Will I ever get below 5mg?: I've been on 5mg since... - PMRGCAuk


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Will I ever get below 5mg?


I've been on 5mg since February. As I've mentioned before I've been sensible, not reducing when my body faced new challenges - standing for election to the Council in a very hilly area (unsuccessful), then just before polling day I fell and cut open my lower leg. It scabbed over 3 months later (no blood on the dressing for nearly 3 weeks now). 3 weeks ago I had cataract surgery on one eye (amazing result - I can see for miles). Surgery on the other eye to follow in about six weeks. About three months ago I noticed that my knees were painful, only when getting out of bed, sitting down, or getting up - when I have to use the muscles to stand up or sit down, not when I'm stood up or sat down, and not when I'm walking. I also have from time to time pain across my shoulders, but not PMR-type pain. I'm 6' 7" tall and weigh too much, about 19 stones. I used to be active.

I have paroxysmal atrial fibrillation but that's controlled by medication. I've been asthmatic for 41 years but that's largely controlled by medication. I have an enlarged prostate which is largely controlled by medication, and I have PMR which is a beast of a condition. Most of the time I'm fine, but lack energy. Today I planned to vacuum the dining room and tidy it up this morning, and update my village website this afternoon. So far I've done nothing, which is basically what I've done every day this week.

The shoulder pain seems to be related to low blood pressure - I've just taken it , and it was 89/55, with a pluse rate of 81.

I'm 70 but told by my doctor that I look 60. Sometimes I feel 95. I've had PMR for just over 2 years, and as you can tell I'm fed up with it. For PMR I'm on 5mg Prednisolone, Calceos (Calcium and vitamin D3), and a weekly dose of Alendronic Acid, following a Dexascan.

18 Replies
DorsetLadyPMRGCAuk volunteer

Hi Thomas, no wonder you're fed up, you've got a lot of things going on! None of which are helping your PMR reduction attempts.

How are you going about those reductions? Lots of people seem to get stuck at 5 mg. obviously your own body is not kicking back in with its own cortisol production, have you asked GP to check this function? Can't remember what the test is called, but I'm sure Celtic will be answering shortly and she'll confirm what it is.

Have you tried using the very slow reduction plan as advised by PMRPro?

I use a similar one, not quite as slow, but it seems to work. I think you can find a couple of different plans on the Nort East site of PMRGCA.

Also try reducing by 0.5mg or even 0.25mg a time, if you haven't already. The white uncoated pills can be cut quite successfully with a pill cutter from any chemist. Bit fiddly, but worth it.

You may have tried some, or all of the above. If so, sorry but you may just be one of those people who can't get any lower. It's a bit disappointing, but at 5mg at least you don't get too many side effects, although I can understand you want to be off steroids if possible.

Good news about your cataract though, I had my left eye done last August, absolutely brilliant (unfortunately already lost right eye to undiagnosed GCA) but what I've got is good!

Hope you soon feel more positive about things, at least we've won back the Ashes today! Hurrah!

Thomas45 in reply to DorsetLady

Thanks, DorsetLady. Yes I'm on a very slow plan, but using enteric coated so my next drop will be 6 days at 5mg and 1 at 2.5mg = 32.5 over 7 days, or down to 4.65mg. Normally I'd keep at that dose for 4 or 5 weeks before dropping again, 5 days at 5mg and 2 at 2.5, but not 2 consecutive days , more like Sunday and Wednesday 2.5, rest of the week 5.

DorsetLadyPMRGCAuk volunteer in reply to Thomas45

Hi again Thomas,

Are you on the coated tablets because of your other problems? Although your plan sounds good in practise, it obviously isn't working. Is there any way you can go on to the white uncoated ones @1mg? I think the problems lies with difference between the 5mg and 2.5mg on subsequent days. I think it's too much for your body to adjust to, because if you think about it it's a variation of 50% from one day to the next.

Just a thought, I may be wrong.

Hello Thomas.

I know how you feel. I have been trying to reduce from 5mg since April last year - 2014.

I am well and truly stuck. I have been trying the slow plan every 2 months but 5mg keeps me comfortable. I am 59 and have had pmr for 4 years. All we can do is trying. If we don't try, we don't know. Good luck.

CelticPMRGCAuk volunteer

Thomas, as DorsetLady has said, it isn't surprising that you're fed up due to all the problems you have had to face of late.

The test to which DL refers is the Synacthen test which can show whether your adrenal glands are kicking back in with their natural production of cortisol (natural steroid) which has been suppressed by the long term artificial steroid, Pred. This natural production usually starts to get going again around the 7.5mg dose but until it is up to speed we can have a shortfall of cortisol in our bodies as we reduce the Pred which can lead to returning pain. In a few people, the natural cortisol production fails to return to its peak production and those people will need to remain on a dose of around 5mg of Pred indefinitely.

As DL has said, if you could reduce in much smaller amounts using 1mg pills, you might just find that more successful, not such a shock to the body, even cutting those 1mg pills in half if necessary.

The knee pain could be caused by a number of things, not least the long term steroids which can cause muscle weakness. I experienced a few problems with my knees when on the lower doses of steroids and was convinced there was some long-term damage as even after discontinuing Pred, the knee pain persisted and I often resorted to wearing tubular support bandages. However, this pain did eventually resolve many months after stopping Pred. Also, the pain might be caused by one of the medications you are on: for instance AA can commonly cause pain in muscles and joints, as can your treatment for the enlarged prostate, Tamsulosin or similar - I know because hubby used to complain of some back ache during treatment with Tamsulosin. It can also cause low blood pressure. If the AA is the culprit then you should speak to your GP or rheumatologist about a possible alternative to AA.

The shoulder pain to which you refer could be caused by any of the above or could perhaps be due to rotator cuff syndrome caused by the log term use of steroids which can soften and weaken the tendons and liagments around the joints, particularly the shoulder. Such pain is described as a sharp stabbing pain - is that familiar? If so, a physio can help with this condition.

Stay positive and don't give up on kicking PMR into touch - it took me 5.5 years once on steroids.

First of all, it just does not matter if you are on 5mg of pred for the rest of your life and do not even think of reducing whilst you are having your cataracts sorted out and your leg is still healing (manuka honey cream is brilliant for cuts etc).

Please give your body a chance. It is telling you it is fatigued and needs rest to cope with all that is going on.

The Acth test, as MrsO has told you will tell you how your adrenals are getting on, you need to ask your GP to refer you to an Endocronologist and when you go for the test, take a book, I did but then I just dropped off to sleep - it was warm and cosy - and did not even read a chapter.

There are other bio-phosphonates if you feel that AA is not suiting you and the FDA in the USA recommends you don't take AA for more that 5 years. Take a look at the National Osteoporosis site for further information.

You knees, is it Osteo Arthritis? If so the pain can be helped by a bio-mechanical gel that works like WD40 - ARC site will tell you all about it.

You sound so fed up and I don't blame you - but how about you look for a Bowen Practioner and give it a whirl. So many of us have tried it and found it has helped us, I was sceptical and then when I finally tried it, I wish had gone years earlier.

Do you take your blood pressure everyday - I would not bother - you can over self-medicate and then worry about whether it is high or low. I have A/F and never bother. I would just get depressed.

By the way, dust comes back the minute you move it and who cares if the vacuming does not get done either today or it waits till next week.

I am 77 and somedays feel 21 and other days ready for the Queens telegram (well it is a card now).

Hang on in there and find a cleaner if you cannot stand dust - wish there were little smiley faces on here.

Zane1 in reply to jinasc

What would be the parallel to Bowen in the US?

jinasc in reply to Zane1

Here it is americanbowen.academy/

then you can find a practioner anywhere in the USA.

Here is the history of Bowen boweninfo.com/history.htm

developed in Australia.

Zane1 in reply to jinasc

Thank you for the link.

mega in reply to jinasc

Hello Sambucca, I'm afraid I can't offer any advice to poor Thomas as I feel very similar myself. I do like a tidy and hygenic flat too!

I have had GCA for coming up to five years now and have, for the second time, reduced very slowly to 5mgs. My CRP was 163 when I reduced too quickly (?) and ESR 138 at the beginning of this year. (start of year 5). My GP increased my Pred. in Feb. because of returnng symptoms and another blood test in May showed 19 CRP and 24 ESR. Big improvement. I have been on 5mgs every day ever since but have no energy, still have very fragile skin particularly on my forearms, which are a mass of purple and scars - haven't worn anything but long sleeves for 4.5 years! My hair is still coming out - except on my face(!) my waist is non-existent and I still look six months pregnant. I do have other health problems - AF, Thyroid, high osteoporosis, high BP and another upper chamber heart condition BUT I had those before I had this horrible condition and managed pretty well. I am 76 now and live on my own so it's vital I can rid myself of it.

Sorry for that preamble. Background really. The thing is, I am confused. When I last saw my GP I asked if there was any blood test that would show if my adrenals were 'waking up' as I had been on 5mgs for months and her answer was that there is no way of knowing whether adrenal hormones (?) are there because of steroid treatment or naturally produced. That seemed feasible to ignorant me.What is your opinon please? I have never heard of the Synachten test - my GP neither, by the look of it. She is a very sweet, pleasant woman but I have wondered before about her physician skills.

I did confront her with my lack of energy, breathlessness etc - was it due to my heart, GCA or medication? My lungs are fine but if I KNOW my heart is unlikely to pack-up on a trip to the pillar box, I could make another determined effort on GCA. I've got an appmt. for an Echocardiogram on Wednesday, which will be compared with one I had three years ago. I did not see a Rheumatologist until year 4 and my GP leaves me to my own decisions, never making a forward appt.

Reading through this I sound like a whinger but, like Thomas, I am so fed-up with it. I would appreciate some clarification on the S test and you can ignore the rest! It's relieved me to an extent, just writing it down. Thank you for your posts on here; I rarely comment but always read them all. Yours, along with a few others, are always helpful and sympathetic.

jinasc in reply to mega

OK, lets see if I can help.

The Adrenal test is called a Synathecen or ACTH test and you need a referral to a Consultant Endohronologist. When you are older, like I was, your adrenal glands often don;t wake up and you then need to be on pred 5mg for the rest of your life. I have a couple of friends whose adrenals have not woken up and they are on 5mg for life. So there is no need to worry about the 5mg and do not reduce until you have had that test and tell her as well.

When you are having the Echocardiogram, make sure they include the Aorta and Pulmonary arteries, GCA (Giant Cell Arterities is the biggest member of the Vasculitis Family and the Aorta and Pulmonary arteries should be checked every two years from the start of GCA, it is in the BSR Guidelines on the Treatment and Diagnosis of GCA and you GP has access to them from the British Society of Rheumatologists website and also the NHS website.

Fragile skin, your GP can give you on prescription Double Base Gel, if she refuses, then you can buy it at Boots for £11.50 for 500ml and it really helps if you follow the instructions on the label. MrsO who posts on here, told me about it 1 year into GCA and it worked and I still use it.

Finally, stand your corner and when you visit her, think 'car mechanic', if you took your car to a garage and you were not happy, you would tell them and take it to another garage, same with medics.

Good Luck and do let us know how you get on.

mega in reply to jinasc

Sambucca, many thanks for your informative reply, particularly the info on the Synathesen test. I shall inform my GP of it at my next contact!

I had the echocardiogram yesterday and, although I missed some of what the Doc. said because he was so quietly spoken, the gist of it was that as well as the AF there is a problem with one of the upper chambers of my heart (which I knew) which was affecting the blood flow and the Pred. wasn't helping that aspect. He said it was pointless monitoring me with the neck-hung 24 hour recording device until my heartbeat was slowed and thought the lowest possible dose of Digoxon (?) would aid that and that he would liase with my GP, by letter, and once I was more 'stable', would do something about the heart prob. and therefore the breathlessness. He also said I should take the TWO water-eliminating tabs. I'd been prescribed and not just the one I'd reduced to. I was carrying 2 or 3 lbs of excess water in my body. The trouble is it can be such an 'inconvenience' at times!

Just before I left I asked him to clarify, in his opinion, whether my constant fatigue and breathlessness was due more to my heart, GCA or meds. He thought mainly my heart but not helped by the other two! If only I could shake off this horrible condition I could have a clear run at the heart!

I shall leave it now for a couple of weeks, to see if I get a letter or contact from my GP. If not, I shall be on the warpath; I liked your car-mechanic comparison. There is no doubt that, face-to-face, I treat Drs. like demi-gods which is daft nowadays and will change.

I do appreciate your advice and hope I haven't bored you with my reply, which is NOT very informative. Best wishes to you and to all fellow sufferers of this horrible condition. Meg.

jinasc in reply to mega

Thank you for letting us know how you got on and no I am not bored. Did they cover the Aorta and Pulmonary Artery?

I gather is was a Cardiologist you saw - if so and s/he did not arrange to have those done with an ECG, ask why?

You have the commonest form of Vasculitis and they must be checked out.

S/he might not like the effect the pred had and still has, but that pred saved your sight.

Your doing fine , but next time if you cannot hear because they are sofly spoken - tell s/he and take someone else with you - it helps.

Keep going.

mega in reply to jinasc

Sambucca, sorry I've been a bit tardy in replying - a couple of visitors in the last few days which I really love but which tends to sap my low reserves of energy, plus a fairly early appt. at the surgery, which developed into a farce!

I should have mentioned in my previous post that I asked the echocard. practitioner to include the Aorta & Pulmonary arteries but she replied that they always do.

An ECG was done at the surgery, which I think triggered the appointment with the cardio. I have heard nothing from either my GP or the Cardio. which, to me, implies that I'm not an 'emergency' but nothing for another week and I shall be making enquiries.

Many thanks for your contacts. I really appreciate them. I'll let you know the outcome - all grist to the mill.

I just had an appointment with my incredible rheumatologist a few days ago. I have been on pred for about a year & a half now & take 6.5 mg which I am doing pretty well at. I have been under incredible stress due to a family situation recently & although he would like me to reduce to 5 as he says at five the danger to the body is much less he is keeping me where I am. Sounds like you have a lot of things going on & surgery coming up. You just might be better off to stay where you are right now. Just my opinion.


5mg is a very low dose and the same as I am on - if I have to stay there for life that's fine with me and my GP. I'm younger than you and weigh rather a lot less - and weight also has a role to play, you need more than me. And I've had PMR for 10 years - yes, I suppose I'm fed up with it but I live well with it!

And that BP needs sorting out - it is far too low for anyone. I'm not in the least surprised that you feel lethargic! I assume you are on antihypertensive medication for the atrial fibrillation as I am? It is obviously in need of review - urgently. Get your BP sorted out and I'm sure you might feel more like vacuuming the dining room - why is beyond me but you are probably a tidier person than me ;-) You can't blame PMR and pred for everything.

Hello Thomas:I'm 79 with borderline hypertension aggravated by prednisone , rxed with Norvasc 5mg ...PMR since March 2015...SEDRATE=96..rxed with prednisone initially 30 mg with immediate relief of pelvic , lower extremity myalgia, weight loss ,appetite, changes reversed , sedrate , now 6 at 7.5mg...trying to taper to 7.0 after being on 7.5 for a month....subjective response not great...feels like I got out bed all day long.Morning temp falls under 97.0 degrees F..( sign of not enough steroid).Myalgia is minimal while arising in A.M. which is good since it dissipates before I get to the gym. .I,m still able workout with tread mill /weights at my pre PMR level....able to retrieve/reverse all my pre PMR muscle loss.Have become involved in treatment with adaptogens...Take Rhodiola rosea(250mg) in AM before breakfast Ashwaganda(470mg) with lunch and dinner.Also take Curcumin(1000mg).These herbal supplements help bec. of their anabolic influences,anti depressant effects,anti-inflamatory effects....NSAIDs are not the answer...bec of a multitude of side effects,esp. while taking steroids.. Hopefully the use of these herbs will speed up my transition to 0 mg of prednisone. There is no downside with these herbs since by definition no adaptogen can have a signif. side effect to be labeled or listed as a true adaptogen. JBARIE,MD

Thanks to you all for your comments. As for Atrial Fibrillation the medication works fine, unless I forget to take it, and then I get an episode. I've had one short episode in the lat 16 months, after I'd forgotten to take it. (Flecainide Acetate, 150gr x 2 per day). Amiodarone didn't suit me. I'm not on a Beta blocker because I'm asthmatic.

My blood pressure fluctuates. About 2 hours ago it was 142/75, pulse rate 79, at rest. I've just been eating and been downstairs to let the cat in so there's no point testing it at the moment. I have a BP Monitor, one recommended by the British Hypertension Association, as I'm taking a high dose of Doxasozin mesiliate for my enlarged prostate. It's also a BP reducing medication. It does make me light-headed from time to time.

I can't recall having knee pain until I was put on Risedronate. I believe it caused not only knee pain but ankle pain also. I gave up taking it when I couldn't climb some stone steps to a house. I was put on AA and it's just bending my knees through more than 90 dregrees while putting weight on them which is painful. The GP I saw (not the one who prescribed AA) said it was arthritis, which is such a wide-reanging description of a condition, rather than the cause of the pain. I have Feldene and co-Codamol to relieve the pain. I've never thought in the past about how to get out of a car; I've just got out. Now I haul myself up on the door, or press down on the door cill and force myself up.

However, your comments have made me realise I'm not alone, but I do have a very untidy house. It was reasonable until my 22 year old Godson came to live with me. I used the spare bedroom for storage, now that stuff is scattered throughout the house. He came with pots, pans, plates, bedding, etc from an unfurnished flat, and I still haven't it all sorted. When he came I had one cat, which he'd persuaded me to get; now we have 4 (all unrelated to each other, and 3 of them neutered). The other one (Thomas) awaits castration soon, but is not allowed out. Tomorrow I'm taking the oldest (Mr. Tiddles Wolfie) to the vet for annual injections and check-up.

I'll study the other points you've made. I didn't know about the S test either. I'll wait until 4 weeks after I've had the other cataract done in about six weeks, before thinking of trying to reduce.

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