How can I get out of this mess?

[lisbonportugal]

Brief Facts; This July 2022, I was at 0 mg from 10 mg Prednisone after tapering for one and a half years. I was diagnosed by my GP 2 years ago. A severe flare came immediately, within 3 days of stopping. I am grateful to have found this website for support and wisdom. I have not been educated by my physician on PMR or what to expect when tapering. I began to go backwards.

I went from 0 to 5mg Prednisone, but still too much pain.. not able to function...

Then up to 10mg...still could barely walk...

Up again 3 weeks ago, at 15mg at this point... with all over milder pain but I can function.

The PMR came back in a more brutal form that the original. I don't know whether to go up to 20 and clear all the pain before I taper down. I feel very scared once again. I have been on 15mg for 3 weeks. I don't know what to do next. 💔 Alexandria

[piglette]

What a rotten thing to happen. It may be worth going up to 20mg to really hit the PMR on the head and put yourself in a position where you can think of reducing again.

[lisbonportugal in reply to piglette]

Dear Piglette, I would like to do that but how do I get back down?

[DorsetLady PMRGCAuk volunteer in reply to lisbonportugal]

If you go up to 20mg as suggested by piglette for 7 -10 days you may be able to drop back down to 15mg in one go and then start tapering more sensibly….

However, with what’s gone before it might be better to step down in 2 stages, firstly to 17.5mg for a week, then to15mg for 2-3weeks…

[lisbonportugal in reply to DorsetLady]

Dear Dorset Lady, Thank you for your friendship and sensitivity to PMR that dictates the amount of suffering in pain. I just can't hardly believe the amount of pain. Your royal advise is what I will try. 🥀🌹🌺🌻

[piglette in reply to lisbonportugal]

I think both DorsetLady and PMRPro have given a good explanation of what to do now. Good luck this time.

[PMRpro Ambassador]

All too common I fear - and you had been doing so well too. It is not uncommon for flares to be harder to control than the original start with pred.

You either need to be patient a bit longer or go to 20mg and see if that works better, I would say you need a specialist but that isn't always a plus anywhere and especially the US. What has your GP said this time?

DL has explained how to reduce from 20mg - you really have to behave as if you are back at the start. Were you really pain-free below 5mg? 10mg was a very low starting dose - and 18 months a very short tapering time so you will also have rushed through that last period, not staying at any dose long enough to be sure it is still enough.

[lisbonportugal in reply to PMRpro]

Dear Ambassador, You are asking the right questions. When I think about it, no, I was not pain free below 5mg. but it was inconstant during the day, and I was so hopeful that I went on. I remember now, my starting dose 2 years ago was 20mg. I got quickly down to 10 mg. and then started the slow taper for the next year.

I do not want to go to doctors again. They have not a clue about this caliber of pain. They take all the tests and more tests and neglect to talk about this disease in a practical way. They rushed me into tapering. I did not know that 18 months is a short taper. I am so amazed at your support. It takes a lot for me to write to you. I felt desperate with the pain yesterday and all this week thinking 15mg should be enough and trying to tolerate it.

[PMRpro Ambassador in reply to lisbonportugal]

We've all been there at some point - you ask anything you want.

[Whist in reply to lisbonportugal]

i slowly tapered going down half a mg each month the pain still there but once I was down to 0mg the pain was still there.But I stayed off it and had pain for 3 months using paracetamol to ease it a little I had been on prednisolone for 3 years with flares and the side effects of pred were moo

d swings and migraines sometimes daily.I have been off it for a year all the pmr symptoms gone but it has left me with depression and anxiety.I was told by G P that it can make you euphoric and the pharmacist that it can leave depression The depression can last years .So I got off it eventually but with a lot of pain Its a hard decision to make Good luck.

[Hosers2 in reply to lisbonportugal]

Sorry to hear your story. Waking up to PMR was a life changing experience for me.

I started Pred with 15mg . When I got down to 7mg after seven months on Prednisone, I had to switch to 200mg Hydroxychloroquine (because Pred was causing macular degeneration in one eye). I have been on HCQ now for 20 months, and have reduced down to 50mg. I haven’t experienced any flairs and the C-reactive protein level has remained constantly low. When you get this latest flair under control, you might try switching.

Oh, and when I switched, I was prescribed Methotrexate during the four month change from Pred to HCQ,

One other suggestion, but only given as a patient, not a doctor. I blame Simvastatin for my PMR. If you are on statins of any kind, you might consider stopping.

[lisbonportugal]

🌹🌻

[Louisa1840]

Dear Lisbon, I feel for you so much! It's just awful to experience the pain you are in & feel you are back at the start. You're not you know because you have a swag of experience under your belt.

I would be tempted to try the 20mg dose D.L suggested and then her taper down again. I am so sorry you don't feel supported by your doctor. My GP diagnosed me over 5 years ago as soon as I walked into her surgery because she had a friend with PMR. I was one of the lucky ones! BUT she has now GONE & I too feel unsupported- Bummer!!!

It's so good we have this wonderful site with the wealth of experience we share here.

Blessings!!

[remission]

I certainly understand the unbearable pain, in the beginning prior to being diagnosed I wasn’t sure I wanted to go on, couldn’t even get out of bed in my own or dress myself, the pain was crippling. I find the support here is great. the one thing I took away and believe in, is that we are all very different and there is no one way to taper, I found getting to the lowest dose, which was a faster taper than my doctor wanted worked best for me, so first year I did as my doctor suggested and took six months to go frm 20 to 10… tried weening off in one year and didn’t work, second time around, I tapered at my pace and got done to some pain but bareable and weened off slowly only for the last 2 mg….all in all took me shy of two years to do that, I still have aches, but doctor says it’s obvious it’s not PMR! But arthritis which often develops after PMR, so about once a week I take a naproxen, low dose, I wish you well in your journey. Stay strong and listen to your body.

[Frankie1066cat]

hi I have been on steroids for 20 months I have a condition called GCA blood vessels are inflamed I started on 30mg went down to 4mg but had a relapse at present on 15mg very frustrating but you have to carry on . unfortunately sometimes you have to go back by a few steps to move forward you can get tabs in 1mg 2.5mg it is not nice being on them as you can get sweats ,blurred vision,weight gain but hopefully long term you will get better check on Google or other sites there is a lot of information out there do you take supplements like calcium ,vitamin d you’re dr should have spoken to you about this I hope it helps.

[DorsetLady PMRGCAuk volunteer in reply to Frankie1066cat]

There’s a lot of information on this forum -from patients as well as medics - and most of it more realistic than many others sites.

On a personal view I would say a starting dose of 30mg is not high enough for GCA, and not recommend in the guidelines (lowest is usually 40mg when there are no sight issues) so I’m not surprised you flared.

[Kneeknit]

i am so sorry, but do not remember well. Wish the best!

[Messenger3]

When I have tapered, it has been very gradual, ie. reducing by 1 mg over the course of a month. I have never had any pain. I am trying hard to avoid a flare up.

[Davidj16]

my Rheumatologist insisted on me taking hydroxylcloroquine 400 mg. in hopes of tapering off of prednisone. I’ve just begun tapering recently as I am just completing my first year after diagnosis of pmr. He stated that I would flare back up ( it was proven when I first tried to tamper down a few months ago ) without the hydrox. I have reduced from 15 mg prednisone to 12 mg . In three months with very little evidence of pmr at this time. The goal is to get me completely off of prednisone and continue on with hydrox until complete remission….

[PMRpro Ambassador in reply to Davidj16]

I'd like to know his reasoning - there is little evidence it works for more than a few patients with PMR

[lisbonportugal in reply to PMRpro]

This is Alexandria at lisbonportugal. I went up now from 15 to 20mg yesterday. At 15mg I was still in too much pain. Is this What is hydox 400mg.? Is it worth trying?

[PMRpro Ambassador in reply to lisbonportugal]

It is another drug used in rheumatology which some rheumies seem to think helps in PMR as a steroid sparer, some claim it replaces pred. There is one person on the forum who is doing well on hydroxychloroquine but the one study on it is very poor quality. It is rarely used in PMR.

[Palme]

I had a similar case. I found prednisonepharmacist.com. This Dr. Megan experienced the same we are and gave a lot of help. I had many of the side effects from Prednisone. I found that moving slowly every half hour or an hour was a must. Going off by tapering was awful. I was told this is why we are going slowly and all these symptoms are just part of withdrawal. However slow is best. I went one mg a month or even slower. Surely there must be a Program for help with this. Look on this site under tapering. Prayer and talking to God was my strength. I did just have a flare up after 6 months off and was given an 80 mg shot of Prednisone so I did not have to take the pill. That worked. Some helps: heating blanket, slow movement, pain management programs, pain patches, nature, eat whatever you can, just stop and rest, saying “Help Lord.” PMR does have an ending or subsiding; not like the other rheumatic diseases. I am so much better and encourage you to have hope. Nonna

[MiloCollie]

Oh bless you pain is awful in any form. Great advice from the experts on here which hopefully make you better but go slowly this time. Take care ❤️