I can't seem to catch a break

[Hunter134]

I thought my pain was my prolapse but this week I realized iam in a bad flare.The familiar symptoms of pmg reared its head.Hard to walk,sore legs,arms and all around my pelvis and back.Called my reumy but he hasn't called back.The pain is so bad I can't sleep.The only good news is the secretary at my new ultrasound felt sorry for me and put my appt ahead for Monday.Just gotta hope I can walk in there.So tired at the moment.I think iam going to be a long hauler.

[Seacat30]

How about it being a sign of being under horrible stress rather than being a long hauler?

[Hunter134 in reply to Seacat30]

That could be the issue but the stress just keeps coming.

[Seacat30 in reply to Hunter134]

Maybe your ultrasound on Monday will be a step towards sorting out at least one problem. Perhaps that will ease some of the stress?

[Hunter134 in reply to Seacat30]

Yes it will.Just would have been easier if I wasn't in so much pain.I guess we all have frustrating stories to tell.Thank you for responding.I love the ppl on this site

[PMRpro Ambassador]

Bit soon to assume that after just 2 years - my 2 friends who have had PMR twice with a big gap between said their two episodes were totally different but both were off pred the second time in well under 5 years which is actually pretty normal.

[Hunter134 in reply to PMRpro]

I was worried about being on already 15mgs that a bad flare was unexpected.I can never get a hold of my reumy either so iam on my own.Went up to 20 mgs and I hope it helps.If it doesn't I guess I ll need more.Hard to watch my husband try to help me with a walker and balance issues.This disease is aweful.

[Hunter134 in reply to Hunter134]

I've had this for 3 years but I did get down once to 7 mgs.Since I've moved it's been relentless.

[PMRpro Ambassador in reply to Hunter134]

I got down to 4mg a few years ago but then had a relapse - I'm pretty sure it was near enough gone but I didn't get to zero before it came back. But the last 3 years were difficult with my husband being ill - and it didn't help at all. Your house move will have been a very stressful experience in itself - and once it starts it does tend to build up. And it is the same now - another medical problem tacking itself on to things. Your doctor are really not helping either if you ask me, 15mg is the lowest starting dose and then as things flare up it often is harder to get things under control again anyway.

[Hunter134 in reply to PMRpro]

You ve had a tough time too.Have you been able to reduce now?I remember you saying you had to go on 20mg.How long did you stay in that dose?My Drs are useless for sure.Thats not helping me either.

[PMRpro Ambassador in reply to Hunter134]

I have gone down to 17mg at present - but I started tocilizumab 6 weeks ago in the hope that can get the dose down. I had a horrid flare in early March, no idea why really unless it was the last 2 years catching up at last, and the back muscle problems and hip bursitis have REALLY been stubborn even with more pred. They are still there BUT I have the feeling they are finally easing and that it is the TCZ. Fingers crossed.

[Hunter134 in reply to PMRpro]

Oh dear iam so happy you re heading in the right direction.I wish you the best of luck and thank you for your response.I wish you were my Dr.lol.In my eyes you know more than mine.

[PMRpro Ambassador in reply to Hunter134]

Haha - only because it has been my specialist subject for 12 years plus I have close contacts with a few leaders in the PMR research field.

[Hunter134 in reply to PMRpro]

You're really smart that I know!!!!

[powerwalk in reply to PMRpro]

Pro, how are you finding Toctocilizumab? Did you go that for pain?

[PMRpro Ambassador in reply to powerwalk]

My rheumy offered it to see if it will let me reduce the pred - early days yet.

[powerwalk in reply to PMRpro]

Good luck with it, hope it helps.

[PMRpro Ambassador in reply to powerwalk]

So do I!!!

[Mmjj]

I feel for you I’m in a similar situation but I’ve now upped my steroids. Awaiting bloods but there is a 3 week delay and the pain was far to debilating to wait.

[Hunter134 in reply to Mmjj]

It just feels like we re on a rollercoaster..Ups and downs.I feel for you as well it can get to be very hard.I upped my prednisone too cause I knew I was flaring.Went for bloodwork this morning so iam positive my reads will be up.Reumy calling me Tues.Good luck with your bloodwork.

[Mmjj]

Thanks my concern is by the time I have blood done the inflammation will be under control so it won’t show

[Hunter134 in reply to Mmjj]

How many mg of prednisone are u on?I've upped mine for 3days but not much better yet.Maybe a week or so before go back to ur original dose.

[Mmjj]

I had got down to 5mg (started at 15) and have upped to 10 😬

[Hunter134 in reply to Mmjj]

You re feeling better then.But you're right your reads won't be accurate.So if it was me I'd go back to 5 just before u get bloodwork.Its hard to know what to do.If my reumy knew I upped mine he'd be angry.

[Mmjj in reply to Hunter134]

So difficult I’m just under my gp

[Hunter134 in reply to Mmjj]

Has the pain gone at least?I thought my pain was my prolapse so the inflammation got a good hold on me.Been 3 days but not feeling much different.

[Mmjj]

Day 2 and so much better so it obviously was a flare, think I’ve rushed my progress alittle to much and have been ignoring the warning signs

[Hunter134 in reply to Mmjj]

It's easily done.Seems we need to make out own decisions sometimes.Glad your feeling better.

[Mmjj]

Thankyou