After 10 mgs of pred did nothing for my pain my rheumy put me on methylprednisolone 4mgs 2x's a day. That didn't work so now I'm up to 16 mgs. a day and it's still not working well. I think it's working a little bit. Should my pain be completely gone? I'm trying to gauge it by asking myself if I could go back to work yet. The answer is no. I don't understand what I should expect. I'll have to call th dr. tomorrow.eeekkk my b/f was put on methlypednisolone ONCE, and he had a hooorrrriibbllleee reaction. I'm glad you didn't, that was some nasty stuff. I don't think steriods really get rid of all the pain, you may be at the point where you just have to have some pain meds on top of it all. Kinda sucky, I know. 16mg isn't a whole lot either though. In the end, I think you're going to just have to ask your Doc. He's going to be the better judge of medication. Just make sure you REALLY let him know how you're feeling, and how you WANT to feel. :) Good luck!I'm one of those people who just never received a lot of relief
from steroids, so maybe you're not either. I hear everyone else
saying how great it is, but I have to be on at least 40 mgs to get
any reduction in my RA symptoms. For me, the prednisone usually works very well. I use it periodically, usually for about 1 week, starting off at a high dosage 25/30mg and tapering it down to 20, 15, 10, 5, gone. These are usually referred to as prednisone packs, and for the most part, they will tamper down a flair better than anything else. They have rather difficult side-effects, like edginess and sleeplessness,etc. Everyone is different. Good luck.. It should take the swelling and stiffness down. For most people that gets rid of most of the pain. A pain killer added to the mix should make you stop hurting.
There is always some pain, but it shouldn't be unbearable. If you are in a bad flare though, it can be. If I overdo, I will get like that. So, I have to force myself to rest even though I find it incredibly boring to do so. But it is better than pumping in more medications.
Communicating with your doctor is essential because if you don't make them aware of how much pain you are in, you're not going to get the best overall treatment.
The thing is I'm in a never ending flare. It's a nightmare. I have pain in my hands from the time I wake up until I go to bed. I've been like this for months.
I thought prednisone WAS a pain killer. I didn't know I had to take anything else with it. I can't believe my rheumy didn't tell me this. I'm about at the point of losing it but I'm afraid if I start crying I won't be able to stop
Sometimes, our Rheumys don't realize how sick we are. When I go in there, I don't look sick. My blood pressure might be up a little and I walk with a cane. But it is only be what I tell them that they realize how bad off I am. Sometimes, I must be very insistent that they do something, take xrays, try something different and I believe my doctor is very good.
There are some people that have found it a great help to log their daily symptoms. But if you feel that bad, I think you should get into your doctor right away. It shouldn't be that way all the time.
Prednisone alone is never enough. They need to add MTX or Arava, possibly Plaquenil, and maybe a biologic. You should have xrays of your hands done and take all the precautions to protect them. Then, insist on some kind of pain reliever like Mobic or Celebrex. If those don't work, then ask for Vicodin or something similar.
Pain relief with RA is done in layers. You use all the natural remedies that you can. You get the RA under control. And, you have to use pain killers when all else fails. You also have to balance rest and exercise. It is complicated to treat from the doctor's view and the patient's.
Unfortunately, no one tells us anything. Most of us learned from researching it on the Internet or having friends on the board.
But one thing is for sure, they can do more for you and you don't have to continue to live like this.
Deanna,
I've been on Plaquenil for 3 1/2 months and mtx for almost 2months. My symtoms haven't changed. I've been in this much pain since last December. The MRI I had in May showed erosions, joint fusing and other things I don't remember. I've tried different nsaids but they don't work for me. Celebrex didn't either but I hadn't started the dmarads when I was taking it. Maybe I should go back on it.
You're right. When I see the rheumy next week I'm going to tell him that he's got to do something about this pain. I'm supposed to fly out to my family in a couple of weeks and normally I'm beside myself with joy, now I can't bear the thought of sitting on that plane for 6 hours.
MTX can take longer than 2 months to be effective. I didn't really notice a big difference with the Plaquenil although I feel like it helps. I'm glad to hear that you are seeing your doctor real soon.
If you have Celebrex on hand, it might be worth trying. Be sure you tell your doctor how little relief you are getting and also that you are flying in a couple of weeks. That can be really hard on one's body. I suspect that even if he changes your meds, hopefully considering adding a biologic, that he should give you something for pain especially with the upcoming travel. Sitting in one position can really play havoc on you.
Also, prepare your family for the need to let you rest once you get there. This is an absolute need. Try to get someone to have a place where you can take a break from activities when you start to tire. It will make it so much easier on you and less stressful.
Deanna, thanks for all the advice. It really helped Miles, Please be patient. Ask the many people on this board that took me through the first year. All I did was get worse. Major pain - I had hit bottom on the depression scale. I am better but it takes a long time. You will get better too. They gradually find the right med mix. No, I am not who I was, but I am not in agony 24/7. RoxanneThanks Roxy, it helps tremendously to know I'm not alone! Sure is frustrating though.
Janie,
I missed your question. I wish this site would go back to notifying you when a topic is replied to.
You sound like me, but worse in your response to the medications. We've both been on prednisone for the same amount of time and they are really worried about damage to my bones. They are afraid that I will get bone necrosis. So far, it's been ok. But I am also struggling to taper done on the prednisone. I am not very successful.
But, I am not having to go up to 50mg prednisone. That is extreme. I know that they consider me maxed out on my medicines. I don't see Plaquenil, MTX or Arava in your list. I'm not clear if they have tried these in combination with the biologics. I am at 25mg of MTX once a week, 400mg of Plaquenil daily. I am not at the extreme of pain medications that you are.
There are some newer medicines out there for treating FM. My daughter is on Soma, but it is sedating. It does help with the pain as it is a strong muscle relaxer. I have friends on other medications, but I don't know their names. My doctor also has me on Nortipline and Clonazeapam to help me sleep soundly. This is extremely important. If you are not sleeping soundly (i.e., you must go into REM sleep), then you are going to hurt worse.
When I got really bad, with inflammation in my heart and lungs, they decided to do a sleep study. I have mild sleep apnea so I was never sleeping soundly. This might be worth discussing with your doctor as you might not even be aware of it. If others tell you that you snore loudly and you have also gained weight (and who hasn't), then it could be a part of the problem. I did improve when they added the CPAP machine. They sent me to a Pulmonologist to investigate this. It is very easy to have lung problems develop incidiously. I was having a lot of chest pain. But it is something you might want to talk over with your doctor.
The other thing I do is try to keep moving. I don't sit, stand or lie down for long. Also, any areas that are causing you pain, say your knees, etc. should be addressed. You might need xrays or MRIs is a particular joint is causing problems.
Pain specialist can be of great help. I also feel that my Rheumy has run out of options and since I have to change doctors anyway, I am looking forward to a new opinion. Some Rheumys don't do much for FM. You might want to find someone who is up on the latest treatment for that. It may be beneficial to consult with a Naturalpathic doctor. I have friends with Chronic Fatigue Syndrome, which is very close in its symptoms to FM, that have gained significant relief by adding one of these doctors to their medical team.
Physical therapy and massage can really help. If you can tolerate swimming or can get a referral to water therapy, you might find some relief there. With FM, moving those muscles is important. But they are fragile and it helps to have a physical therapist work with you to learn how to exercise so that you don't hurt yourself and you do improve your condition.
I regulary see a Cardiologist for heart problems and high blood pressure. You might want to see if you can get a referral to a dietician to help control your pre-diabetic condition.
In summary, the hardest thing to break is the cycle of fatigue, sleep, fatigue. And, of course, the pain. My daughter is at a much higher dose of pain medicines. She is at 100 mg morphine a day, plus the Soma and oxycotin. This makes her sleep a lot. This is not the route I want to take, but people's pain levels are experienced differently.
I hope that this helps with giving you some new ideas as to what to try. I also try to find distracting activities that I enjoy. For instance, talking on the phone seems to take the thoughts of pain away.