Should I or shouldn’t I increase my Prednisone? - PMRGCAuk

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Should I or shouldn’t I increase my Prednisone?

Dewdrop456
Dewdrop456
44 Replies

I have got an extremely sore and swollen knee,as previously mentioned.Two visits to the doctor have resulted in one x Ray ...”Normal” and a referral to the muscular clinic for an Arthroscopy (I don’t think this is a good idea but never mind).Are knees ever involved in PMR or is this a separate problem?

Apart from that ,my actual PMR seems to be alright at the moment ,have just DSNS ed my dose down to 6mgs.The only PMR symptom I have now is the heaviness in the backs of my thigh muscles.

My questions are ;1) Should I increase the Pred to help my knee even through it isn’t under my PMR umbrella of usual Pop Up pain?

2) I can easily put up with the muscles heaviness but don’t want to underdose if it’s inflammation that I should deal with ,by increasing the Pred.As it’s just the muscles and not my usual PMR flare pains shall I just go straight on with reducing down to 5.5?

Thank you.

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jinasc

Has anyone checked for pseudo gout, caused by calcium crystals. I only ask because it happened to me within a year of being diagnosed with GCA and put on pred, calichew etc without anyone checking I did not need any calcium and that resulted in pseudo gout and grit in the gall bladder.

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Dewdrop456
Dewdrop456
in reply to jinasc

Thank you jinasc,I will mention it.I did actually ask about testing my Calcium levels to the Phebotomist but she couldn’t because it wasn’t on the request form.

It is unlikely that I have too much Calcium though as I only took a few Adcal tablets before stopping because they upset my stomach and I have never taken the Anadalic Acid either because of the comments on this site.Which is why I thought that I ought to have it checked.

Something is causing the worsening swelling ,pain and stiffness though.I hope my appointment comes through soon.

Thank you very much for your .thoughts.

What happened about your pseudo gout and gall bladder?I hope that it has been sorted out for you.

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jinasc
jinasc
in reply to Dewdrop456

Pseudo gout, sorted out by Rheumy the same day I went to see him and he asked why I was not walking properly - took one look at swollen knee.....sorted out that day and one week later all good. My Rheumy and GP were my best friends for 5 years.

7 years down the line-------gall stones..........grrrrrrrr.

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Dewdrop456
Dewdrop456
in reply to jinasc

Oh dear.So are you still having gall stone trouble?

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jinasc
jinasc
in reply to Dewdrop456

Oh I am soory if you have worried. I should have said, op nearly 3 years ago and OK. As the gall ladder bloke said, the grit does not always combine, he said with a smile,' if he x-rayed a the whole population of the town I live in, would find grit in 90% had grit'. It was about in 30% that the grit combined to make a stone. I ttturned out to be one of the 30% but it was 6 or 7 years later.

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Dewdrop456
Dewdrop456
in reply to jinasc

Good ,I’m pleased you’re alright now!!

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HeronNS

My personal opinion is that pred should be reserved for what it's prescribed for. We have enough trouble reducing the dose without adding more for other conditions. As you say yourself your PMR symptoms are under control. I know short term pred is prescribed for other conditions, and in that case it's definitely one time I'd defer to the doctor's instructions.

Jinasc's information is very interesting. If you are taking calcium supplements you could consider also taking Vitamin K2 and making sure your magnesium intake is adequate. This will help send calcium into the bones where it belongs.

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Dewdrop456
Dewdrop456
in reply to HeronNS

Thank you HeronNS,that is reassuring advice,of course I really did not want to increase my Prednisone but equally didn’t want unchecked inflammation flouting around doing damage.I just don’t believe the knee is PMR.

Please see my reply to jinasc regarding Calcium.I do take Magnesium as it helps with leg cramps but I haven’t got round to Vit.K yet.I will ask for a check on these things.

Thank you for your advice and reassurance.

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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,I wouldn’t use Pred as a painkiller for anything other than your PMR - it’s not designed for that. Have you tried paracetamol or similar?

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Dewdrop456

Hello DorsetLady ,well reluctantly but absolutely ,necessarily I have been taking Paracetamol at nighttime and early morning in preparation for the dreaded pain upon getting out of bed .Please see my reply to HeronNS regarding my fear of unchecked PMR inflammation .I didn’t think my knee was PMR involvement but wasn’t sure.

I am hoping my appointment will come though very soon .Thank you.

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Dewdrop456

It’s very difficult sometimes to tell what pain is what, I know! But I found once I got to low levels of Pred it did nothing for my Arthritis pain - unfortunately, whereas at higher doses it had.

Sometimes it’s just trial and error! And keeping a diary of what helps what and when!

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Dewdrop456

Thanks .I sometimes jot the odd PMR thing down but only rarely.I do record my doses on the calendar though.It is probably a good idea ,thank you I shall start!

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Dewdrop456

It is a good idea, it’s so easy to forget from day to day. Doesn’t need to be war & peace - just important points!

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HeronNS
HeronNS
in reply to DorsetLady

I've been meaning to ask you how your feared flare developed. Did you find it subsided and you are okay again? Was it "just" OA? I ask because I'm in a quandary at the moment. Sometimes I feel fine and other times not so much and I try to remember how I was before PMR and I can't. I say I can't expect to feel better than I did before PMR, but I don't remember how bad I was before. I certainly had "morning stiffness" for most of my adult life, plus osteoarthritis diagnosed when I was 40, but by the looks of my feet and condition of my neck had some long before that. So, do I take more pred (as I did last week for a couple of days) on the off chance it's PMR hurting me, or grit my teeth and tough it out because it might only be OA? How can one know for sure? Oh, and the extra pred, 7 one day, 5 the next, then back to 2, did help enormously.

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PMRpro
PMRproModerator
in reply to HeronNS

If 3mg meant I felt significantly better - I'd take it and run! Both my GP and my cardiologist know that's how I feel and agree with my assessment. The cardio says "QOL is all..." - and that was with regard to 15mg pred for a/f!!!

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HeronNS
HeronNS
in reply to PMRpro

I know. But I don't think I should take pred if it's only OA. AF is a much more significant life-altering condition.

Btw I've been to see my magic physiotherapist today and I feel pretty good right now!

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PMRpro
PMRproModerator
in reply to HeronNS

Mmmm - but 3mg pred instead of 2mg pred is a very different matter from 15mg. And this is never likely to change for me I fear. Surely a mg or so one way or the other that allows really good QOL for 10 years is better than less in all ways?

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HeronNS
HeronNS
in reply to PMRpro

You may be right. At least I seem to have a reasonable doctor who doesn't scold me for still being on pred after all this time.

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PMRpro
PMRproModerator
in reply to HeronNS

If you had slightly dodgy adrenal function you would be on a low pred dose long term. If you are on a low dose of pred longterm - your adrenal function will just top-up, no more.

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to HeronNS

Hi,

Thanks for asking - to be honest I really don’t know 100%.

Both shoulders are severely affected by OA - am still waiting to be seen by Musculoskeletal Clinic. They are very stiff in morning, but is that OA or PMR/GCA creeping back. They do improve with exercise and paracetamol painwise but are still very restricted in backward movement - so that makes me think OA. Have been having massage which also helps a little.

Since initial 5 days of Pred under doctors orders which reduced ESR, I have done another trial of 10mg for 4 days (no painkillers) - did ease pain a bit - but it would anyway I guess.

I may try 5mg again for a few days and see what happens, but when I was on steroids before for GCA, I found OA pains weren’t helped at these sort of doses.

If I hadn’t had my ESR tested, I probably wouldn’t even be considering GCA - I would just assume it was OA. Sometimes, too much knowledge just muddies the waters!

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HeronNS
HeronNS
in reply to DorsetLady

Thank you. Yes, it seems like if it isn't one thing it's another, and it would be nice to know which was which....

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Hidden
HiddenAmbassador
in reply to HeronNS

Perhaps a test 2 weeks on regular paracetamol/nsaid doses would help you ID the OA? It's certainly helped me to put a pain puzzle/jigsaw together.

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HeronNS
HeronNS
in reply to Hidden

I was trying that for a couple of weeks but not keen on daily tylenol (bad for liver) nor aspirin (bad for stomach and I need it to continue being effective for headaches). The extra painkiller had a marginal effect, like it did before I was diagnosed with PMR, but I would have needed to keep on taking whatever it was every day. In the big picture I thought small dose of pred would be less harmful. I'd hoped the little extra help would get me through "pred withdrawal" if that's what it is, but I just kept getting worse day by day. I do know that pred is not recommended for OA but I didn't find clear info about whether it helped pain and if so at what dose level.

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Hidden
HiddenAmbassador
in reply to HeronNS

From what people say they find is pain coming back as they reduce. It never seemed to make a big difference to mine.

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HeronNS
HeronNS
in reply to Hidden

I've been on this journey for nearly four years now. It got exponentially more difficult for me one day when my doctor, on finding I had started taking 1.5, suggested I use up the rest of my tablets and stop and see what happened, and didn't renew my prescription. I had enough tablets to do dsns to zero, but I never got that far. Next time I saw a doctor, several months later, to ask for a new prescription, I was practically in tears from increased pain, because obviously 1 mg was not enough, it was a locum who understood what I was going through and told me to go back to 5. I have never since (about twenty months) been able to get back to 1.5, and even 2 is a bit rocky and I sometimes take more, but that's after another fruitless effort to get to 1.5. Have I learned my lesson yet? 🙄

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Hidden
HiddenAmbassador
in reply to HeronNS

I think it's worthwhile keeping a stash for emergencies. I am not so panicky since Rheumy stopped reduction last time I saw him and left me at 6mg. I see him on Monday so I will see what he says them.

I am not sure many of us learn caught between drs and ourselves wanting to be off pred and our ability to somehow diminish the pain and write it off to non PMR things. Why be wobbly if 2mg helps?

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HeronNS
HeronNS
in reply to Hidden

My doctor learned her lesson. She is quite kind to me, no problem getting pred renewals now, and I have no issues. I'd like to be monitored a bit more closely (more than annually) but that's all.

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jinasc
jinasc
in reply to HeronNS

'being effective for headaches' before you take the aspirin try this:

Tips and Tricks:

If your scalp hurts, run your fingers upwards through your hair two or three times.

Each individual hair has a muscle attached to it, think how sometimes the hairs on your arm stand up.

As PMR is muscular, the hair muscles can ache. The simple action of running your fingers upwards gently can relieve some scalp pain.

This tip also works for headaches.

Came from my Hairdresser who always offered Shiatsu hairwash it worked for me and still does if I get a headache.

Me: GCA 5 years into 8th in remission.

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HeronNS
HeronNS
in reply to jinasc

Thanks for the tip. Unfortunately I've been a migraineur since adolescence. Fortunately I get far fewer now than I used to, I think mostly as a result of changes to my diet, hence less exposure to triggers.

I did have that painful hair follicles thing before starting pred. At the time blamed my shampoo and around the time of diagnosis changed my brand and it got better. Coincidence? :)

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Hidden
HiddenAmbassador
in reply to HeronNS

You taught me a new word heron. migraineur. I trust it's a word and not autocorrect like it is when I invent words. 😉

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HeronNS
HeronNS
in reply to Hidden

It is a real word. I knew it before, but double checked the spelling when using it just now.

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Lochy

I’ve had exactly the same but thankfully no mention of an arthroscopy. X-rays showed knees normal. Other PMR pains in control and I was reluctant to increase oral pred. That was last summer so since then I’ve had three steroid injections in left knee, one in right knee and fluid drained from both. My rheumatologist felt the knees were unusual for PMR and perhaps I also have an inflammatory arthritis too! Think that’s a very general term to explain everything else. I’m negative for RA factor. I’m now taking hydroxychloroquine and leflunomide to help my swollen knees and so far so good. No one had ever suggested the pseudo gout and the calcium link so I may investigate that.

I found my knees very debilitating and was happy to try something else. Whether I just increased my pred dose and all would have been well I’ll not know. Whether taking two more drugs is better??

It’s so hard to work out what’s best especially when your doctors don’t quite know what’s happening themselves.

I’d recommend steroid injections to start with!

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Dewdrop456
Dewdrop456
in reply to Lochy

Thank you Lochy for your very interesting reply.I am sorry that you have had to suffer with your knees ( both !!)I have heard of the treatments involving drainage and injections and knew they were probably in store for me .They are apparently painful !Glad that your pain is controlled now.Thanks for the information.

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Lochy
Lochy
in reply to Dewdrop456

My injections were not painful, just a little discomfort. We’ve got used to a lot of pain with our PMR so a little discomfort was a fine trade off. The injections gave me virtually instant relief and have lasted a few months. Probably not as long as a ‘normal’ person but worked well for me. I’m hoping the most recent injection which was beginning of February together with the leflunomide will keep me on track. Only time will tell.

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Dewdrop456
Dewdrop456
in reply to Lochy

Thanks.I was beginning to dread them before they have even been ordered.Im glad to hear yours worked and for your kind reassurance.

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PMRpro
PMRproModerator
in reply to Dewdrop456

They are usually not too bad at the time - local anaesthetic sees to that. I found a few hours later I developed a deep-seated ache in my knee which was horrible but responded very quickly to some paracetamol. Just take some painkillers BEFORE the pain starts!

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Dewdrop456
Dewdrop456
in reply to PMRpro

That’s a good tip thanks.

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PMRpro
PMRproModerator

I probably wouldn't increase the dose - but I certainly wouldn't reduce any further for now. Be sure that the thighs aren't going to get worse first.

PMR does affect knees - and hands and feet. Especially if RS3PE syndrome pokes its head up over the parapet. Pred manages it too and usually at lower doses. I had knee pain originally and one rheumy said (without any imaging evidence) that it was OA, she could "feel it". Some 14 years later I had a return of the same sort of pain and went for an x-ray: there is NO sign of OA anywhere, despite having injured that knee 25 years ago in an accident. The pain disappeared a couple of weeks later as suddenly as it had come!

If yours is swollen and just one knee I think you have to think first it is something different. Have you any BACK problems? Especially low back? I assume you have done the rest and ice approach? And I'd also get a tube of Flexisec and try that - even if the x-ray didn't show OA. I found it helped a few strange wrist/knee pains.

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Dewdrop456

Good morning PMRpro,I will stick at 6mgs for a few weeks then .Is the muscle heaviness a problem ?Does it mean there is unchecked inflammation?It is constant .I would be interested to hear your thoughts on this.

I remember you have mentioned your knees before.I’m glad your pain disappeared.Mine came on suddenly too.

I haven’t tried ice but I do put a hot water bottle on it at night. It’s not too bad once I get to work. 12 hour shifts .I have to hobble downstairs,drive and hobble down a very long corridor (Addenbrooke’s Hospital )then after a couple of hours it wears off if I keep moving ,until the evening.

I will certainly try the tape .Thank you.

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PMRpro
PMRproModerator
in reply to Dewdrop456

I always think hospital staff should be issued with mobility scooters... We had a corridor in Ninewells that was said to be a par 4!!

I wondered if you had any piriformis/other back muscle tightness. That can radiate into the back of the thighs.

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Dewdrop456
Dewdrop456
in reply to PMRpro

Well a few years ago I suddenly developed Scatica which was dreadful but eventually resolved itself.Other leg!

I have had mild lower back pain consistently on and off .

The knee pain is on the site of a very old skiing injury which I have learnt to manage over the decades but it’s strange that it’s developed so very quickly.

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Dewdrop456
Dewdrop456
in reply to PMRpro

Any comments on the muscles please?

Thank you for your time.

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PMRpro
PMRproModerator
in reply to Dewdrop456

Have you access to a decent physiotherapist or maybe a Bowen therapist? They may be able to help if there are low back problems due to muscles. Low back pain and muscle problems can make you walk badly, so can PMR if it comes to that, and that can lead to knee and leg pain.

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Dewdrop456

I did track down a Bowen therapist a while ago because I remember you mentioning how they have helped you .I must get round to actually making an appointment.Thanks for reminding me.

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