Increasing pain

Thanks iellen I'm going to try the 7 as I'm starting to feel really poorly just as I did at the start of my pmr journey , you forget what it's like when you've been feeling better for a while , I have to say I've never felt 100% but this is awful 

hope your well 

Yes, increase a little until you feel it's right for you.

Tha same is happening with my GCA I had a flare up and now I am trying to get the right amount of Pred again. Yesterday it looks like I made it and today since morning I notice the difference for the better.

Hope you manage to feel well🌺

thanks Ron I'm going to try the 7 and fingers crossed it works 

Thanks Mrs o , if I increase to the 8 how long would I be expected to stay there and then would you say I should decrease by a half slowly 

thanks Molly 

Molly, if increasing to 8mg proves successful, then you should remain there for a few weeks to really stabilise things, and then yes taper gradually by just half mg decrements but only as far as 6mg, remaining there for a month or so before trying to reduce any further.  After a severe flare starting at the 5mg dose and escalating at 3mg I was advised to increase to 10mg, slowly alternating back down via 10/7.5, 7.5/5 over several weeks, and then once back at 5mg my rheumy kept me there for 5-6 months - the point where things had previously gone pear-shaped.  Very unlikely to be any side effects from these low dose so if remaining there for a long time provides quality of life, then so be it - no point in taking an insufficent dose and suffering.  

Thanks Eileen I've been on 6 for a while I only reduced to 5 1/2 for one day last week then back to 6 and was going to continue slowly decreasing  by so many days old then so many new ,unfortunately I've been slowly feeling not right and today I felt terrible so took 8 this morning I'm hoping I see an improvement soon .

Have you maybe got an infection? I had a urinary tract infection which I didn't register (I don't get the usual symptoms) and it triggered a real flare that has needed 15mg to get under control. Really annoying since I'd got to 5mg and was feeling really well. Any sort of infection can do it but UTIs are particularly bad.

Don't think so I haven't got any symptoms I don't have a temperature , I've been having night sweats but to be honest I get them off and on anyway and have done since going through the menopause , I do feel achy like flu but have no other symptoms like sore throats coughs etc .

Hi Molly I do not know exactly which is your health condition - PMR , GCA , or both.

Those night sweats + fever , flu like symptoms, pain around the joints, sore throat were my early sptoms - undetected by the GP I had by then.

I was blessed during a weekend with the appearance of a new symptom which led me to the ER of our local hospital where a bright doc in a couple oh hours and after an amount of tests gave me the diagnosis and the first Pred 60mg

Then came the biopsy and sequence of consultation with a specialist .

Just to tell you my experience not exactly as yours, neither the route cause as I see.

Hope you have it sorted out soon.

🌺🌺🌺🌺

It's often difficult when you are on pred - it masks inflammation or temperatures. The sweats could be spiking raised temps - or not. Pain int he anatomy is PMR...

Hi iellen I have pmr started with symptoms last April May time went to Doctor who tested for everything thyroid , vitamin D deficiency , I didn't think it would be that though as I am on a maintenance dose for that having suffered vitamin d deficiency a few years back, the symptoms are very like pmr I've since discovered, blood tests came back clear for everything but GP said it did show up inflammation and she thought it could be either pmr or chronic fatigue and would like to refer me to see rheumatologist , I had to wait till August before I got appointment and was started on pred at 15mg for a month I saw a massive improvement within days thankfully , it's only through being on this forum though that I have got many of the answers there are so many things that are connected to this I just thought I had developed something else so thanks for all your help and support .

It certainly is Eileen I guess you learn as you go on , hopefully I will discover if it's the pmr I should feel better tomorrow , blooming thing mimics so many things I just don't want to start all over again .

Feel so much better today pain is just about gone so onwards and upwards .

Molly - great news, I'm so pleased for you!  Now don't go rushing about overdoing things just because you feel you can....you can't!  The steroids aren't curing anything - they are just damping down the inflammation whilst taking a while to get control over it.  So be sure to give them every opportunity to do their job. 

That's good - so keep a low profile and no overdoing things!

Plenty of rest for me Eileen I don't have the energy at the minute just glad pain is slowly going .

I had a really good day yesterday but it didn't last the full 24 hours I woke up in the early hours feeling sore so feel really tired this morning and achy , could this be because 8mg isn't enough or would I be better off splitting the dose .

Molly, difficult question to answer at this stage as you have only just increased back to the 8mg dose so impossible to know whether your body will gradually adjust as the effects of the continued daily increased dose accumulate.

At the moment, so soon after the small increase, the effects of the daily dose are clearly not lasting as long as 24 hours (anything between 12 and 36 hours can be expected).  

Although a few people do find that splitting their dose two-thirds in the morning and one-third at night can help with their early morning stiffness, I feel it might be a bit soon after the increase to confuse the body with yet another change at this stage.......unless that change is to increase the dose slightly further!  

Certainly, I had to increase back to 10mg to manage a severe flare at 3mg - only you can tell the severity of your flare and whether you, too, would benefit from increasing further.  The general recommendation is to increase by 5mg to get a flare under control, and the sooner that is done the better - any longer and it could need a return to the starting dose to really get on top of things.  

Thanks Mrs O I took 10 this morning as I am in a lot of discomfort so I should really have taken 11 as I was on 6 , my rheumy never gave me any figures to increase to just said he was happy for me to do it .

Molly, hopefully your pain will settle well and be longer controlled now back on 10.  No fun being in pain, but have some catnaps today to make up for the lack of sleep, and I hope you have a better night tonight.  Importantly, you had a good day yesterday, so stay positive and hopefully many more good days are around the corner.

Thanks Mrs O pain is starting to ease now I've taken the 10 so that helps me to stay positive I know there is light at the end of the tunnel now .

Molly, I thought for you. What I have been told and what I have found is that it's OK to take a single dose of prednisone at a higher level when you flair. When I was it 5 mg, my room he told me to take a shot at 15 mg for one day and 10 the next. Then back down. The point is that when you flare you need to get it under control with a quick shot of prednisone. But if you stay at that higher level, you have to start tapering from there all over again.

Thanks Daniel that's what I'm not sure of how long to stay on and when and how much to taper by to stop the pain coming back .

"But if you stay at that higher level, you have to start tapering from there all over again."

The reason for increasing to the higher level is obviously to get control of the inflammation.  But, if you only take the higher dose for just one day, the chances are that the inflammation won't have stabilised completely and as you reduce further the lurking inflammation is at risk of breaking through into another flare.

It is very often easier and faster to reduce back down the second time around following a flare but not right down as far as the original dose where the flare occured but a dose just above, where you last felt comfortable.

The flare that I mentioned in my earlier reply to Molly was managed by increasing back up from 3mgs to 10mgs for 2 weeks, followed by 7.5mgs for 2 weeks, then alternate days of 7.5 and 5mgs for another 2 weeks, before returning to 5mg each day.  As that was the point where my symptoms had started reappearing, I was then kept on that dose for very many months, which with hindsight was wonderful advice as it gave my adrenal glands the time they needed to start catching up with producing their own supply of cortisol (natural steroid) that the body makes when well, having been suppressed by the long-term, artifical steroid, Prednisolone, allowing me to very slowly continue tapering to zero Pred. 

 

Thanks Mrs O you have answered my question and that's just what I am going to do now stay on 10 for two weeks then start tapering as you have said .

This kind of give and take is what is so nice about this site.

The advice from people that have been dealing with this

awful disease is so helpful.  I stumbled around for about

two years not really knowing what to do and not getting a lot

of help from my Primary.  It's not that he's not helpful I just

think he doesn't know much about PMR.  So happy to have

found this forum.  I told my doc I've learned a lot from it.

He pretty much lets me handle what i do now.....I feel I have

options now that I didn't know about before.

Thanks for all the help and advice fellow sufferers......

It makes so much difference when you have others validating how you feel.  And it's even better when the doctor comes to the conclusion that the patient's symptoms really are the most significant thing.  Glad you are feeling more positive about things now.  I've been so lucky because my doctor let me make tapering decisions right from the beginning - although offering helpful advice and emphasizing need for going slowly.  Of course her "slow" was not quite what I've ended up needing, and this site has filled in the gaps in understanding! 

I don't think many of these rheumatoligsts do know much about this disease mine certainly doesn't because he told me at my first consultation ,so I've been so pleased I found all you lot on here who have helped me and know exactly how I'm feeling  . 

Thanks to to you all out there take care .

Faye, at least if your Dr didn't know much about PMR at the start of your 'journey' with it, he is learning from you now.....hopefully!  I often wonder how many poorly patients are out there suffering in silence because they haven't got access to the internet.  It was on this forum more than 10 years ago that I posted asking whether there was anyone out there with PMR/GCA.  I immediately received replies from five other ladies (lodger who still pops in here was one) who had just 'found' each other and what a Wow! moment that was to find I was no longer alone on this 'journey'.  Now we have three charities in the UK and support groups springing up all over the place.   We advertise our support groups in places like GP surgeries, community centres etc, so hopefully the day will soon come when there won't be anyone out there suffering alone - a trouble shared is a trouble halved, as the saying goes.