Really RA | Arthritis Information

I don't have the red swollen joints , but I do have joint pain. My count was 169 and my RA doctor says it is Ra and there is no reason to do any more tests. When I work out side bending or if I sit for a long while then I can hardly get around, and have lots of pain! The days of squatting down and climbing are way over. I have to get on my knees and then find something to pull myself up with.I take MTX but it makes me fell like crap so I have taken myself off for the past 4 weeks.I doubt my doctor will notice, last time I went he said "Oh, things are looking good" but I can't tell any difference. My next visit I am not going to tell him I haven't been taking meds and see if he thinks I am doing "good". I think if he does I will go crazy! My over all being feels better, but the stiffness and pain are awful. I can't decide which is worse of the two evils. I am scared of the MTX! Thanks, Jessie

Jessie....were you taking the mtx orally? Sometimes oral mtx will make you feel super icky from the side effects of it. You can get mtx injectable and the side effects from it are not that bad. Mine are minimal compared to what I went thru on the oral mst. I am just tired the day after my shot.

What made the doc say things are looking good? Did he do more bloodwork or comparison xrays?

You may have to add a biologic to your mtx to get some better relief for you. It might be something you want to think about.

He never mentions blood work excepy my liver counts, which we are having problems with and yea I fell wipped out too. I'm scared of it causing cancer since it is in my family. He only does a physical exam and when I did insist on a back x-ray he said I had a little artthritis there. My insurance won't pay for any RA medication and we make over the amount to receive any help with Bios. Thanks for your advice. Jessie

Jessie~Don't tell your doctor you've stopped your MTX until after he's done the exam. If he does in fact say you're doing good.....then say "Well that's good to hear; I stopped the MTX because it's obvious it's not making much difference".

I'm not sure how long you've been on MTX; but I've been on it for round about 4 years now. I take 25mg a week. That first year I'll have to say the first couple of days after I took it I just had to dedicate to rest. I knew I'd be really tired and sick feeling the day after so I just went ahead and planned on spending the day watching TV and napping off and on all day. I actually started to look forward to it. Our bodies so badly need the rest.....and by dedicating my Sunday's to nothing but this it made it so much easier to accept the side effect. Fast forward to now and I rarely do that anymore. Occationally I'll take an afternoon nap; but honestly I rarely even do that anymore. My body has adjusted and it's just needed anymore.

MTX has been the most effective medication I've taken including Humira. It's the one medication I do not want to do without. It's made a huge difference for me. If you've only been on it a short while I'd encourage you to give it a little more time before you give up on it.

Hope things improve for you soon. Don't give up. Just because things are bad right now doesn't mean that will be the case a year from now. I think that's a common misconception. Some people seem to be under the impression that once things start to go down hill it only gets worse. Nothing could be further from the truth. Things can change over night. Try to stay positive.

I don't think the docs can tell much from just looking at you, your hands unless you have swollen joints and your fingers are mis-shapened (mine are) my doc wants to know how I feel, what I've been doing etc. If you don't want to take the MTX you probably want to level with him. There are other drugs that might help. I have fatigue 6x2.5 and feel slightly strange, but no other bad things. I'm sorry you are not doing well on MTX, could you split up the dose? Good luck sorting this out. ( I've taken it for 15 years)

sarah

Please be up front with your doctor, as Sarah said there are other
medications. MTX is the only drug that has helped me long term. I am now
on a very high dose 25 mg injection, with only a little nausea/tiredness. I
would take that anyday over a wheelchair.

If you don't like that doctor, find another one. RA is very serious and not
only effects your joints but your heart, lungs, and kidneys. Please get
treatment.

BeeHi - I'm new to all of this. In fact I'm not sure I have RA. For a year and a half, I was increasingly miserable, especially my hands - my right in particular. I noticed that my ankles were so stiff in the mornings that I had trouble getting around. Then, it seemed my hips were coming out of joint - or felt like it when I walked for any length of time. I began getting "hot spots" that were so sore, I could barely stand to touch them. I went from doc to doc; test to test. A hand specialist did a blood test and said I was in the very low range for RA. I saw a rheumatologist: she did her own tests and said the same. She gave me Prednisone - very, very low dose (10m) for 10 days. I absolutely loved that stuff! I could move and had energy! I didn't know I'd gotten so...down. I went off, did more tests...went back on for 7 days...went off and am now muddling along. The last time I saw the RA doc, she said eat right, exercise, make sure I rest and sleep (sleep was just not happening) and come back if I worsened. Now, I think maybe I don't have RA. Maybe I just got lazy and stressed (Katrina hit here) and I'm not aging well. I'm scared to have the diagnosis confirmed and scared not to. Does that make any sense?

Dear Mare, it all makes perfect sense to me. I had 'the stuff' for years before I got help from an RA, I blamed it on everything else. Your stiffness is surely a key to this disease and prednisone is a great help even though we can't 'keep taking it'!

I'm on MTX, remicade and prednisone, currently. You will need to admit and trust your doctor before you can accept all the treatments that will be offered. This is complex and they don't even know what's best for us sometimes, they just need to use their best judgement. and as we are taking meds we must wait out the period for them to 'work'. (sometimes months!)It is the hardest part. good luck though.

sarah

Please don't hide stuff from your dr.. or just Stop taking your meds!!!

The dr will think you're playing games w/ him, and thats going to hurt your trust level w/ him.. so be upfront.. they are not magic healers, but most or hopefully most try their best.

Thats one of the worse things, you can do, be honest, upfront w/ your dr, call them, talk to them, if you need to btwn appts.

Find someone who's good, who will take time w/ you. Meds are NOT an overnight or even monthly cure.. we wish they would be, but they're not..

You can really physically hurt yourself, when you don't tell your dr things and they can't help you, unless you follow the plan and really talk to them. Also, just taking yourself off meds, sometimes, can be dangerous.. I'm bipolar, lol, also RA.. but its a trait of manic-d's to go off their meds.. not good, and trust me, I've learned to stay ON them.

Keep the faith, and people here seem really nice and informative.

Good luck!

Thank you all for your responses. I have so many questions - Can anyone explain the usual pattern for fatigue? Is it usual for a rheumatologist to say "come back when you feel you need to" ? Also, what about mental confusion and forgetfulness, is that part of this? Is constachondritis (sp) usual?

Thanks for your help! I'm realizing I need to talk with people who have had experience - a doctor isn't quite the same. Mare

Dear Mare, I've had a strange kind of fatigue, you are right it is sort of in your head as well as in your body. I'd say it is an unusual feeling. Probably unique to RA. Rheumatologists can be reached on the phone (through their staff) and also they often have a nurse that can give you info on drugs. If my doctor thinks I can take more MTX he will often pass this on through the one nurse that can handle it (she checks with him!). If I need to increase prednisone she can say 'go ahead'. Write down what you want to ask and hand it to him/take it into the office/ phone them!! This is the squeaky wheel system! WE hope to hear more from you (write a new topic)

sarah