5th week of slow taper

[PMRSUE]

I have had PMR for five years and tried many times to get below 6 mgs. Firstly, by dropping 1 mg every couple of months or 1 mg on alternate days. After two weeks on both reductions the pain in my neck, shoulder and arms came back and I felt very unwell. I am now week five into a slow taper and have got down to the new dose of 5 mgs five days and 6 mgs the other two days. I was feeling so pleased with myself and thought this plan was working, then three days ago I woke up with the old familiar stiffness and pains again. My question is what to do now, do I need to abandon the taper and start the whole process again. I can't get an immediate appointment with my doctor so would appreciate some advice from the forum. So downhearted....

[SheffieldJane]

Try not to be downhearted Sue. This really is the name of the game, particularly at ‘this kind of 7 mgs downwards stage. Your Adrenal system will begin to object to losing its steady synthetic supply and your own Adrenals will be beginning to wake up, somewhat erratically at first. This for me, produced sparks of time when I felt quite normal, the other times when I felt really ill and so tired - worsening with any attempt at reduction - coupled with withdrawal pains and breakthrough pains. It is very hard to work out what to do for the best. I remained at 7 mgs for a year, periodically making attempts to slow taper by half a mg ( using my sharp pill cutter). Also feeling under medical pressure to take other meds such as Methotrexate. I resisted other drugs and eventually one day something changed and I was able to get to 6.5, then a month later, 6 mgs, then 5.5 then 5 mgs - where my body wanted to stay. In the meantime I had a Synacthen Test and my Adrenals were found to be underperforming. The next test after lowering a bit more, showed the function normalising. The fatigue remains and I am now at 4 mgs. I am due another Synacthen Test when I get down to 3 mgs. In the meantime I have undergone various tests eg PET-CT , bloods, cardio, urine, to ensure that nothing else is going on. I am pretty mobile, very tired, and have developed high blood pressure. My main physical difficulty is getting out of the car - it seems to involve every muscle that is weak or sore. General pain is fairly minimal. Things are moving in the right direction. I can walk quite briskly.

This is a time when you have to use your intuition and taper very carefully. Winter weather doesn’t help and there is no map. With any luck we will both get off the old life- saver Pred. I suspect that there will still be a period of rehabilitation, to get back to wellness though. Your journey might be different,, but don’t underestimate the challenges of this final lap. 🍀🍀🍀

[PMRSUE in reply to SheffieldJane]

Thank you Jane. Your doctor or Rheumatologist seem to have carried out a lot more tests than I have had in the five years I have had PMR. I see my rheumi twice a year for a chat and blood tests, that's all, and my GP as and when needed. I have never been offered a Synacthen test but will do when I see the consultant in January. She usually tries to get me back on AA which I took for four years as well as Methotrexate which I refused as I have Bronchiectasis. Do you think I should up the pred for a few days, then go back to 6 mgs and start the taper all over again. Thanks for your help Jane and I wish you well.

[SheffieldJane in reply to PMRSUE]

Synacthen Tests are not an accurate reflection really until you get below 5 mgs. I think that’s why it was shown to be insufficient in me. Just be aware of its potential impact. I would go back to the dose I was last comfortable at and wait it out for a bit. In my experience these rumbles get worse and you need even more to control a full blown flare. A clued up doctor would probably confirm this and they have access to your medical history.

My tests have been triggered by abnormalities in routine tests like blood pressure. My Rheumatologist is very thorough though and a leader in the field of PMR and GCA.

[DorsetLady PMRGCAuk volunteer in reply to PMRSUE]

I would be inclined to go to 10mg for maybe 5 days, you can then drop back to 6mg without too much hassle.

Then I would stay at 6mg for some time - perhaps until Christmas and New Year over. I know that sounds a long time, but this time of the year can be stressful in itself and add in the colder wetter weather and it makes tapering difficult for all.

Most of my time with GCA I put tapering on hold for about 4-6 weeks during Dec/Jan.

[PMRSUE in reply to DorsetLady]

Thank you for your advice DL. The strange thing is that I am in a happy stress free place at the moment looking forward to Christmas and a holiday soon after, so the pains must be either be a relapse or withdrawal. I will tough out the weekend, then follow your advice, if no joy.

[PMRpro Ambassador in reply to PMRSUE]

Even pleasurable things can be stressful to the immune system - look how many people get ill on holiday!

[PMRpro Ambassador]

You are never reducing the pred dose relentlessly to zero - the aim is to identify the lowest dose that achieves the same result as the starting dose did, that was your guideline and you shouldn't feel worse at the end of the reduction step than you did at the beginning.

When your body rebels at a similar dose more than a couple of times it is almost certainly a sign you have reached that dose and it sounds as if it is 6mg for you at this time. It doesn't mean you won't get lower - just not yet. A good way to approach it is to return to the last dose that worked for now and wait a few months and try again. It will work eventually but not until the underlying activity of the autoimmune disorder that causes the symptoms we call PMR. Forcing a reduction before that will just result in a full blown return of symptoms and possibly needing to go back to the start - and no-one wants that,

The median duration of management of PMR with pred is just under 6 years - which means half of patients take more than that.

There is little point having a synacthen test at this stage, you need to be down to 5mg at least and preferably lower, 3mg is better.

[PMRSUE in reply to PMRpro]

Thank you for your helpful reply. I will wait a couple of days to see what happens, then if I continue being in pain, will take 10 mgs for five days, then back to 6 mgs to tide me over Xmas. I don't post very often but login daily to read what others are going through. This site is a godsend for PMR sufferers, so informative and friendly. Thank you for such great work.

[Margaret1951]

Hi, bless you, I was in the same position when I was on a lovely safe dose of 5mg, then my nice doctor asked if I would try 4mg which I did. I had to get desperate advice on here to see if I had a flare up, yes I did and it was bad. I am now on 7.5mg which is fine but going to reduce to 7mg next week. I have had GCA and PMR 6 1/2 yrs now, I have come to the conclusion it’s not worth rushing cutting down. Good luck and don’t rush x

[PMRSUE in reply to Margaret1951]

Thank you Margaret. I'm toughing it out for a few days to see if the pain etc. passes in case its withdrawal, if not, will increase to 10 mgs for a few days, then back to the safety of 6 where I have been for the past three months. Back to square one.........

[Margaret1951 in reply to PMRSUE]

I am having a bad morning with my leg muscles and joints, think it’s the cold weather this morning ! Bad frost 😱

[PMRSUE in reply to Margaret1951]

Hope you're having a better day today Margaret. Take care.

[Margaret1951 in reply to PMRSUE]

Hi, dare I say no, my chihuahua had a big operation on her back leg and has a metal plate in it now. She has only been home a week and I have to lift her upstairs and down, on and off the sofa, it’s killing my legs and hips and every other joint, not her fault though,on my own so must be done. Got to do this for another 5 weeks and can’t think of a different way to do it, looks like I am just destined to be in pain especially in my muscles. Oh well there are some of my friends on here worse than me I think xx

[Hidden in reply to Margaret1951]

Hope both of you feel better soon. I had a dog years ago that was hit by a van and I spent weeks on the settee. 😕 🌻

[Margaret1951 in reply to Hidden]

Angel is just as likely to jump off sofa, I have her big pen up at the side of my bed, 6 weeks would kill my legs 😱 I have a 6 seater corner unit and it’s not a soft one lol

[PMRSUE in reply to Margaret1951]

Good morning Margaret. Having to lift your poorly dog up and down the stairs can't be doing you any good at all. Could you not sleep downstairs with him until his leg heals up? I hope you aren't in too much pain. Best wishes.

[Margaret1951 in reply to PMRSUE]

Hi, getting upstairs is the worse, even though she is small she is a heavy little thing 🐶 only another 5 weeks to go 😂😂😂