Getting worried

[Hunter134]

Hello again.Was getting worried aft getting a flare in January under control with going up to 15mg.Then last week started getting back pains again.My husband and I went to Niagara falls and aft one night the pain was all over my body.Similiar to my very first flare.We had to leave .I upped my Prednisone again but it's been four days with a bit improvement.Its upsetting me that it's been slow.Just wanted to ask if it sometimes takes longer and am I impatient.I am getting blood work on Thurs which I know my reads will be high.Reumy calls me March 14.

[piglette]

PMR is none too keen on too much exertion, including vacations and enjoyable trips. I hope the increase in pred helps. Take it easy for a day or two.

[DorsetLady PMRGCAuk volunteer]

Sorry going to ask questions, bit more clarity on doses might help….when you went to 15mg in January, how long at that dose? Did you decrease, and to what before pains returned?When you say upped dose - to what?

This post contains advice about dealing with flares, so yes you may be being a bit impatient -

healthunlocked.com/pmrgcauk...

[Hunter134 in reply to DorsetLady]

I stayed on the 15mg for a week.So I upped it last week to 20 mg.Its helping a bit but I couldn't get over how fast it hit me.Pains started in my back and hips.Then it shortly went into my legs.My legs tend to swell in a flare.So similar to my first diagnosis.I always felt my reumy didn't give me a strong enough dose with my second flare two years ago.Took over a month to feel better.

[DorsetLady PMRGCAuk volunteer in reply to Hunter134]

Ok thanks, as PMRpro says the trip to NF maybe have a bearing - different scenario to normal life, doesn't take much to tip PMR into the abyss particularly if it’s already teetering on the edge! Hope another week at 20mg, with you giving yourself some TLC will help…

[Hunter134 in reply to DorsetLady]

Thank you for for support!

[PMRpro Ambassador]

Bet the worsening at NF was at least partly due to the different bed/pillows! I had a bad back last week and it got worse after the bedding was changed and the pillows got shuffled! Switched pillows again and while it isn't perfect it is a lot better! That could have extended the problem.

But patience is a virtue in PMR ... In fact, more a necessity!

[Hunter134 in reply to PMRpro]

Thank you for responding.Its hard theses days to get any help except I n this site.I am so grateful to all of the people on here!!

[SnazzyD]

What did you do when you went to the Niagara Falls? A day on one’s feet or different terrain, or longer than usual car ride can set off muscle aches without it being a flare. Been there done that a few times! PMRPro has already suggested a different bed which is another change than upset the muscles.

[Hunter134 in reply to SnazzyD]

Just went to dinner.Came back and the pain had spread to my hips.By morning I was much worse.Barely could get down to the van.Thank god I don't pack much.

[Musiclady18]

Just read your note and I too had a flare up in January. Sounds like you are in Ontario as well I am in Hamilton! I thought it was the damp weather in January, but my flare was like it was when I started PMR 3 years ago. Finally my Rheumatologist called and put me on a dose of 20 mg of Prednisone and dropping every 4 days by 5 mg. She also put me on Methotrexate and told me to increase it after 2 weeks. After a week of that, I had headache and my eye bothering me. My pain has subsided but now I am being tested for PMR that might possibly be going into GCA, I hope not. Anyway I found your story of pain to be so much like mine, I hope you get the proper treatment, like I, as my pain is now gone, again!

[Hunter134 in reply to Musiclady18]

That's nice we both live in Hamilton.lol I ve been on 20 mg for almost a week.Relief isn't as quick as I'd like but the last flare took awhile to leave as well.My pain at the moment is in my upper thighs.They swell.I hope you don't have giant cell too.We re your sed count and CRP high?

[Musiclady18 in reply to Hunter134]

I do not believe they are checking my sed rate???? Not sure why not? I will have to ask again? Just went for blood yesterday so we shall see! Small world I say! Take care of yourself!

[Hunter134 in reply to Musiclady18]

Hope all goes well!I go tomorrow which iam positive my reads will all be high.You take care too❤️

[Musiclady18 in reply to Hunter134]

Just checked my reads and yes I am high but not as high as I was beg of February! Good luck with your bloodwork! Take care, stay healthy

[Hunter134 in reply to Musiclady18]

Could I ask how high?Iam afraid to look at mine My reumy doesn't call me til Mar.14th.I would worry about it all week

[Musiclady18 in reply to Hunter134]

Do you not get your test results directly sent to you? Hmmm can I ask do you get Sed Count done? Does that go by another name? I don't seem to get that one? Not sure why not? My CRP is at 15.8 better than last time!!!! Is that where your levels are or ???

[Hunter134 in reply to Musiclady18]

I get my results on my phone.My CRP was 12 last time but I have ostio which my Dr said can raise it.My reumy does both tests.The sed rate and CRP.Obviously they do more than that.Iam guessing our weather isn't helping us as well.Thanks for the reply.

[Hunter134 in reply to Hunter134]

I don't have to look at them.lol

[PMRpro Ambassador in reply to Musiclady18]

A lot of doctors dismiss the sed rate as meaningless and use CRP. In fact, one of the places where sed rate is quite useful in monitoring patients with PMR as it often follows the disease better than CRP!

[Musiclady18]

Right, you know how you feel as my grandfather used to say!

[Johnnox]

Hi, what can I say to reassure you? I was at 5mg recently when flare hit; instructed to go to 15mg with 2.5mg reductions weekly back to 5mg. Only this time it's not working. The pain is chronic as is the debilitating fatigue which is a constant companion with my PR and is ever-present leaving one to feel that one is living in a fugue. My dx of Parkinson's doesn't add to my relief.Yet while I'm alive I can work with these pests. At least I have that opportunity. Try not to add to your inboard stress levels and get enough meditative rest. Try Jon Kabat-Zinn on YouTube with his 7 attitudes. Dr Kabat-Zinn is an Emeritus Professor of Medicine in the USA and is well worth a listen. Go Well! Patience/Acceptance/Letting Go are included.

[Hunter134 in reply to Johnnox]

This disease can be relentless.Just when we think we see the light it reappears.Very painful and deliberating for sure.One can easy feel defeated.I ve had three flares since 2019.They be all been different which can be confusing.Relaxing may help me.I ll try some of your ideas Thank you.Hope you get better as well!!!!