Well, my RD confirmed RA today. He said my anti-ccp was positive. I feel depressed. I was trying to talk myself out of this thinking I am just getting sore from getting older and I need a new mattress! Oh well....he did say the x rays were normal and I do not have any joint damage which is great. I seemed to have caught it early. With the meds and treatment early, he seems pretty postitive that we can slow the progression or even go into remission. Guess I will try to keep my chin up.
Sorry to hear about your DX Shelli; but you pretty much knew it was coming. I'm not sure which is worse...finding out you do have it....or them saying no, you don't and then having to figure out what all the pains about. Hard to say.
What medications are you on now?
I'm so sorry Shelli. I truly understand with all my heart how upsetting it is. My doc won't even believe me and my ccp is 100. What meds are you getting. Listen , I know I've been freaking out but I do believe your docs right and it's great news that your bones are ok. I feel like I'm missing my chance to get the drugs to try and get me into remission because my esr is normal and I don't have swelling. How long have you had your symptoms for?Hey Shelli; we all had the feeling at first...when you actually hear it. But will go away and you will feel better. I am happy you getting meds early and won't get the joint damage I did, due to my not going when I should have. Count your blessings on that :-)
Julie, My very first symptoms starting around 4 months ago. I started having pains in my right shoulder. I thought it was Tedonitis from work. The doctor agreed, gave me some pain pills and it got better a few days after that. Never gave it a second thought. Then just a few weeks ago I had started waking up very stiff and achey. My Mom had severe RA so I knew alot about it just from taking care of her. I could tell some of the sympthoms were similiar to hers but I still thought I had a bad mattress! Then I started getting shooting pains through my arms and shoulder. The night before I finally went back to the doctor, the pain got severe in both my arms all the way up to my shoulders and even pain in the collarbone. I couldn't even sleep it was so bad. I went to the Dr. and he said it sounded like RA. They did lab tests at that point and sent me to the RD. The Rheumy did additional lab tests, x rays, physical exam, and asked me 100 questions. I still haven't had any swelling though. Just all the other stuff!
Lovie. I definately agree. It is kind of disappointing now that it has been confirmed. I was stupid hoping it would just go away! I do feel better also knowing for sure what it is and getting help for it early. I am currently on Naproxen, Predisone, Plaquenil, Folic Acid, and Mex. What's funny is trying to seperate all my meds from my dogs. I don't want to take theirs or them take my by accident! With them and mine both it looks like a medicine cabinet here! Both my dogs have had leg problems and my old dog has arthritis, low thyroid, and a heart murmur. We are all sickies here!
You know it makes me SO mad that RA can present itself in so many different ways and yet they still seem set on using the ARA 4/7 criteria. You know, since this all started, I've been downloading info on RA into my brain like the flippin' Matrix and all I know is that it's different for everyone and yet the Rheumy's are just totally useless. They go on about catching it early and when we bring it to them on a plate they turn us away. Unless your 'lucky' and you have a switched on Rheumy. You know it's bad enough having this without having to talk people into believing you. BTW I've had the shoulder thing - I tried to tell the last Rheumy about it - I said, when my shoulders flared I couldn't lift my arms at all, all I could do was sit on the couch without moving and cry - he said - spare me the amature dramatics dear - what a sweetheart eh?Julie; you seem to stumble upon the rudest doctors in the UK....I would have told that man exactly where to stick it with that amature dramatics comment. What a complete Jackass!!
Please excuse my lanugauge....but I have no other term for that man!!
Shelli, It's always going to be hard after the initial diagnosis, it takes time but most people learn to adapt to and accept the changes RA brings. It is great news that your X-Rays are good and that you have caught this early, many people get stuck in a diagnosis rut which must be so frustrating. There are many great medications out there to get your pain under control and prevent disease progression, plus plenty of people here to listen and understand when things get you down or confuse you.
Julie, where in the UK are you? I wouldn't take that sort of comment from any doctor, how rude!
Oh, Lovie. I do have another term for that man calling himself Julie's rheumy. Several, in fact. Shall I share?
What's your next step, Julie? Do you have an appointment somewhere else? Hopefully with a doctor who has read the hippocratic oath?
There is no excusing bad manners. whether it is a medical person with bad manners, or the head of a country with bad manners, or just plain folk like us...
The Hippocratic oath is only as good as the ink and the paper that it was printed out on and the persons integrity who took it...
My feeling on the subject is that you pay them for their services, they do not pay you...Find a new Doctor who can and will exhibit good manners and true interest in your health.
Actually, I am only on Plaquenil and it is helping me to hold down the fort. NO, it is not the best meds I have taken but for right now it is working.
I have had a bone scan done on myself. I am not sure if it is the same as an Isotopic bone scan but it will pick up any inflammation that might be going on inside and around the boney area in your body.
I hope you are not paying for this test by yourself, this can be a very expensive test. I know in the Uk that you have movement sponsored health insurance. Do they cover the whole cost of the test?
I wish you the best with your Bone Scan and definitely try to get a new doctor...One that shares the same concern for your health as you do.
Keep on plugging in there, you will get where you need to be...Just don't take any more crap from these non-caring individuals.
((((HUGS))))
Toni
Yeah; Julie....everyone that's answered your post about Plaquinel just meant that they them selves had not been on Plaquinel alone....we didn't say it wasn't a good idea.
Definately get your eyes checked....but I'd take it if I was you.
You are more worried about joint damage than anyone here. If that is indeed the case; go ahead and get the precription filled and start now preventing the progression.
It won't work over night; but it does work.
I was first only put on plaqinel when I went to the RD after having my daughter back in '99. My RD said if that does not work for me he would put me on MTX and needless to say the fear of starting MTX and the 3 hour wait to see him for the 10 mins...lol...was more then I wanted to do. So, I stopped going to him. And started going back to a GP. Then I got sent to another RD who started me out on Arava and pred.
Ahhh Julie, mean doctors make me so sad and angry. But at least you know, in no uncertain terms, that you have to continue the search for a dr who can help you..
Plaquenil does work and seldom hurts anyone permanently! Take it. Get your eyes checked in 6 months.
I'm sorry to hear that you got bad news.
I bought a new mattress last year because I couldn't sleep at night because of my hips. I went to a mattress store and asked them to recommend a good mattress for arthritis sufferers. It did help. Not a cure, but I sleep a lot better and my hips don't hurt as often or as bad. I'm sure my meds help too but I still noticed a positive difference.
what mattress cristene? I hate mine. Too hard.Sorry about your diagnosis Shelli...Shelli, I am also sorry you have ra but I was actually relieved with my diagnosis. I had been having major debiitating flares for six months and constantly put on prednisone, not knowing what I had. I was unable to work and my life was pretty much going downhill fast. There were other possible diagnosis that would have been worse- one being bone cancer.so I was relieved when I was told ra. After researching ra I got more scared but then I came here, and the support and knowledge I have gotten from this website has helped me to deal with it. I feel like there are so many options with ra Shelli, that we have good odds of controlling its outcome. Now you know what you are dealing with and we are fortunate to get it diagnosed.
For seronegative people like Julie, I cannot imagine the frustration. RA pain is VERY REAL. For family and doctors to discount it would be so hard. I have needed a lot of support to cope with ra, hopefully in time, I will be better equipped to deal with all of the changes it has caused in my life. Thank God for this board. No one can really understand unless they experience it.
Is it possible for you to basically beg the "old school" rheumy or your GP to at lease prescribe prednisone for you? It's not as if pred is only used for RA. It's used for lots of things--like asthma. Will he not prescribe any RA-specific drugs because of some sort or medical rule orpolitical thing in the UK? I think you said he told you it would be inappropriate. Can you convince him somehow to prescribe for you? Bring him literature regarding the different RA drugs available?
I guess I don't understand the protocol for such things in the UK. It all seems so unfair that you can't just pick your doctor and have insurance pay for it...
Julie, I did have other blood tests ran. My regular MD ran tests on me before he referred me to the RD. They gave me R factor, Ana antibody, sed rate tests, they were all positive. My R factor was positive but I was told it was a low positive. I have to agree with everyone else, that doctor was downright rude. I wouldn't put up with those kinds of comments.
Thanks for the comments of support everyone, I love it here
Murphette and Cristene, I did order a new mattress pad which helps some but I do probably need a whole new mattress. Just don't have the extra $$$ right now. The good ones are expensive.
((((((((Shelli))))))))
Sorry about the dx, but glad you are here with us
Mine has a BIG dip in the middle...lol. It is from where hubby hogs the bed and likes to lay in the middle of the bed. He not only breaks chairs he also breaks mattresses! I sleep on a slope...lol. You should have seen me sleep in the bed when I was pregnant! Let me put in this way I did not need a body pillow to prop my belly up...lol. I just love it when hubby goes to work then I can lay in the "comfortable dip" in the middle of the bed! I know I need a new mattress, but too expensive! I will get me one, one day. Someone needs to invent a mattress that eliminates morning stiffness! I have a new mattress pad but it doesn't seem to be helping much.
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