enbrel) plus MTX after 2 years of therapy.
Lynn
Dear Julia,
It seems as if everyone here has been where you're at now. I was DXed with RA in 1964 at the age of 7, and have had so many ups and downs. Some of the downs cause us to fear that it will remain so without relief, and our ups fill us with elation, and sometimes the fear that it won't last.
Presently, I'm on MTX, Plaquenil, Diclofenac, as well as folic acid, prozac, bupropian (anti-depressant), pain meds, AP, et al. Fool that I am, I first came on this site to share what I thought was helping me, and yes, I was also selling it because I was convinced it worked for me. In my elation I thought everyone could benefit from what I took, but was soon taken to task, and rightfully so. My exuberance, part of the high points of my depression, made me think that I had come across some magical cure. As I leveled off, I realized I was doing what so many others had done to me over the years, and was ashamed of myself. Continuing to read the posts, I realized there was so much more here that I was able to learn and to empathize with others. There's a vast fountain of knowledge here, but more importantly, there's understanding and compassion. The latter can not be found in any book or article.
Yes, there are times when you will not want to go on living with this disease, and that seems to make the good days or remissions all the more sweeter. Those days will appear, and I hope that you will be able to enjoy them.
God bless.
I am a rare person. I have Intrinsic asthma that keeps me from taking medications.
I have been sick over 2 years, tried so many non tnf (think those are the letters) drugs. The only one that doesn't make my body swell up with 100 times worse ra and make my muscles swell is prednisone.
I have another appointment with the rhummy this week where we will go over other options.
Mine is rare as i have a chemical problem. I have to worry about chemicals in my food (it's in all foods that arne't organic) and what I breath.
It's a cycle for me, I am the same over 2 years later but pred does make it so i can get around.
I go shopping for groceries (has to have driving buggy in store) and i go visit, out to eat etc. Just can't drive or walk more than about 5 min at a time.
After you are sick for some time, you tend to learn to live with things and work around things.
I do hope you get better and what i have never hits anyone here.
God bless.
My RA started about 5 years ago...only I didn't know I had RA. I spent the summer virtually not being able to get off the couch. I dragged myself to work somedays on crutches. I tried all kinds of wacky treatment...saw my PCP. I found no relief. I decided to become a vegetarian and the symptoms went away. Was there a correlation? I have no idea.
However, about a year and a half ago the symptoms returned with a vegeance. I could not even open the front door to get out of the house in the morning. There were so many things I just could not do. I finally went to a rheumatologist who diagnosed my RA. I decided to try MTX and the rest is history. The MTX worked fairly quickly. A year later I am virtually pain free. I feel as if I have my life back.
Everyday I remain hopeful that my life will stay this way. However, I do know how quickly things can change.
Juliah- I was realy ill some years back and was completly bedridden, I then advanced to a wheelchair and then just my cane.I have fought bad effects of medication and allergies to them. I stopped everything I was on and for some unknown reason I am better. I am NOT saying stop your meds, I am just saying that there is no rhyme or reason for anything with RA. Life will get better for you, you will learn to live life slightly differently but it can be good.There are bads days like with everything else but be kind to yourself.Julia, just wanted to add: I was diagnosed in March of '06. I was a mess. I was in agony. I would sit on the couch and cry all night because I didn't want to wake everyone in my house. I couldn't walk down the stairs in my house because my knees felt like they were going to dislocate. I had to slide down the stairs on my butt and crawl to the couch. I want to say though that after some ups and downs, tweaking my meds, my dr. told me in July that based on my recent bloodworks and his exam of me, I am in remission. I don't think I've felt this good in years - YEARS. I never really knew how bad I felt, it was gradual. The pain came on overnight though. Currently I am on Arava daily, and ENbrel injections weekly. My RD believes being aggressive. As of yet I have no permanent joint damage anywhere. He said technically I could stop my meds but the rA would probably return and do damage so since I have no side effects from my drugs, keep taking them. Honestly lately I hve felt so good that I forget sometimes to take my meds! I have started walkng three miles a day Monday - Friday. I do think that part of my help was a reduction in stress. Thekids have been on summer break so I feel less pressure on me. We'll see how things go as they start up again this coming week. PLEASE don't give up hope for remissoin, it is possible. Listen to your body, if you feel tired, rest, if you feel pain, tell your dr. Don't settle that this is the hand you were dealt and that's that. PLEASE take care of yourself.Juliah,
Things do get better, you just have to find the right med combo like everyone has said. For me the lucky combo seems to be Arava and Plaquenil. It's taken almost a year to get it right (I was allergic to MTX, which we tried first and sulfasalazine did very little then stopped doing anything) but compared with how I was 3 months ago I'm like a new person as long as I don't do too much.
Now I feel better I find it much harder to pace myself and get upset when I hurt for days after. All my own fault but I really should start remembering that I am not invincible and better is not cured!