Just wanted to report in after my trip. Because I had trouble reducing from 17 1/2 mg to 15 mg of Prednisone the prior week, he said to go on 20 mg for the trip.
We took 2 days on the road to get from Colorado to Minnesota, stopping every hour or so to stretch and walk a little. I did very well. We discovered the "family bathrooms" at the rest area stops, where my husband could go in with me to be sure I could get off the toilet. After a few of those, I explored the handicaped stall in the regular women's room and they were high enough that we didnt need to use the family room. Those and the McDonalds handicapped rooms I discovered were high enough. Gas station rest rooms tended to be unreliable in height so we avoided them.
Had a great visit with my sister, her family, and my brother who came up to join us from Kentucky. I think the visiting lifted my spirits too. I planned and called ahead when we went to a casino and used a wheelchair to get to the bingo area (which I knew was a long walk). That was really helpful. Not sure I could have walked it and also it conserved my energy. The trip home was almost as good. Maybe heading home dampened my spirits some because I seemed to have more pain and stiffness.
Called my rheumy when I got back and he said to go back on the 17 /2 mg. I see him in 2 weeks. Starting reading one of the threads freesia started about tapering. Very useful information. I havent had chance to read the whole thread yet.
Now on th 17 1/2 mg I feel more stiffness and soreness, but glad to see MrE recommended trying to go 2 weeks unless the pain gets unbearable. This is a very helpful site for me.
Hello Nanatjjj and welcome back from that long trip! It sounds as though you had a wonderful time - a great lift for the spirits, not to mention the excitement of exploring all the loos!
Still having trouble distinguishing whether or not I am having PMR flareup symptoms or steroid withdrawel. At first I had mainly fatigue when I went down to the 17 1/2 mg again. I have been on that dose almost 2 weeks now with up and down days as far as pain/stiffness/fatigue. However, a few days ago I was revisited by an old pain, one I refer to as a nerve pain in my left hip that radiates down my leg to the front of my calf (sounds weird). This is a pain that I had last year for about 8 monthes or so long before I was diagnosed with PMR. It finally went away last fall, just a couple of months before my rapid decline with PMR after Christmas.
In addition to this returned pain site, last night I also had pain in both shoulders and the other hip. That worried me. During the night and this a.m. I had much more trouble getting up from the bed. I started to stand, then the hips seemed to lock and I had a hard time standing the final part. I was able to stand straight after a couple of tries each time and then after taking a step or 2 was OK walking to the bathroom. This has scared me a little as it seems more like my first acute episode. I took it easy today and just tried ice on the left hip and some Tylenol. I can walk around the house, but not too far without the pain kicking up, so have not tried to do anything at all.
I see my rheumy Monday, so maybe he can help reassure me or adjust my medicine. I have tried hanging in there for the 2 weeks trial on the reduction to see if it would work. Maybe it is working but my body is still adjusting. It just makes me teary thinking I may be going downhill instead of level or getting better.
Nan - although at the 20/17.5/15 mg/day dose, reduction is expected by the medics to be simple and 2.5mg at a time is what they often say to do, quite a few people over on the UK forum have found difficulty in reducing at that rate even at that level. At least 2 ladies at the start of their PMR journey were put onto 20 or 25 mg to get the pain down and were then told to reduce by 5mg every two weeks to 10mg. They noticed some return of symptoms after the first reduction and at 15mg were very uncomfortable. Now, at a lot of other people's suggestions, they are reducing at a snail's pace - 1mg at a time - and it has worked much better for them so far. They have managed to get their doctors onside to agree and prescribe 1mg tablets (which we tend not to get until much smaller doses) so they can do it.
At that sort of reduction you see if you are struggling and can go back to the previous dose quickly and avoid these relatively big jumps up and down - which have been acknowledged in a study to make the longterm journey to reduce the steroid dose much more difficult. Yes it is slow - but if you steadily go down the doses a tiny step at a time without needing to go back up every few weeks because the dose is too small for the inflammation at the moment then you still achieve the same as jumping down a bigger step, missing and then having to go back up and start again.
Did you read the post I put up with an analogy of how the steroids deal with PMR and a bush fire? If you don't let the fire break out into flames it is much easier to get under control again - and it is a similar thing with PMR. Many people do manage to reduce quickly - others don't and the docs need to bear in mind we are all different.
Good luck when you see him on Monday,
Eileen
The experts say to reduce by not more than 10% of the current dose - so at 20mg, that would be 2mg. You would think that 2.5mg wasn't so different - but for some people it is too much at once. I take a double dose on alternate days, and have been at 20mg on every other day for a while. I tried to reduce by 1mg at a time and it just didn't work. I have changed my attempts at reduction to 1/2mg at a time and doing that I have managed to get from 20 down to 17mg/2 days in the last couple of months. I drop the dose by 1/2mg and stay there for at least 2 weeks, sometimes more, to be sure I have no return of symptoms. Occasionally I feel a bit of stiffness or pain for a day or two which then improves.
You are in the early days of PMR, you have other things going on, and you were quite poorly at the start - many people really struggle in the first 6 months so don't get too upset at the idea you may be going back not forwards. The pain in your leg sounds to be something other than the PMR - another lady in the UK has something similar and everyone, docs and physios, are confident it isn't the PMR although they don't know what it is.
I see I should have checked my last post - forgot I'd edited it in the middle, what an idiot! Put the goodluck wishes at the end and read it straight through! The psot I meant is on the "tapering..." thread at the top of page 3.
Eileen
Hello Nanatjjj and I'm so sorry to hear that in spite of sticking it out at 17.5 for a couple of weeks you are still suffering so much pain. I am a little surprised as I thought (hoped!) you would be able to get back to the 17.5 dose quite easily having been quite comfortable at that dose prior to increasing it to 20 for your trip. I do wonder if the travelling may have set you back here as it was my experience in the early days of PMR that any journey in the car caused great discomfort and only a year ago a coach trip resulted in me not being able to enjoy walking around at all due to incredible pain when I got to the destination.
I suffer from sciatica which manifests as pain from my hip down to my foot. Like you, I had bouts of that type of pain long before PMR and on one occasion years ago the the pain lasted 12 months before resolving spontaneously. I went over on an ankle a couple of years ago which was enough to set it off again and this time it has made for much confusion between what is PMR pain and what is sciatic pain. I have finally had relief for the last 3 weeks and can stand in a supermarket queue again without having to find somewhere to lean to take the weight off my legs! I'm wondering whether this is a result of my big effort to lose weight having released something - time will tell!
However, if you still have pain in both shoulders and the other hip today, then in your case this does sound like PMR pain and MrsE's advice to try smaller reductions may work better for you as it has for a couple of people on the UK forum although I do wonder whether you will need to go back to 20mgs for a couple of weeks in order to stabilise before embarking on a smaller reduction.
My very best wishes for your doctor's appointment tomorrow and I do hope he will have some good avice for you.
Hi Eileen/Pearl. Thanks for your responses. Yes, I do read all the posts and I especially liked the brush fire analogy. Guess yesterday I was worried that my embers were getting stirred up and a fire was starting. Pearl, I do wonder if I need to go back to 20 mg for a short time or alternating with 20 mg. I'll see what the rheumy says. Maybe that would work and then smaller dose reductions like Eileen suggested. I have read all the posts that have various tapering schedules, so I am hoping my rheumy will be open to trying something different. I had a better night last night and was able to sleep a few hours. I was short of breath this a.m. again, and I have not had that for a couple of months now (at least it doesnt seem that I have). I think this is related to overall weakness. I do realize that maybe my body just isnt happy with the current dose, even if it just means a 1 mg change. Before this all happened to me, it would have been hard to understand how your body would react to such small changes. But I tell my family it seems like an invisible line. When you cross it (with just a little too much reduction), your body rebells when you have PMR.
I think the hip pain was related to FM last year and it just decided to rear its head again now. My daughter repaired my leather easy chair for me and I had to use a different chair for 24 hours. This may have set the hip off as the alternate chair was not as comfortable.
Thanks for your support. I will let you know how the appt goes. Saw the rheumy today. He thinks I am doing pretty well and did not want to adjust the Prednisone much. He said to try alternating 17 1/2 with 18 1/2 for a couple of weeks. The way I have been feeling, I wanted to go to 20 mg for 5 days and then reduce by 1 mg at a time. However, I did not say anything. My husband thought I should have spoken up, but I try not to be too assertive unless pushed. I do like him and understand that he wants to get me off the Prednisone as soon as possible.
But I also feel like I am getting to know this PMR better and my body's responses. So time for true confession. I am planning to take 19 mg for at least 3 days before I start that alternating. I have not slept well for 3-4 nights and have had more stiffness and pain. So I need to break this cycle and start to feel better. I know the hip/knee pain is most likely related to FM (I had the very same pain for 8 mos. last year) and he seemed to agree with that. But that pain and the other PMR related ailments have been getting me down.
He did recommend a P.T. Hopefully she is a good one. So far the receptionist I talked to seemed like a ditz! I tried to read to her everything on the prescription (it was long, "muscle weakness, upper and lower extremeties, hip/knee pain L>R" , etc. She said the therapist could only deal with one problem to evaluate at a time so I had to chose the most pressing problem, which I told her was the hip pain. Hopefully the therapist can evaluate everything since i do not want them starting something that could affect the other de-conditioned muscles/joints. I guess I will see Weds morning at my first appointment. I am a little leary of therapists since with FM they can make things worse if they try progressing too rapidly. I think that is most likely true with PMR also.
Hi Nanatjjj
Fibromylagia does seem to have a very close link with PMR. I remember a while ago a few of us on the UK forum met up and a couple of us were experiencing a lot of pain in our shin bones which were extremely painful to the touch and at that time we decided that it was symptomatic of FM. The good news is that it was a passing phase and I haven't had that problem since coming down to the lower doses of Pred.
Do hope that whatever dose you decide to go back to the pain starts resolving but when it does it may be an idea not to reduce from that dose too quickly in order to give the body time to adjust as I don't think the constant yo-yoing helps.
Do hope you start feeling more comfortable soon.
Receptionists who think they are the therapist get up my nose...
Nan - when you go make sure you have the script with you and give it to the therapist and let them decide what needs to be assessed! Say: I have PMR and xxxx! If you had RA and were going you wouldn't have to choose which of all the joints hurt most. If one joint is not right it affects everything else as lots of the UK ladies would remind you and I'm sure you know only to well yourself. The purpose of a physio treatment is to make you move better and I've yet to meet the two-legged person who only uses one leg to walk
Fingers x'd the 3 day boost works and then you can go down gently and reasonably COMFORTABLY
Eileen
Had my first P.T. visit this morning and I really liked the therapist. She asked lots of good questions, assessed the whole problem, and then started treating the bad hip and also some beginning strengthening exercises. I will be going 2-3 X/week for a while. I am hoping this therapy will give my an emotional lift as well.
I am still deciding about the Prednisone. I know I am supposed to follow the doctor's orders to the letter and I do like him, BUT I know my body and I need a boost at this point. So I decided to go to 20 mg again yesterday and I think I will stay on 20 for 5 days or so. Then I am either going to alternate 20 and 19 or just try and do the 1 mg reduction to 19. I think then maybe stay on the 19 for 2 weeks and try to go to 18. I dont see him again for 6 weeks, so I am hoping to get to 17 1/2 by then, just by a different route.
Last night was the first night a slept better (6 hours is better for me). I just cant afford to do without sleep and cope with this pain and stiffness during the day.
The therapist asked me about hydrotherapy and I told her I was anxious to get to the pool as soon as my body would cooperate and give me enough strength to get there, park, walk, get the suit on, get into and out of the pool, get the suit off, get dressed, walk to the car, etc. I just cant do that all now, but it is a goal.
Nanatjjj, I'm glad to hear you went to P.T. and you like the therapist! It's so important to trust and like the person who is working with you.
I think you have to listen to your body re the prednisone tapering. I got into big trouble feeling pressured, and then trying, to taper when my body wasn't ready.
Sleep is so important especially trying to cope with this disease. I'm glad you got a better night's sleep than before.
It's funny you mention hydrotherapy. I just went to the Warm Pool where I do exercises this afternoon and I was thinking the same as you: get there, park, etc etc. Why was going to the pool so much fun when I was a kid, it never was "work" like it is now! But I am always glad I go there, the warm water works miracles.
Hope you continue to enjoy your P.T. !
freesia
Hello Nanatjjj - oh, good, that's half the battle isn't it, actually liking the person who is treating you when you're suffering so! Do hope that things start looking up for you now and that getting back on 20 followed by a slower/smaller reduction this time will help.
Hydrotherapy is great for feeling that ease of movement that you can't get on dry land! I did try it but unfortunately the water was just that bit too hot for me and I felt bad afterwards in a different way - probably wasn't good for my high BP. Wonderful therapy for those who have access to it though.......once you've managed to get the wet costume off!
Hi Pearl and freesia,
Thanks for your comments. I have my second treatment today with the P.T. I did well on the few home exercises she gave me. I also slept 8 hours (awake every 2-3 hours, but back to sleep) the next night and had a morning nap of 1 1/2 hours. Boy was my body overdue for some sleep! Last night woke up at 4 a.m. and could not get back to sleep. But I had a nap yesterday too, so may be gettng off schedule. I will try not to nap today.
Our senior center has a heated pool that is not too hot, so I am looking forward to going there as soon as I am able.
The therapist also has me walking using 2 canes and wants me to get the walking sticks from Walmart. My gait was pretty bad when she tested me and she said I would stand straighter and feel better with 2 canes for a while. I have tried it and it does help me walk better. Of course, you cant carry anything and it is harder to get doors open and manage not to drop one of the canes, but I am adjusting. The hip pain is also decreasing, but that may be due to the little increase in Prednisone I have allowed myself.
Back to the Prednsione. I only stayed on 20 for 3 days (19,20,20,20, then 19 yesterday). I think I can get by on the 19 for a while, then I do not plan to taper more than 10%. Not sure how long I should stay on the 19. I know MrsE said to wait 2 weeks to see my body's reaction to the decrease. But since I had been on the 17 1/2 (though not doing well), I wonder if I should go to 18 1/2 or 18 after 2 weeks on the 19 so that I can try to get to the 17 1/2 before too long (which is the current goal). The doctor wanted me on alternating 17 1/2 with 18 1/2 for 2 weeks to start, but that just did not work out for me. He thought I would then be on 17 1/2 for 4 weeks before I saw him again. That does not seem feasible, but maybe I can be on 17 1/2 for a week or so before I see him. I see him on Monday, June 27, but am leaving for another 2 week trip that Friday. Managing your Prednisone is complicated! But only those on the forums know how much it affects everything about your life when you have PMR!
Nanatjjj
MrsE's advice to stay on each new dose for a couple of weeks is the only way you will know that your body has adjusted to the new dose. If that works then perhaps you can try the same routine for another few days again staying at that new dose for a couple of weeks. The doctor really can't "expect" you to be on 17 1/2 for 4 weeks before you see him again - everyone is different in their response to steroids and it's a case of finding what works for you.
I'm glad to hear the hip pain is resolving and that sounds good advice from the therapist to use two walking sticks for a while. I did a Nordic pole walking course and was amazed at the support of the poles.
As for standing straighter, one area where I put on steroid induced fat was between my shoulder blades, but I never realised just how much that was preventing me from standing up straight until just recently after having lost all the steroid weight.
Take care,
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