Not new to pmr - 2nd bout - need advice & support! | Arthritis Information

 

Hi, I was diagnosed with pmr around 2000 (age 50 or so) after much research on my part and arguing with my MD who kept insisting I was "too young and healthy looking." I proved him wrong. Did the prednisone regimen and was off of it in a short time (somewhere between 6 mos and a yr, can't remember). Fast forward 10 yrs and in April 2010 had a flareup. Won't discuss now my lousy interaction with the rheumatologist. I worked my way down from a high of 10 mg prednisone to 1 mg, got too giddy and stopped it last Monday. Today I'm struggling with what to do as sx are coming back. I don't find the MDs real helpful, they seem to subscribe to a particular formula and as all pmr sufferers know, there is no formula to pmr! I hate the thought of starting back on steroids. It is truly a dangerous drug with possible long-term consequences. But I also hate not being able to live a normal life and do the things I like! I'm writing for input from others struggling with being on steroids. Any advice? Has anyone had success with massage? If so, what type of massage? Sorry this is so long-winded!  Hi- Wondering ,like you, how to keep going and balancing between being on the steroid and resuming normal activities. What do you mean by "giddy?" painful episodes? Fatigue?  Have you considered half an mg of prednisone rather than going from 1 to zero if that is what you did? mybe trying only one half mg and then on quarter mg will get you off better?  Does some stretch type exercise when the pain hits in the area of pain  make a difference either positive or negative? Yoga or Tai chi? This might sound silly but I do the kind of deep breathing exercises used when giving birth and also in yoga and concentrate on where the pain is and get some releif. wonder if my body is relaxing? Maybe carefully reviewing and recording when you are most bothered and how specifically you are bothered and looking for a possible pattern that you can interupt somehow favourably might help. I have found that the weather conditions do have an effect but then I am bothered by allergies too.  Hugs to you in the mean time and very  eager to hear from others at the very stage you are at.  Currently I am now going to one mg from one and a half and do see a pattern that I became aware of when tapering from around 5 mg... ..first two weeks on slow taper ..alternate days old dose new dose and then old new, new, old goes very well after that I have a week or so of ocassioanl bouts  quite severe upper arm pain that wakes me at night and if I have been inactive during the day and then I  start  feeling all  right again  and work up the courage to taper more. Is any one else like this?Shar1945: Can I recommend you not only read older posts here but also go to the British Patient Experience UK site where you will find threads with discussions about this. I'm afraid the truth is that steroids are currently the only way of managing PMR - if you have a relatively mild version, you can often get by with painkillers and gentle exercise but anything more severe doesn't respond to that. I know what I'm talking about - I had it from my early 50s without it being diagnosed for at least 5 years! I too was "too young" aparently at 57 when I finally saw a rheumy who didn't agree with the obvious dx - I was a textbook clinical picture but my bloods have never been abnormal. However - 15mg of pred brought relief in 6 hours! I "managed" - but that was about it and when I was stopped from driving (on another medical questions and wrongly) I realised how limited my life had become - if I couldn't drive to very close, I couldn't get there. And I'm British so that means a lot - we don't use our cars as much as you do inthe US. Then I had a really bad flare and could barely get out of bed never mind walk anywhere!

Steroids are NOT as bad as many people paint them. Used correctly, under proper medical supervision and with care, many patients have very few side-effects. There may be a small amount of weight gain (there are people who put on a LOT of weight, I'm not denying that) but most patients get off them in a few years. Patients who get off them as quickly as you did the first time are more likely to have relapses later. The idea is to get the initial dose down to as low a level as possible that keeps you mobile and reasonably pain-free - which is often well under 10mg/day which is equivalent to what the body would produce itself anyway and not associated with serious side-effects. Once you are below 10mg/day you can try alternate day dosing where you take double the dose on alternate days - if it works for you, it doesn't always, it has even fewer side-effects. The cause of pain in PMR is inflammation - the steroids deal with that. Untreated PMR is associated with an increased incidence of the complication of giant cell arteritis - and the only answer to that is steroids at much higher doses (at least 40 to 60mg/day). Without treatment of GCA, you can go blind and you are certainly very ill. Longterm raised inflammation levels in the body are also associated with an increased rate of several cancers. But basically - it is about quality of life. Steroids may have some nasty side-effects, but so does PMR and the choice at present is take steroids and have a life or try to do without and, often, be an invalid with continuous pain unles the PMR decides it will go into remission. Mine hasn't in 7 or 8 years - and for the last year and a half I have been able to live without every activity hurting. It doesn't kill you - but it certainly makes life a pain! Another site you might find useful is the PMR-GCA UK northeast support site where there are lots of articles about living with PMR and GCA, steroids and the official medical guidelines to the dx and treatment of PMR and GCA. The links are below. We are all different - but PMR patients have a lot of things in common. I appreciate the feedback. I should probably clarify some things. I know I have a relatively mild case this time. The first time I thought I was dying because it took me 20 min to get out of bed and I had a hard time even rolling over, couldn't lift my arms and was in severe pain. This time I'm noticing my legs bother me more especially the heaviness so many have mentioned, and also flank, hip and lower back pain. This 2nd bout actually started in my biceps but they seem better. Like you Mrs E my blood levels have been pretty much normal so they don't ever indicate severe inflammation. After I started doing the research in 2000 I realized I had a textbook dx. What I meant by "giddy" is that I got over-confident when I got to 1 mg and decided to quit taking it. Bad idea. I took 2 mg this a.m. and am going to see how it goes. I can't take NSAIDs as they tear up my stomach so the steroids are all I've got. I've added some supplements like Vit A and magnesium and am going to up my Vit D based on some comments in the forum. I'm also looking at my diet more. I don't eat meat but need to do a better job with the veggies that help support the immune system. I'm able to walk and hike without too much problem. Again, I realize this bout is much milder than the 1st and it was 10 yrs between them. I've been under a lot of stress the past 6 mos (moved from NC to CO, started a new job, recently sold a house) so know that contributes to things as well. My main problem is I hate taking any prescription medication! I'm only on supplements besides the prednisone. I have to admit that what I think is going on is I feel down. It's been hard to get myself going and I know I'm not clinically depressed (I work in the health care field) but everyday I say it's going to be a good day and by the end of the day I'm exhausted and hurting and don't want to go to the gym or swimming, or do much of anything besides eat and sit in front of the TV. I've checked out quite a few of the forums and they are very helpful. So Thank You to all for posting your thoughts and feelings! This is the first time I've written to a message board and I can see the benefit. Thanks for writing back! I explained my "giddy" in the post to Mrs E. I'm going to be smarter this time with the tapering--like I mentioned I took 2 mg today and hope that will take the edge off enough for me to get more active. I tried Tai Chi, liked it but not the instructor. I bought a DVD for the basics but don't seem real motivated. That's my main problem--motivation. I can't do yoga right now due to the pain and total lack of flexibility (which has always been a problem!). I don't seem to have any pattern to my sx. I don't think the weather affects me much but then need to focus on that more to be sure. I've totally changed climates--NC was hot and humid, CO is DRY. It's beautiful here today, about 65 and very sunny. So all in all, don't feel I have resumed normal activities. In NC I was swimming but haven't been able to get myself to do that here yet. My job is too stressful and demanding and at 65 taking way too much of my valuable life! I am hoping to retire at 66 (full retirement for SS in the States) which is only about 9 mos away! Then I can devote most of my day to being "healthy." Living in Boulder, that's sort of the buzz word around here! You would probably find that the gym and swimming are more use in dealing with PMR in the morning! I know it sounds crazy - but the only thing that kept me able to do anything much was going to an aqua aerobics class in the morning which got me moving! I think it is because the movement, warmth and so on as well, leads to vasodilation and the blood supply to the muscles is improved - it has to be compromised in PMR at some level and when I was really bad I had claudication symptoms too, rather more reminiscent of GCA, I can only feel. Bear in mind that this time you may have caught the PMR very early on before it got to a bad level and that could well have contributed to you being able to get the dose down so low.  Hi shar1945,
Sorry your PMR returned. I wonder if stress really does play a large part in this disease.  I've had a lot of stress for the past 7 years, and bingo, wouldn't you know, I get this disease --diagnosed a year ago, but I believe it was developing over the 9 months previous to the diagnosis.

Before diagnosis, I tried massage, acupuncture, and chiropractic but they couldn't stop PMR from happening.  As MrsE says, none of us really want to take prescription drugs, and this is my worst nightmare, getting old and having to take medications! And I don't even consider myself to be that old--I'm 63.  Another problem is that very few people understand or have even heard of PMR, and they tell me I must get off prednisone. It's so frustrating because how can you explain this pain to someone who has never had it? And the fact that prednisone is necessary if you want to live your life?

I have been taking physical therapy, which helps me keep moving. Probably the best thing I've done is p.t. exercises in a Warm Pool; I swim when I finish my exercises. The water is 92 degrees F. The warmth and the water make moving easy. I feel good for hours afterward.

But I sure know exactly what you mean about having trouble getting motivated. There's something about unrelenting, or almost unrelenting pain, that stops me in my tracks. Just knowing that it's going to hurt no matter what I do can turn me into a couch potato.  I had a flare a month or so ago, when I tried to taper too quickly, and it was devastating.  I couldn't get motivated and I couldn't focus on any tasks--the pain let up a tiny bit around 7 p.m., but even going to sleep was not a relief. To get over the flare,  my rheumy prescribed 15mg daily for 3 days, then down to 10 mg for 3 days, then down to 7.5 mg, and the change was miraculous. I felt so much better I wanted to rush out and do everything I didn't feel like doing before. Now I'm down to 7.5 mg and not sure the miracle is holding.  It could have to do with the miserable rainy weather, which definitely makes my osteoarthritis act up, but I'm not sure. The pain is so much like PMR.

I know what you mean about no pattern to your symptoms. I think that is very true of this disease. It's totally unpredictable.

There are a few people on this board who have tried alternate therapies--an anti-inflammatory diet and so on. Maybe they will weigh in on that. The one woman I recall who decided not to use prednisone was bed-ridden for a year.  After I was diagnosed I tried going on the anti-inflammatory diet but the one I was on was way too restrictive for me and I felt like, "if I have to have this disease then darn it, I'm going to eat what I want!" I lasted about 3 weeks on it.  Apparently there is an anti-inflammatory diet that isn't quite as restrictive and I'm in the process of getting that book from the library---the author is Monica Reinagel.

I hope I helped a little.  This site is excellent, the people are receptive, well-informed, and nice, and it helps to talk about our experience with this disease.

Take care,
freesia
freesia2011-03-20 12:13:33freesia, thanks for writing! I was curious about the massage you tried. Was it a particular type of massage? Did it help at all? Mrs E encourages swimming which I love but it's finding the time. Weekends are out due to increased pool demands. Plus I've been in that pool and it's not warm! I need to research the area and find out if there are any warm/therapeutic pools. I agree with you re the meds. I'm a social worker and have worked in the hospice and nursing home fields and it's frightening the number of meds the elderly are on! Upwards of 10 to 20. When I visited homes  folks would bring out shoeboxes and plastic bags full of their meds. Often they had no idea how to take them, meds were expired, etc. I don't want that to happen to me!

The pain, stiffness, and heaviness in my legs brought me back to the prednisone. I thought I could "tough" it out but after a few days of constant discomfort and as I was trudging up my stairs, I realized I was being foolish and headed down the path to a full-blown flareup. Chronic pain is so disabling and disarming--makes me feel so helpless. And I don't do helpless well at all! I was out with a friend last night who is 4 yrs younger than me and she is working at a climbing gym. She has an impressive bicep muscle and appears to be in great shape! That makes me feel even more like a slug and so determined that I have to get my butt moving off the recliner and into the pool and gym! Has anyone tried Nia or Zumba? I have those classes in my area and was going to check them out.

I'm going to stick with the 2 mg for a few days and see how it goes. I'm also going to go back to my MD in a month to have bloodwork and work on getting a bone density test. Also going to increase my Calcium and Vit D.

What a journey we're all on!! Happy First Day of Spring--the nice, warmer weather helps the mood...
shar1945, you are welcome. 
I doubt I'd want to go swimming if the pool and air around it were not warm. I hope it doesn't get crowded--if more than about 4 people show up I spend a lot of time ducking away from swimmers and watching to make sure I don't bump into anyone.

The leg pain you are having sounds exactly like what I had that led to my finally being diagnosed! It was awful--but the worst part was not knowing what was wrong. At least with diagnosis I knew what I had.  I could hardly get into my car...I could sit down and put my right leg in place but had to lift my left leg with my hands and swing it into the car!

This kind of pain and condition do make one feel helpless, and I think that is part of the reason why I don't go out walking, at least not in my neighborhood.

I hope the 2mg works for you but honestly, it doesn't sound like it's enough. I was so gung-ho about getting off prednisone I'd gotten down to 5.5mg when I had the flare. It was awful, and at first I had trouble admitting that pain-wise, I was almost back to where I'd started one year previous.  I was just too incapacitated, though.  I don't want to take prednisone, but my rheumy was really pushing me to get off it because I'm not on bone density drugs, so I was doing it mainly to please her. I refuse to take bisphosphonates and she thinks I should be considering Prolia or Reclast. NO thanks!! I have tooth problems and thyroid issue (that showed up on blood tests in November) and even if I didn't have good excuses, I wouldn't want it unless my bones were breaking. Then I guess I'd have to take something. I don't want to try Fosamax because of GERD (which has been made worse by prednisone).

It must be so scary to see those elderly folks with their boxes and bags of medication. What a nightmare. And I can see how it happens. But it shouldn't !

It's awful when someone like your friend is doing all kinds of exercise and activities--I don't think they realize how discouraged it makes you feel to hear about it or to see their great biceps! I totally understand.  I've experienced that, too. I do ride a stationary bike for about 40 min. every day, but not vigorously. If it hadn't been a habit I'd had for 30 years, it probably would have gone by the wayside.  Before I was diagnosed, my legs bothered me so much I thought perhaps the bike made them worse, so I stopped for a few days and discovered I felt better when I rode the bike! Probably those endorphins.  I've never heard of Nia or Zumba!

Happy First Day of Spring! I'm glad it's here. You're lucky to have nice warm weather. Today it's nice here (in CA) but we've had nothing but rain for quite awhile now.

Hope you are doing better. Keep us posted!
freesia
freesia2011-03-20 08:55:36shar1945, sorry I forgot to say that the massage I had wasn't any specialized kind of massage, just an overall massage concentrating on my legs and arms.

freesia
Nia I have never heard of but my daughter has done Zumba. I gather that Rosemary Conley has added it to her weight loss classes in the UK. I assume what she offers is a low-level version as most people who go to her classes have not done much exercise previously and her class leaders introduce them to the idea with a 20 minute work-out which has to be adapted to suit even the sluggiest couch potato! My daughter's experience of Zumba was that it was fun but very hard work - which suggests to me that if you can do Zumba you probably don't have PMR!!!!