Have had a tenderness/ stiffness in my chest and restricted movement in right shoulder. Doc says it's costrochondritis in the chest and capsulitis in the shoulder and that there is a connection between both these things. She has recommended physio for shoulder and a gel for the costo.
Are there links between costrochondritis or capsulitis and PMR? Am currently tapering down from 1.25 mg pred. Have had issues with right knee for past 10 weeks. It is slowly healing but still a little swollen. MRI recommended there. She doesn't see a link with either reducing pred or with PMR. ESR and CRP have increased since Sept bloods.
Fine otherwise just quite tired but am working full time.
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Irldino
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Hi Irldino poor you! And working full time. I am not sure that there is a direct connection between costrochondritis and PMR but other sufferers have certainly posted on here. It maybe that the muscle weakness we can be left with makes us prone to these conditions. I know now that I had it in my youth and it was never diagnosed, they thought it was my gallbladder. It was agonising, had to sleep sitting up.
Are you on 12.5 of Pred or 1.25 ( good pill cutter)."?
Lots of things can cause our inflammation levels to rise - even a cold. If pain killers are helpful, I would say that , it probably means that PMR is not causing your pain. Just wanted to offer my sympathy really, it all sounds rotten.
Thank you for your kind words and sympathy but in fact luckily I don't have pain. Didn't have pain with PMR either. My PMR manifested itself in stiffness, exhausting and dehabiliting stiffness but so luckily never pain. Pred July 2015 immediately took away stiffness and I have been tapering using a slow taper since. No flares. All quite smooth.
The knee issue that arose in Oct was one of stiffness but again no pain.. the costochondritus is not painful. It's tender and a little uncomfortable during the night but daytime unless I sneeze or cough I completely forget about it. Noticing this eve though that if I take a deep breath I am very aware of it. I think the doctor prodding my chest yest didn't help.
Am on 1.25. Got uncoated 2.5 mg while on hols in Spain. They are very easy to cut as they have a line down the middle.
agree with what you say about muscle weakness and think too that this is where these issues have stemmed from. Doc is very anxious for me to get off pred completely.
Well then you’ve done brilliantly and your doctor should be pleased with you. Such a small dose is negligible as regards side effects, but I know it can make a huge difference to how you feel. I guess you’ve had a chest x Ray?
My knee troubles ( fluid and pain on coming down stairs) came back as I lowered my Pred dose. I think it holds more than PMR at bay.
In what way have your goal posts changed?
Perception of pain is a very personal thing, you sound like you are lucky with a high pain threshold. I feel more generally unwell than in pain now which makes judging a taper hard.
I am shocked at how much of my osteoarthritis pain has gone away with the prednisone. In the mornings (before PMR) I hobbled to the bathroom..until I had loosened up a bit, couldn't open jars easily hands hurt and now it all has gone. ..Telling me much of the pain was not "bone on bone" but rather inflammation everywhere. So feel anti-inflammatory diet and Tumeric. etc might be in order AFTER PMR is gone.. to keep the rest of me feeling good. (I know. a long way off..)!
Goal post changing describe new hurdles arising. My end goal is to taper very slowly as I manage life with PMR. I was very healthy pre PMR and so didn't have any major previous issues. As I was crawling down so slowly I didn't expect side effects or problems to arise other than possily fatigue.
Now I find it impossible to identify where new hurdles are coming from- don't know where the knee issue came from other than weak muscles making me susceptible to problems. Similarly my shoulder journey started with tight muscles in right upper arm that loosened and which I thought had improved somewhat but now my shoulder is involved. These issues are all one sided. Left side completely normal.
No chest X-ray. Yes agree with how feeling unwell/ fatigued etc can make judging a taper difficult. Doc not pleased I am still on pred. I had seen her last early Sept. she was leaving me to my tapering schedule but hadn't expected me to be quite so slow.
I developed bursitis in both shoulder joints and both hip joints this summer. My ESR and CRP were increased, as they would have been with any inflammation. My GP and Rheumatologist both said they thought it was a flare of my PMR and sure enough, on increasing the pred from 4mg to 10mg a day, the joints improved.
I hadn't thought about a flare, as the symptoms weren't the same as I had at diagnosis a year before. I shall keep an open mind in future, if any new or different symptoms develop.
Take care and don't work too hard, if that's at all possible!
" Doc is very anxious for me to get off pred completely." - I'm sure she is, too many of them are but you will get off pred when YOUR PMR and YOUR body are ready. Not before.
She may not see a link in the issues and reducing pred - but she is missing something: the increases in the ESR and CRP are signs that the inflammation in your body is increasing and she can't just say "it isn't the reduction of pred" or that it is definitely the costochondritis/capsulitis. Which COULD be a new aspect of the PMR. She cannot know.
After 16 months you are on an amazingly low dose - she should be satisfied with that and give her this to read:
Thank you for that link. I will give it to her. She said some quite ridiculous things at the appointment such as PMR only lasts one year although people can have symptoms for two years. She also said that If PMR was resurfacing now whilst I am on pred that its steroid resistant PMR and she would need to refer me on! I am ignoring all that. Have blood tests third week Jan which will tell a lot re inflammation pattern. In the meantime I will monitor myself very carefull and continue as I have been doing.
Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids.
by Cimmino MA1, Salvarani C et al
which says in its Conclusions:
"MTX-treated patients showed slightly less residual inflammation than controls, with the same incidence of steroid-related side effects. PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years."
Here in Italy Salvarini is regared as the King of PMR so I hope she doesn't argue with that.
I see that you have had some very good advice to steer you. It is concerning when doctors blithely give you advice that is simply not accurate. I hope you get over this hump soon, so that you can start gradually building your fitness up to former levels. Take care and have a happy Christmas and a healthy happy 2018.
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