Getting Worse not Better

This is my first post on this forum so I am hoping some support will help me feel a bit happier with my current health situation.I was diagnosed with PMR in 2013 and put on 15mgs of prednisone.A year later I was started on Methotrexate to help lower my pred a little quicker.I had got down to 7mgs after a year.Things continued pretty uneventfully for a year and then my inflamatory condition started to slowly increase ( CRP ) as the pred was reduced to 3mgs.Its now three and a half years since I started pred and my CRP is now 15 -my pred is back to 7mgs and I have Osteo arthritis in both hips and both knees.Does this horrible disease ever end because at the moment I am getting worse not better.I am hoping this makes sense as I tried to condense this so it wasn't too long I am 69 yrs old and I live in Auckland NZ.

[Hidden]

Hi Gaga, so sorry to hear of your hips and ongoing process going so slow.

what I have found is to make my list short n sweet because I am trying to sculpt out a new version of my life. Our new version is typically way different than the day before PMR.

I have taken up painting again but it is not like when I was younger. I set up the easel n put out the paints n brushes.. who would ever think I would have to rest before starting.

Later in the day I finally pull out the canvas and start painting after my rest.

A dear friend lost her dog and loved the beach. I painted my first dog today n she looks like Rosie Yah!

Then I once again rest...

But, getting past the I don't have energy to do anything is the hard part of my days.. BUT I stopped beating myself up and do not listen to all the chatter in my head. I do when I can and rest when I can't.

Blessings

Lin

[Griggser]

Hi gaga, I too was diagnosed in 2013 and have had methotrexate to try and help reduce from the original 15mg of pred. Unfortunately I have not managed to get below 12mg of pred. The methotrexate did not work for neither did azathriapine, mycophenalte or leflunomide. I've just started a course of hydroxchloroquine and my preds have been upped again to 20mg one day followed by 10mg the next. As you can imagine I'm quite disappointed to not be off pred by now but at least I'm not in excruciating pain. I'm not pain free and certainly it has been life changing, I can't as much as I send to and I'm having second thoughts about booking our dream holiday to New Zealand (we live in the UK) as I don't think I can cope with the demands it would put on me. It's a 38 day motorhome tour of both islands. I have accepted that it's a life changing, not life threatening disease, and try to make the best of it. This is certainly helped by being able to take ill health retirement 6 months ago at age 60. Of course I get frustrated by not being able to do what I used to but I'm still here to enjoy my family and friends. I hope you start to feel a bit better soon and I wish you luck in your journey. Don't forget it's not the destination that's important but the journey so try to make the journey as enjoyable as you can. 😀

[wendythom in reply to Griggser]

Hi Griggser

I was heartened to read your reply- not that I want you to be on loads of steroids but, like you, I am 4 years along the road, aged 60, and still on a highish dose of steroids. So many people seem to reduce quickly with no problems but it is a relief to know that I am not alone in my journey. At the moment I have a major flare and back up to 20mg, and I have never got below 9mg.

I haven't tried the methotrexate and other things - not sure I want to really. I find this site such a help - the medical profession don't seem to be terribly interested here. I wish you the best of luck and hope we can both get rid of this soon!

[Megams]

Sorry to hear this gaga68 - where about's are you in Auckland? Maybe try & privately message me & I will support you the best way I can.

Blessings

[Hidden in reply to Megams]

Hi Megams - thanks for the contact. I'm in Epsom (Ranfurly road) I'm hoping we might be able to make contact - that would be tremendous because it can be very lonely with PMR as most people don't understand the disease.

[Megams in reply to Hidden]

Not sure how the private messaging works here gaga but if u leave me your email I will respond as soon as I can then suggest you delete your ads.

[HeronNS in reply to Megams]

Click on person's name and you go to the page where you private message that individual. Notification of new messages and replies shows up at the top of the page whenever you check in with this forum.

[Hidden in reply to HeronNS]

Thanks Heron -I'll try that soon.

[DorsetLady PMRGCAuk volunteer]

Hi gaga68,

Sorry to hear you're having such problems reducing.

I found the time between being on 6mg down to 3mg very difficult - it's around those doses that your adrenal glands need to kick back in, and sometimes they're quite slow to do that. Have you had any discussion with your doctor to check if they are capable of working? Might be worth checking.

Your raised CRP markers may be due to your OA as much as your PMR - after all it's all inflammation related. You'll probably find you get more pain from your hips and knees as you reduce the Pred, it does mask the OA pain at higher doses - as I found out! Some days you feel you just can't win!

Things will get better, but unfortunately PMR has its own timescale, so it's a matter of getting through the worst as best you can, and as others have said it can be very isolating at times. Hopefully if you and Megams can get together you may feel less alone, but do remember there's always someone on here who will help if we can - we may be half a world away physically, but we're close at heart.

[Hidden in reply to DorsetLady]

Thanks so much -your response has actually been very helpful.I am being recalled to see my Rheumatologist (time frame in the next six weeks) urgently so I will mention the adrenal gland activity to her as I wondered if that's causing me to struggle so much to reduce my pred. How do they know if the gland is functioning?

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi

They can perform a ACTH or Synacthen Test in which they inject a hormone to see if your adrenal glands react to it. If so, then they are capable of working - if no reaction then are not capable of working. Second scenario is rare but not unknown. Usually your glands are capable of working but may need a nudge to get them going properly, especially if the Pred has taken over their function for some time! Which I suspect may be your problem.

Good luck.

[Celtic PMRGCAuk volunteer]

gaga, yes, your post makes perfect sense. If you managed to get down to 7mg of Pred after just one year on treatment, that is no small feat and I am wondering why it was considered that Methotrexate should be introduced at that stage. If you were finding it difficult to reduce below 7mg at that time, is it possible that you were reducing in too large decrements and/or not remaining on each new dose for long enough - remembering that each reduction is a larger percentage drop than the previous one? At the 7mg dose your adrenal glands have to start kicking back in again with manufacturing their own natural steroid production (cortisol) after having been suppressed by the artificial steroids - this is not a speedy process and those glands need extra time to catch up. At this stage it can also help to reduce in smaller decrements of half a mg, slowly tapering to each new dose over a longer period of time, sort of tricking the body into not noticing the reduction. Perhaps, if you haven't yet tried the very slow tapering regime, now that you are back at 7mg perhaps doing so will prove successful for you this time. But do ensure that your PMR symptoms are under control and your CRP is returning to normal before any further reduction, even if this means a slight increase above 7mgs to ensure that the inflammation is well under control in the first place. And, yes, things definitely can and do improve - it just takes longer for some people than others.....for me it was 5 1/2 years on treatment following a year of hell without. But I reached remission and zero Pred some 4 years ago now, so stay positive, and good luck this time around.

[rodenski]

Hello Gaga68

Nasty combination! I have just had osteo-arthritis diagnosed in one knee (I turned 76 last week) and am currently on 6mg of Pred having been told to pause the taper and maintain the level after having had a heavy steroid injection in the knee (which has done wonders for the knee). I have had some weird side-effects from the PMR that the consultants have been unable to explain or treat (violent torso muscle spasms and heavy and partially disabling dragging sensations, also in torso muscles, as well as one or two erratic perceptual problems linked to balance and attention). The PMR (and the spasms) started in autumn 2014, when I was put on an initial 20mg Pred. The pain and the spasms were under control by the following spring - when the "heavy muscles" side effects kicked in, in case I was feeling complacent! As far as I can see, there is still rather a lot to learn about PMR.

I went to the AGM of the British PMR and GCA Support Association in summer (PMRGCAUK - google it). A top expert told us about the battle to diagnose GCA promptly to avoid going blind (you have to watch out: even when you think your PMR is beaten, the GCA can apparently pop up out of the blue, months or years later). A former PMR sufferer who has now written what is said to be the best book on coping with PMR also gave a presentation. She said something I found interesting: it's not the muscles we should be focussing on, it's the vascular system (whose inflammation as you know is the originating cause of both PMR and GCA). Have been trying to follow up the implications of this comment. It might explain, for instance, my perceptual problems.

I find the best medicine is often doing something that fully absorbs my attention.

As they say, we're all in this together, right across a world that can't imagine or understand our condition! I wish you well.

[HeronNS in reply to rodenski]

Just to ask the obvious, do you have enough magnesium in your diet or as a supplement? Many of us are prescribed calcium and Vitamin D to counteract possible bone thinning from pred, but too much calcium in relation to magnesium can cause problems of its own, including pain, muscle cramps and so on.

Another thing you might want to look into is something called dry needling which is a method whereby a trained medical person, often a physiotherapist, resets the electrical impulses in spasmed muscles.

[PMRpro Ambassador]

As long as the underlying autoimmune disease that causes the symptoms that we call PMR is active you will need enough pred to manage the symptoms. I'd say you have reduced the dose too far too soon - there is no guarantee that mtx will help you reduce the pred dose and it certainly won't replace it altogether. You need the amount of pred that you need - no ifs or buts.

I've been on pred for 7 years, have had PMR for 12 years. As long as I take the right dose of pred I'm fine and can have a pretty much pain-free life and do most things. Not at the level I used to, but I can do them.

If your CRP is rising then the inflammation is increasing - labtestsonline says "an increased level of CRP occurs in RA but not in osteoarthritis" (and obviously in PMR as we know) though there does seem to be a bit of disagreement about its role in diagnosing OA. However, as far as I can see, it is the hs-CRP that may be raised there though - not the one they measure in PMR.

So it would appear that your PMR may well still be active and you need a bit more pred.