I was diagnosed with ra by my family doctor about 1.5 months ago, had pain in just about every place in my body, but real bad in my forearms, upper arm and side of both knees, the worse was my feet, after blood test my ra factor was 65 (which doesn't seem high). He prescribed me a course of predisone which did wonders, took all the pain away, but cannot stay on it because of possible side effects. I am now on methotrextrate 7.5 mg for last 5 weeks, but still get pain bad and am still waiting to get in to see a rheumatoligist, but due to insurance issues I have to wait, and do not have the money to pay everything out of pocket.
Also, approx 1 month ago, my left foot began to hurt and swell, as of now my whole foot including my toes are swelled up, cannot even tell I have an ankle, can barely walk on it, have to wear a boot just to get around. The predisone takes away all my pain, except in that foot. They did x rays, but they could not see a fracture, so they did a bone scan and all the radioactive particles went to one section of my left foot. My doctor said that he does not think it is the ra that is causing the issue, but something else going on in that foot, one possibility is bone cancer. I now have to wait to go see an orthepedic surgeon on july 17th, but now this is really eating at me, wondering what this is. Is it possible to be bone cancer and ra or can the ra do this? My brother had ra (it is now in remission) and he said that he had swelling in his feet, but it went away after a few days after taking meds, mine has been constant and no meds has worked.
Thanks
Regular GPs usually don't know much about RA. It is very important that you get into that Rheumatologist. I'm sure you are on the standard getting a referral.
If you haven't got the referral yet, call your insurance company and ask for their medical case manager or whatever equivalent that you have. Explain how bad the problem is. Hopefully, that will speed up the process.
Once you get the referral, they are going to want to work you in as a new patient and that usually takes time because there is so much patient history to take and tests. But again, emphasize that you need some kind of relief.
I don't understand why they took you off the prednisone. That doesn't make since. If you are flaring that bad, you should be on the prednisone and 7.5 mg MTX is a very low dose. MTX also takes quite awhile to have an affect. I think you should go back on the Prednisone and see if the swelling goes down again. If you have cancer, then it wouldn't happen.
Actually, you are too early in the diagnosis process to know exactly what is going on. At least the visit to the ortho is very soon. This is good because they are very knowledgeable about RA. When you see this doctor, bring in all your question and a good description of what is going on and what has been tried.
I wouldn't panic yet. At different points, they gave me all kinds of scary possibilities. But it certainly sounds typical for RA with the exception of the bone scan. But I'm wondering (I don't know) if this might have to do with damage or calcium depletion in that area.
Please hang in there and let us know what happens. I will be very interested in what the ortho doc says. If he thinks its RA related, he may be able to get you in somewhere faster.
Best of luck.
Thank you all for the replies, I've posted on other forums and never heard back. The pain is so bad, almost have to crawl around the house after I get off work. When I was on the predisone, all the pain went away, well except the pain and swelling in my left foot. I've talked to the insurance company and they said for me to pay for it u p front and they will reimburse me...in about 2 months. Just don't have the money. But trying to get into one, unfortuantely its about 100 miles away, just waiting to see if they can fit me in. But thank you all for the replies, I live alone and at times just feel like giving up.pbowman, i was in a very similar situation. it could be RA, but everyone's symptoms are different. while you're waiting to see the doc, here's a list of what helped me get through the pain...
good luck!!! keep us posted.
If you live alone, this might be the time to call your Community Information and Referral number. You can find your local one in the front of your phone book or on the Internet. They can possibly get you some help as far as getting around and getting someone to come in.
I don't understand the insurance's reasoning. Are you not eligible yet? Usually, if you just have your insurance ID number, that is enough to get you into the doctor. Try and see if you can get that.
Also, call the doctor's office, tell them what is going on and the fix you are in, they may be willing to work it out with you.
You have to do something now. You cannot wait for 2 mos.
I don't see how you are working. Can you get any kind of medical leave? If your company offers it, then it only takes a note from your GP. That would allow you to stay off your feet until you get seen.
My advice for your foot? Get a cortisone injection right into those toes. I had the same thing happen, and prednisone pills weren't cutting it, and the whole body cortisone shot didn't do anything. My GP gave me an injection in the toes. Warning: it hurts like the dickens - your toes will turn purple and green. They'll swell up before they go down - but it just might help you when nothing else does. If it's really the RA, it should help you. I couldn't walk. I cried real tears every time I had to stand on that foot - and it's never been that bad since. But I'm on other meds, now, and those toes are still the worst part of my RA. They swell and hurt before anything else.
I am in the same spot as you....one DR says it's RA, another says it's not - but yet they don't know what it is.....very frustrating...
Have DR's tested you for gout? That is one thing they are checking me for....I have the worst problems in my feet too.
My prayers for a correct diagnosis for us ALL! Good luck!
Hi
The others have all given great advice. I just wanted to reassure you that swelling like you have in your foot is scary, but quite normal with these diseases. I have a knee that swells up like a softball, then I have a cortisone shot, it goes down, a month later it swells up... (you get the picture!)
When I was first diagnosed with reactive arthritis 12 yrs ago, my only symptom was a hugely swollen knee. So they thought I had a blood clot, had all the tests to eliminate it etc. Then only this year I had been doing a lot of flying and my calf swelled up hugely. Off to ER I go, they test me for blood clots (due to the air travel) - turns out it was excess fluid that had travelled down from my swollen knee. It helps to have a sense of humour with these diseases!
Anyway, I just wanted to say, hang in there and see a rheumatologist as soon as you can. You're not alone!
Thank you all for the information, it is good to hear from people in the same spot (not that its good that they have this disease). I finally got an appointment to see a rheumatologist, but not until July 31st and its a 100 miles away. My insurance does not have any doctors close by and will not pay for it unless its over 125 miles away. This morning the pain is awful, took a hot bath which helped a little, but now its back, taken NSAIDs, but doesn't do anything. Called my GP for more predisone, but he is reluctant to do it, it helps with everything, but my left foot. Well, anyway, just wanted to say thank you all for the advice.
Hi again.
One more suggestion, could you get a prescription for codiene or tramadol (ultram) from your doctor? One of those should give you some pain relief until your appointment at the end of July. Like you, I find my NSAID (indomethacin) does little for pain (it mainly helps reduce my stiffness and - slightly - inflammation).
I also take Amitrip (amitriptyline) at night, to stop pain waking me. It helps me a lot and your doctor could prescribe that too.
I hope you find some pain relief soon...
Wendy
[QUOTE=Deanna]
If you are flaring that bad, you should be on the prednisone and 7.5 mg MTX is a very low dose. MTX also takes quite awhile to have an affect. I think you should go back on the Prednisone and see if the swelling goes down again.
[/QUOTE]
MTX takes a minimum of 3 months---usually more like 5 or 6 months to really start working...and 7.5 mg (unless you are in your 70's or 80's and very petite) isnt gonna do much good. 12.5 is probably the lowest therapuetic dose I have seen. Do you have any kidney or liver problems that would cause the doctor to perscribe such a low dose?
Nope, no kidney or liver problems, I think its mainly he just doesn't know much about it. I'm calling him on Monday to try and get more predisone and hopefully the rhumatologist will up my MTX dosage or give me something else.