Some of the posts are so discouraging to me..

[Trevgrrl]

I've been reading the forums posts for years now, and have felt good that I'm not alone with PMR. But reading the posts that talk about how you've gotten down to under five pred. is so discouraging to me. I am still at 25 and hurting so much I take 30 some days. I once got down to 13, but then had a bad flare after pneumonia and haven't succeeded at all. My doctor is frantic and trying all sorts of additions. Is anyone in my shoes?

[PMRpro Ambassador]

I'm not at 25mg, I have been at 15mg since last autumn because of a flare and other problems but have managed to reduce to 12mg since having a pacemaker inserted. However I have only managed to get to 4mg once in 10 years of pred and some 4 months later had a flare. I've had PMR for some 15 years. It's unusual, but it happens.

It would be really helpful if you could complete your profile page - I have no context for your dose, no diagnosis, no time scale. If you are at 25mg some few months into pred, given your weight (which does make a difference) that is a reasonable dose for a very active problem. OTOH, if you are a long time into pred management it isn't. Most people who are at 5mg have probably been on the journey for years - an average time to 5mg is 18 months but even that we would say is pretty good going. It took me over 4 years to get reliably below 10mg - after an initial taper of 2 weeks each of 15, 10, 5mg that worked until I missed the first 5mg dose.

It is true though that if the original thoughts were of PMR, inability to reduce to 20mg should trigger thoughts of another diagnosis.

[jinasc]

I am so sad that you are still struggling and at such a young age.

I am also sorry that I cannot give you a real hug and explain to you that people who write about getting down to 5mg or even into remission is discouraging. For years we have encouraged people who have gone into remission to keep on posting and helping others through this journey no-one ever wanted to undertake. Without those stories, people would just think there is no remission.

I notice that you joined in January 2019, but nothing else. You also wrote you have been reading the posts for years.

I also want to ask, are you currently being treat by your GP.

PMRpro has asked relevant questions, please answer them in as much detail as possible, or just add it all to your profile.

[Longtimer]

I know what you mean sometimes I have thought what am I doing wrong that I can't lower like others on the forum (7years on pred) we are all different, I started on 15 mg, had two rheumies that made me worse by making me lower pre d too quick.....

Now I have been at 8 mg for a few months, and 2 weeks ago became so ill, with such weak legs and fatigue, and have had to up to 10 mg for a few days to feel like I did....now back to 8mg today and fingers crossed I don't relapse again.....I have made an appointment for ablood test...maybe adrenal maybe not....I sympathise with you...it's a minefield

keeping well at the right dose.....😏

I hope You find some answers soon.....

[SnazzyD in reply to Longtimer]

Are you sure that wasn’t adrenal kick back? I felt like that and I don’t have PMR. It would definitely happen if I had any extra demand at all, extra being hardly anything like having a visitor, having a fright like slipping or having an appointment. My legs would go to jelly and I felt totally empty on top of already feeling weak and feeble.

[Longtimer in reply to SnazzyD]

Yes I'm sure it is something to do with adrenals, that's why I have asked for a blood test, I also felt very low....so waiting for doc appointment and blood test....Thank you....

[piglette]

I know how you feel. I thought I would never get down to 10mg, then one day I found that I had made it. It does take a long time, well in my case it did due to an idiot rheumie who kept wanting me to reduce at a rate of knots, so I had awful flares and yo-yoed all the time. I got rid if him and things did improve, but I am certain he is the reason I have trouble reducing still. I may of course by totally wrong!

[Longtimer in reply to piglette]

I agree entirely.....my predictive text always changes rheumies to enemies!...😏...think I might leave it next time......

[piglette in reply to Longtimer]

Perhaps predictive text knows something we don’t!!

[PMRpro Ambassador in reply to Longtimer]

Bit Freudian given your history of rheumies!!!

[Longtimer in reply to PMRpro]

Absolutely!....

[Blearyeyed]

Getting your pain managed is hard , especially if you have other conditions to add into the mix , or you get knocked back by recurrent illness or infection.

So , I am going to write you a message which I hope you can keep in mind when you feel discouraged.

You are a strong fighter , the figures and the length of the battle don't change that.

The fact that you are still trying to fight the battle and win the war , no matter how many defeats you suffer , shows you are a resilient , amazing and successful human being.

Being willing to keep fighting despite the setbacks shows that you are more able to cope with the worst things that life gives you than most people you will meet or speak to every day.

Never get discouraged by your losses but be inspired by your daily victories , no matter how small.

Remember , we are all fighting hard but all taking part in different wars.

[Trevgrrl]

Thank you all for your replies. I have other health problems which add to my misery. Lower back and hip pain due to osteoarthritis. The rheum. dr. has recently put me on sulfasomazine, or something like that, for rheum. arthritis to see if it will help me reduce the pred.

[PMRpro Ambassador in reply to Trevgrrl]

Sulphasalazine?

[Trevgrrl in reply to PMRpro]

Yes, that is it. I've just taken it twice, no noticeable improvement.

[Hidden in reply to Trevgrrl]

I am on a dmard and it took 8 weeks for it to kick in....I reduced without a flare but never 100% sure it helps but if I forget to take a size I feel steroids wear off more quickly..

"Like all DMARDs, sulfasalazine takes time to work. Most patients start to feel the positive effects of at 4-8 weeks, with maximum benefit at 3-6 months."

albertarheumatology.com/sul...

[Trevgrrl in reply to Hidden]

Thanks for that info.

[PMRpro Ambassador in reply to Trevgrrl]

Most such drugs do take up to months to build up the effect - at least several weeks so you won't notice a sudden and dramatic improvement.