PMR and starting Pred: So My GP thinks I have pmr... - PMRGCAuk

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PMR and starting Pred

Timber123
Timber123
50 Replies

So My GP thinks I have pmr and so do I. I am not taking prednisone until the end of the month as we are trying CBD oil first (have since read it doesn’t really help for pmr). So far CBD hasn’t touched my pain.

My question is this. Earlier in the week I was so sore. Needed to go clothes shopping and I was tired and exhausted by the end having to wear a coat and use my arms so much trying on tops.

So the next day I took extra strength Advil (ibuprophen) along with the CBD oil. Just needed to function. That whole day I felt wonderful. I was able to clean the mud room out top to bottom and go on two walks. I could cross my legs with little pain and get off a chair easily. I could even get my socks and shoes on which normally I dread. Still sore, couldn’t get off the floor, nights still hard but still much better with the advil than on CBD oil alone.

So if the advil is working along with CBD oil, should I continue taking the advil instead of committing to prednisone? Or maybe it means I don’t have pmr? Or maybe I just had a couple good days and it was coincidence? Does anyone else get some relief with Advil?

Thank you for helping a newbie.

50 Replies
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HeronNS

You need to bear in mind that Advil (ibuprofen?) is not without its own risks, including stomach bleeding. You also say you have significant pain and discomfort at certain times and when performing certain actions, even though the Advil has helped. Prednisone at a correct dose will take away much more of the pain, and with a careful, slow taper you can reduce your starting dose quite effectively to a level which comes with a minimum of side effects.

None of us wants to take pred but most of us have found it's the best treatment for us.

I've been trying to use occasional aspirin or tylenol to overcome what I hoped were only withdrawal symptoms, but over a few days found things just worsened so have to admit the disease (after four years treatment) is still active, and I need what I need of pred to function well. To encourage you, the dose I need is around 2 mg, and has been for several years, so both I and my doctor are reasonably happy.

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Timber123
Timber123
in reply to HeronNS

It sounds like you are well managed and I'm glad for that! Sad that you still have active disease after four years is still there. 2mg sounds reasonable.

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PMRpro
PMRproModerator

It is very unusual to get that level of relief from PMR with ibuprofen/Advil. It barely took the edge of for me. And long term iboprofen is not an innocent either - I have a friend whose GP insised on ibuprofen for her PMR and after just 3 doses she was in A&E with gastric bleed.

But don't fall for the illusion that pred is bad, no pred is good. Untreated PMR is 7x more likely to progress to GCA. And neither ibuprofen nor CBD oil will protect you from potential visual loss if that happens.

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MhairiP
MhairiP
in reply to PMRpro

I assume you mean PMR, not PMT?! 👍😂

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PMRpro
PMRproModerator
in reply to MhairiP

Ta - duly changed! My excuse is I was typing after an eye appt with pupil dilating drops!!!!!

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Timber123
Timber123
in reply to PMRpro

Thank you PMRpro. This is the kind of info I need! I know the effects of Advil but wonder if it is the lesser of two evils. I took advil for migraines when I was nursing and on nightshifts. I worry that is why my hearing isn't as good anymore. So taking advil is not something I want to do but worry the pred will do more damage. If untreated PMR is going to higher my risk of GCA that might push me to the pred.

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PMRpro
PMRproModerator
in reply to Timber123

If I had the choice between an extra mg or two of pred or Advil it would always a bit more pred. I have a PMR friend who was told to take Advil for PMR - and after 3 doses was in the ED with a coffee grounds bleed!

Most pred adverse effects can be minimised or managed when you know how. You may start at what seems a high dose (it isn't, over 20 is high) but that is to clear out existing inflammation and then you reduce to find the lowest dose that gives the same result as that starting dose did. That is also to take account of anything that isn't directly PMR-related.

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Timber123
Timber123
in reply to PMRpro

So should I push for 15mg to start or 20 or what she thought, 25mg? It seems like there are so many starting points and I want to do what's best. She seems to want to try 25mg x 3-5 days and see if that pushes me into remission and confirms diagnosis without long term committment but will also give me more pred if short term doesn't work. She says she doesn't think my adrenals will shut down if I do this for 3-5 days and I can easily restart and due more long term pred if needed from there. I've only read of a few people who did this. I don't know if she is really on top of things or way off.

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PMRpro
PMRproModerator
in reply to Timber123

It doesn't "push you into remission" - it clears out the inflammation. PMR is not the illness, it is the name given to the symptoms of an underlying autoimmune disorder. No inflammation, no symptoms. Stop the pred and it will all reappear as if by magic. The pred has no effect on the actual illness at all. But the problem is more that only 3-5 days may not be enough for everyone - and other things beside PMR will respond to higher doses of pred.

I would be inclined to try 20mg for a week - that balances both aspects. I had a miracle in under 6 hours with 15mg - maybe you will too.

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Timber123
Timber123
in reply to PMRpro

Thank you!

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MhairiP

My understanding is that painkillers don't help with PMR pain and stiffness at all. Also, I think for CBD oil to have any effect, it has to be taken for at least a few weeks.

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Timber123
Timber123
in reply to MhairiP

Thank you. I have read that painkillers don't work also. The advil helps but doesn't take it away completely. And the CBD oil hasn't touched me after taking it since Mar 21, even though I'm at the max dosage now. If anything, it may help me sleep a bit better.

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MhairiP

Sorry - I forgot to say welcome to the forum!

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Timber123
Timber123
in reply to MhairiP

Thank you for having me!

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Soraya_PMR

Brufen never helped me. Upset my stomach quickly though.

Coats! Yes I get that! All the heaviness around your shoulders. At the beginning of this year I purchased a made in Canada, warm but super light ‘puffy’ jacket. I figured the Canadians know how to keep warm. It’s quite fitted, but no restrictions round the shoulders. It’s been an absolute boon.

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Chrob
Chrob
in reply to Soraya_PMR

Looking into one of those coats now myself , my best winter coat is far to heavy can’t put it on myself . Charity shop visit I think for it .

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Timber123

Funny, I am from Canada and yes, we know our winter coats! I actually find the Eddie Bauer ones the best for me. Light but warm and durable. I bought a spring jacket from Costco the other day and that is the one that felt so heavy. But I also don't carry a purse so my pockets weighed down my coat with my phone, keys, etc.

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Soraya_PMR

Mine is a PointeZero jacket (via Long Tall Sally coz I’m a lanky one 😉)

Time to rationalise your pocket contents? Lighten your handbags! It can make a difference. I tend to use a small backpack type handbag now, I don’t need any encouragement to hunch my shoulders, and one shouldered bags do make me hunch up to keep it on.

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Timber123

I carry a wristlet which helps. And usually only keys and phone in pockets. But when I walk my dogs my pockets are full of their gear plus that constant jerking on the leash is hard on the shoulders. But not complaining as they force me to keep somewhat active along with my fitbit. The one thing my doc says is too keep moving no matter what. That is hard but I try to do that with appropriate rest.

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Soraya_PMR

Get your dog a jacket with pockets. Make them carry their own gear! 🐕🐩

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Hidden
HiddenAmbassador
in reply to Soraya_PMR

I would never catch her to get a pooh bag in time - she drops and runs😂😂😂

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Hidden
HiddenAmbassador
in reply to Timber123

I bought a lead with one of those shock absorbers on. It doesnt take all the strain but does allow you to get ready for the jerk and pull!

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Hidden
HiddenAmbassador

Clothes in general were difficult in the 3 months prior to dx. I used to have a panic attack trying to get my tops off if they were over the head style. I couldnt wear my walking coat and so on. The first year i bought tops two sizes larger than i wear so i could get them on and off. Even button up was difficult to get out of. I suspect without pred i would still be having a panic attack trying to wriggle out if my clothes and getting stuck! Painkillers never even touched that pain and stiffness, even prescription strength. Pred allowed me to get dressed etc within a few days. Everyone has to decide how they want to manage pmr but i feel safer and enjoy life more on pred than i would without it at the moment.

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Timber123
Timber123
in reply to Hidden

Every morning when I get up I swear I'm going to the doc and starting pred. As the morning goes on I feel better and can go for a long walk. By supper I start feeling stiff and sore again. I can walk on a flat surface forever, get sore but still doable. But any bends, for inclines and I can barely manage. I have walked and even ran for years so I am almost fascinated by this. I also feel I have to unfold myself slowly as I get out of a car or bed. But I am a retired nurse too so all this is as intriguing as it is devastating....

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Hidden
HiddenAmbassador
in reply to Timber123

Yes it is very hard. I call the walk my frankenstein walk, getting out of cars a nightmare pre pred. Hills a no no for me when i had piriformis. I get the fascination even though i have no clinical background. Stiff and sore are one thing...being 7x more likely to get gca (pp in another thread) is another. Dont let your curiosity threaten your sight. 🌻

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Timber123
Timber123
in reply to Hidden

So was your piriformis issue caused by pmr or are they two totally different things?

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Hidden
HiddenAmbassador
in reply to Timber123

Yes i think it was connected to pmr. I have had back and leg issues from nerve damage years ago. But with pmr i suddenly couldnt walk uphill or bends or even stand in one place to say, chop veggies. My right buttock killed!! It was like a burning knife sticking in it and it took a few minutes to stop burning even when i stopped the activity causing it.😫

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Soraya_PMR

There’s a few of us nurses here....🙃

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Hidden
HiddenAmbassador
in reply to Soraya_PMR

My friend who was a nurse for 50yrs is a terrible patient! Are you all the same 😂😂😂

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Pollyanna16

I find CBD oil helps me sleep & lessens anxiety. I don’t think it’s doing more than that. A friend who refused to take pred became very ill with GC A, not worth the risk! Good luck with your treatment.

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Timber123

Is there a timeline with GCA? I feel I may have had pmr for months if not more. Does it usually develop quickly if it's going to develop at all?

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Hidden
HiddenAmbassador
in reply to Timber123

I dont know if theres a timeline. Some people get gca the pmr so its a complex set of issues. I suspect i had pmr for at least a year pre dx. My feet seemed to be the worst at first then a stressful period. 3 winter months with no heating and hot water followed by 5mths of builders. I really didnt feel well after that!

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Timber123
Timber123
in reply to Hidden

Wow that is awfully stressful for sure

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PMRpro
PMRproModerator
in reply to Timber123

No - PMR can progress to GCA as simply PMR being a symptom of GCA or patients may have PMR for months or even years and then the symptoms of GCA suddenly appear. The ongest I have heard of was about 5 years.

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Timber123
Timber123
in reply to PMRpro

Will the GCA symptoms be obvious? I will be on a cruise next month and want to make sure I’m prepared. Sorry for so many questions!

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PMRpro
PMRproModerator
in reply to Timber123

You'd hope if they were there would be far less problem for doctors to recognise and treat it! Unfortunately ...

When you travel make sure you have enough pred to be able to take 60mg for a few days just in case - you will use it up eventually anyway! And read up on the potential presentations - this thread would be a good start:

healthunlocked.com/pmrgcauk...

There will be a medical presence on the ship - and as long as you have some to be going on with they should be able to get more at a stop as I would doubt they have much stock on board.

Where are you off to?

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Timber123
Timber123
in reply to PMRpro

Ok, thanks. I was thinking to have 60mg doses on hang just in case.

Off to the mediterranean for our 20th anniversary. Italy, Greece and a couple days in Paris. Have never been overseas so quite excited. I am going to buy a collapsible walking cane just in case.

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GlynisE

Before diagnosis I was taking Naproxen twice a day it hardly controlled the pain but it made me doubly incontinent. When you get to the toilet and then can’t get off with the pain.. then I was diagnosed and put on Pred and got my life back. Still have problems with my legs and my knees are lumpy and the backs swollen but I can function. I take CBD oil to help me sleep when I am upset or anxious.

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damselinarap

Hi GlynisE

This is my first post you say you have lumpy knees.l have them too but my rheumatologist said this is not a symptom of PMR it’s all very confusing one minute he says lve got PMR and then l go for another appointment and he says it inflammatory arthritis but l have all the other symptoms of PMR.

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PMRpro
PMRproModerator
in reply to damselinarap

Knees are often involved in PMR - I wish doctors would listen to patients and not just say "it isn't PMR". Though to be fair - inflammatory arthritis CAN present looking just like PMR.

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Timber123
Timber123
in reply to PMRpro

My knees have never been a problem for me until a couple weeks ago. Makes me nervous as I love to walk. Feels different, more joint like than the other pmr symptoms.

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Soraya_PMR

Take a google at Bakers Cyst, these seem to be a relatively common ‘add-on’ to PMR.

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Timber123
Timber123
in reply to GlynisE

Wow, I don't have any visible swelling yet. I'm glad the pred has helped you so much. I look forward to this relief also.

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GlynisE

Are the backs of your knees swollen?

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Soraya_PMR
Soraya_PMR
in reply to GlynisE

Take a google at Bakers Cyst, these seem to be a relatively common ‘add-on’ to PMR.

Fluid retention? Salt intake?

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GlynisE
GlynisE
in reply to Soraya_PMR

I don’t think so more like inflammation as they are red. Just happens when I have done too much.

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damselinarap

No there okay,have been using my tens machine and it does seem to help.

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SusanEleven

Ibuprofen did zero for my PMR pain whereas starting prednisone took only 6 hours for what felt like a miracle. I put away my cane, could stand up from a seated position on my own, and had my first good night of sleep since the “mystery pains” had started.

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tazman3

I'm new here and am really worried about taking pred. I've had the blood tests and my GP has referred me to NHS Rheumatologist. The waiting list for first visit is 25 weeks. I wake up with another painful part every day and struggle to get out of bed, lift my arms, get dressed etc. I live alone so have no help. I'm nearly 62 and already have fibromyalgia, osteoarthritis in back, neck, arms and have regular shots in my fingers.

The thing I'm most worried about is the fact that I have lived with depression and anxiety for most of my life. It runs deep in my paternal line and before the pmr symptoms started I had just come out of a 10 year depression. I spent last year losing weight and felt much better about myself.

I'm now facing weight gain and possibly sinking back into the black hole. I'm taking ibuprofen in high doses, but it barely helps. I have taken codeine for years because of my OA but it doesn't touch the pmr. I can feel my mood slowly sinking already.

I apologise if this is in the wrong place, but maybe the mods can move it to a better place.

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PMRpro
PMRproModerator
in reply to tazman3

I can't move it and it appear as being from you which will complicate things - just copy and paste it to start a new thread: scroll to the top of the page and you will see a blue box with a pen and "Write" in it. Click on that and a new post box will appear - give it a title in the top space and put the post in the lower one and post it. If you really can't manage that, I will move it and start a thread - but it will be in my name. Just reply to me here.

Why do you think you are "facing weight gain"? Weight gain with pred is not inevitable - cutting your carbs drastically will make a big difference - and many of us who didn't know that have been able to lose weight while on PMR doses of pred, I lost 35lbs and currently maintain my weight despite being on 15mg pred for a flare. Others have even LOST weight on pred without trying - some people do.

Depressive mood is also part of PMR - and is it possible the fibro is really part of the PMR? You wouldn't be the first to find that. Ibuprofen is not good for you in high doses and as you are finding it doesn't touch PMR.

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