Faster relief?

[yogabonnie]

When this started someone told me that it could be over in six months. I see now that THAT is more likely years.... but just curious.. has anyone ever gotten rid of PMR in 6 months or less? Any spontaneous remission or cure? As I am tapering...now at 17.5 I don't feel anything coming down 2.5mg from 20..... and secretly (ridiculously) I am thinking..hmmm maybe it's gone. ... I WILL not test the theory but just wondering... Thanks!

[SheffieldJane]

Hi Yogabonnie I have had that sensation at around 10 mgs when all the planets were aligned, the meds were right, the work life balance was good. I even posted about it and the veterans said “hmmm”. Alas, I’ll never find that recipe again. I tapered, it changed I lost the plot. Patience. I think it’s unlikely, sadly. Hang on to the well feeling though! Revel in it.

[yogabonnie in reply to SheffieldJane]

ha. right after I wrote that post.. I started in with an Aura migraine. flashing lights going like mad..but it will only last 15 min. This is the 2nd in as many weeks? prednisone related??

[SheffieldJane in reply to yogabonnie]

That will learn you! I think it is Pred related but keep careful note of it.

[yogabonnie in reply to SheffieldJane]

zounds.. it went away and I went off to teach a yoga class at the high school and it came again!!! that is a first. so..what did I do.? I came home and ate carbs and sugar. (I am such a dunce) and watched THE CROWN on TV. (season 2 has just come to our Netflix!) I Feel better this morning except for sugar bloat. BACK on track.

[SheffieldJane in reply to yogabonnie]

My kind of evening it has to be said, carbs, sugar and the Crown perfect! 😭

[Amkoffee in reply to yogabonnie]

The aura migraine or what we call an optical migraine can happen regardless of prednisone. I know I had one way before I ever started prednisone. And I don't believe it's on the list of symptoms although we all know that that the list is not a complete list of symptoms.

[Hirwaen in reply to yogabonnie]

Not sure it's Pred related, I've had them for the past 10years and they havent got any worse since PMR diagnosis last March. I wish your hope of an early end to this pesky disease could come true but I think not.!!!😬

[Hidden]

The first month (june/july 16) I felt good compared to previously. Once I hit 12mg from 15mg in two months I started feeling less well. By 8mg in 5 months I was worse than at dx and markers higher than at diagnosis. I can't say for certain but I believe a slower reduction might have suited more. It's worth discussing the 10% rule of tapering with Dr and keep fingers crossed you might be a very lucky person🌻

[yogabonnie]

Yes. I am not going to risk it. Going to do 10% from here on out. and take it slowly. After I get to 15 I am not going down but 10% every 2 weeks to a month. and STOPPING if I need to. For example Family (with little boy grandsons. toddler and boy.. arriving for 3 weeks on Sat. from Sweden ...to live in house...altogether! NOT tapering. !!!!

[Hidden in reply to yogabonnie]

Sounds sensible. I am sticking at 10mg until post Xmas. At least 10 people...3 under 11yrs and 3 dogs including a 6 month puppy and my hound that likes to bully her way up the dog pack. Looking forward to kids at Xmas morning and my sister has kindly put me in my own small room so I can rest as required. It was lovely to get the text telling me that.

[piglette]

I think if anyone has got over PMR in six months they probably did not have PMR! Although some doctors will give you the impression it is just a short term illness.

[PMRpro Ambassador]

If it went in 6 months then it wasn't the PMR we talk about here. PMR is just the name given to the set of symptoms which can be due to various underlying causes, some more unpleasant than others. There is some thought there may be a reactive version - like there is a reactive arthritis which is due to an infection and when the infection is gone, so is the arthritis. It is always a spontaneous remission - nothing available that will achieve one yet...

If it has gone into remission you won't have any problems with flares while reducing - you will reduce steadily and everything will be fine. Be warned - when I started with pred for PMR. after over 5 years of symptoms, I took 15mg at 10.15am and at 4pm could have danced a hornpipe. I really did feel WELL.

[DorsetLady PMRGCAuk volunteer]

Hi yogabonnie,

As others have said - very unlikely! Even if they had, I doubt it would be PMR as we know it, nor would they be on this forum.

I had GCA not PMR which although semi related do seem to be quite different in some instances. I didn’t have any problems in reducing apart from a couple of days of steroid withdrawal niggles after each taper when on doses above 7mg (which is when I started a slow taper for that reason mainly).

I didn’t get any flares throughout, although my markers did rise and GP increased my Pred (in hindsight that was caused by stress not GCA).

As I’ve said before I put that down to the fact that the very high dose I started on mopped up all the existing inflammation (and there was plenty of that after 18 months) and obviously the continuing large doses then kept everything under control. The only downside was the side effects of the drug.

I know the doctors don’t want us on too much Pred and neither do we ourselves, but I’m a firm believer that in respect of GCA (in the majority of cases and I know there are exceptions) if you are given/take enough Pred throughout you will not flare.

However, in respect of PMR I don’t think it’s quite so easy. Maybe because enough Pred is not prescribed early days or the nature of the illness.

It took me 4&half years to get from 80mg to zero, and I know during the last six months of that my GCA had gone into remission, but I still tapered very slowly during that time.

[Dorey]

I think mine was about a year. In remission last 18 mos-2 yrs

[SusanEleven]

My mother’s neighbor (male) was on steroids less than a year. He was diagnosed with PMR and refused to take prednisone for the first few months. He relented after realizing he couldn’t function. He had a quick response and smooth monthly taper. I told him he was the exception, not the rule.

[PMRpro Ambassador in reply to SusanEleven]

Yes - but in total that was over a year of PMR - and he was male. It really is true that men respond to both PMR and pred very differently - Sarah Mackie said it was true and the fact had really surprised her.

[Rugger]

A man attended our meet-up in Ilkley yesterday and told us his experience of PMR, which was totally alien to the rest of us. He described the classical symptoms that we all had at diagnosis and his GP diagnosed PMR and prescribed pred. He went home and discussed with his wife a change of diet to exclude dairy, gluten and processed foods and NOT take the pred. About 6 months later he had recovered! He has also lost some weight, but a bit more to lose.

Fortunate man - he didn't seem to have our kind of PMR!

[piglette in reply to Rugger]

He could have been vit D deficient which can have similar symptoms.

[Rugger in reply to piglette]

If we see him again, I'll ask if he had his blood checked and/or was prescribed vitamin D. I think we were all bowled over by his story and I, for one, wasn't thinking laterally!

[piglette in reply to Rugger]

I read somewhere that only about 60% of diagnoses of PMR are actually correct. I gave up gluten and simple carbs on diagnosis (I heard it stopped the moon face). Unfortunately I did not get over PMR in six months!!

[Rugger in reply to piglette]

I'm really careful about diet (retired NHS dietitian!) but I'm now 19 months into PMR and on 7mg, tapering at 0.5mg/month, so a while to go yet!

We left him in no doubt as to how our PMR and GCA is affecting us! I think he must have gone away feeling very lucky. We'll never know about the reliability of his diagnosis.....

[piglette in reply to Rugger]

When I started steroids I became a nutrition nerd and bored all my friends silly about what I was eating. The pred made me starving hungry so I did eat. I probably did not have a clue what I was talking about.