Aching Arms

[Robinsnest72]

When I was diagnosed in Aug. 2018 my ESR reading was 25 and my CRP 53. My readings have come down to ESR 7 and CRP 3.2. This tells me the inflammation is under control. I am presently at 7mg pred working on the slow reduction to 6mg. I take 4mg am and 3mg pm. I have never really been pain free but certainly bearable. I am always stiff and achey in the mornings and in the evenings getting out of the chair. I cannot understand if the inflammation is under control why my arms hurt from the elbow to shoulder in the muscles. Can always feel this. Could this have anything to do with reducing? I have also read where pred can make your muscles hurt. I have certainly lost a lot of my muscle strength and am trying to regain.

[Hidden]

Hi, the markers can lag behind a bit...I THINK 6 weeks was mentioned once. So it could be that the dose has undertaken the inflammation. However, you say you have been trying to regain some muscle strength. Could it be the muscles protesting a bit? It is quite common to get delayed onset muscle soreness (DOMS). I have to have a rest day between doing anything repetitive or doing too much if a good thing. If the pain is reduced by painkillers that's what it will be. There's a chance it could be either/or or both i'm afraid. I usually have pain killers for a couple of dayss and mainly rest. If no improvement I do a blast of pred...I have 'permission" to do 5mg for 2 to 3days and if better I return to last dose the aches and pains were at their least intrusive. 🙆

[Robinsnest72 in reply to Hidden]

Thank you for that info. I will pay more attention to what I am doing with my arms. I ride my bike a lot but I always figured my arms were not being used much.

[Hidden in reply to Robinsnest72]

I am glad you can ride a bike ...I miss mine. I lost my balance but not sure I could brake on cue now. But you do use your arms ...mainly to take your upper body weight.

[PMRpro Ambassador in reply to Hidden]

6 months has been noted ...

[Hidden in reply to PMRpro]

In terms of lag? Crikey

[Mary63]

Sounds like you have done quite a fast taper. So maybe you have overshot the dose you need at the moment

I have just got to 6.5 mg for third time after 3,5 years. When you say your pain is bearable that worries me. Did You have much pain at your top dose? Cos the way you felt at the beginning is what you are aiming for now. Anything worse and you have gone too low OR you have been overdoing things...exercise, work ,whatever

Have a few thoughts about this. Too low a dose or too much activity.

All the best

[PMRpro Ambassador]

Symptoms ALWAYS trump blood test results. For some people the markers don't rise while they are still on pred.

And think about how much you are using your arms maybe???????

[Bfp1]

This resonates with me. J always have pain in the arms and other places. I worry about flare ups all the time as I ache and pain constantly and don’t know why on 40 pred. Pain killers don’t work. I wonder if we will just have to grin and bear it. If you find out anything let me know. Woken up today in lots of pain so super sympathy from here.

[Robinsnest72 in reply to Bfp1]

I can certainly feel for you. I am not too bad this morning. My arms and hands as usual.I do have arthritis regardless of the PMR. I am sitting in my sunroom having my coffee and listening to a cow bawling for his mother ha ha. I know when I go to stand up it will be pain and stiffness. I am more fortunate than you as it usually subsides during the dayand I do not ache in bed at night as when PMR first hit me..You are on an extremely high dose of pred. My highest was 25 and reduced in a week to 20. At that time I had to deal with shortness of breath and heart palpitations. One post commented I had reduced quickly but it has taken a year to get to 7mg and now working for 6mg. I would love to have the energy of this humming bird having his breakfast. I feel like you that this is the way it is going to be and I might as well get used to it. I am grateful for what I can do but hope for more energy along this journey. Possibly as you start to reduce the pred some of your pain will subside as I do believe it effectsnthe muscles. Enjoy your day!

[DorsetLady PMRGCAuk volunteer in reply to Robinsnest72]

I think Bfp1 has GCA as well - so 40mg not out of order for getting a flare under control.

If you still have pains and stiffness I would say that your inflammation is not fully controlled despite what your markers may say. As PMRpro says- symptoms are the key - every time! And your disease was only diagnosed a year ago- plenty of time left in it to be active!

[Robinsnest72 in reply to DorsetLady]

Guess I am hoping for a quick recovery and am going to get fooled. Thanks for replying

[DorsetLady PMRGCAuk volunteer in reply to Robinsnest72]

We all want a quick recovery - but afraid that’s not the nature of the beast!

You have to live with it and manage it - but you don’t have to like it!

Take care