Hi all: newbie with PMR (probably)
Posted , 5 users are following.
I have been a reader of discussions here for a couple of months and like so many others, have found them so invaluable for better understanding PMR and how to manage on prednisone. :D
I was diagnosed with (most likely) PMR in April after having a fairly sudden onset of stiffness and pain in legs and shoulders in February. I could actually manage pretty well on ibuprofen as much of the pain would be gone by early afternoon, but by the time I got in to see a rheumatologist in April, his recommendation was to do the routine we all know so well with prednisone, starting at 15 mg and tapering.
I know exactly when I started feeling the 1st symptoms, because I was at a family wedding in the US last October, and my shoulders were feeling strangely achey. By December, I needed help from my partner in pulling sweaters off over my head etc. Then I got a cold or flu that I couldn't seem to shake off for almost all of January (the classic infection that often seems to kickstart these conditions, it seems in retrospect). By the 1st week in February, it was pains in my legs and behind, and stiffness. I kept thinking it was repetitive strain injury from typing and sitting incorrectly perhaps, bought a new computer keyboard and chair and so on. I went to my GP to ask for a referral to a physiotherapist, thinking I might as well do that through my insurance and she took one look at me and said “that's not RSI” and did about 10 blood tests and referred me to a rheumatologist.
I'm sure that all sounds familiar in bits and pieces to just about everyone here! By the time I got in to see a rheumatologist, I had pretty much diagnosed myself as the one thing that exactly fit my symptoms was PMR. However, I was 51 at the time the initial pain and stiffness started, so kind of on the age borderline, so my rheumatologist somewhat questions whether this is the correct diagnosis. I had my 2nd appointment with him a couple of weeks ago, and he thinks it could possibly be something called sternoclavicular hyperstosis, not least because my collarbone popped out of the joint permanently in March when I was doing little more than tying shut a trash bag. Apparently he thinks that the one condition might have started the other -- that my joints might be reacting in a PMR like way. It's hard to find much information on the other condition, but I suppose it's possible. I also wonder whether all of these things are part of a kind of murky spectrum where it is hard to tell what is actually what–and of course you do wonder whether it even matters! In general, the other condition would probably be treated the same way, perhaps just with NSAIDs.
A good family friend who is a retired orthopedic surgeon–and who has also had PMR!– says he actually saw a lot of spontaneous (no particular reason) clavicular (collarbone) dislocations in women And he didn't think it was that unusual (despite what you read on the Internet, where it is claimed that this type of injury only happens in response to severe trauma, like banging yourself off the steering wheel in a car collision, or being tackled by rugby or football players!). And also, the achey pains and stiffness really seem to be more likely to me to be PMR... And of course shoulder and joint problems are a common complication with PMR. On the other hand, most of my discomfort comes from stiffness and pain in the back of my knees, which seems to be a bit unusual (does anyone else have this?).
I just wonder too if anyone else has ever had their rheumatologists suggest this other condition? A point of frustration is that despite having these suspicions, I haven't been sent for an MRI or CT scan, which I would have thought would have been a priority. I'm actually asking to see an orthopedic specialist anyway because I am a fitness swimmer, and I want to know the best way to deal with having this permanent collarbone dislocation (and also am a little worried about whether the other one would pop out as well) so hopefully, I might get some answers about the joint conditions then.
Anyway, that's all by way of introduction. I have tapered down to 8.5 mg of preds and have stayed the longest at this level as a lot of the aches returned with the taper. this is where so many of the posts here have been so helpful. It is just so hard for me to understand what is normal–and whether I am supposed to be pain free (which I haven't been since I was on 15 mg). I am happy where I am now, with some stiffness in the morning but I can take the dogs out for their morning walk And almost all discomfort except stiffness behind my knees is gone by early afternoon; and there has been weekly improvement to where I am considering another small drop in the next week or so. I guess it is all about finding a personal comfort zone.
I thought I would finally join so that I could say thanks for the collective knowledge and experiences (and occasional needed laughs) which have been so much more helpful than any other source of information!
KJ
0 likes, 6 replies
MrsO-UK_Surrey
Posted
I'm sorry to hear of all the complications that have brought you here but then PMR is complicated in itself without a diagnosis of a possible sternoclavicular hyperstosis which I must admit I've never heard of. I looked it up out of interest to find, which I'm sure you will already have discovered, that it appears to be a rare illness and mainly affects men between the ages of 30 and 50 and seems to apply to the upper body mostly.
As you have had lower body pain in the bottom/pelvic girdle and leg area, then that does sound classic of PMR - it certainly corresponds with most of my symptoms including the inability to raise arms sufficiently to don and remove clothing. I was wondering whether you had ESR and CRP blood tests at the outset and whether these showed raised inflammatory markers which can be indicative of PMR (with a few exceptions). Also, when people commence on steroids they usually notice a very fast response, achieving about a 70% reduction in their pain.
I commenced on 40mgs of Prednisolone due to a diagnosis of both PMR and GCA and am now, 4+ years later, down to a daily dose of half a mg. I never managed to be completely pain/stiffness-free throughout the reductions until I reached the really low doses. If by \"stiffness behind the knees\" you mean a sort of inability to raise each leg upwards with bent knee with ease (sort of lack of flexibility in the knee), then that is also my experience.
I think you have done extremely well to get down to 8.5 in only 4 months so you're being very wise to stay at this dose for longer than the previous doses and at least 'til you feel the inflammation is under control and the symptoms have improved.
An MRI or CT scan sounds like a good idea, especially for the collarbone problem.
Do keep in touch now that you've found us and let us know how you are gettig on.
MrsO
mrs_k
Posted
Glad you have taken the plunge and joined in and pleased to see that even reading it, the site has helped.
I wonder if you have also visited www.pmr-gca-northeast.co.uk and read up the stuff on that site as well.
There are also a couple of links to another forum site set up by PMRGCAuk (national charity in the UK purely for PMR and GCA patients. But we also post on this site as well.
Never hear of sternoclaviculr hyperstosis and glad to see you are going to see an Orthopaedic specialist (bet he knows loads of Rugby players).
I don't have PMR, but I do get stiffness behind the knees when I don't sit right and forget and cross my legs or ankles.
Let us know how you get on and keep in touch. Best Wishes for the future.
pipistrelle
Posted
I did have the various blood tests, and then had them repeated at the start of June. SED originally was 41 and dropped to 24; CRP was 34 and dropped to 16. I have just arranged to have them done again on Thursday, because I am much more comfortable now than I was at the time I had the 2nd test–it had been a very stressful number of months leading up to the death of my father in May only a month after I started on prednisone, and a number of flights back and forth between Ireland and the US (I also think jetlag creates its own kind of stress and affects PMR). I went back up on my prednisone dose for a while until things began to settle again. From information here and elsewhere I knew to expect a flare given the level of stress. It helped to know this kind of thing when you do feel you are negotiating this illness so much on your own as no one else is very familiar with it!
And yes, prednisone resolved about 90% of my symptoms within 24 hours when I 1st took it–it was truly the miracle drug with this condition. The chemists failed to tell me that I shouldn't take it at night, so I took it in the evening. I woke up at about 5 AM and for the 1st time in 2 months, my legs were still flexible and not locking at the knees as if they were frozen up with pain. once I discovered from reading posts here and on some of the other forums you are all involved with, that I should not be taking prednisone at night, I slowly moved it forward about 2 hours a day until I was taking it in the morning. But that said, I never had any insomnia. Just the opposite–I think due to the low level exhaustion of never getting a really solid nights sleep with the pain, once I was on prednisone and the pain was diminished I just slept and slept and slept for the initial couple of weeks that I was on 15 mg.
These are all the reasons that I think I am dealing with PMR with some added complications in my shoulders and collarbone, rather than some other condition. I do know it is really normal to have bursitis and other issues involving the shoulders if you have PMR.
I think maybe one reason I was able to come down a little faster on the prednisone was because while I had stiffness and some pain, it wasn't at the severe level that I know many people get with this condition. I might even have tried treating it with just ibuprofen, which worked pretty well for me, except that it was very hard on my stomach. But I also realized from the many experiences on these discussion boards, that it was time to just let things settle at the preds level that I'm currently at.
I have found the GCA PMR UK site that has all the helpful posts and personal experience profiles.
I had to prevent myself from asking my rheumatologist about doing Ragnar's Reductions already–not the idea, but calling it by that name on the assumption that this is the official and widely known medical term. :wink:
I also have a laugh almost every single morning and night at someone's post on a thread somewhere In the past about how doctors just do not get what an Olympic challenge it is to get a bra on and off with this condition–so true! You really need an mechanical 3rd arm to reach the places your arms can no longer reach.
Mrs_G
Posted
My husband really likes Bats as well but Im not so keen !! We have them on the land where we keep our horses and they tend to sweep down a bit close for my liking if we are down there in the evenings !!
Well ive had this twice but first bout totally different to the 2nd With first bout Incredible agony until I got the steroids and then from 20mg to 1mg in a year with no blips and the only real problem I had was exhaustion form time to time and I now realise that was probably steroid withdrawel
Lots of ups and downs with 2nd bout and I had real problems with pains behind my knees and they werent keen on bending for at least 2 years I also pulled a muscle behind my knee and that probably took 18months to be completely right It is almost 3 years now and I have just gone up to 5mg from 2mg ( started on 20mg again ) as I was getting some aches particuarly in the morning and as I didnt have them before i thought Id better increase Blood tests today and review next week with Dr ( dont see Rheumy )
I must say I also have never heard of the other illness !!
Im not that good at Anatomy cant collarbones be put back in place ?? I knew I was going to have a bad day or slight flare up if I had a slight swelling where the 2 bones meet in the middle strangely !
In view of the fact that you have had such a stressful time as well as the illness perhaps you should have started on 20mg or reduced from 15mg a bit slower as most of us have found that stress makes us a lot worse as the idea is you should be pain free My bloods both have to be around 5 for me to feel OK even though I know the norm is higher but thats what my Dr works on for me She has had 5 years of the last 9 looking after me with this !! Also if i get cold particuarly bad throat PMR goes haywire !!
Hope all goes well for you Glad you sleep well ( Needed !!)
Best wishes
Mrs G
Nefret
Posted
My story is documented in bits and bobs all over the place, but briefly I was diagnosed with PMR getting on for 10 years ago now and GCA later on. I have also collected a magnificent list of other ailments during that time, which I won't detail here.
If you are one of the lucky ones to have it caught and dealt with early on then hopefully you will have a textbook ride through it. We love to find those - it gives us all hope.
Loved your comment about Ragnar's Reductions - we can now refer to it as RR and we will know what we are talking about! I will be hard put to it to NOT mention it to my Rheumy as I'm sure I will think of it when I see him next!
Nefret (aka Catie)
BettyE
Posted
I found your long post extremely interesting. So much rings a bell. So many different pains and who is to know which is which in this illness.
Like Mrs.G I am on my second round of PMR and, like her, have found the two episodes very different.
We read about shoulder and arm and hip pain as common symptoms. First time my arms were un useable; this time. they have not been invloved. But I have had terrible muscle weakness and quite severe leg and foot pain and, lately, neck pain ( But maybe the foot is fallen arches ?) I have responded very differently to steroids this time and, three and a half years on am still struggling. I began on 15 ( 30 first time ) and cannot seem to balance the pain control with the steroid adverse reactions which, first time, were negligible. I am going to see my GP tomorrow to see if we can sort out something I can live with more comfortably.
My advice would be listen to your body and hope your doctor will do the same.Not easy when s/he will only have seen a few cases which may not resemble yours nor will any non sufferer really understand the problems.
Regarding the \"right\" time to take the pred, I was having severe leg muscle problems. I called them rubber legs; they hardly held me up and I had horrible panic attacks. These stopped more or less overnight when My GP said to try taking the Pred. at night instaed of morning. Against all the \"rules\". He said when I asked that it had been a shot in the dark and he'd add my reaction to his sum of knowledge. I've told this before more than once but I think that one remark gave me great confidence in my doctor. This condition does not conform to rigid rules.
Interestingly, taking the pred. at night has not affected my sleep although in my first bout I did not sleep well at all. Being retired that was not too much of a problem; I just caught up as and when.. I usually go to bed after Newsnight and wake at around 5.45.Doesn't sound much but that has always been my pattern.
Are pipistrelles those dear little bats that look like big butterflies?. We don't have them but a friend does. Such a pretty name. Nice to meet you and good luck. Betty