PMRGCAuk
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PMR and difficulty tapering prednisone.

Sorry, I haven't been on in a while. I was diagnosed dec 2017 PMR . Put on 15 mg prednisone. Now, 8 months later I'm still struggling to taper. I've been tapering at 0.5 for 8 weeks.....from 13.5 to 13mg. Here I'm stuck. I can't do any more than half mg. I've really tried. Even now, I'm still having pain and sweats. Nights are horrible. Im sure 8 weeks is too long for a 0.5 taper. I thought of the dead slow method but don't quite understand it. I'm also type one diabetic. I don't have a rheumy and gp doesn't seem to have answers. Seems I'm on my own and I'm 70. I think the pain etc is probably steroid withdrawal but I don't know. This is my first experience with them. I'm almost sure I should be on less than 13mg by now so I thought I'd try the method of going up and down, sounds confusing but I believe it's called the dead slow method. I'm just not sure I understand how? Brain fog!!!! Thank you, Maggie x

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Hi Maggie,

If you were only diagnosed in Dec last then your PMR is probably still very active, and it’s not unreasonable for you to still be needing 13mg. Some people start higher than 15mg although it is a recognised starting dose.

Are you trying to live life as normal? You can’t really because although the steroids are helping your pain by keeping the inflammation under control they are doing nothing for the underlying illness which is still causing problems - including the sweating, and fatigue. If you are still in pain then I would suggest you are either not on enough Pred or are trying to do too much.

If you can’t follow the DSNS taper you might find this a little easier -

healthunlocked.com/pmrgcauk...’s-simple-taper

This should stop the steroid withdrawal symptoms.

Also if you haven’t already it might be worth having a look at this, it might help you understand your illness a little better -

healthunlocked.com/pmrgcauk...

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Thank you for replying. Dr keeps telling me I'm in remission due to bloodwork but I know that isn't always the case. He wants me off the steroids only because of my age and having osteoporosis. Yes, I'm trying to live normally but not doing much physically. I made cauliflower soup today and now my elbow of all things is swollen. ??? I keep going to try and drop anther .5 but afraid to. I saw dr last week and he says I'm in remission as I could lift my arms etc. plus bloodwork is fine. I'm losing muscle and weight now quite quickly. I just thought 8 weeks is a long time to be tapering such a small amt. and still symptomatic of something. Hips are bothering me, sore throat and my backside again. I'll need to do some more reading and experimenting although a bit nervous with something this potent. Thank you again,

Hugs from Canada 🇨🇦 x

Maggie

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Does you doctor know anything about PMR? Why does he think he is giving you steroids, to do what? Words fail me. Doesn't he realise if you take steroids they should reduce your inflammation markers and it shows they are working, it does not mean everything is now in remission. What has your age got to do with whether you are on steroids or not?

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His opinion is....inflammation markers are normal, therefore I'm in remission and it's all in my head. NO, he's my gp and not knowledgable re PMR. He is a new dr also mine retired😒 Oh, I just threw my age in for information. I just don't know my next move.....try another .5 taper, that would be 10 weeks tapering at 13 mg....or try the real slow method. I can't believe the trouble I'm having tapering down.i mean seriously by 0.05mg for 8 weeks as of now. I know we're all different but this is unreal. Thank you so much for responding piglette Maggie x

P.s. oh, he offers opioids for my pain and discomfort. I really want to get down off preD. Been too long and too high. But I really suffer terribly.

Thanks again x 🇨🇦

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Dear Maggie, it is so difficult when you get a doctor who does not understand PMR or steroids. Mine did actually admit to it! Opioids don’t touch PMR, I tried Tramadol before I was diagnosed and it had no effect whatsoever. I am not sure how you get them to learn a bit more as most of the ones like yours are not able to read it seems! I have always had trouble reducing so just take it slowly and do not worry about it. As Dorset Lady says can you see a rheumatologist?

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Totally agree with piglette re your doctors opinion!

Nobody likes or wants to be on Pred, but to be honest you are only 8 months into a much longer journey, and although 15mg may seem a high dose to you, it’s certainly not to those who have GCA - my starting dose was 80mg.

I think you need to try and see a doctor who knows something about PMR - can you ask for a referral to a Rheumatologist?

In the meantime you do need to read up a bit more - this for example

healthunlocked.com/pmrgcauk...

And yes you may be correct in thinking you have more going on, but you must remember the Pred only works on the inflammation side of PMR, it does nothing for the underlying illness itself.

This illness is manageable, but you need to understand it, and also a doctor who does as well!

Take care.

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I have every sympathy with you. I too was diagnosed with PMR in December 2017. Began on 20mgs of Pred, and now only down to 15mgs. I have tried to speak to my GP about the exhaustion, and how my legs go to jelly walking up the many hills in my town and her reply was " Why do you think that is?"....against her judgement she has now referred me to a Rheumy.....but the nearest appointment is not till Dec...she doesn't seem to know anything about PMR. I have also been having headaches, and have a very sore scalp. I have been to the optician but he says all is alright, and the GP says that there is nothing to worry about, but I am terrified of developing GCA....I am 74, live on my own, and find it all quite scary.

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I think your GP is right to some extent - why DO you think it is?

You are doing too much - I struggle walking up hills - the odd one and slowly is OK, too many or fast is definitely not. Though the sore scalp and headache DOES bother me a bit.

However, if you have any visual symptoms or the headache gets unbearable dial 999 - they are also signs of stroke so would be taken seriously. Unless you are in Whitby - they had no ambulance last night as their ambo took someone to Scarborough and then sent to a case in Bridlington, stood down and then sent to Hornsea so ended up in HULL. You couldn't make it up!

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Thank you Amber, wow, I truly understand. I too live alone and I'm scared and lonely. I was started on 15mg and now been on 13 for 8 weeks and stuck there. It seems we have the same or similar symptoms......and perhaps same dr. I've been asking for a rheumatologist since the beginning. He has just ignored my requests. Oh, I'm also type 1 diabetic on insulin and had my 70th birthday in Dec 2017.

My appointments with dr never get anywhere. I'm suffering terribly but I've said all that. He basically tells me to do what I think will work.Today, I'm trying the ......new dose then old dose taper. If it works it does then if not, I don't know. Now my elbows hurt, I was leaning on them on my bed but they're really painful. Nights are the worst and needing sleep and no more sweats. I'm in a small tourist town but I'd go the many miles to get some medical help from a dr who is knowledgable in this. Thank you again and good luck on this strange journey. I wish you all the best.

Slowly but surely my kind regards,

Maggie x

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I have always had trouble on hills since getting PMR, my house is actually on a hill which is a bit of a nightmare and rather limiting. I think a lot of people with PMR have trouble with hills.

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Would your simpler plan work for higher dosages?

I thought I was doing well at 45mg but when I dropped to 42.5 on day 10 following rheumy's instructions everything started falling apart.... again. More headache/temple aches, and sensitive scalp back up to 50 mg again. I'm even considering going back on the dreaded MTX 'though it did'nt to be helping and only had more side effects..... Discouragement is the word of the day. Feels like I'm on my own to figure it out. Diagnosed Feb with PMR and in March 2018 with GCA.

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Hi,

The slower tapers work at any level. The main aim of them is to stop the steroid withdrawal effect, but of course they also make it easier on the body to get from current dose to lower one.

I found at higher doses I was okay reducing, but not everybody does, some are much more sensitive to the slightest change in medication.

If you are having difficulties in reducing at any level, then a slower taper is worth a try.

However as you were only diagnosed with GCA in March it’s still early days, and relapses are much more common in the first year, so don’t be too hard on yourself. 🌷

Take care.

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Hi DL,

I am using your simple taper but would you please remind me what the DSNS one is? I find your new dose/old dose simple one has been effective. Thanks. Sue.

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Hi,

This is a post from PMRpro explains it

healthunlocked.com/lupusuk/...

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Thanks. S.

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healthunlocked.com/pmrgcauk...

The underlying idea is to challenge the body with the new dose just one day at a time - and reduce the time between each try at the new dose each time: 1 day of new dose then 5 days old, 1 day new, 4 days old and so on. It is easy to see if you start on the 1st of the month using a calendar and mark which days for each dose for the next couple of weeks.

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Thanks. S.

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I was diagnosed with GCA/PMR Nov 2016 and started on 40mg. Spent 5 months of 2017 on 30mg. I can only reduce by 0.5mg at a time. I am finally nearly down to 21.5mg. I have worked out my own tapering plan by using the ideas on the forum. Without the forum I would never have survived all this.

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Hi rlake

I was diagnosed around the same time as you first with PMR then GCA. I spent a long time at one point on 15mg then after a flare had to increase my dose - and so I am now also still on 21mg. I am trying to taper intelligently to minimise some current side effects - but also realise our bodies 'tell' us what we need despite any external or over optimistic plans we have. I am reckoning after the time since our diagnoses with GCA that we are fairly typical - after all this disease takes much longer to go into 'remission' than we would all like and so YES thank heavens for this forum !

Good luck with your tapering

Rimmy

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Thank you Rimmy. It's good to know I am not the only one on higher doses having problems with tapering.

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Inflammation markers will be normal because you are on prednisolone. BUT the disease is still there. Average length of disease is I believe 5\6 years. So...early days for you. If you are in pain, still have sweats, the likelihood is you need a higher dose. Could you see a different GP?

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If you are diabetic you need to be referred for expert care. Not least because your doctor obviously doesn't understand how pred works in PMR or really, anything about PMR: you are not "in remission", except possibly drug-induced, the actual disease process is still going on in the background, but if you have pain and sweats - you are NOT in any sort of remission. The blood markers are in normal range BECAUSE you on pred - the pred combats the inflammation, or a lot of it, and so there isn't the trigger for the liver to produce the proteins that cause ESR and CRP to rise.

This shouldn't be steroid withdrawal - you are dropping tiny amounts so if there is a problem it shoud be gone long before the 8 weeks is up as your body gets used to it. You have symptoms of something so the pred is obvious either not working or you simply are not on enough to get the inflammation fully under control at the start.

PMR lasts about 2 years at the very least (the average need for pred is 5.9 years) - so if he now wants you off pred asap why did he bother putting you on it in the first place? Once you stop taking pred the symptoms will come back if it is still active. The sore throat, weight loss and sweats do concern me - it is possible you have more than PMR. There are 3 different expressions of this, PMR and GCA and then something inbetween, large vessel vasculitis, that affects the arteries in the trunk and sometimes overlaps with PMR and GCA. They can all cause similar symptoms. A GP is not usually competent to distinguish between them.

You mention a swollen elbow - do you have/have you had other joint problems?

As for "all in your head" - he'd get a piece of my mind. I had that suggested by my GP but that was at least before I was put on pred! Canada is a problem I know - where are you? Is there another GP you can see or are you able to insist on seeing a specialist?

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Thanks .....oh yes, unfortunately I'm in Canada. I was born in England but shipped over here at age 10. I'm sure you've heard about our health care system....brutal. Shortage of everything and everybody. I don't know my next move. No other doctors available and mine won't refer me yo a rheumatologist. It's just horrid!!! He'll give me opioids which I refused. He's also a new young doctor lacking experience. Thank you for your responses.

Take care x

Maggie 🌹

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The UK NHS isn't significantly different these days :-(

However - this bunny needs to learn that opiods DO NOT HELP in PMR. I meant where are you in Canada? Maybe there is someone locally who can advise on negotiating a poor system. I know private isn't an option in Canada.

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I understand under federal law, private clinics are not legally allowed to provide services covered by the Canada Health Act. Regardless of this I also understand that many do offer such services. I can understand why the health care system sounds so bad.

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Oh - and I forgot to say and was reminded by DL's post - opiods don't do ANYTHING for PMR pain according to most of the people who have been on them for something else. Only pred deals with PMR - and it isn't addictive in the same way.

I boggle at these doctors who are so terrified of pred but will hand out opiod drugs like sweeties.

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Sorry to hear your difficulties Sunshinemaggie. I'm no expert, but as I understand it, blood markers can be normal with PMR, before any treatment. Mine were but the symptoms were relieved almost immediately with 15mg steroid. Pain killers and anti inflammatorys gave no relief at all. I don't believe you're in remission, just the symptoms have subsided with the steroid. Your Drs comments are disgraceful. I hope you can get some better support and help.

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This is PMRpro's reduction method. Could you print it off and just tick off the days rather than trying to understand it?!!!!

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose"

Good luck

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Hi Maggie. Your difficulties tapering sound very familiar since I struggle with 0.5mgs taper. It takes me about eight weeks, sometimes more and I too was months on initial starting dose of 15mgs. Your taper equates to 0.5mgs over two months. So does mine - 14 months to taper from 15mgs to 8 mgs. So you are not alone. I don't worry about it now, despite Rheumy wanting me to go faster since my bloods are fine. (I haven't bothered to chase another appointment with him since I think he will want to put me on steroid sparers). I prefer to go with what my body tells me and what diary commitments I have, since I want to function adequately and still live a little - even if it is in a slower lane!

I am 59 years old, taking no other medication other than pred and Adcal. Despite this I still struggle with tapering, but I no longer let it worry me and just go with the flow. So far, so good without a flare!

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Wow Marilyn,

Thank you so much for replying. I'm not a freak after all!!!! I've yet to hear of anyone taking 8 weeks to taper at 0.5mg until now. I don't know if these symptoms are steroid withdrawal or PMR. They're still nightly....sweats, hair loss, purpura on my skin, I can't so much as get a spooon from the drawer, skin tears and now what some one referred to as the niggles. Just strange aches and pains popping up. The night sweats and lack of sleep are the worst. I've always been sensitive to meds but this???? Well, you've given me a whole new outlook in that I'm not the only one having to go so slow but still not getting there. Today, I started doing the up and down taper...new dose 1 day then old dose. Going to see if it works. I'd decided this morning before I read your post. Of course I'm feeling it already. You're wise I think to continue in the slow lane as I will be. Unfortunately I don't have a rheumy to guide me. It seems with or without one we have to do what we know works for us. My gp refuses to increase preds and I'd prefer not either although I think it would be warranted. He prescribes pain meds. I'll just keep plodding on. Thank you so much again for taking the time to reply. I worry as I'm on insulin for type 1D plus have many other conditions. Now I feel much "safer."

All the best in the slow lane x

Maggie 😇

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"Unfortunately I don't have a rheumy to guide me."

Well it is time you did. What you are describing is NOT what you should be experiencing if what you have is PMR and you are on the correct dose of pred. Your GP should know that pain meds don't work for PMR for the vast majority of patients.

Your GP is out of their depth - you need expert input.

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Hi Maggie. I deliberately stated I am on no other meds, so your situation is far more complex than mine. We, and our response to meds, are all so different. I agree with the advice of others that you need Rheumy input rather than 'plodding on' solo.

Since my GP was reluctant for me to start steroids before diagnosis was confirmed by Rheumy, in order to fast track I reluctantly (NHS suppoter) paid for a private consultation at neighbouring private hospital to my NHS hospital. I told him I couldn't pay for ongoing treatment but only for the initial consultation. He confirmed diagnosis, fast tracked blood tests etc and further appointments with him were / are on the NHS. Might be worth thinking about a private consuktation if NHS waiting lists are long.

However would definitely ask for referral from GP in any case, especially since you (and I) are having difficulties and GP is obviously struggling to get it right for you.

Incidentally, in my case, the sweats eased off considerably when the pred dose lowered to 10mgs. Also the weight gain is easing at 8 mgs (upside: chipmunk face reducing, downside - map of England lines on face returning!) So there is light at the end of the tunnel. X

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Yes Marilyn,

I understand the differences. I am quite complex and why I need professional help. I was able to relate to a lot of your post though. If I were to list all my meds and illnesses it would shock you. Well, I've suffered most of this day more than ever (except before diagnosis.) I did drop to 12.5 this a.m with good intentions but I was scolded with worse pain and symptoms. In the past I didn't feel the symptoms of a taper till a few days in. This started sooner. Tomorrow is unknown. According to the plan I'm to go back up to old dose of 13 and I think I would have anyway after today.

I am in Canada which is known for shortage of doctors and specialists. I would definitely have a private rheumy/dr if I had that option. I was born in England but shipped here at age 10 for a visit......still here.

Map of England......funny, I refer to mine as cold pizza. 😁...so no NHS 😒 Yes, free but almost non existent here. We die waiting.

Thank you again Marilyn,

All the best on our journey x

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The dead slow method is easier to work with if you have a transparent straight weekly pill container and put in your pills for the week ahead. Then you can see at a glance what you have to take and how far you are on the reduction. Even my aged brain (78) can manage it. I got muddled at first because I was using a heptagonal pill container (easily portable) but not transparent and I did lose count. It seems to work well -fingers crossed - and I'm about to start reducing from 9 to 8.5 which is lower than I've been for a long time. Good luck.

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Does an heptagonal pill cutter mean you can cut a pill into seven pieces?

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Container...

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Ah, obviously a bear with very little brain! Not reading things properly any more.

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Get that marmalade sarnie out - your blood sugar is too low!

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