Wonderful Cure

[Mogberi]

Morning everyone. I am Gordon and I came on this site whilst trying to find out more about Polymyalgia Rhreumatica. I was diagnosed with this in early September after reporting extreme stiffness, aching legs and muscle weakness. Normally very fit and strong I suddenly found I had difficulty getting out of the bath for example and sleeping at night. Prednisolone (20mg per day) brought about a rapid recovery and now I am enjoying life immensely and wondering why I hadn't gone to the doctor much earlier. I joined this site to share my experience and guard against doing anything that would bring back this dreadful condition.

[SnazzyD]

Hello. What a brilliant start! Many find the relief like a new dawn after suffering for a while. The main thing you can do is approach the Pred reduction cautiously and not be tempted to rush off it. Also, many people get a boost from Pred so don’t be tempted to over do it if it is giving you wings. The Pred is keeping your inflammation at bay so it is not doing damage any more which is great. Now you need to find what dose keeps it at bay for your personal level of autoimmune activity which will still be there but will go into remission at some point. Keep up the good work!

[Mogberi in reply to SnazzyD]

Thanks. Only one small reduction so far (-2.5mg) but still feeling great nearly two months in.

[SnazzyD in reply to Mogberi]

Ah, so you started on 22.5mg or you started on 20mg and are now on 17.5mg? Have you been given a suggested plan for reduction?

[Mogberi in reply to SnazzyD]

No. I started on 15mg per day and then reduced to 12.5mg after one month. I think the plan is to reduce by 2.5mg each month.

[SnazzyD in reply to Mogberi]

Ah sorry, I was confused by the 20mg in your post. Normally after 10mg things need to slow down but cross that bridge when you get to it. Anyway, sit tight for some PMR gurus (I’ve just got GCA so far) to reply.

[Mogberi in reply to SnazzyD]

Sorry. 20mg was a typo.

[PMRpro Ambassador in reply to Mogberi]

You can edit your post if you want - click on the box that says More ond one option is edit.

[Hidden]

Good Morning Gordon,

Welcome to our Group, you’ll find lots of help, support & advice here.

I’m pleased to hear the Prednisolone has done its magic & has helped so much. Be mindful that it isn’t a ‘Cure’ rather than a dampening down of the symptoms, the condition is still running along in the background.

Please ask any questions you may have & there’s always someone around who’ll be happy to help.

Once again Welcome

Kind Regards

MrsN

[Mogberi in reply to Hidden]

Thanks

[PMRpro Ambassador]

So glad you have had a good start - much as I did with 15mg although some bursitis pain took a few months to go. It had been there a long time for me!

But please don't think you are "cured" - pred has no effect on the actual disease process, it only manages the inflammation created by the underlying autoimmune condition so that the symptoms are relieved. As long as you are on a high enough dose of pred that will continue, but if you overshoot the dose the tapering is aimed at the symptoms will return as the inflammation builds up again.

All the best for that taper - hopefully you will get to a low dose that still manages the symptoms.

[Mogberi]

Thanks for this

[SheffieldJane]

Well done for getting there and welcome. Stick with us, this is quite a journey.

[Mimma]

Totally understand- I was originally misdiagnosed for lupus then 3 months down the line rheumatologist said I had PMR and put on Pred. Almost instant relief and cheerful mood.

Now 7 months down the line and slowly tapering. Still feeling okay!

Good luck to you Mogberi and hope all goes smoothly for you too.

[yogabonnie]

What a lovely upbeat post!! Hope all your days will continue thusly. This is a great place to come for advice encouragement and all things PMR. I started at 15mg and I am down to 3mg after exactly 2 years this month. Trying to be very very patient which seems to be the lesson of this fool disease. My only advice is to have a dexa scan and NOT to take Bone Meds other than Calcium and D3 and K27 and start on that now. And do as much as you can..but not too much. !

[Mogberi in reply to yogabonnie]

Thank you so much.

[alangg]

Hi Gordon,

Your experience sounds very similar to mine - diagnosed at 59 after a long period of gradually feeling more and more stiff and sore and about to give up my freelance but quite physical job. 15mg of pred was a miracle cure and I kept working. That was December 2017.

I have reduced very slowly using Dorset Lady's DSNS taper plan; never more than 10% reduction and stay on new dose for 4 weeks. Buy a pill cutter and get 2.5mg and 1mg tablets to make it easier. I am now on 1mg/day and feel as though I could probably stop but just occasionally my shoulders tell me not to!

I think that this regime has kept flares at bay and given my adrenals plenty of time to restart.

Good luck!

[Mogberi in reply to alangg]

Thank you

[borednow]

Sound advice!

[Anglogreek]

Thanks for sharing Mogberi, I am seeing a rheumatologist this Friday and will hopefully get the diagnosis and start the pred straight away though going on holiday to Mexico next week and wondering if i should wait till I get back in case there are adverse reactions. In so much pain right now...

Ps nice shirt by the way 😊

[Mogberi in reply to Anglogreek]

Consult your doctor but I would stay start as soon as you can. You will have a happy holiday.

[LittleBetter123]

Definitely see your doctor before you go away. No point in suffering whilst you are on holiday. I didn't do that and so regret it.

I am only recently on prednisilone 20mg 2 wks ago and it has made a world of difference and I wish I had done it sooner. Only thing is it does make me a bit giddy and light headed if I have been talking quite a lot which I feel compelled to do on this med. Is this quite common or is it just me?

PS also like your shirt Mogberi

[Hidden in reply to LittleBetter123]

Hi littlebettrr, this is an old post. If you want more input then you may need to post the question. That said, yes we call it pred head. It's sort of like your brain is a few seconds behind reality. I used to forget my words and lose track of sentences. It does get better as you reduce. There is also brain fog from pmr to contend with too which has a similar effect. I had that for months before pred.

[LittleBetter123 in reply to Hidden]

Hi Scoopitup tnx for keeping me right. I haven't caught up with all there is to read from everyone so think I will delete all previous email notifications and try to keep abreast. Pretty new to this kind of forum but getting a lot of useful info whilst not boring my partner with all my symptoms. He does not have a sympathetic ear I am afraid. Hey ho!

[Hidden in reply to LittleBetter123]

There are a lot of new people at the moment who are probably going through the same thing. The forum can give you lots of info and support. I think it's not uncommon for Other Halves (OH) TO find it hard to relate to invisible illnesses... Especially when the pred can make you look really well with nice rosy cheeks!

[PMRpro Ambassador in reply to LittleBetter123]

You never will catch up - there are heading for 20,000 threads on the forum posted over a period of some 10 years!

[PMRpro Ambassador in reply to LittleBetter123]

Yes - as Scoops says, this is an old post and few will see you comment. Do please post as a new thread.