Today is a bad day for me and I'm wondering if life will ever hold any joy again. It makes me sad and depressed (and old feeling) when friends phone me, all excited to invite me some place. I can't possibly go...not even to a movie at this point. I fear the upcoming holidays because DH is trying to make plans and they involve my being able to walk. Nope, no joy for me at all.
I just finished 15 months on Prednisone. Only been off the med a little over a week now. I thought being "on" the med was bad...for me this is *much* worse! Depression is over the top. I'm crying, listless and just feeling if I don't get better that dying is the only way out for me. Did I mention the *PAIN*? The pain is far worse than when I began the 15 months of medication. It only helped "somewhat" the first 2 months of use.The doctor kept saying just to give it some time.
In addition to the Prednisone, my doctor gave me injections of cortisone in each hip. Did not do a thing! Sleeping pills and muscle relaxers were also prescribed but have done little to help.
Now that I'm done with Prednisone, I see that my pain is actually *worse* than before beginning the med! My doctor has said she can't do anything more for me. She says I need to go to a Pain Management Clinic. Anyone here gone that route? If so, I'd like to hear what that entails. I'm so down at this point I can't get the motivation to even set an appointment.
Please...someone talk to me!
I post how down and depressed I am and Seven (7) people read my post and don't even bother to offer encouragement???!!!! To heck with you people!Hi Deb,
I'm new to this forum, and could not log on for some odd reason until I switched servers.
I know how you feel about looking up from a very deep well. Most days it's hard enough to find your way to the shower, much less make plans to go out and do what we used to do.
I would suggest you find another doctor who can give you the care you need. This disease is horrible, and the re-bounding from the predisone is terrible. It makes you feel like the commercial ad for Cymbalta.
I think the depression and all the symptoms you are talking about, are from not taking the predisone. It sometimes takes two weeks for it to clear your system.
I was just raised to 24 mgs of Medrol from the 8 I was taking, because I was miserable, my scalp hurt, and I could not fight my way out of a paper bag. MY rheumy bumped up the dose, because I looked so bad and my sed rate was back up to 63 from 53. When I was diagnosed it was 80. I have now added Giant Cell to the recipe.
Please make an appointment with another doctor. Perhaps you need to start from the beginning again, and at a dose that will help you and then drop slowly. I also take Ultram which helps with the pain, because I cannot take NSAIDS.
Today, I just decided that I would not let myself and my body give into this, and not make getting off the Predisone a foot race. I would do this more slowly. I've only been diagnosed since February, and my life has not been the same. I do what I can do and my husband, has had to realize I'm not up to socializing. Not because the mind does nto want to, but because the body can't.
Donna, NY
Dear DebJ
Thank all of you that have replied so kindly. Yes, *very kindly* after I showed my backside. I'm very sorry that I snapped with all you. I feel like I've actually snapped from somewhere deep down inside. And yes, the people here are *wonderful* as Georgiana pointed out. The posts I've received have made me feel less alone and have actually brought me down from the awful rage I was feeling inside.
I've been very fortunate up until now to have never suffered from depression...even in a mild form. This morning I suddenly awoke feeling like some monster and have attempted taking it out on the world all day long. Unfortunately, my doctor left early for the day. *She's* the one that should be made aware of how bad I'm feeling...not you people.
Again, my *sincere thanks* for the help and kindness you've offered. (Now I intend to partake in a good stiff drink.)
Deb, so sorry you feel so bad...been there done that.
Do you think you should go back on some amount of pred? I think you should change reumatologists.
I know I keep hammering on the "plaquenel" drug that did wonders for me. I think you should give it a shot.
I know it is soooooo frustrating.
Yes, Plaquenel is a drug I'd be most willing to try. I'd even offer to eat bird droppings at this point if someone thought they'd help!
Deb, You said you've just finished 15 months of prednisone. How about telling us what level you started out and how you tapered to zero. There might be a clue there for suggestions from us. 15 months is a quick recovery from what I've been reading on this forum. Also, it appears there are some doctors who don't know beans about PMR and/or have no empathy for its symptoms. Go get a new one...ask him'her for patient referrals re: PMR.
Here's a good website for understanding all about PMR and the treatments suggested:
www.aafp.org/afp/20000401/2061.html Hope it helps. Hang in there!
PMR is a disease that is very easy to get angry about. I agree you should see another doctor. You mentioned "doctor" so I am not sure you saw a rheumatologist. Maybe in the area of the country you live, PMR is not that prevalent. I do believe it is heredity and in my area of the country it was heavily settled by Scandinavians and Northern European people. I am of that heritage.
My primary doctor first diagnosed PMR and then sent me to a rheumatologist. I think she did so because a rheumatologist would be more up on what new medications were available.
I had so many blood tests to rule out other diseases from the rheumatologist. The first time I went to the rheumy, I think they took 10 vials of blood.
If Prednisone helped you when you first took it, maybe you need to start all over and then taper off more slowly. About the only rule they have for diagnosing PMR is that pain almost vanishes within a day or two. I am 125 miles from my rheumatologist and when she prescribed Prednisone, she called the next day to see what my response was and when she heard, she knew she had diagnosed it correctly. My pain started lifting withing two hours. My shoulders didn't hurt the next day. It was like a miracle pill.
There is a light in the tunnel for some and hopefully you will be one of them. I think I am on the downside. I realize though that I could relapse very quickly. My lower back still hurts, and maybe that is not PMR. But the stiffness in my shoulders and knees is getting weaker.
I can see why you are depressed. Please see another rheumatologist, they may be able to help you. It is just my opinion, but seeing only one doctor who referred you to a pain management clinic doesn't seem the best solution to your pain.
Funny thing about this forum is that there are lots of people looking and not that many do respond. Many people are not good typists or feel their spelling and grammar is not good enough. I don't think we have any grammar police on this forum and wish they would put in their opinions. We want to know how PMR affects them and we could care less about spelling, grammar, etc. I have been on some forums and the grammar police always had to comment. I ignore them. They are just building up their own ego. We need to help each other building up or physical bodies.
I hope you are feeling a bit better today. Mary
Hi, Deb -
I'm sure it is the prednisone withdrawal that is causing you to be so upset. Even a 1 mg. drop can make me look at my "glass" as half empty, instead of half full - that can last a couple of weeks. If you didn't taper off slowly enough, I'd suggest you go back on. What kind of schedule were you on over the 15 months? Perhaps you were reducing too quickly all along.
We are all totally in sympathy with you. It's not an easy disease to live with sometimes.
Hope you're feeling better.
Yes Deb tell us about your prednisone schedule.
How old are you?
Oh, thank you...thank you everyone!!! I so appreciate all your replies!
I was diagnosed by a Rheumatologist through bloodwork as my SED rate was very high. I was put on 10mg. of Prednisone and felt relief from pain in about 2 hours of taking it. In fact, I felt 16 again!
My doctor prescribed a plan to decrease the pills by 1 mg. a month. I was told that *if* I experienced more pain after the decrease to go back *up* 1 mg.
I had a hard time getting below 9 mg. for a while. Finally, I realized that the pills weren't helping *at all* and tapered off 1 mg. a month until I got down to the last 2 mg. That's when the doctor allowed me to taper off 1 mg every 2 weeks. I finished a week ago.
Does this sound "odd" to some of you? I have no idea.
DebJ, I just logged on and am sorry that you felt no empathy in theMost people start at 20 -30 mgs reducing by 2.5 mgs every month. till you get to 10 and than reducing by 1 mg every month.
I think you started at a too low a dose. I think that is the problem.
How old are you ? I was 49 when I got this. It took me 2 years to get down and off. PMR went away and returned 3 years later in a lesser form.
Deb,I'm now 55...54 when this all began. Actually, from the history I gave my doctor, she and I both feel PMR began with me at least a year before (age 53). She and I thought I had horrible arthritis and she prescribed all the arthritic drugs available...of course none worked. It was after she could see I was getting worse that she ordered the extensive blood work that showed the really high SED rate. That's when she said my physcial symptoms and blood work showed I have PMR.
I agree, after reading here, that I most likely didn't recieve a high enough dose of Prednisone for a long enough time. I want to see a *different* rheumatologist and plan to look into that Monday.
Hi Deb,
I just logged on for the first time today and saw your post. I can see that our wonderful forum has come to the rescue as always. Don't ever worry about venting or freaking out, we all do it.
PLEASE SEE ANOTHER DOCTOR!!!!!! I can't say enough about that. I spent 2 years undiagnosed because nobody would listen. I finally found a doctor that did. It may take some effort which I know is extremely hard for you right now, but you have to hang in there and keep trying.
I've been on 10 mg of pred for about a month and a half now and I'm starting to have pain at night that doesn't let me sleep with narcotic pain meds. It's getting worse so I'm going to take 5 mg tonite also and see if that helps. I too worry that once I'm off the pred everything will come back with a vengeance.
I understand your depression. I thought my life was over and to be honest I thoughts about ending it for real crossed my mind, although I knew I wouldn't, I love my family too much.
So PLEASE see another doctor!!!!! If you want to let us know what city or area you live in maybe someone on the forum can send you a private post with a reference to a good doctor, you never know?
PLEASE don't give up, we are all here off and on. I usually post late at night, I'm in Pacific Time (Oregon).
I don't mind saying where I live at all...Lakeland, FL. I'm a patient at a clinic made up of specialists that has a top notch reputation. However, after reading here and thinking back to the "little" things my doctor said or did, I really question whether she's treated a PMR patient before. All I know with certainty is that I *can not* be her learning tool.
I truly appreciate the outpouring of support you've all offered. Even though I still have pain, the support I've gotten here has done *wonders* for me mentally!
Glad to hear you're feeling better & good luck finding a new doctor. I, too, started at 10 mg. and it was such a relief the first few days. Then the pain & stiffness increased again, and I realized it wasn't enough so I went up to 15 mg. and stayed at that for over a month before I started to decrease again. The only thing that can really tell you whether you can decrease your dosage is how you feel - there are no definitive tests to determine if the PMR is gone.
Unfortunately, some people have to decrease before their pain resolves because the negative side effects of prednisone outweigh the discomfort of the PMR symptoms. I've been lucky enough not to feel any significant side effects, however I am always trying to push the dosage lower, but not at the expense of my quality of life. For the first couple of weeks after a decrease, you can't be sure if your pain, fatigue & depression are from the prednisone withdrawal or the PMR! Not an easy disease to deal with!
Please keep us posted on how you are doing.
Deb,Thank all of you again for all the outstanding information and support I've gotten here. You came through for me at a time I desperately needed you. Hopefully, I will be in a position to offer this very kind of support to someone here in the future.
Thankfully, my depression has lifted. Continue to have hip pain, of course. But through info gathered here, I plan to take a new course of action and get a brand new doctor. That gives me such hope!
Sending big hugs to all who've been soooo good to me!