PMRGCAuk

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Any advice please

Dear fellow inhabitants of planet PMR. There is a wealth of personal experience on this forum and I would appreciate any advice for my current situation.

After 6 + years travelling down the PMR road I, like many others it seems, find themselves on a 6mg dose of Pred and unbeing able to reduce further. Numerous attempts at reducing over the past two years but without success. Now I have muliple pains and stiffness, especially in the mornings, neck, shoulders, finger joints, hips etc, but with CRP / ESR levels about normal, my GP does not recommend increasing the dosage even temporarily. However, Co-codamol / Paracetamol as prescribed are of little or no help in relieving the sumptoms.

Any advice would be appreciated

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57 Replies

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Hello, I don’t know about PMR as I have only had GCA so far. Since about 6mg reducing has been much harder. I reduce by 0.5mg and roughly do DSNS. By the time I get to three days in the week of the new dose I wake in the mornings feeling like I’ve been sat on by an elephant and feel groggy. I have pains all over my body that move about and sometimes the fibromyalgia spots are bad. I now know that I have a month of this and then I pop out the other side like a cloud has lifted. So far I’m down to 4/3.5mg and the pattern is the same, this week I feel like I’m 500 years old. If I could cut my enteric coated tabs I’d do 0.25mg jumps for sure.

So, I don’t know if it is your PMR flaring or just your body adjusting, but it was the all over nature of your pains that made me wonder.

Thanks for your reply, I shall persevere with the 6 mgs for the time being.

I guess you could ask yourself if it feels like you were before diagnosis.

Similar but different, much more intense when it started but didn't feel like joint pain , more muscular

Hi snazzy, sorry to repeat myself, but you can reduce with 0,25 mg. assuming you want to go to 3,75 mg what is needed is 7 and a half pred tablets, 5 mg each. You grind them and fill 10 capsules. One can buy grinder/pill cutter and a little device to put 10 enteric coated capsules in. Bought them at Amazon.com. Something to consider? good luck

Hmm with so little powder to divvy up, I wonder what sort of error one could get and whether it might be up to 0.25mg in either direction?

o I do work with excellent light, and I wonder if it does any harm when one day it is 0,10mg less and the next day the same amount more. If you do the slow method one varies much more. from day to day.

True

You and me both Ventdunord. I was reducing to 5 mgs and got a chest infection which heralded stiffness and pain. I have earache this morning and what feels like my first ever flare symptoms. I think that I would have been alright without the external attacks on my immune system. Really fed up! I found 7 mgs my sticking point, I thought I was on the home stretch. Patience, I suppose.

Thanks Jane, I guess the problem is what pains are attributable to PMR and what comes naturally with age. Perhaps I've been lucky with having had juvenile rheumatoid arthritis at 15 and nothing since then until PMR kicked in.

What medication are you on for JRA?

Sorry I dont know what JRA is unless you refer to Juvenile Rheumatoid Arthritis? This I did have at 15 years old which was treated unsuccessfully with gold injections and analgesics. Thankfully it eventually burnt itself out with a year.

Anyone have any adverse reaction to taking Pregabalin? It was prescribed by my GP for pain relief & peripheral neuropathy in conjunction with Pred. When I look at the possible side effects it covers just about everything except sudden death.

Possible adverse reactions, " Confusion, loss of balance, clumsiness, fatigue, memory loss, numbness, blurred vision, etc. etc. I manage to do all the above quite well without taking anything else that might exacerbate those problems. So I am reluctant to start taking them unless someone else here has had some beneficial effects.

Thanks

Yes - that is what JRA stands for but if it is burnt out it is immaterial. Tocilizumab is approved for JRA and would do a really good job on PMR/GCA too.

I've never taken pregabalin so can't speak to that - you will need to start a new thread really to be sure anyone besides me sees your question about it.

Ok thanks

Are you still taking Pregabalin? I see they are going to make it a class C drug soon, so presumably the druggies are selling it.

Oh so sorry to hear you might be having a flare. I do hope it is just a short blip in your patient ride down the home stretch brought about by the chest infection. What method have you been using to taper? I'm at 4 now, heading to 3 on a 52 day taper. Just started so it means I'm really on 4 for another few weeks with a few 3s thrown in here and there. :). I told my rheumy I'm just scared, not only of a flare, but what I'll find out about my status when I get "home".

A version of dsns but I’ve stopped for the moment. I know what you mean about surveying the damage when this is all over. It will be a long walk to fitness for me.

~Love those last few words Hindags - never a truer word spoken with what will be revealed when or if we get "home".

Wasn't aware of knew arthritic knees (both) could suddenly appear almost overnight since reducing. Ho hum..... wonder what else is lurking, happy days ~

I’m at a similar point except at a bit higher dose 9/8mg but have been down to 5mg

I think sometimes we forget that Pred also masks a lot of our other aches & pains (old war wounds) like you l’ve been on Pred 6years & we may have developed other issues in that time which were masked by the Pred. I have knee issues which have been made worse by Chemotherapy, l am still very stiff & achy in a morning but do improve as the day goes on.

I’m not a 100% of ‘Not That Great’ as my husband describes me!

Have you had any other blood tests checking for Rheumatoid Levels?

I’d be interested to read what others think?

Best Wishes

MrsN 🌺

Thanks MrsN, very true about masking other problems and obviously some people would have had hard physical jobs during their working life which eventually will take its toll. Also rugby players a case in point !

I've only ever had CRP & ESR tests.

Best regards

Fwiw, have you had your adrenals tested? Just wondering if some of your symptoms might be from your adrenals not quite kicking in.

No I haven't had any adrenal test so I'll talk to my GP about that . Thanks

I love the 100% of Not That Great. Good way to put it.

My first thought would be RA in your case. How can they be sure that it isn’t? The presenting symptoms are almost identical. PMRPro has written about this a few times.

I have an appointment with a Rheumatologist in December but as the joint pain does not show any swelling I have doubts that it is RA related, but it's possible I suppose

I had my Rheumatoid Factor checked to make sure it wasn’t RA but I’m certainly sure l’ve plenty of Oestoarthritis!......

As long as you get the appropriate treatment. Good luck!

Thanks Jane

I would take your current dose but take your tablets as early as possible, then go back to bed and then give them time to work. Have a warm/hot shower and see if that helps.

If it does not, then I would be inclined to take 10mg for a couple of days and see what happens, in the great scheme of things, it won't hurt.

CSR and ESR are guidelines to say something it going on..........whatever it is might not be PMR. Also there are people with both PMR and'or GCA whose ESR and CRP never move.

Ventunord: I often wake up in the early morning hours. If you can manage a spoon of coconut oil you don't need to brush your teeth afterwards. Place the coconut oil and a spoon and the dose by your bed. The coconut oil will coat your stomach for the Prednisone. You don't have to fully wake up, take food, the dose, brush teeth etc. I then can often proceed as suggested by Jinasc.

ok thanks for the tip

Brilliant!!!! Xxx

Yes thanks jinasc, good advice.

I too have ongoing worsening pain in shoulders and knees after each drop in dose, including increased pain in right knee as my injection wears off (I have OA in both). I try and stick it out for 5 days and eventually the PMR symptoms lessen. Those first 5 days I try to get plenty of rest, don't overdo it activity wise, and go in our hot tub (or hot shower) daily, sometimes twice. I find the heat really helps. This way I avoid upping my pred. Lots of patience is required, and by the end of it all for us, we will be experts in knowing our own bodies and reading the symptoms.

Somewhere on this forum I once read that if you have symptoms directly after lowering dose (with the first 48 hours), that is more likely due to pred withdrawal. If symptoms emerge days later, it is more likely PMR as the inflammation is building up as the dose is not high enough to manage the inflammation - hence why the symptoms emerge days later.

Good luck with your continued taper, must be very frustrating with each attempt to lower. Sometimes outside factors such as stress/life events, additional illnesses, etc also impact our tapering efforts. Hoping you get some relief soon, even if it does mean upping the pred for a few days. Sometimes this is the only way to clear out the inflammation so you can move forward.

ok thanks for the advice. Definitely long term use of Pred has some depressing side effects e.g. thinning of the skin, easy to tear or cut, and bruising. However, it seems there is no effective alternative treatment for now. My GP is set against increasing the dosage, but then it's not her who has the aches & pains. Thanks again

On a positive note, I had all those skin issues as well as losing most of my hair. By 7mgs the hair started growing back, and by 5 my skin was mostly back to normal.

And yesterday I walked with my husband for the first time in a long long time and actually felt almost able to walk with a normal gate and without pain. We stopped to talk to a neighbor for about ten min but other than that I was able to power through for the first time at a reasonable pace. I got home feeling spent and my legs a bit rubbery, but as of this morning no unusual aches and pains to remind me that I had done.

We'll see what tomorrow brings.

I didn't realize my skin would get thicker again. That's encouraging to know. Thanks!

Thin skin - pred = your GP can describe Double Base Gel. If s/he won't it is worth buying OTC.

Also if your hair is really getting thin, consider using Folic Acid, but check with GP and then Pharmacist for compatibility.

Thanks I'll try the Double Base Gel, fortunately no hair problems , as good as ever.

Hi jinasc , I’d like to buy Double Base gel, is there a trade name please x

That is the Trade name in the UK. I buy it from Boots, the last lot was about £11 for the biggest sized bottle.

Ok thank you so much x

That's good to hear, hope you will eventually reach the magic Zero .

I think your husband was so right when he used the phrase ‘not that great’ Mrs Nails.That phrase really describes PMR /GCA,l often think of how l used to be,certainly not the same now.l cut a tiny piece off of a 5 mg,Pred . tablet for the last two days,hoping to start getting back to the 3 mg., dose l was on previously.Today l am feeling NTG,plus a headache and much louder tinnitus pulsing in my head.l am also feeling exhausted .l do not like being on 5 mg.,and now am not sure how long to carry on with it before l try reducing again.l have been asked to go out with friends to various groups and outings,they are so enthusiastic about getting out each day,l can only manage perhaps a couple of outings during the week,having to spend the following day taking things easy,it is so hard to explain to them how l feel .l understand howVentdunord is feeling ,and l think that pain killers can ease the pain but can have unpleasant side effects. I hope that everyone will eventually feel,a lot better,and that you will soon recover from your chest infection Jane.

You need this: Synacthen Test.

This is rarely offered to you, as I have found out over the years. I was referred without asking. It should be done when you get to 7.5mg or below, mostly done when down to 5mg.

You have probably been on pred for at least three years and are also 3 years older.

You are told to carry your Blue Steroid Warning Card for at least 1 year from ceasing to take pred. This is to alert medics if soemthing goes awry.

I could not count how many times I have posted this:

Your adrenal glands have to wake up and start working again and it can take up to a year for them to become fully functional. In some cases they never wake up , I have been told that the incidence in low.

But you need to know they have started to wake up. An adrenal crisis is not to be sneezed at...................so insist.

Put Synacthen Test in your search engine.

Thanks for the advice. I did ask my GP yesterday and he didn't think it would be relevant as the Pred suppresses the body's ability to produce adrenaline.

Perhaps I should get a second opinion. Never been issued with a blue steroid card either?

I got my blue steroid from pharmacy, but I had to ask for it x

Ok thanks

Just got one , thanks

👍

Of course it does, that is why pred is normally given in small doses and for no more than 10 days.

You are on long term and it not only suppresses, it stops production altogether.

That is why the test is there so they can tell if your glands have woken up and started working and how far along they are.

Are you sure you saw a GP?? I tried to put a puzzled face in, it did not work.

My GP said the same Ventdunord, adding as I've been on pred long term my adrenals won't be working anyway yet! plus they don't do the tests they would have to refer you but I'm asking my Rheumie instead. Think you've got the blue steroid card now, pharmacy provide those, you have to ask.

Yes thanks I got one yesterday from the pharmacy. Strange that although I have used the same branch since I started taking Pred. they never offered me a card or asked if I already had one?

Perhaps ask them next time you're in - I got my first one from Rheumie when diagnosed! or I wouldn't have known about them. Then same day, Pharmacy at the hospital offered me another! Local pharmacy never ask!

Where in heaven's name do these doctors get their ideas!!!! Once you get to about 5mg it is a very good idea to find out if your adrenal glands are still capable to waking up and producing cortisol. Otherwise you may continue reducing your pred dose - which is substituting for your lack of cortisol - and the adrenals are running on empty. The synacthn test doesn't tell you they ARE producing cortisol. just whether they could if required. Which is a very good start...

Ask your Pharmacy for a blue steroid card. I was sent one by the charity PMRGCAuk when I joined and another at renewal. Alternatively, search online and print your own.

Ok thanks

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