Steroid advice please.

[gannie]

Since my diagnosis in July of Polymyalgia and subsequent prescribing of Prednisolone, I have done pretty well with reductions until now. I reached 7 mgs per day 2 weeks ago but am now feeling a little discomfort (not actual pain) which my GP said might happen at some point. My question is, do I hit it with a boost of steroids now (before it becomes actual pain) or do I wait to see if things settle down. Your opinions, folks, would be welcome.

[HeronNS]

Hi Gannie, sorry you haven't been feeling your best the past few days. Did that pain start right away after reaching the 7 mg point? If so it's probably steroid withdrawal. If it seems to have been getting worse over the past two or three days I'd say it's more likely your dose is now too low and it would be wise to return to the last dose where you felt really well and stay there for a few weeks before trying to taper again. At what rate have you been reducing your dose? Do you go down by 1 mg overnight or are you using a slower reduction schedule?

[gannie in reply to HeronNS]

Hello, HeronNS and thanks for your prompt reply. The discomfort has got more so over the past couple of days so you might be right in that my dose is now too low. Since the 10 mgs point, I have reduced 1 mg every four weeks but the doc did say that the 7 mg point can become tricky. He advised that if I needed to 'boost' my intake I should do so by 5 mgs and then reduce again.

[HeronNS in reply to gannie]

Actually that's good advice. You may not need the full 5 mg, but you'll know pretty quickly how well you feel, and should be able to reduce quite quickly back to, say, 8 if that was where you were well before. I think from this point, once you've got things under control again, if you're able to split your tablets a .5 reduction would be helpful. Regular pred can be cut, not coated tablets. And have you seen this:

healthunlocked.com/pmrgcauk...

There's another plan called Tortoise not Hare, I don't know where to find it, which has also proven helpful to people.

[gannie in reply to HeronNS]

Yes, I was perfectly OK on 8 mgs, HeronNS, and I like what you say about cutting pills. I don't think mine are coated as it doesn't say that on the box. I shall now read the link that you've sent to me. Thank you very much.

[gannie in reply to gannie]

The article looks really interesting and makes perfect sense. I have copied/pasted it into a document for future reference. Thank you, again, HeronNS.

[SheffieldJane]

Hi gannie, I am on 7 mgs and feel pretty awful but it isn’t pain exactly. This is the stage when our Adrenal Glands are supposed to wake up. I have been sleeping so much but I seem to be coming through it now. I have not increased my dose but I have stopped tapering and will resume in February when I get back from Australia. I know that I would feel great on 10 mgs but then I would have to face this at some point. I think the cheeks are going down and the hair is thickening and I am not Satan with my moods - this keeps me going. 6 mgs and I’d flare, I just swerved back in time. Good luck and Happy Christmas and a happy healthy new year.

[gannie in reply to SheffieldJane]

Thank you for your reply, SheffieldJane, which is interesting because I didn't know about the Adrenal Gland 'waking up'. This must be what my GP meant when he said it gets 'tricky' at 7 mgs and he said that once down to 7 mgs I should stay on that dose for at least 3 to 4 months. I will be seeing him again in February unless I have a huge problem.

It is also interesting what you say about cheeks and hair because my hair has definitely thinned more since taking steroids and I do have the 'chubby cheeks' which all my kind family and friends say suits me!! I don't think so! Ha!

In view of what you have said, it won't hurt for me to hang on in there for a little while to see what happens. I shall play it by ear. Christmas Wishes to you too and a Happy Healthy New Year, SheffieldJane

[Soraya_PMR in reply to gannie]

You’re GP sounds very sensible. Hang on to him!

[gannie in reply to Soraya_PMR]

Thank you, Soraya_PMR. The GP I am seeing now was new to me as my old one had retired. I liked the new one so much that I asked that he see me through this 'illness' (but I prefer to call it a 'condition') and he was more than happy to do so. He's absolutely super, approachable and with a sense of humour. I have to admit that I've reached my 72 years virtually unscathed and this is the first chronic condition I have faced. I consider myself to be very fortunate....

[RheaV in reply to gannie]

I like that you call this a "condition". I do as well--I don't consider myself sick. Like you, I was diagnosed in July and am currently down to 7 mg. I did find that that first 3 weeks of being on 7 mg, I was extremely tired. If I worked one day, the next day I wouldn't be able to get off the couch! That is getting better now, thankfully. Merry Christmas to all!

[gannie in reply to RheaV]

Yes, RheaV, I don't consider myself as being sick either. Fortunately, I've not experienced extreme tiredness with this condition unlike a lot of others here. I'm glad your tiredness is less now, RheaV, and a Merry Christmas to you too Is there any point in saying 'take it easy'?

[PMRpro Ambassador in reply to gannie]

What a VERY sensible GP - he could give some rheumies lessons! Hang on to him!!!!

[gannie in reply to PMRpro]

Yes, I do intend to hang onto the GP, PMRpro. He does look like he may be approaching retirement age though. Let's hope I'm wrong, ha!

[Jamie345 in reply to gannie]

That's what has happened to me my hair has gone incredible thin and hay wire my cheeks are full and yes my family say I look good with chubby cheeks as its smoothed the creases out that was my granddaughters opinion although she did say she hoped I did not mind! Actually it does look better I'm still weaning down from 40 to 20mg so not feeling side effects yet! All very new to me! I'm on the morphine patches, and after the first 3 at 72hours each has finally kicked in time for our holiday at the coast for 4 days Christmas, not completely mobile or pain free but feel a lot better. Merry Christmas to us all 😃

[gannie in reply to Jamie345]

'Smoothing out the creases' has made me smile, Jamie345. God bless our grandchildren.... I can see that you started on a very high dose of steroids whereas I started at 20 mgs and I didn't need additional pain relief as the Prednisolone kicked my pain into touch virtually overnight. It also created an incredible 'high' in the beginning like amphetamine might do. I felt euphoric but it had it's down side because I spent £1,000 in a month on my credit card (and I'm normally quite prudent and sensible). For example, I spent £110 on a bottle of the new Chanel Gabrielle because I loved it on the day of purchase but now I don't like it at all! When I've found a new home for it I will give it away and put the whole thing down to experience. Sorry folks - I'm waffling! Hey ho.....

[newgirl73 in reply to gannie]

Hello gannie

I really identify with what you say about the high you experienced. I have had some quite extraordinary outbursts, including road rage because nobody would filter at a bottleneck and I sat there fuming, swearing, gesticulating, banging on my window until someone got out and said they were concerned I would have a heart attack! My credit card also soared like yours, and I asked a complete stranger in Waitrose who was rude to me if he did anything other than grumpy!!! I started on 15mg Pred in October and am on 13mg. now expecting another reduction next week. I have felt very happy though keep walking into that brick wall of dreadful fatigue that makes me trembly and feel unsteady and sleepy. The lovely thing about this forum is the wonderful mix of real knowledge from the experts, the shared stories and trials, and the humour of silly discussions on the merits or not of all sorts.

Wishing you well and a Happy Christmas to all.

[gannie in reply to newgirl73]

Thank you for your story, newgirl73, and I'm so glad it isn't just me who suffered temporary insanity (where are the emoticons when you need them - 'smily face')

I agree that it is really good to share experiences and to be given really helpful tips along the way.

Happy Christmas and here's to 'upwards and onwards'.....

[PMRpro Ambassador in reply to gannie]

Smiley face is colon minus close bracket with no spaces between

[gannie in reply to PMRpro]

Oh brilliant! Thank you PMRpro. I know the symbols to use but didn't realise it would create an actual 'smiley' on here.

[donnafish in reply to SheffieldJane]

I have been on prednisone since June 2017. I am curious about the hair, mine has become very thin, I didn't know if the PMR or prednisone was the culprit. I cut down to 7mg prednisone about 10 days ago, I thought that I was doing well and this morning when I awakened, I could barely move, my body aches so badly I can barely move. I don't want to increase the dosage--feel like I am yo-yoing. Not sure what I should do , my doctor is no help and the nearest rheumatologist is about 200 miles from here. I am an 84 year old woman and do not feel like traveling that far from home.

[gannie in reply to donnafish]

Hello, donnafish I was in the same position as yourself and had reduced to 7 mgs Prednisolone. My GP had warned me that this might be the tricky stage and to increase by 5 mgs to give a good 'boost' if the symptoms returned. The symptoms did return within a couple of weeks so I did as I was told and went back to 12 mgs which quickly resolved the problem. I am now down to 11 mgs again and will reduce 1 mg per week to see where that takes me and if I can get to 8 mgs without a problem I will reduce even more slowly. I know it's a nuisance yo-yoing with steroids but I would rather have that than the disablement I suffered before diagnosis. My hair has also thinned but it was beginning to thin anyway before the steroids so I'm not sure if it's steroids or age?

You may find this useful, donnafish

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to donnafish]

Go back to the last dose and see if that still is enough to manage the pain and stiffness.

You aren't heading for zero pred, you are looking for the lowest dose that manages the symptoms. And obviously 7mg is very slightly too low.

[PMRpro Ambassador]

If you have got to 7mg since July I would suggest going back to 8mg immediately, waiting a month and then trying again. If you need to, have a few days of a higher dose. But don't "wait and see". It isn't a race - and since tortoise and hare has been mentioned, remember who won!!!

PS - if it is discomfort you are feeling after the best part of 2 weeks I'd suspect you are just at slightly too low a dose rather than your adrenal glands being lazy. Either way - stay at 8mg for a bit.

[gannie in reply to PMRpro]

Oh good - I was hoping you'd be around, PMRpro, to add to the discussion. I shall do as you say and go back to 8 mgs for a few weeks. Thank you....

[SheffieldJane]

Maybe I should too. I really don’t feel the ticket, but it is not familiar PMR pain, more a sort of viral feeling. Maybe it is a virus, we are not immune to other nasties.

[gannie in reply to SheffieldJane]

A good point, SheffieldJane - In fact, my GP said that I would be more prone to pick up infections and he wants me to have a pneumonia jab and also a shingles jab. Unfortunately, I can't have a flu jab as I had an allergic reaction years ago.... I suppose the only way to tell if your PMR is the culprit is to up your steroid dose and see?

[PMRpro Ambassador in reply to gannie]

DON'T have the shingles jab. Please follow this link and follow the links there for the details.

healthunlocked.com/pmrgcauk...

[gannie in reply to PMRpro]

Decision made, PMRpro. I definitely will not be having the shingles jab! It was actually the nurse practitioner who suggested it when I went for a routine ECG.

[gannie in reply to gannie]

PS, yes, she did know I was taking steroids....

[PMRpro Ambassador in reply to gannie]

It makes me wonder just how much of the medication we are told is essential is actually US drug companies making money...

[gannie in reply to PMRpro]

I was thinking the very same thing when I read the articles, PMRpro. I have to be honest here and say that I've stopped taking Alendronic Acid because of the damning reports I have read and also the fact that, to my mind, a drug with such exacting instructions for staying upright etc must be potentially damaging. I suffer badly enough as it is with indigestion (even though I'm taking Ranitidine). I did take the Alendronic Acid for quite a few weeks but got to the point where I dreaded Saturdays (the day I took it) and it was beginning to impact on me psychologically. I am taking extra Vitamin D and, although I drink 12 pints of milk a week, I am considering taking extra calcium. I shall look into having a bone density scan too after Christmas.

[PMRpro Ambassador in reply to gannie]

The strict instructions about remaining upright are because most of the adverse effects reported were digestive tract in nature and they decided it was because people weren't taking it "properly". If you do get reflux after taking it it can do damage to the gullet.

[gannie in reply to PMRpro]

Thank you PMRpro. That is what I concluded and that is why I'm not going to take it anymore.

[piglette in reply to gannie]

Dear gannie, I am amazed that your GP suggested a shingles vaccine, I assume that they know you are taking steroids?? On the flu vaccine is your allergic reaction to the fact that it is grown in eggs? If so I am told there is an alternative that is now available.

[gannie in reply to piglette]

See above, piglette, re the suggestion of a shingles jab. I'm not allergic to eggs so I'm not sure whey I reacted to the flu jab and my GP said it would be unwise to have it.

[piglette in reply to gannie]

I am sorry I was maligning your GP re the shingles jab!

[gannie in reply to piglette]

No, it is I who should apologise because I did say it was my GP who suggested it until I remembered it was actually the nurse. However, it was the GP who said I would be more prone to infection at the moment. So far, I have avoided colds and take my hand gel everywhere. Am I paranoid? You can bet your life I am, hahaaaaa......

[RheaV in reply to piglette]

The shingles shot here in Canada is a live virus--so I can't take it while on steroids.

[PMRpro Ambassador in reply to RheaV]

It is live everywhere - but the guidelines claim it is safe for people on pred under 20mg. Given the rest of the "stuff" - I;m really not convinced!!!!!

[RheaV in reply to PMRpro]

I'm not convinced either. I've been told not to take it now, and I won't! Before I was diagnosed I was considering the shot, but I understand it is not all that effective, and the older one gets, the less effective it is.

[gannie in reply to RheaV]

Thanks for your input, RheaV

[PMRpro Ambassador in reply to RheaV]

Quite - in the UK they started the catch-up with the over 80s, for whom it makes barely any difference. And when you are on immune suppressant medication it is even less likley to do anything. Except, I suspect, make you more likely to develop shingles!!!!

[SheffieldJane]

Thanks gannie. I’ve got a long haul flight on the 28/12 that I am rather dreading. My PMR acute onset was on a flight to Australia and was a bit of a nightmare.

[gannie in reply to SheffieldJane]

Oh bless you! Perhaps that is another good reason to 'up' your dose thus ensuring you are comfortable for your flight?

[donnafish]

We sound like we have a similar diagnosis. I first came down with PMR (polymyalgia rheumatica )in June. I have been cutting down on the prednisone since Oct. 2017. I was at 10mg of prednisone in Sept. cut down to 5mg and within 3 days I was back to square 1. Went back to 12.5 mg and have been slowly decreasing only 1 mg at a time. I am on 7 mg now but this morning I woke up with a lot of pain. I'm feeling really discouraged and hurting but I don't want to increase dosage of prednisone. The doctors here in my area aren't really that familiar with PMR and we don't have any rheumatologists in this area.

[gannie in reply to donnafish]

You may well have to increase your steroids, donnafish, and please don't feel a failure for having to do so. It's all about quality of life, after all. 7 mgs was a step too far for me and I have increased (see my other reply).

Luckily, my GP is utterly brilliant and really supportive so I don't feel the need to see a rhermatologist

[gannie in reply to gannie]

And I do know how to spell 'rheumatologist' in case anyone is wondering

[PMRpro Ambassador in reply to donnafish]

Why don't you want to increase the dose of pred? You are not reducing to get off, you are reducing to find the lowest dose that manages your symptoms as well as the starting dose did and you have been reducing far too fast, that 10 to 5mg drop was never going to work and often once a flare of that sort happens it is harder to get things under control again.

Try reading this paper and, above all, look at the reduction scheme they suggest - and show it your GPs. It was written and presented at an Edinburgh meeting aimed at GPs:

rcpe.ac.uk/sites/default/fi...

They would have you at 10mg now - which would well cover your problems I think. Once you get to 8mg and less you are taking the same amount of corticosteroid your body makes in the form of cortisol so the problems are minimal. But there is no virtue at all in taking too low a dose - it leaves you in the same state as if you weren't taking any at all but with no benefits.

Where are you?

[gannie in reply to PMRpro]

Good advice for donnafish, PMRpro, and I like the link you have given her. I've not seen that before. Thank you

[PMRpro Ambassador in reply to gannie]

Have you not? I have quoted it several times but maybe not so much recently. The reduction scheme is still a bit fast I think but it is better than most!