PMR 3.5 years & holding

[mo3go7]

Again, I value this site soooo much!! I don't post much-it's been a year! But I read every single day & it helps me to have your support/advice. Last November I successfully reduced my prednisone using DSNS method from 5mg to 4mg. Yay! I waited until April to try again. Fail! Felt good as I reduced, but once I was at 3mg for a full week woke one morning with pain in one hip & down my leg. Went back to 4mg & it was magically gone! When I saw my rheumatologist in June for my 6 month check she said I did the right thing, and just sit at 4mg, but I could try again if I wanted in a few months as only our body can tell us how much we need to control the inflammation. She also had never heard of DSNS method or this community & was very interested. She wrote down the info to read up on it as her advised method of reduction was different/faster. So, I just tried DSNS again & the exact same thing happened. I have to say the pain was much worse than ever & woke me in the morning. I guess my body just needs 4mg. I think I will try reducing to 3.5 next time, but, cutting those tiny 1mg w/my pill cutter are going to be a challenge. This has left me a little down as I really hoped after over 3 years I could keep reducing & someday soon be done with PMR. I am trying to be thankful the prednisone does continue to work for me & just get on with life as I know there are people out there a lot worse off than me. Just needed to vent to people who understand. Speaking of that, I just had my routine DEXA scan my rheumy ordered & when the tech asked what meds I take she was SHOCKED I had been on prednisone for over 3 years! Like I said, this site makes me feel like people understand. Thanks for being here.

[Hidden]

Hi mo4go7, I am glad your doc seems to be allowing you to self manage. You may have hit your level. I was dx in June 2016 and have just had to go back to 7mg after a year at 6mg so I understand how frustrating this PMR can sometimes. It's a roller-coaster with patches of feeling OK. You could try the 0.5mg drop as even half a mg can make a massive difference, especially when you get down to under 5mg. I think you have done well to get where you are and if I get there I will happily stay there. Of course club zero has its merits! 👍😉

A couple of weeks ago HeronNS posted a paper on how low dose pred was not as bad as some think. It looked at under 5mg I think - I read it on the day and not since!

medscape.com/viewarticle/86...

[DorsetLady PMRGCAuk volunteer]

Hi,

Please do try 3.5mg next time around - and there is no rush.

It sounds as if 4mg is the dose you actually need at the moment, but it won’t always be!

There are lots of people who cut 1mg tablets, it just takes a bit of practice - and I’m sure you’ll become a master at it.

However if you can get 2.5mg tablets then you can mix and match and won’t need to cut until you get to 1,5mgs! That’s something to aim for!

I think most medical people, unless they are Rheumies, don’t understand about patients being on Pred long-term, they are only aware of short term treatments for asthma, COPD etc.

[PMRpro Ambassador]

Over the years on the forums my experience has been that the most common duration for GCA and PMR is somewhere in the region of 4 to 5 years, GCA maybe a bit shorter than PMR.

Sounds like a good doctor though.

[polydoodle]

Hi mo3go7, I was diagnosed with PMR, and GCA 2 years ago. Have been reducing pred from 60mg over time, and am now down to 4mg for the last 3 days. Your post really interested me as I have had excruciating pain in left hip, groin, buttock and leg, also feel flu like. I was always told that PMR caused bilateral pain. Doc said it's probably sciatica! Doesn't feel like it though as I've had that in the past. Anyone else had pain on one side only?

[PMRpro Ambassador in reply to polydoodle]

My pain like that is due to piriformis syndrome which CAN be more one-sided. Like the more general myofascial pain syndrome it is found more often in PMR patients than might be expected in healthy patients. But piriformis syndrome is one cause of sciatica - the nerve passes through the muscle in some people and it gets pinched as the muscle spasms. AIming treatment at the muscle will helps all the symptoms. Mine improves at higher doses of pred and returns as I reduce dose. I'd also wonder if you are just a tad too low with pred - but first get the piriformis sorted. I have a wonder-physio!

[Portobello in reply to polydoodle]

Hi Polydoodle My journey's been much shorter than yours- PMR: Pred for 4 months. However recently I had exactly the same symptoms . I tried upping the Pred for a few days but the pain didn't improve. Difficult to see a GP in this neck of the woods so decided to try some physio privately. The physio says it's a problem with my sacroiliac joint, has given me ultrasound and exercises. After 3 sessions there's been a big improvement although I still feel fluey, tired and twingy elsewhere. Finally seeing GP on Monday and will request bloods I think. Not sure if this helps at all?? Be interesting to see what others on this wonderful forum think.

[polydoodle in reply to Portobello]

Hi folks, many thanks for your input - very interesting.... food for thought. I've been to see an osteopath, and she seems to think it's a trapped femoral nerve. I've increased to 5mg today and the fluey symptoms are reducing but the leg pain! Arrr! Must go and see my osteopath again for another work out.

[Portobello in reply to polydoodle]

Hope the pain improves soon- so debilitating on top of the rest😕 As a matter of interest which painkillers are you using since NSAIDs are off the table? Take care

[polydoodle in reply to Portobello]

Hi Portobello, I'm only surviving on Paracetamol as anything codeine based doesn't agree with me. You take care too!

[Blearyeyed]

Yes , give yourself time to get over the inflammation, regain your strength , prepare your body with good nutrition and try building up some more exercise and then try reducing by 0.5 mg a time when you feel confident and ready to do it.

Pace yourself really well and allow yourself more rest in those first few weeks as you know your Adrenals will still be recovering so won't be able to react to physical and mental stress as quickly as you need which could impact on your success.

Take your time , the tortoise wins the PMR race Never the Hare. Good Luck

[SheffieldJane]

Good luck with this bit, it’s tricky but sometimes the waters just part - keep trying.

[Melodyvine]

Yes, I would agree with above, reduce by halves and slowly, slowly catchee monkey!

[Jackoh]

Just out of interest I had a round pill cutter and that was really quite useless at cutting the unvisited 1 mg tablets. I subsequently bought my daughter an oblong shaped cutter from Amazon. I tried it myself and it was great so I’d really recommend one if you can’t get 2.5 mg tablets to get the right combination.

[Suet3942]

Hi. You can ask gp for 2.5mg pred. Good luck