Finally reached zero preds!

[Leepeelee]

I was diagnosed with pmr almost 2 years ago. Started on 20mg preds, I’ve been tapering ever since. I am almost 2 weeks into my final taper (11 days) to be precise. From 1mg - 0 . The first week was awful, I had really bad withdrawal pains and felt really rough. This is the usual pattern when ever I’ve tapered previously but this time, instead of the aches pains receding, they seem to be staying put.

I have had a few flare ups throughout my tapering periods but this doesn’t feel the same. It feels more like DOMS . It’s mainly in both arms but it is also in my legs, behind both knees.

Does anyone know if this is normal when going from 1mg preds to Zero! Quite frustrating, I was looking forward to feeling normal again

[DorsetLady PMRGCAuk volunteer]

Once you on very low doses of Pred, or nil, the normal aches and pains of life do have a habit of coming back with a vengeance. Plus it can take anything up to a year for your body to be fully back to normal.

But are you 100%sure it’s not PMR?…have you taken normal painkillers to see if they help or tried warmth?

Just keep an open mind about it, and if necessary maybe take 1mg of Pred if nothing else helps..,and then a slow taper and down to 0.5mg then zero.

Two years may be bandied about for the length of PMR, but not for everyone. Hope you’re right and it’s gone into remission, but just be certain.

[Leepeelee in reply to DorsetLady]

Hi DorsetLadyI tried some painkillers last night, I think the pains did seem to reduce slightly but I was laying still in bed. It seems more painful when moving around. I had a blood test on Friday so I’m waiting to see what the results show.

I’ll give it another week or so before I go back on the preds 🥴

[DorsetLady PMRGCAuk volunteer in reply to Leepeelee]

Ok, please keep us informed how you get on.,

[Truckfoot in reply to Leepeelee]

I have been off prednisone for four months and one Aleeve will eliminate all my aches and pains and life is normal, I take that about every second day

[Kumanzere]

18 months prednisolone tapering essentially cured me. At the end of the therapy I complained that I thought some symptons were starting to return. "No", said the specialist, "You're cured. What you are feeling is being a little older than you used to be". He was right. 8 years later, no PMR to speak of.

[DorsetLady PMRGCAuk volunteer in reply to Kumanzere]

Lucky you - but it not cured, it goes into remission.

[SheffieldJane]

Fingers crossed for you Leepeelee, don’t fall at the final fence. 1 mg is harmless in the great scheme of things. Don’t push it.

[squashie]

I've just been there. I had a real hiccup going down from 2 to 1.5, so went glacially slowly once I got back down again. I didn't even try 1 to 0 in one go, but went to .5 for a month first. Now at zero for over 4 weeks - some odd aches and pains, but mainly from being 3 years older than when I started. The pred withdrawal was a bit different but (touch wood) seems to have now dissipated.

[Coffeebeans]

I've no idea Lee but since we were diagnosed at the same time I'm impressed. I'm still on 8mg!

I hope things settle down and this is the end of this for you but if not, remember you have done so well and don't ruin it now for the sake of a mg. Lecture over 😂.

Fingers crossed 🤞

[paintpots]

I think the last step is the hardest. I got down to 1/2 mg for 4 weeks when my doctor suggested I go to alternate days of no pred. I lasted just 4 days before I seized up. A couple of flares later I am back on 5mg and will reduce very slowly now. I needed my reductions to be a lot slower, if had done it slower I probably would not have have all the flares I have had. The problem is that my doctor has left it up to me generally how I reduce. Her attitude has been, do what you think is good for you but how I am to know what is the right thing? This forum has been such a help in understanding the PMR and how to combat it.

[dancersize2 in reply to paintpots]

I was comfortable on 1/2mg but flared when I tried to taper to zero so now on 1/4mg and tapering again verrry slowly.

[PMRpro Ambassador]

I wouldn't be surprised if the PMR is still there and 1mg is plenty to keep the last vestige under wraps. This very last stage may take months to go through and a reduction from 1mg to zero is, relatively speaking, massive. Lots of people have had simlar experiences, even getting to zero altogether but then the symptoms creep back after a few months depending on the amount of residual disease activity.

Trying to force it will just result in a flare up of symptoms and a return to as much as 5mg to manage it - 1mg is a negligible dose and you soon lose all the advantage of that perceived beneficial speedier reduction. Prof Dasgupta told us 18 months ago he often keeps patients on 2 to 3mg as it reduces the risk of relapses. If 1mg is enough - that really doesn't have any adverse effects - don't try to hurry anything up. It isn't worth it.

[Harrywogan]

Leepeelee. How did you manage it , I seem to be stuck at 4mg and reducing 1/2 my every 8 weeks so on 4mg daily.

[PMRpro Ambassador in reply to Harrywogan]

You only "manage" it when the disease activity underlying the PMR has stopped - different time scale for everyone.

[Lyn_seaside]

Just to add an optimistic post. My symptoms started in Nov 2014. Diagnosed in March 2015, got down to zero pred in June 2016, but went back on a small dose from Nov 2016 to May 2017. Since then, been on zero pred and absolutely no symptoms. Super-long walks, sea swimming, dancing.... 65, feel 35, and life completely back to normal. Does happen, though I take the point it could recur. Best wishes to all.

[AshPen9]

I have friend who has been on 1mg for several years. He tried going down to zero but had problems so just stuck at 1mg. I don't think he tried too hard. Now that I know a little bit about it myself, I suggested the DSNS taper to him and he had obviously never tried going down by 0.5mg. My point though, is that 1mg has become normal to him and isn't causing him any problems at all.

[Lafontainepam1]

I have been on prednisone for 10 years, down below 10 mg most of it. But after extensive back surgery two years ago, went up to 15mg. Now have been reducing from 10 since September. Today started 7 mg. My New Rumy said if I can get to 5 mgs he had no problem me being on it forever. I am 73.

[Raven1955 in reply to Lafontainepam1]

I had a similar comment from one of the rheumys that I've seen. He said that once I got below 4 or 5 mg he wouldn't have a problem if I was at that level the rest of my life. Am currently at 4.5 heading towards 4 mg. If I can get "locked" on 4 mg I'll be taking my sweet time going any lower - if it takes years or forever, so be it. Just celebrated 5 years on pred and thankful for it. Good luck!

[Lafontainepam1 in reply to Raven1955]

Thank you for your answer! I am hopping I will feel more like myself on a lower dose. I became a prednisone diabetic also. So hopefully that will go away🙏

[Raven1955 in reply to Lafontainepam1]

After a couple years on prednisone, my blood readings showed me at the "pre-diabetic" level. Most likely from the prednisone, as this had never been an issue for me before. My rheumy prescribed Metformin for me, as he said sometimes he's had success with PMR patients taking it and getting back down below the pre-diabetic level again. The Metformin works very well for me. Might be worth exploring with your GP. Of course, every person is different but I thought I'd mention it at least.

[Lafontainepam1 in reply to Raven1955]

She put me on Jardiance and Januvia, hopefully I can eventually go off them🙏💕

[Nextoneplease in reply to Raven1955]

Oh if I knew I could stick at 3 or 4 if needed, that would be such a psychological relief!! And I’d still try to get off it eventually 😊

Currently at 12.5 after feeling terrible dropping to 11. Going to wait for a less stressful time and then try again, slower this time….

My GP doesn’t seem to believe much in phone conversations, but after I sent her an eConsult, she texted me this morning to say we may have to increase my dose if I continue to have pain and fatigue at 11 …..I’ll have to tell her I’ve already done it 🤔

Good luck everyone x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Well leave it a day or two and just say you took her at her word…and did it!

[Nextoneplease in reply to DorsetLady]

Thanks DL - I think that’s exactly what I’ll do 😊x

[Raven1955 in reply to Nextoneplease]

Very good idea to watch the stress levels when reducing. I know that was the trigger that started me down this road originally. Reducing slowly with effective doses is what matters. I was down to 4 mg 2 years ago before I was clipped by a nasty flare. Between stress and reducing too quickly it took me this long to get almost down to 4 again. I can be taught - through pain..lol. The lowest effective dose is what matters (aka the PMRpro mantra). I track my reduction schedule but tracking how I'm feeling is just as important.

Good for you for adjusting your dose as you felt you needed to. You know what's effective.......or not.

I had a deuce of a time getting below 10 mg until I slowed my reduction wayyyyyy down. I notice that around 10 mg seems to be a speed bump that many here run into.

Best wishes to you!

[Nextoneplease in reply to Raven1955]

Thank you Raven 😊 I love the PMRpro mantra!

I’m sorry you’ve had such a difficult time and I agree that stress is a major trigger (at least for me).

I’d hoped to get off pred in 2 years from March 2021 but am already revising my expectations to be more realistic!

Thank you again and all the best xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

I think you have to accept, it takes as long as it takes - then you aren’t continually disappointed.

For some, 2 years is achievable, but for an awful lot , it’s not!

Trouble is, so much information “out there ” quotes 2 years as the magic timescale - and when many doctors also believe that, it makes life difficult for the patients.

[Nextoneplease in reply to DorsetLady]

This is so very true DL 😊

I don’t think some doctors have any idea of the kind of pressure they put on us by estimating a two year treatment!

I know objectively that it takes as long as it takes….but the resulting emotional turmoil can of course be different x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Very true…on both counts.

[paintpots in reply to DorsetLady]

When I was diagnosed 18 months ago my doctor told me I might be on the steroids for a year! If only!. I am now looking at at least another 18 months to get to zero on the DSNS reduction plan. I am not sure that many doctors have a lot of knowledge in regard to pmr and prednisolone reduction.

[DorsetLady PMRGCAuk volunteer in reply to paintpots]

No a lot don’t seem to, and with Pred they are more used to prescribing it short term for other illnesses, such as asthma and COPD flare ups.

Have to say the Ophthamologist that diagnosed my GCA was more realistic when talking about Pred and how long I’d be on it….

“At least 2 years, probably longer, and maybe a small dose forever”

So no false hopes from me, and 4 & half years…so happy with that!

[TooSore in reply to Raven1955]

My rheumy would almost roll his eyes at me if he wanted me to reduce in September and I'd say "Not when school starts!" I tried it more than once- too much stress physically and mentally. The body needs time to readjust to the workload first. Stress is tougher on us than the average person.