GCA and now really painful Polymalgia
Posted , 7 users are following.
I have GCA since May 2016 and on 10mg pred but of late the last 3 weeks feeling really sore shoulders back and legs the morning the worse and mid arvo feel really exhausted have to lay down for half hour takes ages for the body to get going. I've not come across this till of late but is getting worse oh I've had the usual GCA but this PMR is another part of GCA I'm told I just feel like PMR has taken over is this normal path the aches and pains. some advice be great I have been following a lot of discussions not a lot of GCA on here but PMR is discussed a lot so reading discussions has helped.
0 likes, 14 replies
Mrs_Hobbles alley2
Posted
Hi Alley, so I take it you were never diagnosed with Polymylgia but you were with GCA and that was treated . It would seem that now you've developed Polymylgia given the types of pain you're having but the 10mg that you've tapered to isn't sufficient to deal with the Polymylgia. As this seems to be the case it would be advisable to increase your steroid dose to maybe 15mg and see if that makes a difference to the pains you are having. Generally when someone is diagnosed with Polymylgia and they begin steroids, they can have a very immediate and dramatic effect on the symptoms but as you've already been on steroids for some time now I don't know if the improvement will be as dramatic. Maybe give an increase a try and see if it helps and hopefully it will work, fingers crossed!
alley2 Mrs_Hobbles
Posted
EileenH alley2
Posted
There are no definitive tests for either GCA or PMR - other than the TAB when it is positive because they found the giant cells they were looking for. But a negative TAB doesn't mean you haven't got GCA, it just means they didn't see giant cells.
PMR is a clinical diagnosis, made on the basis of the symptoms and response to pred - sometimes backed by the ESR and CRP being raised showing there is inflammation present but up to 20% of us never have the raised markers and many of us don't have raised markers while still on pred even though we have all the symptoms.No-one knows why - it is just so.
The first thing to do is go back up on the pred a dose a bit and see if that helps, if it does it increases the likelihood of it being PMR coming to joint the party - and should stop any doctor trying to tell you it isn't PMR but fibromyalgia. It NEVER responds to pred. Some people have "just" GCA or "just" PMR - but sometimes the other bit comes to join in later. And there are overlaps anyway:
https://academic.oup.com/rheumatology/article/56/4/506/2631560
PMR lasts a median of 5.9 years so don't let a doctor say it can't be after this time:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
Why do you feel you can't go by your blood tests? And I'm curious - why under an immunologist?
alley2 EileenH
Posted
EileenH alley2
Posted
If he's on the ball and you get on well - that's all that matters.
I wouldn't say those ESR figures were "climbing" significantly - but symptoms ALWAYS trump blood tests. They are no more than a guide in this case - and as I say often don't do much if the patient is on any pred at all.
alley2 EileenH
Posted
Yep levels not to high but I felt not right and when took extra 1.5pred wow worked great and felt good and now this totally over all of it but hey bring it on and hopefully sort increase out today. real bad this morning had to think about going to the kitchen really stiff, and for the last week l've got this real bad taste in mouth still there? thankyou for your info it is of great help. I'm 54 my mums 80 so when we go do anything together we go at the same pace might get us a double scooter Ha
alley2 EileenH
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EileenH alley2
Posted
3 days at 15mg may not be enough - don't let the doctor rule PMR out without trying a bit longer or a bit higher. The usual criterion is a week for most rheumies - and the most recent guidelies say "the lowest effective dose in the range 12.5-25mg".
Fingers crossed though!
alley2 EileenH
Posted
alley2
Posted
EileenH alley2
Posted
If you have plenty of pred you could try 20mg and see if it makes a difference. Then, if it does, you could go to the doctor and show them this:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
the most recent guidelines for managing PMR. And point out Recommendation 3: "The panel conditionally recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc.) and other risk factors for GC-related side effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses #7.5 mg/day and strongly recommends against the use of initial doses .30 mg/day."
and confess you tried, and it worked. If it didn-'t - no need to say anything...
alley2 EileenH
Posted
Hi Eileen spoke with Doc and Gp and both want me to drop 1mg which will make 14 from 15 still got pain somehow i get the impression that they think too much pred can make you feel this way hey I'll drop the 1mg and see how it goes well it can only go 2 ways hurt bad or feel better who knows I'll keep you updated. My markers were 6 from the 17 which went down when I took the 15 pred.
Anhaga alley2
Posted
Think is, you do have to get your pain to be as good as it's going to get. Are you at least 70% better than you were at the beginning? Has the pain worsened at all overt the last few days? If you are 70% better, and the pain level is stable, then I think you could try the 1 mg drop. But if you aren't feeling that much better, or if things have got a bit worse lately, you should try the higher dose just to get things properly under control. Reducing too soon will result in eventually taking more pred than if you just went very slowly from the beginning, always using your symptoms as the guide. Blood results are helpful, but symptoms rule. Eileen has given you the link to a study which shows that long term low dose pred is not as damaging as once thought. And low grade chronic inflammation is bad for us, so pred is what we need. It does get better, but it takes time. Doctors can just be so darned impatient|!
kathleen21605 alley2
Posted
Hi Alley I was diagnosed in July last year and put on 15 mg Not had much help with Drs and have along wait to see rheumatologist. I've managed to get down to 7mg but still have pain in neck and hips. Really don't know if I'm doing right thing so I totally sympathise with you as I know how you feel. I hope you get it sorted soon this forum has helped me. Best wishes.