Figured out what back/side issues are BUT nothing works...

[Wallysma]

Hi all....hope 2023 is starting out with less pain. So I have struggled to find a dose of pred that works for me. While I have several autoimmune conditions the PMR symptoms are different enough and are in different "locations" for the most part. But the one very debilitating issue is my back/sides. I am already on pain meds (3) for these other things. I have not had issues with my back before PMR now I can't stand for more than 5 mins. before it goes nuts. I did not injure it. When my PMR started I was do focused on the pain in my hands. They became useless. The pred (23) helped a lot after a couple of days. That was when the other typical symptoms became clear....neck sore, legs- thighs, girdle area,.arms. My arms feel useless....I have to bend my head down to side to brush my hair. They are shakey, weak, very difficult to do stuff. My hands are painful.

Since diagnosed pred dose has been all over. If I finally got a good result after a couple of days it would return to where it was.

So right now I am treating a strange skin thing (waiting to see biopsy report...something about skin thickening....sounds gross) and waiting on lots of blood work so I can start Actemra. The doc thinks my RA might be involved. I am not so sure....but will do whatever. I know they ordered an RA rest.

So I have increased my pred...going in wrong direction....even 30. But not working on my back.

After reading a lot of great info. here on sciatica and performis muscle issues....and I read what was here and other places I don't have those. I have back muscle pain it's around the back..."belt level".

So does that sound like PMR?

If not why don't the pain meds help?

Why doesn't the pred help?

I think I am going to start reducing the pred again. I see my rheumy in a week or so. I went up on my own to test it....but.....

Also another q. I am taking my pred at 2 am but I find that by late afternoon (4+) I feel like it's wearing off fast and my whole body gets cranky.. that full PMR feeling. Does that make sense to anyone? Anyone have this? The intense fatigue is ever present. My mood is low.....no surprise.

Thank you so much for the read.

Be well everyone.

[PMRpro Ambassador]

That is where some of my back pain is - it is due to spasmed muscles probably resulting from myofascial pain syndrome/greater trochanteric pain syndrome. The specialist in the pain clinic is on the case - I hadn't seen her since the second lockdown resulted in we mere mortals being abandoned. A lot of something built up in that time.

One of my pains is just above where her hands are in the second image

webmd.com/back-pain/ss/slid...

It is improving at last but it does wake up after walking for a while.

The pred doesn't help because it isn't "just" inflammation - it is structural and relates to a lot of things. I think if I weren't on anticoagulant therapy she would use steroid injections - but she won't. My rheumy isn't as reticent but I haven't seen him for a while. He does something called neural therapy - it is available in the USA I think. It isn't an instant answer though

Nearly forgot to say - she had my hips x-rayed the other day, don't know the result there though. But she says that hip problems can refer across to the low back.

[Wallysma in reply to PMRpro]

Thank you for the info. I will take a look. It is frustrating for sure. I will ask the rheumy about myofascial pain and or trochanteric pain. It came out of no where with the PMR. 0 to 100 fast. Also...do you have any ideas on the pred effects disappearing late afternoon? That is strange for sure. I have not seen that here in my travels yet....but obviously my experience is limited.

Thanks!

[PMRpro Ambassador in reply to Wallysma]

The only thing I can think of is that you metabolise the pred in a different way. The antiinflammatory effect of pred USUALLY lasts 12-36 hours and symptoms return as that wears off. It does happen and some patients find they need to split their pred dose so it works the full 24 hours. You would fit into the very low end of that - have you ever tried splitting the dose?

[Wallysma in reply to PMRpro]

No....how should I do that...cut dose in half take one dose at 2AM and the other at 2 PM? Could try that. Thanks Ms. Pro!

[PMRpro Ambassador in reply to Wallysma]

If it does work and you can get relief for the full 24 hours it also takes away the need for the 2am dosing! You can arrange it to be the most convenient. It doesn't always need to be 1/2 and 1/2, usually we suggest about 2/3 early morning and the rest late enough to carry the effect over to the next morning dose.

[Wallysma in reply to PMRpro]

Oh..ok. I think I will try that. It makes sense. Not worrying about that dose at 2 would be nice.

Thanks. Enjoy your weekend.

[Nightingales in reply to PMRpro]

I have trochanteric pain syndrome and cortisone injections help a lot but as you can’t have them that’s no help to you 🥴 The pain you describe is where I get Sacro iliac joint pain. Like a knife sticking in just above the rim of the pelvis sometimes going through to the groin. The best thing I ever had for this was Radio frequency nerve ablation. It lasted 18 months. Unfortunately SI joint problems don’t show on usual X-ray.

[PMRpro Ambassador in reply to Nightingales]

It depends who's on the giving end! The rheumies are OK about the concept, I trust the boss to do them, less sure about others. It is the pain specialist who is so wary. The neural therapy is subcutaneous injections and I don't bleed with that at all - despite which I leave looking like a mummy and a large amount of dressings which are hell to remove!

[Nightingales in reply to PMRpro]

I have all mine at the pain clinic under X-ray guidance. I agree effectiveness isn’t very dependant on who is doing them. Strange that the rheumies are not reluctant. Mine doesn’t even want to put his hands on me. I am not that gross!

[PMRpro Ambassador in reply to Nightingales]

Mine is lovely!! He does local soft tissue injections rather than intraarticular but it still works well. Maybe it is the Germanic training - very hands on here, all of them - especially physios. My GP is horrified at the concept of telephone consultations.

[powerwalk]

I can relate to this back pain at that level. It has been relentless, it also "catches" sharply when i move, going to stand up etc. I had two separate lots of steroid injections oct and december with no affect. He did the sacro joint and lower which also pains, despite me telling him this other place at waist height was bad. I even marked the spot with tape. I dont know what to do now! Your rheumy might give you some help. Do let us know how you get on. Its just never ending.

[marionofnorwich]

I guess we have to bear in mind that we are basically a load of sticks (bones & joints) held together with elastic bands (muscles, tendons and ligaments) which stretch and move about so tightness in one area will cause tension in another. A weak joint (hip?) being supported by over-stressed ligaments is likely to cause upset further round and up in the back as it puls on the next joint (sacro-iliac). Sometimes it is worth looking firther away than the site of pain. I found that stretching the large thigh muscles (quads and hamstrings) really helped my hip and knee. Plus massage helps to get blood circulating to otherwise starved msucles. And keep hydrated. I wish I could follow my own advice!