Newly diagnosed with Polymyalgia Rheumatica and more recently GCA

[KrisAnne51]

Hi everyone, I’m new here and have been reading lots of posts as I am in lots of pain and feeling pretty low. I have had Fibromyalgia since 2001 and have now been hit with another myalgia. Don’t know what I did to deserve this. Anyway, I am in my late 60s, usually pretty stoic and just get on with life, but this has hit pretty hard. Last Christmas I had Trochanter Bursitis which took about 4 months to settle which I think may have been the start of this. Then severe headaches, pain (different to my fibromyalgia pain this time) and various other symptoms which my Doctor was suspicious about and immediately sent me off to both a Rheumatologist and Neurologist who quickly came to the same conclusion as she did: Polymyalgia Rheumatica. She is a wonderful GP and very thorough. Started out on 30mg for PMR then gradually tapered down to 15mg, then started down to 12mg when GCA symptoms appeared. Into hospital, Prednisolone up to 50mg, and now after 2 weeks am having a massive pain flare up. My Rheumatologist is holidays until September but I have my GP appoint Monday. I am counting on her to help me as I am having great difficulty keeping the pain under control. I also take Endep for my Fibromyalgia and that doesn’t seem to help. Sorry for the long post. I have been reading about the very slow tapering regime and perhaps that should be my aim. I am pleased I found your great site with terrific information.

[HeronNS]

So sorry to hear this. There will be people along who've had GCA experience who can give you advice about your current situation. I do know that GCA may need a higher dose than you were given, unfortunately, to get it completely under control. The very high dose doesn't last long, but the tapering still has to be done carefully although the steps can be relatively large from the highest doses. Once you are down to usual PMR dose (say about 20, certainly by 10 if you've been okay till then) you would need to use a very slow taper, like the famous Dead Slow Nearly Stop system. Basic advice is not to taper until symptoms are completely under control and have been stable for several weeks. Then 10% at a time, especially once you're in the 20 mg range. Generally speaking people taper a dose about once a month but we are all different and pacing has to be based very much on symptoms and your own reaction to each taper, some of us are more sensitive than others and have to go even slower. But as PMRpro says, "It isn't slow if it works". Sounds like you have a sensible doctor.

[KrisAnne51 in reply to HeronNS]

Thank you HeronNS. Have been reading and responding to all the replies I have received and am finding a little spark of courage has been lit deep inside with each response I write. I have just downloaded Kate Gilbert’s book, so that will be my homework this afternoon. Best Regards....

[Yellowbluebell]

Welcome to the forum. Your doctor does seem to on the ball which is great. I dont have GCA but I am sure dorsetlady will be along in a bit and she will be able to give you some advice. There a number of taper regimes about on the forum but you are not at the stage to worry about tapering as no one should taper until the symptoms are under control.

Feel free to ask any. questions you may have as there is usually one of us around to help whatever the time. Good luck.YBB

[DorsetLady PMRGCAuk volunteer]

Hi, welcome and sorry to hear about your problems.

As a post GCA patient I would say you don’t need to start thinking about the DSNS tapering plan yet.

First and foremost you need to get your GCA symptoms under control - and it sounds as if 50mg may unfortunately not be enough. It is was, 2 weeks in you should be feeling better, not worse.

Is there any way you can speak to GP surgery this afternoon? If not then NHS helpline - as I think you need to up your dose. You don’t want things deteriorating over the weekend or it may mean a trip to A&E - you cannot mess about with GCA.

In the meanwhile have a look at this-

healthunlocked.com/pmrgcauk...

[KrisAnne51 in reply to DorsetLady]

Thank you DorsetLady. I added another 25mg to my 50mg (Dr advised by phone) and put myself to bed. The fatigue and pain is tough so hopefully it will subside overnight. If not, I will head off to A&E in the morning. Thanks for your support.

[DorsetLady PMRGCAuk volunteer in reply to KrisAnne51]

Good, that should be enough.

Keeps us informed please.

[Hidden]

If there is one thing I have learnt since being here, it's the phenomenal support and wealth of knowledge each member brings to the table. It's been just over 6 weeks since my own diagnosis and like you I was in the "down in the dumps" phase. I actually cried for two days and then had the sense to recognise it as the proverbial "low".

This is your journey. You will not "go through" pain....you will "grow through" it.

I hope you are over the worst and that things will pick up soon. If not, and you need added words of support; you know where to come!

[KrisAnne51 in reply to Hidden]

Hi Stiffjoints, so you are a newly diagnosed member too. As mentioned in my post I have had Fibromyalgia for 18 years which is controllable, but this PMR & GCA came out of the blue and, like you, has rocked my world. The pain and fatigue is debilitating and is now affecting my everyday life. I would normally walk every day and bike ride on weekends. But I am going to be positive that I will regain some of the old me back in due course with the help and support of our lovely group members. Stay positive.

[suzy1959]

Just remember you didn’t do anything to deserve this!

[KrisAnne51 in reply to suzy1959]

Thanks for your support suzy1959.

[Christophene-Returns]

If you are in a bad flare, tapering should not be on your mind. If anything, slightly raising your dose might be a better option.

There is no cure for PMR; it has to burn itself out which can take years. The prednisone is to control your symptoms, inflammation and pain.

Based on what you said, tapering is a very long run goal; not now for you. Best regards..

[KrisAnne51 in reply to Christophene-Returns]

Thank you. Will work with my Rheumatologist and GP until I am well.