Reducing from 7mg to 6.5mg.

[Whatawonderfullife]

I have been doing really well and feeling quite positive about how far I’ve managed to reduce, with the help of methotrexate. However, I began to experience some aches and pains at 7mg but decided that feeling fatigue and aching may be where my body is starting to go back to normal and would ignore how I felt. The next time to reduce, down to 6.5mg was at the beginning of this month, so that was a couple of weeks ago. I am feeling quite low now, my arms are aching, my hips, lower back, buttocks and thighs are aching, in fact I’m finding each day and night difficult. I wake up in the night where I need to turn over but it hurts. I am also starting to get headaches in the temple area and my head is becoming quite sensitive with areas that hurt when touched. I did have a flu jab this Monday, which made my arm ache but nothing else.

When I had my rheumatologist telephone appointment, last month. I mentioned that my shoulders were aching and I couldn’t lift my arms above my head and that getting out of a chair and walking upstairs was difficult, where my muscles in my thighs were stiff and aching. He advised me that this wasn’t a flare because PMR effects muscles not joints and with no headaches, not to be too concerned about GCA and continue to reduce the pred.

So I have and now I’m finding the aches and stiffness are spreading and lasting longer through the day. So I would just like some advice from you lovely people. Do I stick to 6.5mg or should I go back up to 7mg? Also, should I email the rheumatologist nurses to let them know what’s happening .

Sorry it’s such a long message. Thank you in advance.

[SheffieldJane]

Well your description of your symptoms sounds just like my experience of untreated PMR, never mind a flare. I would also be very concerned about the headaches and temple sensitivity in case the PMR was morphing into GCA. 20% of cases do. I honestly believe that you need the input of a rheumatologist/doctor who is more familiar with the signs and symptoms of PMR/GCA. You are left with no option but to go down the emergency route for suspected GCA. Remember that a significant percentage of patients, particularly when they are taking Pred show no inflammation in their blood test results. Some doctors seem thrown by this fact. What you cannot do is hesitate while your symptoms worsen. My recent experience of A&E showed that they are aware of GCA and its urgent need for treatment. They were going to keep me in for less reasons than you have. As you know, your eyesight maybe at risk. Watch out for jaw pain while chewing and any eye symptoms at all. You have the headaches, what does he/she mean? Mine were not severe. Act now!

Methotrexate offers no protection from sight loss and does not help all PMR sufferers.

[Whatawonderfullife in reply to SheffieldJane]

Ok thank you, I tend to feel like I’m making it up. I’ve been told it all about the numbers and the blood test 🤷‍♀️I’ll phone rheumatology.

[yorkieme in reply to Whatawonderfullife]

It definitely isn't all about the numbers but sadly and often to our cost G.P.'s and Rheumy's rely on them far too much.What you have described should start alarm bells ringing with your G.P. if only to take preventive action now.

You really must contact someone straight away.

[cranberryt]

It sounds like even 7mg is not enough. My rheumy forced me to taper under similar circumstances and all it leads to is a raise in dose and lengthening the time on prednisone. I would guess you need to go back to something like 10mg until the pain is gone again. Then taper again. Of course the GCA possibility is more serious and should be tended to immediately. But rushing a taper with symptoms is definitely counter productive! Many of us learn the hard way, which is sad given that often the doctor is the one pushing it.

[cranberryt]

Oh, and PMR is absolutely felt in the larger joints as well as muscles.

[Whatawonderfullife]

Thank you all for your thoughts. I was treated for GCA in October 2019, it’s been a slow process to get to where I am now. I don’t want to have to go back up to a high dose so would much rather catch it early and just go up a bit to dampen it down. I’ve contacted the rheumatologist, hopefully they will come back to me with something helpful?

Thank you again, I really appreciate your help 😊

[piglette]

I have found if you ever start to have any PMR aches and pains STOP REDUCING. PMR will always win in the end. As you are having pain now, personally I would go up to around 10mg for a few days, see how you feel, and then reduce to the point you last felt OK if the pain has been sorted out. I really do despair of some of these doctors. The frightening thing is they are making these seemingly incorrect recommendations for loads of other things besides PMR.

[PMRpro Ambassador]

What a p^*% - and exactly how does he think you raise your arms above your head other than by using muscles? All that sounds like I was pre-pred. He is also incorrect in his assertion that PMR doesn't affect joints. It doesn't damage the joints like RA but it does cause synovitis and inflammation of the soft tissues around the joints - the periarticular structures - and that has been proven with PET-CT scanning.

medicalnewstoday.com/articl...

"The inflammation caused by PMR can lead to generalized aching, stiffness, and flu-like symptoms in both sides of the body. The most commonly affected joints are the shoulders or shoulder girdle and the hips or hip girdle. "

medicinenet.com/polymyalgia...

"Polymyalgia rheumatica is a disease of the muscles and joints characterized by muscle pain (myalgia) and stiffness, affecting both sides of the body, and involving the shoulders, arms, neck, and buttock areas."

Methotrexate will not necessarily get you off pred entirely - most people manage to get to a LOWER dose but but getting stuck at 7-9mg is not uncommon. The same actually applies for tocilizumab for half of patients and at a similar sort of dose.

Some authorities say that only some 40% of patients demonstrate headache as a symptom of GCA - so what does he say to the 60% who don't? And top authorities in the field mention PMR as being accompanied by a polyarthritis.

If it were me I'd go back - but is 7mg enough?

[Whatawonderfullife in reply to PMRpro]

Thank you PMRpro. So should I go back to 7mg for a while or maybe 7.5mg which was when the discomfort was manageable? I just don’t want to land up going too high and having to start all over again because I’ve left it snd listened to the rheumatologist’s advice.

[HeronNS in reply to Whatawonderfullife]

Given your symptoms I'd go back up a bit higher than your last good dose and give it a few days. You might not *need* 10, but you are likely to get a rapid improvement if you go to 10, and then you can drop back fairly quickly to 7 or 7.5. Better I think than creeping up - which I made the mistake of doing earlier this year and it didn't shorten my flare by doing that. If anything it extended the time I needed a higher dosage.

And, like the others say, if GCA really is back in the picture, treating that trumps everything else, including this advice.

[Whatawonderfullife in reply to HeronNS]

Ah ok. That was going to be my next quest, if I do go back up to maybe 10, how long do I stay on it before I start to come back down?

[HeronNS in reply to Whatawonderfullife]

My understanding is you can stay at a higher dose for a week or even longer without having to taper as slowly as you did to get to your previous lower dose. It may even be longer and I'm sure someone with more knowledge about that will respond. It really depends, though. I've found that I was not able to drop quickly back to a level I'd been fine at for years, which tells me the disease activity had increased, it wasn't a simple question of being at too low a dose for a short period of time and kind of making that up and cancelling the previous step-too-far taper. I've had to stay at higher dosage for a couple of months, although I am now getting back into territory more familiar to me, like 3.5. Fingers crossed the PMR flare has subsided and I will be able to get back to the 2 mg I was good at for several years! But at this point I'm just relieved to be below 5 again

[Whatawonderfullife in reply to HeronNS]

Oh my goodness HeronNS, I do hope you manage it. I thought that once we were able to get down to low level, it meant that we had the all clear of PMR or GCA and it was just a case of slowing getting off the prednisolone. I know pred is our friend in a lot of was but it is still nice when getting down to a lower level. Thank you again for your help and good luck on your journey. We’re all in this together!

[HeronNS in reply to Whatawonderfullife]

I've learned to my cost that even 1 mg is all one might need. I was actually to zero for a few weeks last year but the PMR pains began again and got really bad, so I was back on pred within a month - no way could I stick it out to see if I would be okay after all. Then for some months I was okay at around 2-2.5. Never could get back to 1 again - I had spent a whole year tapering from 2 mg to zero. Unfortunately I have earlier this year had a major flare. Although I never let it get as bad as untreated PMR was, it did get pretty bad and I had difficulty tapering back down. This is a very annoying disease sometimes, and I am quite grateful for pred, despite all its faults!

[Greynomad in reply to HeronNS]

Sounds just like me.

[PMRpro Ambassador in reply to Whatawonderfullife]

10-14 days is about the max to be able to drop straight back to the previous dose before the flare.

[PMRpro Ambassador in reply to Whatawonderfullife]

The question is whether the PMR will mount up again - which it will do if the pred dose is too low. The left-over inflammation will mount up until you are back where you were. Then it is a choice of more pred, possibly a lot more pred, or pain. It really isn't a simple choice of managing on a too low dose just in the hope that that will allow adrenal function to return. Especially at this level, since for many people it needs well below 7mg to trigger the return of adrenal function.

[Whatawonderfullife in reply to PMRpro]

I understand, I think I will go up to 10 and see if that helps. Maybe I’ll get some decent nights sleep and not wake up in agony. Thank you for all your help.

[Hildalew in reply to Whatawonderfullife]

Did you have any 'discomfort' when you were on 8mg? If not, I would suggest going back at least to there to remind yourself what it felt like.

[Whatawonderfullife in reply to Hildalew]

No, I felt quite good to be honest. I thought I’d cracked it

[Whatawonderfullife]

Thank you, I’ll think on it.

[TheMoaningViolet]

It sounds like a good plan. I would still insist on being seen urgently as Jane suggested to make sure your sight is not in danger. Your rheumatologist sounds like he was in a hurry last time you spoke. Everyone with this disease should always worry about GCA and keep vigilant.

I hope you get the relief and care you deserve.

[Whatawonderfullife]

I have just been emailed by rheumatology. They’ve said this is quite normal and to keep going. I need to try to exercise and basically battle through it. My markers aren’t showing high inflammatory so it’s just withdrawal. 🤷‍♀️

[Thelmarina in reply to Whatawonderfullife]

For what it’s worth I would follow the advice here. Treat it as if you have a bug where the advice is to increase your dosage for 3/4 days before dropping down again. Up your dosage to 10mgs and see how you feel. If there is improvement you can then drop to 9 for a couple of days, then 8. Stay there while you assess how you are. Gradually, when you’re ready, you can drop to 7 .5, then 7 - half a milligram at a time using the dead slow method. The world isn’t going to shatter if it takes you a couple of attempts to go lower - and watch those headaches. Good luck and be patient 😅👍💕

[Whatawonderfullife in reply to Thelmarina]

Thank you, patience is what I need. It’s been nearly 2 years and with what the rheumatologist says, I should be feeling better by now. I will have a word with myself and get back on track. Thank you x

[PMRpro Ambassador in reply to Whatawonderfullife]

Absolute drivel! I do hope they ALL get PMR one day and ALL get such hopeless medical care. They go about things in such a cavalier manner and then tell us that relapses/flares, whatever you want to call them, are inevitable. It never seems to occur to them that barging around like a bull in a china shop is what is causing the problem. I have been told by at least 3 very good doctors that at 8mg they relax a bit. But that is here in northern Italy where they have quite different views about what patients should be asked to cope with. Maybe cutting the pred dose quickly might mean a few more years later (though I doubt it somehow) but if they are as miserable as my first 5 years of PMR were without pred, I don't want to know to be honest. At a lower dose than I'm using at present I wouldn't be able to function - and that would mean 2 people needing to be looked after whilst at present we do reasonably well thank you.

[Thelmarina]

It’s a nuisance having to educate your rheumatologist but there we are! I was diagnosed in 2018 and am still on 8mgs. So that’s four years!! But I have a life 😀🥳

[Whatawonderfullife in reply to Thelmarina]

Yes I do r understand how they get it so wrong!

This is my problem, I feel so rubbish that my life has just ground to a near holt. I was such an active person before I was poorly, running 4 times a week and doing the odd half marathon when I felt like it. I rode my horse and looked forward to seeing him twice a day, every day. I can’t do any of it other than muck out at a leisurely pace.

I tend to think the rheumatologist thinks I am lazy and not trying, little do they know how desperate I am to have a bit more energy and manage to reduce like they want me to so that everything can go back to some kind of normal.

How can I say that I’ve been taking 10mg to stop the pain when they’ve told me I must grin and bear it?

[HeronNS in reply to Whatawonderfullife]

Withdrawal is a very real thing, but we know it passes in a short time. Persistent pain and discomfort is the disease, and low inflammation markers really only show that pred is doing its job. We all know that pred isn't a cure, so when doctors assume low inflammatory markers show the disease is gone (no matter how the patient actually feels) they are making a fundamental error, that pred has cured the process, not just dampened symptoms.

I do think it important where possible to get the doctor on your side, so enrolling them in the "experiment" of trying a different method of tapering can be positive, if they have the maturity and compassion to agree with you and actually assist you in the effort.

[PMRpro Ambassador in reply to Whatawonderfullife]

Is your GP any more use? Even if he thinks this rheumy is excellent it may be for other things like RA although her being good doesn't mean her minions are! Almost no other disorders are treated solely with pred - just used for flares - so the process with PMR is very different. PMR is also a complex disorder - top experts are now realising that there are different version and like your rheumy wouldn't expect all MS patients to react to a treatment the same since it is realised there are 3 different versions, he shouldn't expect you to be the same as his other PMR patients or his RA patients. Pred is our DMARD - there is no alternative and DMARDs used in RA don't work well for PMR. If they did they would use them first-line and they don't. PMR is a chronic disorder so starting with a high dose isn't to cure anything - it is to set a baseline of low inflammation to then identify the right dose for you to manage the ongoing creation of inflammation. They just fail to understand the way the illness works.

[Viveka in reply to Whatawonderfullife]

Perhaps you could give the specific examples of how active you were before PMR when you communicate with rheumy in person or writing and say that you want help to get back to the point where you ride and run regularly, including half-marathons, and at the moment you are very far from this and feeling worse. Keep telling them. It will reinforce how determined you are to reduce, but only safely and effectively.

[Whatawonderfullife in reply to Viveka]

Ok, I’ll include my past activities, like you say it will reinforce my determination to recover.

[TheMoaningViolet in reply to Whatawonderfullife]

I know exactly what you mean. I stopped AA when I got to 5 mg on the advice of a private rheumatologist whom I saw initially before I got my NHS referral. I told this to my current rheumatologist in a telephone conversation almost a year ago. She asks me about it every time we have our telephone consultation. The treatment for many diseases is a bit like a sledge hammer. At least with this disease you can be in charge of fine tuning it by paying attention to your symptoms. The current advice from my rheumatologist is to reduce 1 mg each month; this was issued to me in a 3 sentence email when my last appointment was postponed by 3 months. I am reducing 0.5 mg every 8-9 weeks. My rheumatologist has not seen me since January 2020 (we only have telephone consultations) and even though I explained to her my tapering approach she seems to have forgotten it. My GP is a lot more in tune with my approach and she is the one issuing prescriptions. Our doctors are only people (hopefully) trying to do their best, but they forget, misjudge or misunderstand like everyone else. I am not saying that they are wrong here, but the extent to which they engaged with your situation makes me worry about their assessment.

[Whatawonderfullife in reply to TheMoaningViolet]

Thank you, I think you’re right. It seems as though this illness is just not understood very well by some medical professionals. I have said to my husband that they need to live it and then maybe they would understand a little bit more.I have since had a phone call from rheumatology. They are going to allow me to taper very slowly, stay on 6.5mg for another month and hopefully the pain and stiffness will have subsided. They are also going to increase the methotrexate to help. My email to them where I did have to remind them about quality of life through each day instead of just existing from day to day, unable to do anything and just feeling awful seemed too make them take notice.

[Thelmarina]

One of the positive aspects about polymyalgia is that you learn to tell the truth. Explain that you are so uncomfortable that you would like to try a different approach , in the knowledge that you can try their system if yours doesn’t work. Then think about changing your rheumatologist or doing without one. Have you a sympathetic GP?

[Whatawonderfullife in reply to Thelmarina]

Ok I will say that to them. Yes I do have a great gp although he does think this particular rheumatologist is excellent. It’s rare that I get to speak the the consultant though, it’s usually one of the doctors under her.

[Thelmarina]

You can always to speak to the consultant yourself - explaining you have conflicting advice and would like clarification from her. You promise not to take up her time …👍

[Whatawonderfullife in reply to Thelmarina]

Thank you so much. I will give it a go 😊

[Thelmarina]

Do let me know how you get on - and don’t be discouraged if you don’t get the response you want. Do be firm about trying your way first. It’s reasonable and adult. Don’t waiver 😅. And yes, I am very bossy 😂xx

[Whatawonderfullife in reply to Thelmarina]

😊

[Call_Me_Wally]

What I find interesting is that not a single person has replied saying the Rheumatologist could be right and they had a similar experience to yours, with PMR eventually burning out in the end (remission).

Like you, I was very active prior to PMR as well, and willing to put up with a level of discomfort hoping is would help the adrenal 'kick in'. After much reading on this site, I've come to realize this isn't how it works.

Don't ignore your symptoms, listen to your body, not the Rheumatologist.

[Whatawonderfullife in reply to Call_Me_Wally]

Thank you, I feel safer going with the advice on here rather than my rheumatologist.