Good evening,
I hope you are all well.
I have started the slow withdrawal plan that PMRpro shared with us. At present I am on 7mg slowly moving towards 6mg
The 2 times that I have reduced during this plan for one day , the following day I have woken with bad neck , back and slight dizziness . Once I have been back on 7 mg for a couple of days I am ok again.
Does this sound like withdrawal and should it pass as I continue on the plan?
Can I have your thoughts please?
Many thanks
The idea of the slow taper is that you shouldn’t get withdrawal symptoms, but it sounds as if you are either -
very sensitive to even the smallest drop, or
7mg is JUST enough whereas 6mg isn’t.
You’ve got a couple of options, either -
stick at 7mg a bit longer, now might not be the correct time for you to taper....but another few weeks might be, or
try reducing by only 0,5mg instead of 1mg. Plain Uncoated tablets can be cut, or mix and match 1mg and 2.5mg to get the dose you want.
Thank you DorsetLady.
I was struggling at 5.5 mg and ended up back at 7mg. Rheumatologist wants to put me on mexotrate but I am very reluctant. Perhaps I will try a drop of 0.5mg drop.
Like you, I’d give the MTX a miss - you’ve been on Pred for only 18months - so I wouldn’t say in general you were having issues. It might help you reduce a little bit quicker, but it has its own side effects, and if your PMR is still active, it’s still active. MTX doesn’t help PMR as such.
Hi DorsetLady,
Thank you so much for all your help, it sometimes feels like such a lonely journey. It's great to talk to people who really understand.
I will try 0.5mg on Sunday when I am due to reduce again and see if this is better, if not I will stay on 7mg for longer.
Not sure how the rheumatologist will react as she seems to think I am not reducing quick enough but??????
Unfortunately a lot of Rheumies do! They seem to be stuck in the “2year” mindset - which has been compounded by their betters!
Some patients may get through in 2 years, but a heck of a lot don’t! But they’re always labelled -atypical - whereas they are very typical!
Good luck, but don’t be pressured into reducing too quickly.
Refer her to this study:
practicalpainmanagement.com...
medpagetoday.org/rheumatolo...
Both about the same work but different emphases - the link to the source paper is at the bottom of the articles.
Only 1 in 5 patients is off pred in 2 years - that is a lot of patients who don't manage to do so!
Thank you, sometimes you feel like a failure ( or making a fuss) when you can't keep up with their planned reductions.
What would we do without the support of this group .
You are absolutely not a failure. What I have learned in the past 6 years is this is not an exact science. Trust yourself and listen to your body
Take care
🥂
At this level I felt even 0.5mg and I noticed it very quickly as in by the evening after the new dose or next day. As the adrenal glands were being asked to do their bit when they were still too sleepy, I felt very fatigued, including muscle fatigue in neck and shoulders and fluey achey. I also got very emotional and jittery at times. I’d say the quick in and quick out nature of your symptoms is withdrawal.
Thank you SnazzyD.
Did you have to work through this , as it is withdrawl?
No, because I had to stop work as soon as high doses started for GCA. I also decided I only had one shot at this (no increases in Pred) and wanted the best chance of getting better. Broke my heart to lose my career but it was the best decision in the long run. The “just withdrawal” was enough to render me pretty useless anyway throughout the process.
Hi SnazzyD,
Sorry I meant did you have to put up with the withdrawal symptoms and keep reducing or did you wait ?
Ooh, I see what you mean. No, I always waited for 1-2 weeks free from withdrawal. The low adrenal feeling was present throughout until it settled gradually, so I adjusted my life accordingly. I never reduced if it remained acute though. This is why from 7mg I reduced 0.5mg every 6-14 weeks with the longer periods when I was 3mg and lower.
The idea of the slow taper as I developed it was to introduce the new lower dose just one day at a time - what you describe is the sort of thing I experience but by the 3rd or 4th meeting my body thinks "this is OK, I'll be back to normal tomorrow" and doesn't register its disapproval! Later I feel the change on the days of the old higher dose!
Withdrawal discomfort will always appear if the change in dose is big enough to upset YOU - everyone is different. The usual approaches to reduction take you from every day one dose to every day the new dose from one day to the next. DSNS does it more gently - and you can also have an influence by the size of the dose change you choose. It should never be more than about 10% of the current dose if you can help it - obviously at some point cutting the tablets gets too difficult. Less is better. A 1mg change at a 7mg dose is over 14% and keeps increasing as the dose falls.
It sounds as if "your" dose for now is 6mg and not lower, so you are on the cusp. It doesn't mean you won't get lower, just not yet. But personally I wouldn't start methotrexate at this stage if you are doing well with pred. You are at what is called a physiological dose, the amount of corticosteroid the body needs to function, and all good experienced rheumies stop worrying at about 8mg and below.
Studies with mtx showed that it takes a year for a difference in total dose to be seen - and in that time you have been exposed to potential adverse effects of another drug but with no guarantee that you will be one of the people who can get to a lower dose of pred because of the mtx - for many it either doesn't help/causes too many adverse effects so they stop or they can only get a couple of mg lower, which they might have achieved without the mtx anyway.
Jiml: Note: That I am no expert. But further to what these experts have told you. If you can't get to 6 mg. or even 6.5 mg.--If you can get an uncoated tablet in a dose of 2.5 as DorsetLady mentioned you can cut it in half for 1.25. Then with tablets in a dose of 1 you can even cut one of these in half for a total of 1.75. Mix this with a 5 mg. tablet and you can get to 6.75. In my personal experience below about 8.25 mg. was very, very hard for me. I have read on this site that around 7 mg. tends to be very, very difficult. I sometimes reduce only this .25 amount using the long DNS method, even taking each sequence numerous times before i lessen the number of days between the new low dose and the old higher dose. . It takes forever. But now my sticking point is 3 mg. or 3.25 mg. It's been 7 years, but again according to this site at least this dose is not terribly hard on my body, and it's better than a higher dose. Good luck.
Hi Asbeck,
Thank you for your help.
I have tried 0.5 but never thought of 0.25.
That could be very helpful moving forward.
All this is hard work isn't it?
I'm trying tapering. I was going down too quickly. Over last period have gone:
6.0 two weeks
Alternating 5.5 and 6.0 for two wks
5.5 for 2 wks
Alternating 5.5 and 5.0 for 2 wks
5.0 for 2 wks
Alternating 5.0 and 4.5 for 2 wks
Now started 4.5 for two weeks and hopefully so on........
As I go down, to start with I feel pretty bad but over the two weeks I gradually feel better. I keep a record of my pain and tiredness.
I wouldn't say I am ever pain free.
I haven't hit a wall yet and I'm just putting up with the pain. I honestly don't know if that's a good thing or a bad thing! I've spoken to GP - he seems to think what I'm doing is OK. He's prescribed Naproxen for the pain but I doubt I'll take it - I don't think that's a good idea in the long run.
I'm not saying this is the right way to do it - I just thought I'd share this as others have.
Best wishes to you.
Is the pain worse than it was on higher doses of pred? It shouldn't be. You are not reducing relelntlessly to zero, you are looking for the lowest dose that gives the same result as the starting dose did. An increase in pain suggests the dose is now too low. You should NOT "put up with the pain" and Naproxen won't help PMR pain and isn't a good idea together with pred (it is an NSAID).
Below 10mg 1mg a month is the recommended drop - but in line with the "not more than 10% of the current dose" guideline by this stage 1/2mg per month is better. You need to go more SLOWLY below this stage to allow the adrenal function time to catch up.
Has your GP had PMR himself? Because what I hear in your description is that you aren't really doing the optimum way. And I suspect there are a lot on the forum who would agree.
Hi Many thanks for your reply. I am basically going down 1/2 mg per month. I felt fantastic and pain free on steroids until I came down to 6.5mg (Apart from an annoying puffy face and night sweats).
I have developed cataracts as a result of steroids and I have early indications of glaucoma, which is why I want to come off them. The vision in my right eye is now very poor. So that's why I'm reducing them as slowly as I can. But I am experiencing pain - nothing like the pain I had before I was put on steroids. I don't know if the pain itself is causing my body harm.
I completely agree about the Naproxen and I doubt I've met any medical professional who's ever had polymyalgia. I saw a rheumatologist in November who was moderately sympathetic and told me the cause of it was probably stress but he managed to get me out of the door in 5 minutes with my recommended dose on a scrap of paper.
I haven't had a blood test since February. Should I still be having regular blood tests?
Best wishes
I'd say you should have stopped at 6.5mg - you are never reducing relentlessly to zero, you are looking for the lowest dose that gives the same result as the higher doses to remain there longer term. You identify the dose where symptoms start to return and go back to the previous one. When pain and symptoms return that is a sign there is inflammation at work - and it too does damage even though you may think you can "manage". There are no brownie points for being a martyr.
I'm not trying to be a martyr I assure you!! I'm trying to save my eyesight. But I am concerned that the inflammation that is clearly now at work with the pain is also causing damage. What damage is it causing because this hasn't been explained to me?
PMR pain isn't likely to risk your vision. But coming off pred will only make that pain worse. That's what I meant by being a martyr.
Cataracts aren't going to improve by cutting pred now - you need cataract surgery. The role of pred is not entirely clear with cataracts - I've been on pred for over 11 years and have no sign of cataracts so it is possible that what happens is the pred brings them forward, you would have developed them eventually anyway. The raised pressures should be managed with drops but can also be dealt with during cataract surgery.
The PMR pain is because the inflammation in the soft tissues is no longer controlled - the soft tissues surrounding joints: the muscle/tendon junctions and the muscle fascia, the transparent skin surrounding muscles. For that you need enough pred - NSAIDs don't cut the mustard and have their own risks, not only but especially in combination with steroids.
The ophthalmologist has referred me for a cataract operation. I had an eye test when I had just started taking Pred and another test 6 months later and the eyesight in my right eye had deteriorated markedly. I have cataracts in both eyes and he said the type of cataract I have is associated with steroids. I do think my family may be prone to cataracts. Other family members have had them removed. It sounds like you don’t have this predisposition, which is good.
I wouldn’t take NSAIDS for the reasons you give. If the inflammation in my muscles/tendon junctions and the muscle fascia isn’t controlled what long term damage can this do? Thank you very much for your time btw.
"which is good."
It is in some ways - but if I had cataracts I could dispense with distance specs! I wear specs from before getting out of bed in the morning until after I get in at night - have done since I was about 7 years old!
Does this all sound normal?
PMR or withdrawal pains?
Does this sound like I've hit the wall?
Pred withdrawal 
Does it sound like PMR? 
