Posted in August issue related to R hip + thigh/buttock discomfort when lying on it in bed. Since diagnosed bursitis & tendonitis & also R tennis elbow which triggered from my gardening efforts. Physio acupuncture + exercises going well.
Of late have noticed when sleeping on R shoulder for any length of time I awake to discomfort in this area & after clearing out my wardrobe yesterday I am in considerable discomfort today which I never ever experienced with my initial PMR issues 2013 & diagnosis early 2014. I need to be careful with my L shoulder too & fortunately I am ambidextrous.
Last night I noticed unusual hollows (outer leg) by ankles which haven't been comfortable of late either which I note may be due to swelling occurring late in day around ankles. I am still within my normal weight range.
My wrists I sense have a general weakness plus accompanying mild pain especially when using the computer. Arthritic fingers have surfaced with swelling of some joints as mentioned in my August post.
Scanning my way through my calendar of this year I have had 3 attempts at reducing my hydrocortisone without success - Rheumy originally suggested this. I immediately resumed my regular dose, which give or take was sitting at around 3mg to 3.5mg Pred.
My recent drop (last Sunday) was miniscule as had my meds made up in a slightly lower dose of 2.5mg to 2mg (hydrocort).
I have a Cipro history + related tendonitis & wonder if this is a slight flare or indeed added tendonitis in lots of the places known to those on steroids for a length of time.
Neck not that great today either as still have a knot which Physio needled last week to try & release. He will lots to do when I see him this week
Any thoughts as always gratefully appreciated.
Blessings one and all in the hope you are all fairing as best as can be
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Megams
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I'd say it sounds like a flare - and believe me, even a very small drop can be enough if you were skating on thin ice already! The previous dose could have been barely enough to manage the new inflammation and been allowing a very slow build-up of inflammation - which has just reached the lip of the bucket and is dripping over...
Thank you PMRpro - I wondered altho in all fairness I had been holding my own for at least 4 to 5 months at around t 3.mg/3.5mg Pred (equivalent hydrocort) reasonably OK.
Interestingly enough this morning, whilst low on sleep,there doesn't seem too much discomfort as yesterday - I did go back to my usual 7.5mg dose last night as opposed to 7mg. This morning I will return to the same dose & stay awhile once more. I am always reminded about reducing by our "med profs"
Will continue to tread carefully - send abundant blessings your way as usual.
Bless you sambucca for your suggestion - interestingly enough I can not find a Bowen Therapist in my area as looked several times when posting in the past & as per recommendation by PMRpro.
As last resort I returned to my Physio & asked if he knew one - he didn't & I know they are very thin on the ground as researched via good ole google.
I am concerned that my tendons/ligaments ( mentioned in my original post) have weakened considerably & my ability to exercise as gently as poss is reducing once more thus leaving muscles weakened despite my best efforts.
I'm wondering if this is new inflammation from the tendonitis/bursitis as opposed to actual PMR symptoms?
I find this aspect a bit confusing. I think of the old saying "which comes first the chicken or the egg"?
My small amount of hydrocort med (equivalent 3mg/3.5mg pred) appeared to be holding me over a reasonable length of time this year even tho there were 3 attempts (4 as of last week) to slightly reduce. What has also surfaced this year (as mentioned) is the fact that some fingers + other joints have become hot & slightly swollen which suggests to me arthritis of sorts but this is not PMR?.
Felt I wrote enough in last post but my R leg which gave me "jip" with varicose veins & deep cramp in the night appears to be showing signs of flaring in new areas by being moderately painful at night - these were treated last year with Sclerotherapy. As I hadn't been able to do regular walking with the glut + bursitis issue wonder if this has helped trigger probs with this leg vein again. Who knows but off to Vein Spec. next week.
In summary I have gone back to my morning dose of 7.5mg + 7.5mg night dose - whilst my body is adjusting once more we shall see what transpires.
If you have hot and swollen joints - you have reported that to your rheumy I assume? That isn't typical of PMR but could be a sign of other forms of arthritis which will respond better to other medication.
As sambucca says - PMR can present very similarly to LORA and quite a few people are diagnosed with PMR first and have the diagnosis revised at a later date as other symptoms appear.
Ah ha great spotting PMRpro - yes I had found their website some time ago & for some reason very thin on ground near me - there is one lady with whom I could try.
Told Rheumy several times during the course of this year that I've noted some joints on fingers are slightly swollen.. ............ just listens but will re-remind him next visit.
My R knee (out of blue) at night will awaken me with mild pain - we are now coming into our summer so would expect this winter time.
Been having normal 3 month bloods 2016 & nothing of any consequence noted so presume more specific blood test can detect arthritic changes?
There are no tests to really prove RA either - it is also a clinical diagnosis. There is rheumatoid factor but it may not be abnormal in someone with RA and be present in someone with no clinical signs at all although it is now thought to be a sign that RA will develop later in life. So you can have seronegative RA - and when blood markers do develop they may lag way behind the symptoms. As I understand it - LORA can present like PMR and then the joint problems start later.
I thank u PMRpro as always - this is very interesting and as to be expected no definite answer with bloods maybe as you say, much later after symptoms have appeared.
I certainly know that I can't squeeze tube of my thick barrier cream nor open jars etc like I once did.
I am back to my usual 15mgs (total) of Hydrocort. & not too sure if made much difference. Physio is wondering if I have bursitis in my shoulder - never had shoulder issues before like this & if this is the case I would assume side affect of steroid? My L shoulder not flash either but being very careful.
I think I have found a lady to help with Bowen Therapy.
If you HAVE got PMR then the shoulder and the hands could simply be you aren't on enough steroid to manage it - and you mention both shoulders so it wouldn't be surprising. Then of course - arthritis can cause very similar symptoms. Sorry - time for the doc again I think
Would an ultrasound or x-ray (not sure what they use) help detect tendonitis + bursitis in the shoulder area?
If it was showing that this was indeed my problem (just like my R glut + bursitis, then increasing hydrocort further would not make any difference would it? Or have I got this wrong especially in light of poss arthritic issues which appear to be making their way up each joint in several fingers?
Physio wants me to ring him tomorrow to see if work he did yesterday on all areas with acupuncture has helped (along with my exercises at home which keeping me ticking along OK.
Physical exam, U/S and MRI they say. I assume an x-ray who show impingement.
I had bursitis with PMR - with oral steroids it takes months to fade because there is poor blood supply so it has to get there by diffusion into the fluid in the joint.. A steroid shot sometimes works faster if it is very inflamed.
~You never cease to amaze me with your information - excellent reading & thank you very much.
I realize an injection may be required & due to significant changes in R leg veins again, can't have both within 2 weeks of each other - will need to weight up & inclined to think R shoulder (which is adding woes to my tennis elbow) may win hands down.
Just a side note:- upper finger joint now slightly bulgy & changed shape from yesterday - use it all the time being L handed (with mouse). Fortunately ambidextrous with most things but am left handed dominant.
Hmmmm....... interesting concept sambucca & one in which may be a probability.
I recall my late Mother's ability to still play the piano with a couple of what I'd classify as crooked index & middle fingers.
I did inherit her heart defect (mostly repaired) + accompanying migrainous history so no doubt a chance of some form of arthritis going on.
Am due to see Rheumy in Dec but may be able to get a earlier appointment - I'm keen to know of course.
Thank u for the link to the arthritisresearchuk - most interesting and I like the fact it is natural - is this Flexiseq available overseas would you know? I live in NZ.
No problem nothing to do with me 'polywhosit' and 'giant thingy' come when they want and go when they want, all we can do in the meantime is find a way to live with it. My friend Shirley, (we met on Patients.co.uk) was diagnosed with both PMR and GCA at approximately the same time. We both went into remission at the same time. We call ourselves 'twins' although I am older by a whole heap.
We love to hear when people go into remission, as you never hear from the people who sail through the whole shebang. It is the strugglers and people who have been messed around we hear from and we think it is important to let people know - it can and does go into remission - it is just that your particular tunnel is a different length but we can assure you there is a light at the end.
~ Love it sambucca and great to know you have a twin in which to share "polywhosit & giant thingy". Sense of humor everything & learning about the many uses of WD40 just made my day.
~Excellent - had a good chuckle @ your last sentence considering we sell a lot of WD40 @ our hardware business - about time there was an equivalent for our squeaky bods
Hello megams, I am experiencing similar discomforts. My symptoms started 8 months ago. Most of the pain is in my shoulders and general stiffness in both shoulders and arms+ tendonitis .. I got MRI, EMG, ECO and blood test, went to see 3 doctors and they don't know what's wrong. I don't think they suspecting PMR or any auto immune problems because I am only 31, in good general health. Any thoughts on how to tackle my problem? Thanks
~Alexander99 - hmm.... not so sure what to suggest to you here other than those with far more experience with a wider range of ages may come to your rescue.
My PMR was finally diagnosed after over a year of stiffness in leg muscles when getting up from a chair & trying to walk. My balance wasn't so great at times either resulting in a couple of tumbles, one playing table tennis & the other tripping over a mat.
It is apparent now that possibly I have other changes taking place & PMRpro suggested this being a possibility in her response to my original thread.
I had never really had aches in my shoulders, wrists & ankles all at the same time when initially diagnosed but recently I did - I also had surging/raised blood vessels from my fingers/hands through my wrists - a definite inflamed tender sensation. So definitely had a flare with some added possible arthritic signs as some fingers hot, gnarly knotty looking & now tend to be painful.
Its watch & wait time & guess my bloods revealed a rise in my CRP & ESR levels when in fact they were very low in the beginning.
Despite my best efforts, I had some unrelenting stress through October for minimum 2 weeks which Rheumy says definite trigger. Obviously I did not have enough steroid in my system to cope with this which is a big learning curve.
I am pleased you report that you are in good health.
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