Newbie

[Q-owl]

My first post! Diagnosis of pmr 2 weeks ago. 15mg pred worked like magic after 6 months pain. After 6 days asked for a reduction as I wasn't sleeping and friends said I was manic. Dropped down to 10mg. Shoulder flared up but I stayed on 10mg and it's settled. Still having difficulty with sleep. Still rushing about. I plan to ask for some 1mg pills so I can drop down again asap. Any comments?

[Hidden]

Please be careful and patient as you reduce. It can take months for inflammation to be controlled and most likely the faster you go down the faster you will be back up. If you don't reduce the inflammation properly it can cause other more serious conditions that will make a bit of hyperactivity seem like child's play: heart problems...people have be dx with atrial fibrillation.....and certain cancers and most immediate us Giant cell arteritis often called temporal arthritis. This can cause loss of sight if not treated. Please be careful you are 2 weeks into treatment and reductions of 10% per four weeks but only if symptom free.

[DorsetLady PMRGCAuk volunteer]

Hi mowl,

Despite the manic feeling (which will subside when your body acclimatises to the amount of Pred in your system) you really need to be on your starting dose for longer than 2 weeks to allow the medication to get a good control of your built up inflammation.

If you don’t give it time, and start reducing too quickly you will end up in the same situation as you were pre diagnosis, and that’s not your aim.

Have a read of attached, which hopefully will help you understand your illness and how best to manage it

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Hi mowl Your “ friends” say you are manic - do you think you are? 10 mgs is a relatively low early dose. The sleep thing settles, I was prescribed 10 mgs of Amitriptylin to take an hour before bedtime and that seems to have worked for me. I am glad and surprised that your pain settled after a 5 mg drop - I would have been in serious trouble I think. PMR is a serious but finite autoimmune disease that will run its course over anything from 2 - 6 years, for some unlucky souls it is longer. The Prednisalone we take is simply to reduce the harmful inflammation while the disease runs its course. If you get the dose right and with a pinch of luck, the painful stiffness is controlled. However, you need to do your part by resting and pacing your activities. The consequences of not treating PMR can be serious, for instance GCA can develop. It is imperative that a reduction in dose is done gradually over a long period of time. You can access tapering programmes on this site. The 1 mg tablet idea is essential really for a steady taper. You need to discuss this rushing about compulsion with your doctors. Maybe you are unusually sensitive to steroids. Your PMR is not really behaving typically, I might be questioning the diagnosis with my GP.

I forgot to welcome you to the site in my haste to start nagging away - I do wish you well and do not want to see you suffer unnecessarily. I felt a bit high for about 6 weeks on 20 mgs when I was diagnosed in March 2016. Frankly, I could do with some of that now as I am so tired. Part of the high was finally getting a diagnosis and the wonderful liberation from the disabling pain and stiffness. I am still pain and stiffness free on 7 mgs but I am clearly still unwell.

[Q-owl in reply to SheffieldJane]

Yes, a lot of the euphoria is relief. I can live again. Even family and friends never understood how the pain was affecting my entire being.

[Soraya_PMR]

Welcome!

Drops in prednisolone can/will cause steroid withdrawal pains. These are almost indistinguishable from PMR pains, but tend to occur pretty soon after a reduction. Days 1,2,3 maybe.

A drop too far will resurrect the PMR itself, it hasn’t gone away, it’s there lurking, and dropping below a therapeutic dose brings back PMR pain. It takes a while for the PMR inflammation to rebuild as your reduced pred dose will deal with SOME of the inflammation, but eventually the PMR will overwhelm your system and the pain is back. This pain may reappear days 7,8,9? Or possibly even later if you’ve just squeaked under YOUR therapeutic dose, week 2,3?

So if you blithely reduce and don’t readjust, you’ll never know if the pain you experience is SW or PMR. If you manage reduction one and quickly do reduction two, you’ll not know if returning pains are SW from reduction two or a later flare from reduction one. Does that make sense? Leaving you not knowing if the previous dose was the correct one, or the one before the previous dose! (If you’ve followed this far you’ve not got brain fog!)

Picking up on SJane’s comment.... are you truly manic? Or have you got a touch of Thank-God-that-pain-has-gone-after-6-months-I can-get-on-with-my-life-again!

Drs called it steroid euphoria. I call it relief after months of pain/disability/depression. Why wouldn’t we be a bit euphoric after dragging ourselves through months of pain and indecision?

I recall being a bit ‘euphoric’ after 4 weeks at 20mg, but it wasn’t really euphoria, it was the realisation that at last my body did as it was told, it didn’t hurt, it didn’t tire, it was MY body back. But I couldn’t get to 15, I had to go via 17.5, 16, 15, and then a s-l-o-w trudge down to 11 atm. Fast reductions always come back to bite you on the @rse! Enjoy feeling well while you can!

[Q-owl in reply to Soraya_PMR]

Thank you, the joy of living without pain is euphoric!

[PMRpro Ambassador]

I also managed a drop from 15 to 10 mg after 2 weeks - and to 5mg a couple of weeks later. I hadn't been given the pred for PMR but what the rheumy thought was an inflammatory arthritis and so I could survive a trip to the USA - it was certainly better than previous long flights had been!! However, despite being fine at 5mg, within 6 hours of missing the first 5mg tablet I was in the same state as before pred - in bed and in tears. I never got things so well under control at under 10mg pred for another 4 years. I blame the speedy reduction and allowing the flare to get hold.

Now you are at 10mg you are at a dose that is very little more than the amount of corticosteroid your body makes naturally and which is essential to function properly. And at this level, once your body settles down and gets used to the pred you will be much better.

Don't hurry - PMR lasts at least 2 years for about a quarter of patients, a further half take pred for up to 6 years. 5% of us have PMR for life. Nothing you can do will shorten that - in the meantime the pred is there to let you live as well as possible.

[Hidden]

All of these posts are very Interesting. I started the 15 mg of Pred on my 60th birthday on 7th Feb, in the end, as it was only prescribed for 7days by private rheumy, who was not totally convinced I have it, as I had normal ESR and CRP, neg Rheumatoid factor. However, he said he would give me a trial. He thought it was more likely my osteoarthritis in my neck and lumbar spine and stenosis, were the cause of the stiffness and pain. my hips were in normal range, confirmed in xray last year.

Day 4 and my stiffness has eased a lot, my back pain and pelvic pain almost gone and I have been quite manic, but it's been great to have energy and feel like I'm actually living!

See NHS rheumy on 14th Feb, so hope he will keep me on it, and confirm that the PMR diagnosis, is more likely the cause of most of symptoms. So yes I have arthritis, but the stiffness was really extreme and pain has been chronic at times.

I think I will ask about having a DEXY Scan to check bone density at start, as a lot of people seem to have had this done. What do people think?

[PMRpro Ambassador in reply to Hidden]

If you are going to be on pred - yes you need one. And actually, I think everyone should have one - a lot of people have low bone density without ever knowing.

Pleased it has been a good birthday pressie!!

[Hidden]

Thank you. I will discuss the DEXA with NHS guy, hope is going to be OK. Will keep you updated.

[Katrinaroper]

Enjoy it while it lasts...get all the jobs you want done...it will go away soon enough