I have been on predislone now for a month
Posted , 12 users are following.
Hi,
I was put on predislone 15mg a month ago for suspected pmr, my esr levels werent raised but i had the symptoms of pmr so gp put me on them. I am now on 12.5 mg for last 2 weeks. I have been feeling so much better, loads of energy and pain free, however in the last week i feel like i am back to how i was before i started the medication. Is this normal to have the pain again in the arms and shoulders? I have really bad headaches across my eyes too. My blood tests showed an increase in white blood cells. Has anyone else felt like this while on this medication?
0 likes, 17 replies
Daniel1143 christine51794
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amkoffee christine51794
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I'm impressed that your GP diagnosed you with PMR without your inflammatory levels being high. So many doctors look only at that inflammatory markers to determine if you have PMR. But you can have PMR and have low ESR and low sed rate.
I am somewhat concerned about your headaches going across your eyes because I know that headaches can be a sign of GCA. It is my understanding that typical symptoms would be a pain in the temples, a sensitive scalp and that it hurts to chew. My concern is that if you do have GCA and it's not treated right away you can lose your vision. The way they test for GCA involves a lot more than just giving blood. They take a sample of your temporal artery and test it.
As Daniel1143 said in his comment that you may be tapering too quickly. And everything he said is absolutely right. You should be tapering very slowly. It's even more important when you get down to a lower dose. But still you were only at 15 mg for 2 weeks and that's not nearly enough time to get rid of the inflammation in your body two then start tapering. I think most rheumatologists keep you at the original dose for 4 weeks before you begin tapering down. The other thing it could be is a flare and those can happen sometimes for no reason at all. And if that's the case you may need to increase your dosage for a few days and then go back to your original dose.
christine51794 amkoffee
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ptolemy christine51794
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christine51794 ptolemy
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Thanks for the advice & information
Michdonn christine51794
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Hi Christine, I agree with the others, tapering too quickly. I think you should never taper if you have any PMR pain. Taper using the DSNS method. When I did not and followed my doctor's direction I had a very bad flare and ended up on more Prednisone then when I started. Do not rush tapering off Prednisone is not a race! Think positive and try to smile. ??
christine51794 Michdonn
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EileenH christine51794
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If you are having increased symptoms - and ESPECIALLY if you have headaches, you need to speak to your doctor uregently. You may have been at the very start of things when you started with the 15mg but the illness may be progressing and becoming more active. About 1 in 6 patients who are first diagnosed as having PMR go on to develop GCA and that can cause headaches and more severe PMR symptoms as well as other things.
Really you should have stayed at 15mg for a month or so before reducing but I can understand why you were told to reduce if all seemed so good. However, if the PMR is progressing to GCA you will need a higher dose of pred I'm afraid. If you have any visual symptoms or the headaches get worse please don't wait until Friday to see the doctor. If you have visual symptoms of any sort go straight to A&E/the ER and tell them your symptoms and diagnosis. Once GCA starts to cause visual symptoms you need very speedy medical treatment to reduce the risk of loss of sight.
christine51794 EileenH
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Thank you for your advice Eileen. I thought my headaches were due to sinus pain as I have had blocked nose & achy throat, hadn't considered it being that. Will speak to the doctor as soon as I can get through to one
EileenH christine51794
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All the best
andre68439 christine51794
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Hi Christine; I agree with everyone else who posted on your condition. Especially listen to Eileen's and AMKOFFEE's advice re GCA. Also, re your lab results, I had a PMR relapse 18 months ago without knowing it due to different symptoms presenting than the original onset 11 years ago. Sore wrists, swelling of my ankles and lower legs. My new GP doctor thought it was Carpal Tunnel Syndrome and the swelling a reaction to my blood pressure meds since my sed rate and ESR were also normal like yours. He was not experienced with PMR and had not requested a C-Reactive Protein (CRP) test until I insisted a month later. My own research indicated that the CRP test is almost always elevated with PMR. It came back very elevated, and I was immediately sent to a Rheumatologist for treatment. As others have said here, the ESR and sed rate don't tell the whole story.
EileenH andre68439
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andre68439 EileenH
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Interesting Eileen. The report I had seen (link attached} was fairly confident on the reliability of CRP in the section relating to lab results. I dug a bit deeper after your comment and found other more recent studies that reported near normal CRP for some of their patients as in your case. No easy answers here!
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease
Michdonn EileenH
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☺️
EileenH andre68439
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ptolemy andre68439
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EileenH ptolemy
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