Do any of you have trouble with joints other than neck, shoulders and hips? Now I seem to be having pain in most joints – fingers, feet, elbows, wrists, etc. Is that PMR too? First I had excruciating pain in my neck, shoulder girdle and upper arms, then after about 1 ½ years I began to feel much better. Now, all my joints hurt, I ache, and I am more stiff than I ever was – all over. It does go away when I get up & moving – but you should see me try to get up from a chair or out of bed – it’s almost comical. I have been walking more; could that be the reason? There doesn’t seem to be any physical change in my joints – they just hurt. Thanks for your insights. Eliza
My second bout with (much milder) PMR involved my wrists and fingers. very stiff during most of the day. Recently one toe started to act up.
Does your hands feel better after taking with prednisone? If not it could be something else.
That is interesting - thank you. It is just one more thing that makes me think I have PMR even though my rheumatologist won't give me a diagnosis. The reasons are that I am only 53 and my blood work is normal.
Oh yes - from the beginning prednisone gives me relief the day I start taking it. Even shots in my shoulders took the stiffness out of my ankles. Prednisone has always been like a miracle for me.
Thank you Marianne,
Eliza :- )
Hi Eliza, Welcome I have had diagnosis of PMR since dec 05 and I am feeling much better. But in that time i really tried at times to ignore the fact that I had PMR and keep up my walking, swimming and yoga.Hi Zali,
Both you and Marianne describe exactly what is happening to me; milder than before, more joints, trouble will hills, fatigue, aches & all. I'm grateful to you for taking the time to answer. Since my symptoms are some different than they used to be, I was wondering if perhaps I did have something else. From what you say, I still fit PMR, even at this stage. Pretty much everyone else on this board sounds like me at one time or another too. I so wish I could get a diagnosis out of my rheumy. All he'll say is, it could be PMR, but it's unlikely.
I have another appointment next Wednesday. He's thinking it'll be the last one since three months ago I was doing pretty well. If he still won't venture a guess as to what I've got, I'm wondering if I should get a second opinion. A year ago I was nearly disabled by this - it just seems like someone should try to figure out what it is?
I know my primary care physician would still give me prednisone, but this disease is so peculiar I would like my docs to be watching out for problems that can come with it.
Thanks so much! You folks are so nice. I don't know what I'd do without this board.
From Eliza, in the Pacific Northwest :- )
Eliza,
I was diagnosed three months ago after difficulty with the torso area. Getting out of a car was a joke, and my arms and shoulder's hurt to put them up in front of me. I had pain in the wrists which I thought was the start of carpel tunnel.
My rheumatogist took one look at me, asked me to raise my arms, do a deep knee bend, and cross my legs. Then, he told me he thought he knew what I had. He did a stat blood test, and my Sed rate was 80. He also did a test for blood clotting traits, and two of the tests came back positive. Plus, he told me that if I had PMR that withing two days of taking the Medrol, that I would feel better and I did.
After six weeks of treatment, and with an effort to decrease the dose, my Sed rate is now 36. Still not normal, but better. I've had a nagging pain in my lower spine, that X-rays show that it is not a disc issue. It seems to bother me more, when my morning dose of Medrol starts to wear off.
It's hard to feel crappy and in pain, and no one can give a definitive diagnosis. Actually, I was glad to hear that what I had was real, not a runaway mind.
Donna, NY
My knees really had it bad. It was because I stressed them. Before that my lower back and groin area hurt for about six or eight months. Then my knees and then my shoulders.
Within three hours of taking prednisone my arms started feeling better and within two days, I didn't have any pain. Then a week later I got a catch in my back right at my waist which went away in about five days. By then I was downsizing on the prednisone and I started to feel some aches in my hips and groin area. The knee pain went away with the arm pain.
Which leads me to believe...PMR had been present for maybe a year with the hips and groin and are going to take longer to heal. Whereas, my knees hurt only for four months and my arms about three before I was diagnosed with PMR and those areas feel fine.
I have had lower back pain for quite some time...maybe four years. And about that time I had high Alkaline Phosphate readings from my liver tests and did further testing but nothing showed up.
One one site I read that high Alkaline Phosphates show up in PMR. I also have a pressure problem in my pelvic area. I think when that does away, if ever...the PMR will have gone away. I really think that it did start about four years ago in a milder form and hit full force last August.
Mary
You all have helped me so much, and you're right about feeling bad but no one will say you have anything - frustrating. I'll be curious to see what the rheumy says this time. If I get nowhere, he must just have a self-imposed rule not to give a dx unless the blood tests and his age criteria fit the norm. Then I may go get a second opinion. I think it would make me feel better - psychologically anyway.
Thank you so much for helping me. I'm primed and ready for this appointment!
Eliza
Isn't it amazing how some doctors will get completly fixed on the AGE factor. My rheumatologist (who I like) was also hesitant to diagnose PMR because I was 52 when I first saw him-that was last April 2006. But, because of the fast response to prednisone, he conceded that this was the correct diagnosis. However, he is now leaning toward RA possiblities and has put me on Enbrel to try to get me off prednisone. As you might read in some of the posts on this site, there a number of folks in their 40's that have PMR. This stuff seems to baffle most doctors, even seasoned rheumatologists. Good luck to you in the fight with PMR!!
Marla
I just had an appointment with my rheumatologist and I am satisfied with what he said. He was sure I had some sort of inflammatory arthritis going on, inspite of my normal bloodwork. Just hearing that from him made me feel better. I knew that he wasn't being rigid about the normal blood results, or my age this time.
He said it could very well be PMR, but there was no way to difinitively tell. He said it could also be an inflammatory arthritis that I will always have to deal with, unlike the PMR that's supposed to go away after awhile. For that reason, it was impossible to give me any certain diagnosis. He was certain it was not an arthritis that caused joint damage so that was very good.
So, he put me on a short week-long run of prednisone and also sulfazine with an increasing dose. He said if the sulfazine helped after a few months, he'd drop the dose back gradually so I was on the least dose necessary.
I took this sulfazine once before. It was about that time I had rashes, brain trouble etc. I guess I'll find out now if it was the sulfazine!
I am feeling good about this visit. I thank you all for patiently letting me vent and ask questions. You all are awesome!
Eliza :- )
Eliza does so your reumy does not think it is RA? I just went to 2 of them and they said 10 percent of PMR patients end up with RA (I am one of the ones)
Is sulfazine a DMARD?
Hi Marianne,
Well, your question stopped me in my tracks this morning. I have to admit, after reading your posts, plus the recent changes in my joints, I was beginning to wonder even before you asked. The thing that would indicate it is not RA is that my joints, though swollen, are not hot and red. I had the RA factor blood test a couple years ago and at that time it was negative – although that doesn’t necessarily mean much.
What does make me wonder is that my “pointer” fingers, especially one, have swollen joints and have begun to curve and twist. I’ve noticed this in just the last few weeks. Many of my joints including in my hands, wrists, shoulders, hips, and ankles are quite sore, but not excruciatingly so.
The meds my Rheumy prescribed me at my last appointment proved to be pretty interesting. The prednisone (10 mg for 3 days and 5 mg for 3 days) stopped my extreme stiffness within 6 hours from the first pill, and my joints quit hurting after 24 hours. The relief was so awesome! The sulfazine was tolerable until the prednisone wore off. Then I had so much fatigue that I was unable to function to any degree. I quit because of that and the number it was doing on my insides. But, within two days after I quit, my joints and stiffness resumed worse than ever. In addition, my hands and legs generally feel swollen and tired. Whoa!
So, I’m not sure where I’m at now. I think I’ve exasperated my rheumy. I’m going to have to try harder to be nice next time I talk to him. :- )
Oh, also – yes, sulfazine is a DMARD. My mother has taken Plaquenel for years for CREST, a nasty autoimmune syndrome. She has never had a problem with it. I, on the other hand, was prescribed it when I first started going to my current rheumy. It triggered restless leg syndrome after the first pill. I quit after 7 pills but I have struggled with that horrific issue ever since. I have never heard of anyone else having that problem with it though.
Take care, thank you for thinking of me, and I hope you find relief! I’m grateful for any insights you have on this.
restless leg syndrome? Gee ...and it did not go away when you stopped it?!Hi Marianne,
No it did not go away. I am stuck with it.
There are many drugs that adversely affect RLS but as far as I know, Plaquenel is not listed as one of them. It may have been the straw that broke the camel’s back, so to speak, in my case. Plus I must be genetically predisposed to it. My legs and hands had been “buzzing” for some time before which now I know goes along with it.
After the Plaquenel set it off, my doc tested my ferriton (stored iron) and found it on the low side of normal – not a good thing for RLS. After taking a lot of iron, the RLS subsided to where it’s tolerable. I can usually control it with acupressure, but it keeps me awake regularly in the night and bothers me in the day a lot as well. Sheesh – it seems like I was getting a cascade of autoimmune stuff. I quit everything to cut out stress. That helped – But now I’m getting bored!
My advice would be to go ahead and try it. My mother has done great with it. But if you get jarred awake with electric snakes writhing in your legs – don’t take another pill. I guess that would go for any drug than can be abruptly stopped. But no use not taking a good drug if it works for you – chances are you’ll do great with it.
Eliza
Gee Eliza it is one thing after another isn't it?!
Took my first pill yesterday and so far so good.Heard it can take weeks to work. Still woke up with stiff and painfull fingers.
You are about the same age as me. Did you say you were 52? I am 55. we have a way to go
Hi Marianne,
I'm so glad it went well for you. So far so good! It may end up giving you loads of relief without any side effects whatsoever. That would be awesome!
Yep, I'm 53. My life is so different than it was a few years ago. It isn't all bad, but I've got to figure out some way to be more productive. I guess the first step is to do whatever is necessary to keep from getting another autoimmune disease. Ha! I need to relax, get some excersise (but not too much of course), and laugh!
Today we go into town for the big baseball game - that's a good start!
Eliza :- )
Eliza
I see in the archives that some people have found that extra iron aggravates their PMR. Maybe being on the iron set off my PMR! Groan. But whatever the case, it certainly did away with the RLS. Hopefully I will not have any more major bleeds. Having PMR is bad enough, mixed up with menopause **** it's a double whammy of misery sometimes...
Oh yes - my ferritan (stored iron) was on the low side of normal which is not high enough for anyone with RLS. So the doc had me take iron 3 times/day. I've been doing that for about 6 months and it's almost up to where it needs to be. It is the only thing that has kept my RLS even remotely tolerable - it helped a lot! I think my arthritis has morphed. I'm sure I had PMR, but my shoulders and neck which used to be excruciating, don't hurt much anymore. Now it's all the other joints; hands, wrists, knees, ankles. Even so, this new stuff is not as painful as my neck and shoulders were 1 1/2 years ago. So, I don't think the iron made my PMR worse. But we are all so very different about how we resond to different meds/vitamins etc. ...and menopause ... Ha! Don't get me started!
Eliza Does anyone have trouble sleeping at night? I know it is one of the side effects of the Prednisone. Joy
YES
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