Shoulder/neck

[Maripoppins]

I am currently on 6mg pred and reducing 0.5 per month. I still have some shoulder and neck pain upon awakening, but it normally gets better a few hours after taking my pred. Does the fact that I am still having pain mean I should increase my dosage? Are you all totally pain free before you reduce your dosage or is morning pain expected?

[DorsetLady PMRGCAuk volunteer]

Not everyone gets 100% relief - but the idea is to achieve the same level you had on the initial dose… do you?

If it is getting progressively worse then you have probably gone below the level of Pred you need .

There is nothing on your profile/bio to say when you started, at what dose ,or how you have reduced to help us give a more definitive reply… so your PMR may still be in a very active mode…

A bit more info would be good…

[Maripoppins in reply to DorsetLady]

Thank you for your reply! Although my PMR symptoms were classic, my labs were normal. My Rheumy gave me a one week pred dose pack which worked immediately. However, she still didn’t believe I had PMR so she only started me on 8 mg pred in April. My pain has never completely gone away, but most days it’s much better after the pred kicks in. I recently went to another Rheumy who absolutely said I could not have PMR with normal labs (I showed him info to the contrary but he didn’t care) and he wants me off prednisone as quickly as possible. I also have very bad spinal stenosis so part of my pain can be attributed to my back problems. I just had new labs and everything was still normal.

[DorsetLady PMRGCAuk volunteer in reply to Maripoppins]

What a load of twaddle re so-called normal marker , don’t these people ever read what we do… and TBH 8mg is such a small dose it’s not much use to man nor dog! Certainly not with PMR…symptoms should always be the overriding key.

Really don’t know what to suggest except maybe try the advice in this link re a flare and see if it makes any difference. 2 weeks at higher dose won’t do any harm.. and you can drop back down to current dose easily if it does nothing.

healthunlocked.com/pmrgcauk...

If it does work, you may have a bit of ammunition to return to doctor - however they may not like it!

[Maripoppins in reply to DorsetLady]

Since my pain had never really gone away at any dosage (other than the 1 week dose pack), I don’t know how much to increase the dosage. Since I’m only at 6 mg, how much do you think I should increase?

[DorsetLady PMRGCAuk volunteer in reply to Maripoppins]

I’d be inclined to take 8mg as my base - so add 5mg to that to give 13mg… and then after the 14 days -[ or however many you decide on, but no longer] back down to 8mg…perhaps in 2 steps… so to 10mg for about 5 days then to 8mg or 7.tmg depending on how you feel.

[Maripoppins in reply to DorsetLady]

I will try that! Thank you sooo much!

[PMRpro Ambassador in reply to Maripoppins]

And for the record, I agree with DL!!

Do these people never read the literature? It is recommended not to start at too low a dose - I bet they did it because it wouldn't have worked for a lot of patients and they could say "told you so". It is also all over the literature that some patients don't have raised markers, some simply do not "mount the acute phase response" as it is called.

My labs never went out of "normal range" but the ESR was high for me - rumbled along at 16-18 during a major flare. My personal lowest achieved is in low single figures.

[Maripoppins in reply to PMRpro]

The 2nd Rheumy also said that once I was on Prednisone, the markers would never be raised since prednisone stops the inflammation!!

[DorsetLady PMRGCAuk volunteer in reply to Maripoppins]

Well he is partly correct in that -if you are on enough Pred to keep the inflammation under control they shouldn’t be raised.

But of course that depends if you are a patient where they are raised initially…

[Maripoppins in reply to DorsetLady]

GM….. your advice to increase the pred from 6 mg to 13 mg. was perfect! I have had no pmr pain or discomfort since raising the dosage. What I do have now are headaches that I never had before. I don’t have any jaw pain or pain in my temples, (the pain is sort of in the middle of my forehead), but my left eye is slightly blurred at times. I am trying to get an appt with a neuro-Opthalmologist but so far no luck. My Rheumys first appt is not until 10/31. Are headaches without Gca involvement a side effect of a raised dosage of prednisone?

[PMRpro Ambassador in reply to Maripoppins]

They could be in some people. Difficult to say.

[DorsetLady PMRGCAuk volunteer in reply to Maripoppins]

Good to hear increase has helped.

…Are headaches without Gca involvement a side effect of a raised dosage of prednisone?

Not sure that’s a fact - and GCA headaches can take longer to resolve than other symptoms (even if you may not have had them before as they don’t seem typically GCA ). You might need to give the higher dose a bit longer to work - and headaches could be related to blurred eye. But maybe try an ordinary painkiller and see if that makes any difference.

[PMRpro Ambassador in reply to Maripoppins]

True to a degree - but if you aren't on enough they may creep up again and that is a warning to stop reducing and maybe go back up. But is you didn't have raised markers before - why would they rise later?

There has to be enough inflammation present for long enough to trigger the liver to produce the proteins that raise the numbers - which is why the markers are a bit so-so in value and symptoms always trump bloods.

[piglette]

A few lucky people become totally pain free but an awful lot will have some discomfort, but the improvement to the original symptoms is usually pretty impressive.

[Darkchocolate1]

I continued to have shoulder pain (between the shoulder blades) and neck pain 24 hours a day on any dose of prednisone for PMR. I finally had an MRI of my cervical spine and found out I have several bulging disks. Temporary relief comes only from opioids and icing the area . Without the MRI I assumed it was all pain from PMR.

[cranberryt]

I will also add that from time to time on my journey, I have split my dose and take half or 2/3 in the am and the rest before bed. This helped me get through times when the pain would creep back in overnight.

[Creas]

I'm still getting shoulder and neck pain too on my raised dose (16mg). Been on it for 3 days now.

[PMRpro Ambassador in reply to Creas]

Shoulder and neck pain is not always directly PMR - it can be myofasical pain syndrome which is also part of PMR but doesn't respond so quickly or well to moderate dose oral pred. Patience ...