Flare after zero pred for 6 months?: Hi Everyone... - PMRGCAuk

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Flare after zero pred for 6 months?

PJPS
PJPS

Hi Everyone, feeling confused as i have been off Preds since Oct 2017 after tapering very slowly. Have generally been doing ok with minor occasional aches. My neck has felt stiff for a while now, had physio which didn't help, x-Ray shows age related wear & tear. The top of my right arm has been quite painful at times since December, my left arm not so bad. Been to my GP twice in the last two months, first time he put me back on 2mg of pred for a week which offered a small amount of relief. Second visit two weeks ago I was given 15mg of codeine & paracetamol 4 times per day & volterol (no longer taking), this helped slightly for a few days.

Pain is worse at night, not sleeping well & worried as GP does not want me to take the preds again. I recently took a few days off, have an appointment this Friday as I am not coping too well, not sure what to do or if there's any other pain relief?

39 Replies
oldestnewest

How long did you have PMR for?

It hasn’t gone has it? There is no point in leaving the inflammation untreated, it will just worsen. As you probably know this can cause problems like GCA or Aortic Stenosis. It is disappointing for you and clearly your doctor too. A stitch in time saves nine though. You need your Pred dose for a bit longer in my opinion. No other painkiller will have much impact. Recent research has shown that PMR doses of Prednisalone are not as harmful as was once feared.

PJPS
PJPS in reply to SheffieldJane

Thank you for taking the time to reply. I have a feeling it has not gone which is why I'm worried if it goes untreated. Will post an update after my visit to the GP this Friday.

Sorry to hear that you are having this trouble. It is something we all fear, no matter where we are in our PMR journeys.

Have your inflammatory markers varied with the ups and downs of you PMR? Have your ESR and CRP been tested recently?

I have had pain in my upper arm, pretty bad from time to time. Myofascial physiotherapy has really helped. Last visit my osteopath actually used old fashioned cupping. They left bruises, but the pain was gone a few days later and hasn't returned.

Figuring out if I am having a flare or dealing with some of the muscular/skeletal damage from PMR and age, is very difficult for me. But if I don't feel sick, I'm not stiff in the mornings, if I can raise my arms over my head and touch my toes and my markers haven't moved, I usually find seeking physical therapy or osteopathy to help me with whatever is hurting is often helpful and sets my mind at ease about whether or not it is a full on flare.

But only you know what this pain is telling you. If you feel that this is a flare, then I assume that only Pred will get it under control.

Good luck with your GP. Please do let us know how things work out for you.

PJPS
PJPS in reply to Hindags

Thank you for taking the time to reply. My markers have not been too bad, I last had them checked December 2017 so I will ask to have a blood test when I see my GP on Friday. I will post an update after my GP visit.

wise words Hindags, to listen to the pain and what it is telling you. Be aware of the danger of pred, for me cataract operations were necessary after 15 months pred. All went well, no complications, but it is something one wants to avoid. ( two years ago my vision was okay) And as you say myofascial therapie can work well. PJPS good luck and wish your gp listens well on friday.

PJPS
PJPS in reply to Zofitmogelijk

Thanks for your reply, I will post an update after my visit to the GP.

Go back...you have to live with this....not her

PJPS
PJPS in reply to Katrinaroper

Thank you for taking the time to reply. Yes, you are right...it's me who is living with it, I am determined to get my GP to listen to my concerns.

How worrying for you. Losing sleep will add to your health probs. I know you will get sound med advice from others. However, I think I would start to be a nuisance at the doctors now!

PJPS
PJPS in reply to Pongo13

Thank you for taking the time to reply. I am determined to ensure my GP listens to my concerns on Friday as I feel quite fragile right now.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi PJPS,

As others have said there is no other painkiller that works on PMR, only Pred.

It does sound as if it could be PMR resurfacing especially as you were only diagnosed in December 2015, so a few weeks on a fairly small dose, say 5mg might be enough to catch it before it gets any worse.

Is your GP doing any other tests to rule out other things?

I would be inclined to go for a longer test of Pred at a higher dose than previously, if your GP is worried about the Pred show him this -

practicalpainmanagement.com...

PJPS
PJPS in reply to DorsetLady

Thank you for taking the time to reply and for the link to the information which I have printed off to take with me on Friday. At the moment no other tests are being done, I am going to request a blood test as I have not had one since December 2017. I think the same as you about taking the preds for a short period before it gets any worse, especially as I have been doing so well up to now.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PJPS

Please do! Good luck.

Exactly the same happened to me, but I had kept a stash of Pred when I got to zero. So, I simply put myself back on 5mgs which relieved the symptoms and gradually reduced over six months. When I told my GP what I'd done, he was quite happy and prescribed the 1mg tablets I needed to finish tapering. Now been Pred-free for a year and absolutely fine. Hope this helps.

Great encouraging news for me read of anyone off the pred...1yr for you...only 2 weeks for me..🤞

I know I was lucky. Hope you are too!

👍

Hidden
Hidden in reply to Lyn_seaside

Aaah. Another pred squirrel I have tucked that info away for future reference.

maria40
maria40 in reply to Hidden

I'm running out of shelves for my stash!

Hidden
Hidden in reply to maria40

😂😂😂I use a vanity case. Or two. Let's just say they are on repeat.

PMRpro
PMRproAmbassador in reply to Hidden

Watch the expiry dates!!!!!

Hidden
Hidden in reply to PMRpro

I write numbers in a Sharpie pen on the boxes and rotate them. New ones in the case and next pack of old ones out. It's a colour and number scheme. In red up to 8 (no idea why 8);at the moment going on to blue 1 to 8 next purple then green etc. Complicated but I try and concentrate and stretch myself 😂😂😂🤣😜

Hidden
Hidden in reply to Hidden

😂😂brilliant

Until we find cause and then cure, both PMR&GCA (and many other auto immune illnesses go into remission and your GP should recognise this fact. It is not fake news.

PJPS
PJPS in reply to jinasc

Thank you for taking the time to reply. I hope to get my concerns across on Friday.

Sorry your having a rough patch at moment after doing so well to come of Pred last Oct. With pain relief I use Aloe Vera cold gel for when I get pain in my right shoulder which works instantly for me. Bought on Amazon. Hoping your doctor listens to you on Friday and understands.

PJPS
PJPS in reply to optermist

Thank you for replying and for letting me know about the Aloe Vera.

Thank you for taking the time to reply. I saw a different GP a couple of weeks ago as my usual one was not available, she was not too keen to say go back on preds. I will be seeing my usual GP on Friday so hopefully I will get somewhere. Your post has given me hope.

As far as l know pips,the only medication for PMR is prednisolone and as the other posts have said it could be that the PMR is flaring up again.l think that codeine can have unpleasant side effects and l hope that your GP will help you as things may get worse if it is not dealt with quickly.

PJPS
PJPS in reply to Grants148

Thanks for your reply, I agree about the codeine.

All the best PJPS ,please let us know how you get on.

PJPS
PJPS in reply to Grants148

Thanks, I will update after I've been to my GP on Friday.

PMRpro
PMRproAmbassador

You say pain is worse at night - when at night?

PJPS
PJPS in reply to PMRpro

Hi, it's during the night when I'm trying to sleep as I get pain at the back of my head on one side more than the other. I use to sleep on my side but it's more comfortable on my back because the top of my arms are also painful.

PMRpro
PMRproAmbassador in reply to PJPS

Have you told your rheumy?

PJPS
PJPS in reply to PMRpro

I've never seen a rheumy for PMR, I just see my doctor.

Saw my usual GP today who advise me to start a low dose of Pred 4mg & slowly reduce over the next few weeks/ months. After reading reply’s to this, I’m quite happy to go back on Pred as I look forward to reducing the pain again. I would be lost without this wonderful forum and thank everyone.

Hi PJPS, I too had a flare after reducing to 0 Pred. I've had PMR since June 2014 so almost 4 years now. Pretty disappointed when it returned while travelling overseas last month. I always take Pred with me when travelling, my GP is excellent and prescribes a new dose if I'm going away. Pain was pretty classic so I reluctantly went to 3mg and then 5mg which worked. Now tapering again, very slowly....it can be frustrating and I have read PMR can last up to 5-6 years. Also read that flares after getting to 0 Pred can be quite common too. My cousin had it for 5 years, went into remission and it never returned. Here's hoping.!

All the very best to you and hang in there. Keeping it under control is important so do take care.

Hi Jennifergregory2, thank you so much for your reply and sharing your experience of a flare. It certainly is frustrating, however, just like you I was happy to go back on a low dose of 4mg which seems to be working. I feel much better than I did last week. I will also slowly reduce the Pred and not rush. That's good news to hear about your cousin. Best wishes to you.

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