Reducing from 20 to 15 any problems?

[enen]

On 20 I felt fine but since reducing to 15 feeling the aches in my arms shoulders us coming back and feeling very fatigued once again. Anyone else experienced this?

[polkadotcom]

I think we all have, I suspect it was a reduction too far for PMR. You may have found it easier if you'd gone to 12.5 first and stayed there for a while until it settled. You may even find it eases things if you go up to 12.5 now.

There's no point in reducing for the sake of it with PMR. You get all of the pain, but none of the benefits if the dose is too low.

[DorsetLady PMRGCAuk volunteer]

Hi elstep,

As polkadot.com says - probably too fast. You need to do smaller tapers, and maybe a slow reduction plan rather than an overnight drop.

[Celtic PMRGCAuk volunteer]

Elstep, did you go straight from 20mg to 15mg? If so, that's a big step for the body to adjust to, and risks the inflammation breaking through. You may have found it more successful and less likely to produce returning symptoms if you'd tried reducing to just 17.5mg in the first instance. You could try increasing back up to, say, 17.5mg to see if it makes a difference, and the sooner the better so as to reduce the risk of needing to return back to the starting dose to get things under control. Hope that helps and increasing the dose works - good luck!

[piglette]

My rheumie got me to reduce from 20mg to 15mg and I felt as if I had been hit by a truck. I then did 20mg one day and 15mg the next alternately for a month and that worked much better.

[Riversnan]

I am newly diagnosed with PMR, I have been very impressed with all the posts from everyone here.

I started after a false start of being told I had it and then two days later being told I didn't have it as there were no markers in my blood test. I then went three weeks, progressively getting worse until it was getting difficult to dress my self and even clean my teeth.

I went back had another blood test but was started once again on steroids as my doctor said he was convinced it was PMR. Immediate results the next day life was almost normal again. The tests came back positive for markers this time.

I have been on 15 mg for 2 weeks and the doctor told me to go down to 10 mg which I have been on for just a week now, I am still feeing good, a little stiffer and can feel some light muscle pain in arms a butt, other than that ok.

I am just hoping that I will not go backwards as I think he wants me to lower dose to 5mg in 2 weeks. After reading all the posts I am beginning to wonder if this is wise, has anyone else had a good result on a quick lowering of dose.

[Dobermanlover in reply to Riversnan]

This is a reply to Riversnan - that is exactly the instruction I was given when I was diagnosed a year ago! (You don't live in SE Cornwall do you?) I was actually taken off them after a week as at 15 he didn't think I had improved enough, with disastrous results. I then had to start at 30 and I am only down to 15 after a year, but as you can see from my other post, all does not seem well. Try to persuade your doctor that you can't reduce like that with PMR, or it will come back to bite you! When I finally got an appointment to see a rheumy, she wrote to my doctor and told him that reductions had to be slow, and he finally accepted that. Good luck

[patsy69 in reply to Riversnan]

Patsy 69 sounds very rapid to me . if you see Dorsett lady and pmr pro and Kate Gilbert book they , I think suggest slow . I made mistake of rushing it at least once patsy 69

[HeronNS in reply to Riversnan]

Riversnan, that is much too big a drop. You should be on the 15 mg dose for no less than a month. No drop should be more than 10% of the total, and possibly even less. When I reduced from 15 it was by 1 mg per week for several reductions. Hit wall at 9 mg, back up to 10 for a few weeks then dead slow reduction ever since, and no flares. This journey, from start of treatment, has taken 13 months so far. Now at 3.5.

Reducing pred with PMR is not like reducing for any other disease as we aren't cured by pred, just have the inflammation held in check. Our goal is to get to the lowest dose possible which still controls the symptoms, and stay there while we wait for the underlying auto-immune disease to burn itself out.

[Dobermanlover]

Could be talking about me! I felt fine whilst on 20 mg - though I did reduce very gradually and very slowly and am now at 15 mg, slight aches in tops of arms but it is the fatigue that is really getting to me. I feel that every day is a battle from the time I get up to the time I go to bed - very depressing as I am a person who likes to be busy. I am thinking to stay on 15 for a month or so and maybe things will settle down. What do others think?

[garethgti in reply to Dobermanlover]

Hi I am confused by this I was not aware that steroids helped with the fatigue I thought it was only for the muscle pain

I reduced from 20 to 15 to 10 in a matter of a month and although the pain is bearable the fatigue is really bad....... sleeping all day 12 to 15 hours or just not having the energy to get up off the settee.

Would this improve if I increased my dosage?

[PMRpro Ambassador in reply to garethgti]

The steroids only really help with the fatigue in that they reduce the inflammation and allow a far better blood flow to the muscles which helps them perform better - and pred DOES have a boost effect at higher doses for some people (never did anything for me!). Reducing from 20 to 10 in a month is something for other illnesses where pred is used - it's really not advisable for PMR. Doing such large step-downs can induce steroid withdrawal rheumatism - smaller steps spread over longer avoids that and since it is management not cure why make it hard for yourself?

[Disdnurse]

Yes. I am now at 18.5 mg Pred and just can't feel good below that.

[enen]

Thanks for all your replies. I had GCA 5 years ago and suffered with terrible neck ache. Each time I reduced the neck ache would return but my Rheumatologist wouldn't have any of it as my blood markers which we're originally very high did not show any increase. I am afraid the same will happen again?

[Riversnan]

Many thanks to all who have replied, with all your warnings I think I will tell the doctor I am not doing so well on 10 and ask if he could put me back up to 15 for a couple more weeks,. Trouble with Doc's is they don't like to be told.

Doberman lover, I am not in SE Cornwall but not far away, in South Hams.

Perhaps my Doc was with your surgery before.

[SheffieldJane]

I am also trying to reduce Prednisolone dosage from 20mg to 15mg and found an immediate return of (milder) symptoms. My GP prescribed 2.5mg tablets. I take 15 mg in the morning with breakfast, if I feel really bad I take 2.5mg with my evening meal. Sometimes I can do without this top up, but other times it seems to put me right. This option keeps me going psychologically too I think. I intend to continue this way as I taper the dose down further.