Well, made it to my first appointment with the RD, got off work at 5:30am then drove for 1.5 hours just to get there. Doctor was pretty nice, but he explained to me that at the end of this year he will no longer take my insurance, seems like most doctors are dropping it because they are not paying all the claims. Anyway, they took x rays and blood, the x rays didn't show anything, but I had swelling in my elbows and fingers. He upped my MTX from 7.5 mg to 15 mg and put me on predisone again. My left foot is swelled back up the way it was before, I tried to explain to him that I had just gotten a cortizone shot in that foot and it didn't take the swelling out, but he said the predione should, even though I've been on it before and it didn't do it. Oh well, now just waiting for the blood work to come back.
Phil
Doctor appointments can be really disappointing sometimes. Just the drive would have tired me out! I hope that you find some anwers from your bloodtest. You said it was your first visit. Do you know if it's RA or not? Once we get the answer it helps us find some direction, good luck to you, Rain
Hi Phil
Sorry to hear your appointment wasn't more illuminating. Hopefully your blood tests will provide more information to your RD and yourself.
I'm also sorry to hear your foot has swelled back up again - often a joint will settle right down for weeks/months after a cortisone shot. It might reflect a high level of inflammation activity in your system, which should be confirmed by the blood tests.
You're on an anti-inflammatory drug, aren't you? Do you know whether or not you are already on the highest possible therapeutic dose? If not, upping the dose (under Dr's orders of course) might help a little. Some anti-inflammatories are more potent than others too: I'm on indomethacin (75mg, twice daily), one of the strongest, but of course it comes with a higher side-effects risk too!
In the meantime, feel free to vent here, as we all know how frustrating this disease is!
My inital bloodtest back in May said I had a RF of 65 (I know thats not high compared to some), so hopefully this will tell. The swelling in my foot, after the cortizone shot, only one side went down, the other side stayed swelled up, now both sides are back up.
Nope Wendy, no anti-inflammatory drugs, just predisone, MTX, folic acid and the doctor suggested Alieve (although I told him I had been taken Alieve with no results). Its frustrating that this has went on this long with no clear cut answers. My foot is the only thing that is hurting now and it has been swelled up like this for over 2 months, and my GP, orthepidic and RD hasn't given me a clue what it is.
Phil
Phil, I take 800mg Ibuprofen 3x's daily for the inflamation, which does help some. I also take 500 mg Zantac 2x's daily to aleviate the stomach upset from the Ibuprofen. I didn't realize how much the Ibup. was truly helping until I had to go off of it for two weeks before surgery... I get both by prescriptions. Maybe ask your dr. if something like this is an option. Aleve is Ibuprofen, if I'm not mistaken, but maybe not enough... just a thought.I agree, I think the increase in the dosage should help. My biggest frustration is my left foot, why is it swelled up so big and nothing seems to work to alleviate it. The Orthepidic and RD hasn't given me a clue about it, all the RD said was that next time he see's me (in October) I should be out of the boot I've been wearing to help me walk, plus the fact can't fit that foot into my shoes. The Orth just gave me a cortizone shot and don't go back to him until the 17th of August. just so dang frustrating, paying these guys over and over and over again and they act like its no big deal.
Phil
This is discouraging to say the least. I wonder if seeing a podatrist would make any difference.
With knees and other joints, sometimes fluid builds up. Often they can't find this without a MRI. If you haven't had a MRI of your foot, I really think you need to convince a doctor to order the test.
Or, at least ask if they think there is fluid and whether it can be drained and tested. Sometimes you can get an infection in just one joint. If there is fluid, they can test it and then treat it with an antibiotic.
I think it is very odd that you are having such a singular problem with no good answers. Do some more research. But I think you should really push your doctors for better answers.
Yes it is very baffling, at least to me. I have had x rays, bone scan and Cat scan done on that foot, MRI is the only thing that hasn't been done. The CAT scan showed a black blob, for lack of a better word on the bone in my left foot, but no one would or could say what it is. Thank you for the advice, at my next doctors appointment, going to try and force the issue. Although, I am wondering at this point if I shouldn't call and try to get back in earlier than the 17th.
Phil
I think you should. And, I would push the explanation on the black blob. This is your body and you are paying for these tests. You are paying these doctors. It is not right that they are leaving you in this kind of pain without a better explanation.
CAT scans are supposed to be pretty definitive. I don't know the difference in what a CAT scan and a MRI will read.
Have they also done some extra blood work to rule out Paget's and other things?
When you go in, ask for a complete breakdown of what they have tested for and eliminated as possibilities. Then, ask them, "so what is next, because I don't intend to live with this without a good reason for doing so. This isn't natural and I've come to help from you. Well?"
Push for those answers. There is no reason to settle for living with pain until all avenues have been pressed.
Hi Phil
I agree with Deanna: It seems as though your doctor's aren't doing enough for you. It's also odd you're not on an anti-inflammatory drug, as taking one is usually the first thing the doctor's prescribe! (Check out some arthritis websites.) An anti-inflammatory could help you a lot! (For myself, the indocin has really helped my back pain, to the extent that my back is not inflamed currently.)
I hope you get some answers and good treatment real soon - I recommend throwing a tantrum
Best wishes
If you throw a tantrum, will you post pictures? I'd like to see that.
Only kidding...
I think it would hurt to much to throw a tantrum
Phil
I had to throw a tantrum with my GP... it's the last time I've seen her!! She pissed me off so bad... you have to get mad sometimes.I'm calling my orthepidc surgeon tomorrow, not scheduled to go back until the 17th of August, but going to try and get in this week. The cortizone shot didn't work and if it was going to it should of by now, well actually it did work for about 3-4 days, took the swelling down on only 1 side of my foot, but now its back. Not scheduled to go back to RD until 6th of October, but just don't feel like driving 1.5 hours to get told nothing.
Phil
Hi Phil
Good for you! One thing I've finally learnt (it took a while!) is that I have to speak up for myself when I need urgent medical help, as no-one else can really know how bad I'm feeling.
I hope you get to the bottom of what you need in the way of treatment really soon. Keep fighting for it.
P.S: You're right: throwing a tantrum may not be physically possible, so you might need to make do with a REALLY grumpy voice...
I'm at the point that I really don't care what it is anymore, just want to know what it is for sure. Everytime I look at my left foot and see how mishapened it is, and trying to walk and limping around in pain it just drives me to the point of exhaustion. And the doctors saying "take two aspirin and call me in a month, oh by the way, you have to pay your co-pay before i will see you" just drives me nuts.
Phil
We have a different health system in New Zealand and of course I don't know too much about yours. It sounds pretty terrible what some of you have to go through with your various insurance schemes though. Just what you don't need, on top of your health issues.
I completely understand how you just want to find out exactly you're dealing with. It helps to be able to put a name to the symptoms and then you can read up all about it and feel more in control.
I still wonder if rather than RA, you might have a variant form of inflammatory arthritis? It's just that having one extremely swollen joint (especially the foot) can be a symptom of reactive arthritis. (And reactive arthritis is often treated differently to RA in the early stages, with a long course of antibiotics for instance.) It wouldn't hurt to ask your various doctors if they had considered other types of arthritis, in addition to RA.
I hope you phone call tommorrow gets you an earlier appointment.
All the best,