Confused! Can anyone help please?

Bones, joints and muscles
1

Hi, I know everyone's recovery rate is different with PMR but I am getting totally confused.

I was diagnosed with PMR back in February having the full symptoms in my upper & lower body. I was initially put on 15 mg of pred which worked for my upper body yet I was still experiencing alot of pain and lack of mobility in my lower body. Went back to the Dr's in April and upped my doseage to 20 mg.

I am now decreasing per month by 2.5mg as advised. My mobility is slightly better but still in severe pain. The stiffness doesn't fade until late afternoon, cannot excercise because of pain (catch 22).

I can't understand why my upper body has reacted so well to the meds when my lower body is in such pain. Does the Pred cause part of the pain which is releaved when doseage is reduced. I know I have to be patient and go with the flow now but getting very confused! Anyone able to explain please?

Thanks in advance.

2

Might be a reaction to a sudden change in your dosage, maybe reduce a wee bit slower or use the DSNS method found under the resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

It can be catch 22 sometimes it's all a little experiential and has been said many times 'we are all different'.

Best of Luck, John

3

I sounds to me as though you may have something else going on with your lower body.  Is your spine in good condition, because all sorts of nerves originate there and if they are being squeezed or whatever they can give you pain in a completely different place.  Especially as you are still not getting relief from the higher dose further invetigation is warranted - not so much to rule out PMR as to figure out what other condition you may also have.

4

Hi, I have no problems with my spine and back it's all in the front. It seems to be from the tops of my thighs down to my knees which are constantly swollen! I'm coming up with all sorts of theories like 'As your thighs are twice the size of your arms, it will take twice as long recovery' or 'it's working slowly down you body'

5

You wouldn't necessarily feel any pain in your back, as the pain travels along a nerve to another place, referred pain.  But if your spine has been checked out then I guess that's not it.  Just a thought I had.

I've just been reading swelling can be a pred side effect - did you have that swelling before starting treatment?

6

Hi, My whole body was swollen prior to treatment. Hands, face, knees, ankles etc but since taking pred all have subsided except knees

7

Oh my.  Did your doctor have any suggestions why that might have been the case?  I'm glad the pred has helped it to some extent.  

8

I can't explain except to say I"ve had a similar experience.  First symptons were arms, neck and back.  Couldn't reach up to turn off a lamp without pain.  With prednisone, great improvement but PMR seems to have settled in my legs and hip girdle.  I waddle when I walk, have balane issues and sometimes 'lock up' and can't walk at all.  But I'm still trying to reduce prednisone.  Started at 20, now at 6.  Doing OK.  Fighting hard to ward off depression with exercise and concentrating on the positives.  

9

Sounds to me like you need to increase your dose, not try to reduce it! Some people need quite high doses to knock this beast down in the beginning. Once the inflammation is under control you can then start reducing.

I'm not saying you shouldn't listen to your Dr, however, only you know how you are feeling and should keep that in mind when working out what dose of pred you take.

I've had PMR for 18  months and never been completely free of stiffness. I moan and groan every time I have to move!

10

So, you are not reducing yet?  I just don't like prednisone.  LIke choosing between the lesser of the two proverbial evils.  

11

Oh yes, my pred dose has been up and down like a proverbial yo-yo, depending on how the disease progresses/flares.

Without pred I simply can't function. I'd be bed bound.  I've had to "make friends' with it.

12

I started at 15mg and wirhin a week needed to go to 20mg and stayed for over 2mos before my 1st reduction which my rumi told me to go to 17.5 which was way to much even using the dead slow method. I stabalized for 2 mos and now i can only reduce by 0.5mg at a time.

Way less than the 10% recommend. I tell you this to point out we are all different however with commonalities due to the disease, one being the majority of us cannot rush dropping.

If your in pain your body is telling you something. You may not have stabalized long enough before you dropped.

These forums are a trove of information and look up reduction. Information is powerful when seeing your rumi.

I hope we are of help.

Mariane

13

I've likened dealing with pred and PMR as controlling a two-headed dragon.  We need the two heads to be going in the same direction, towards recovery, and the "thrill" of dealing with this illness lies in learning how to manage the treatment.  We are mostly all on this forum not because we have PMR, but because we have to take prednisone or its relatives.   🐉🐉  

14

Believe me, none of us like Prednisolone, but it is the only thing that has an effect on the inflammation. It is definitely the lesser of the two evils. I can't see any point in having the side effects of steroids and still having the pain.

If you allow the inflammation to continue in your body you run the risk of developing much worse conditions. GCA and its possibility of blindness, cardiovascular problems and cancer to mention just a few! The idea is not to get off Prednisolone as fast as possible because the likelihood is that your body will be damaged by the inflammation AND you are likely to relapse and have to start all over again! The tortoise and the hare comes to mind!

Personally I want this to go and stay away! (I know that there is no guarantee of that but I'm doing all I can to reach that stage...)