Ok, I'm about at the end of my rope. Getting hard to even walk anymore, as both feet hurt all the time, no let up. Getting no help from my doctors, my RD says "just continue on your medication and will see you in October". The Orthopedic still hasn't given me a firm answer on whats wrong with my left foot. This weekend was the worst, woke up just so stiff and sore, hurt all day. I walk like Charlie Chaplin, can't hardly put any weight on either foot now. About ready to give up!! Taking my predisone as prescribed, 10 mg per day, but now it doesn't seem to do anything, I've thought about going back up to 20mg per day, which was what my GP had me on before I got into see the RD. And to tell the truth, when I was on that, had no pain (except left foot), now having swelling in some of my fingers too. Can't take much more of this. I want to get out and do stuff, exercise, but the pain is terrible. When I go to the grocery store have to rush, because jsut being on my feet is agony (which is a good thing at the grocery store, don't spend as much money)
Thanks
Phil
Hi Phil:
Do you take anything for the pain? Sometimes that will help you through until something starts to work. I take oxycontin but I do caution you to stay on as low a dose as you can to help the pain. I know what you feel like as far as your feet go because mine feel like I'm walking with rocks in my shoes. Perhaps upping the prednisone for a short time would help you through as well.
Feel for you.
Caroline
Mainly just aleve, was on loratab, but ran out and doctor will not give me anymore until after the October appointment. Was taking 3-4 a day and it barely touched it. I am contacted my insurance company today and try to let them let me go to an out of network provider, but pay for it in network, someplace closer to home that I can actually go in and see.
Phil
Phil, I cannot believe you are still struggling with this and that you next appointment is not until October. I think you are taking the right action in contacting your insurance company.
If that doesn't help, see if a foot specialist will see you, go to the ER, call the Rheumy's office and tell them you want something done NOW!!!!!!
Don't give up. Also, call your GP and tell him what's going on. Maybe he can get you some real help.
You have the right not to be in pain. I would start with the Rheumatologist. They can prescribe medicine and make adjustments to your medicines over the phone. If you felt better at 20mg, call your rheumatologist and tell them so. They cannot call narcotics in to a pharmacy but there is a lot they can do over the phone.
If that doesn't work try others in your army of doctors. If the rheumatologist cannot help you I would either call your employer about this issue if insurance is through your company or call the insurance about exemptions. Sometimes insurances deal with multiple doctors in a speciality but YOUR plan may not accept them. SOMETIMES, after a bit of fighting you CAN get another doctor covered.
Shandi
Phil, it sounds to me like your doc is treating only the symptoms of your problem, and not the problem itself. Pain medication is a very necessary part of the treatment of RA, but primarily, you need to be on a DMARD (Disease Modifying Anti-Rheumatic Drug). Drugs like Methotrexate, Remicade, Enbrel, and Humira are very effective for reducing the symptoms, and even supressing the progression of the disease.
Sometimes, docs can be complacent and too rushed to really do their patients any good! If this is the only doc you can see...then make him do his job, and demand more aggressive treatment, or a referral to someone else who will provide it.
Best of luck to you...and hang in there. You're not alone.
Hi Phil
My advice for some temporary relief is 1. get STRONG painkillers and 2. get a much higher dose of prednisone, say 60 mg.
I say this because I am currently recovering from a severe flare that attacked all my joints a tonce. I was put on 60 mg prednisone (by my rheumatologist) and given slow-release morphine (every 12 hours) to bring the pain down to a tolerable level.
Also, you should not be working, but resting: I realise you might not have too many options with that though. Please Phil, get yourself some better health care - how about going to your ER? I am starting to worry about your situation :)
Phil; Go ahead. Increase your Predisone and call your RD's office back and let them know that you want to be prescribe some sort of DMARD treatment before your october appointment. It takes time for these to work....so you could slowly; but surely decease your predisone.
I'm real sorry to hear you aren't any better. This isn't good.
Keep in touch.
Thank you all, you all have been a life saver. I think I would of lost my mind if I hadn't of found this site. By the time I got home this morning, my knees were wobbly the pain was so bad. Just taking off my shoes almost brought me to tears. I've been on MTX for 10 weeks now, 3 weeks at 15 mg, before that was on 7.5. I am going to double my dose of pred, just can't help it, can't live/work like this. And unless I hit the lotto tomorrow nite, I have to work.
I am going to see my GP and get another referral to an out of network provider. I talked to my insurance company and they said they would pay for it in network, now just have to find one that will accept that with a co-pay. Had one that wanted 250 up front, then I would be reimburesed in 6 weeks, I just didn't have it. My GP will hopefully prescribe some pain killers, the RD seems to be, well very complacent about all this, he doesn't like my insurance company for one thing (he told me this on my first visit) and plans to drop them at the end of the year.
Once again, thanks for all your support, I live alone and have no one close by, but if I hadn't found this site and heard all your suggestions/same or worse problems, I don't really know what I would of done. Just not use to being in this much pain, constantly. I use to think I had a high tolerance for pain, but this constant, never stop pain is just too much.
Phil
Hi Phil
I'm relieved to hear you might get some pain relief soon (from your GP). Severe pain becomes impossible to deal with after a while. I was in such bad shape before I got the morphine that I commented to my husband that happiness is actually nothing but an absence of pain. If oyu are in pain, it overwhelms every other feeling and thought. I am such a different person now that my pain is being properly treated :)
It just makes me mad to think of the unnecessary pain you're suffering and for how long now. Hopefully, the mtx might kick in any time now (it sometimes takes 12 weeks or so).
Tell us how you go
Arthritis pain is so misunderstood, we have to be so assertive to get adequate pain relief - it makes me mad!
Good luck Phil
I just made a choice, I am upping my predisone myself, can never get my RD to return my calls or give me a straight answer and can't take this anymore. I am on 10mg per day, my question is should I go to 15 mg or 20 mg? When I was on 20mg, it worked great, so not for sure.
And when I talk to my GP, going to ask for pain medicine. It seems that the specialist are very arrogant and not concerned about how you actually feel, but the GP is different.
Phil
Phil; Increasing your MTX might do the trick. I had problems off and on and we eventually increased to 25mg. BUT; I also take Humira.
Ask about Tramadol. It's a little milder and it's not a narcotic. Doctors will often prescribe this faster than a narcotic. It works well for me and many others. It's not as strong as other pain killers.....but it might be worth a try.
Sorry I forgot your were on MTX....it's so hard to remember everyones Meds.
Go Phil!
It's completely unethical for a doctor to not prescribe you pain killers to treat the pain. If you only get given tramadol, don't leave until they promise to prescribe morphine, by phone to your pharmacist, if the tramadol is not sufficient for the pain. Like Lovie says, tramadol is good, but much weaker than morphine and may not 'cut the mustard'. (It didn't for me, but might for you - ask for 100mg, 4 times daily: that dosage will either work, or if it doesn't, you need morphine.)
Re. prednisone, ask if you can get a 'pre-pack' where you start on 60mg and taper down slowly over a month. My bad recent flare didn't respond to 40 mg, so we had to go up to 60mg and then it started to work. I'm back down to 10 mg now and feeling good.
Please let us know how you get on today!
I'm happy to hear that you are going to see a different doctor. Your current one showed his hand when he told you he didn't like your insurance...he has no intention of keeping that payor's insured's as patients. It is clear he is encouraging you to seek help elsewhere. What a louse.
Anyway, I think you might ask if you can up your MTX...even at 15 it's still a fairly low dose. You can go up to 25. PLEASE inquire about enbrel! I was like you...at the end of my rope when I finally agreed to try it (giving myself injections was a scary thought), and now I'm kicking myself for not having done it years sooner!
Hang in there, Phil...there are some really good treatments out there that can bring you much relief. Finding a good doctor is half the battle!