I'm concerned that tomorrow my dr. will want me to start Methotrexate along with my Prednisone!!!

Oh Leonard, the stress of this condition and now the added stress of the fear of being put on mtx, it's all adds up to a bad mix.

many gp's don't really know how to treat us and when our recovery regime  goes wrong or not quite how they envisioned then it's all our fault and they grasp at straws instead of calming down and reflecting.

i agree with Mrs O, you have reduced far too much too quickly.

i was on 15mgs for 6 weeks, 12.5 for 6 weeks , then 10mgs for 6 months. I then successfully reduced from 10 to 9mgs for 6 weeks however when I attempted to reduce from 9 to 8 mgs I suffered an almighty flare. I put myself back up to 9 and because the pains went almost immediately I then reduced again within 2 weeks, albeit by only .5 to 8.5, but this reduction was too much as I hadn't really got the first flare back under control, and I again suffered flare number 2. This time I put myself back up to 10mgs so that the preds could really get to work and do their work by getting on top of this flare. By this time I was a member of this forum and read all about the slowly slowly routine Mrs O has mentioned. I stayed on 10 for 6 weeks and then reduced by only .5 every further 6 weeks. I am now down to 8.5 and feeling great. I was scheduled to reduce to 8.5/8 in 2 weeks time but I have the most dreadful cold sore, (I suffer terribly from cold sores and in fact when I attempted my first reduction from 9 to 8 I was smack bang in the middle of 2 cold sores and I doubt attempting a reduction then would have helped). So I will hold on a bit longer and attempt my next reduction a little later than scheduled. So I must concur although I am not yet at the finishing line the go slow and almost stop method does work. Explain to your Dr that you want to attempt this reduction method before resorting to adding another drug. Be firm, then attempt this slowly slowly regime by only reducing by .5 each reduction and not 1mg. There are many sufferers out there whose bodies are very sensitive to even the smallest reduction. It's about reaching that finishing line and  hopefully crossing it, slowly and safely. Remember the rabbit and the tortoise. Good luck Leonard, please please let us know how you get on at your appointment. Regards, christina 

Hi Christina, thanks for all the above information and suggestions.  I'll let you know how the meeting goes.  I appreciate your support immensely!

Hi Leonard,

I can't really add more than what has already been said but might suggest you take the information available on the Patient UK NE site with you to your appointment and express strongly that this reduction method has been very successful.  I really wish doctors weren't so quick to give you drugs, especially when not absolutely necessary.

Good luck!!

Diana🌸

Hi Christine, just saw my dr. and he wanted to follow up with me.  I've been on Pred for almost 2 years and he wasn't pushing MTX but said he was concerned with long term Pred use.  He was okay with the 'dead slow approach' I said I wanted to try.  He also indicated none of his patients on MTX have had problems so he left it open for me to consider trying it down the road..........sooner than later I expect!  He also made an appointment for me to see an endocrinologist as suggested in a letter from my rheumatologist along with a bone density test. Overall it went well but it's very apparent these two physicians would like me to avoid long term Pred use if at all possible.  He also felt I definitely didn't have RA but had PMR and possiblity some other inflammatory condition which he couldn't identify.

 .

Hello Leonard, good I'm glad things with your Dr didn't go as badly as you'd expected. We are all concerned with long term pred use but when dr's recommend inappropriate recovery programmes that is precisely what happens. They request we reduce too soon and by too big a dose, the result, a flare, so what happens we up our pred again and so begins the yo yo effect that ultimately results in us  Being on a higher dose of pred for longer which is precisely the result they didn't want! 

I think you are either on 11 or 10 mgs, whatever, what is important is that the dose you are on is the dose that gives you the maximum level of PMR symptom relief. Stay on that dose for at least 6 weeks, then start your reduction, but this time a controlled slow reduction and never drop your dose more than 1mg, I only ever reduce by .5 to be on the safe side. Follow Eileen's go slow and almost stop plan. So for arguments sake we'll say your starting dose is 10. After 6 weeks take 9.5 for 1 day, followed by 10mgs for 6 days, then 9.5, 1 day, 10 for 5 days, 9.5 for 1 day, 10 for 4, 9.5 for 1 day, 10 for 3, and so on and so forth, then when you get down to one day of each dose, you then reverse the dose, so it then becomes 2 days new dose, 5 days old dose, 3 days new dose, 4 days old dose etc, etc, then when you get to 9.5 total, stay on that dose for 6 weeks, then start the same reduction this time, from 9.5 to 9. Do you see how slowly you are reducing? This way you are conning your body into thinking that it's still getting the old dose when really it's actually getting the new dose.

the bone density test is good because of course weakness of our bones is a side effect of preds. You may be recommended a bone thickener? Only take that if the scan proves you have substantial bone loss. But you should be taking a vit d, calcium and magnesium daily supplement whilst on preds anyway, did your Dr tell you that?

anyway, I hope this helps, have a good day. I'm now off to bed, it's 1am and we've just finished watching a murder mystery that had me hiding behind our dog, somehow I can't see me dropping off to sleep for a while yet! Regards, christina 

They are terrified of using pred for more than a couple of years - which isn't terribly useful in an illness that requires at least 2 years - for more than half of patients more like 5 years and even rheumatology textbooks say that so I really don't get why they get so itchy so quickly.

Mind you - one of those textbooks is in German so they won't have read it...

Christina, you're being an amazing help here, truly, and it's most appreciated!  I am taking calcium, vit D, and  magnesium daily.  As to taking a bone thickener I have also heard that many people experience fractures after 5 years on them and this, if it is true, is a concern!   It has been a year since my last bone density test and that was borderline for osteo.  If I had this test 2 years ago prior to the seeming sudden onset of PMR we'd have something to compare it to.  It will be most interesting to see the results this time around.  Have there been discussions here about the pros and cons of taking bone thickeners?

Your comment about doctors dropping the dose too soon is something most of us don't initially realize is going to create problems for us.  Eileen posted a note here a few hours ago saying 2 years on Pred often isn't enough and that one needs to go 'slow'.  Originally my doctors hoped to get me off it in months, one said 1/4 of his patients are still on it at the end of 2 years.  As it is I'm trying to wrap my head around the fact that I will easily be on it at least 3 years as it's no apparent I'm not one of those who is goiing to get off it quickly.

"Have there been discussions here about the pros and cons of taking bone thickeners?"

Loads - use the search engine at the top right corner to search alendronic acid in this forum.

The first dexascan should be done within the first 3 months of pred therapy to provide a baseline.

Your doctors obviously have very limited experience: overall about 1/4 of patients are OFF pred in under 2 years, half will need it for 5 years or thereabout and the remainly quarter for far longer.  And the 1/4 who get off pred so fast are at a far higher risk of relapsing so that speed of reduction is a mixed blessing. You need the pred you need to manage the symptoms.

PMR decides when it comes - and it certainly decides when it goes. Nothing your doctors can do will change that, protest and bluster though they may. What they CAN do is make the journey easier by not trying to rush you off the pred which will inevitably lead to a flare and a return to a higher dose to manage it. No rushing means most patients will reduce slowly but steadily until they find a fairly low dose that manages the symptoms which they can remain at or near for as long as it take. Every so often you have to have a small stab at getting lower otherwise you would never know if it is gone. Although a few people have said they woke one day and felt different - and proceeded to reduce to zero successfully at last.

Hello Leonard, I hope reading all the threads on the forum gives you more confidence with your recovery journey that starts NOW!

i need to correct the reduction plan I gave you, I am so sorry, it was late last evening and it wasn't until I read back through it today that I realise the second part of it is completely wrong. The below us the correct regime as per Eileen's go slow and almost stop method 

1 day new, 6 days old

1 day new, 5 days old

1 day new, 4 days old

1 day new, 3 days old

1 day new, 2 days old

1 day new, 1 day old

1 day old, 2 days new

1 day old, 3 days new

1 day old, 4 days new

1 day old, 5 days new

1 day old, 6 days new

then stay on all new dose for 6 weeks, then  start this reduction method for the next dose. Remember I only only ever reduce by .5. I achieve this by cutting the 5mgs tablet in half. (It has a central indent for that very reason).

if you are taking calcium, vit d and magnesium you may be surprised that your bone density is not as bad as you first feared. If you can do plenty of walking, it's a weight bearing exercise that also helps improve bone density.

well Leonard once you accept that we will not die from this, but it's annoying, uncomfortable and we are slaves to the preds for the long haul you'll be surprised how free you will feel. Any other queries, log on and ask, or simply join in our discussions that can be about almost anything!

good luck Leonard. Regards, christina 

Christina it should be:

1 day new, 6 days old

2 day new, 5 days old - (not two in a row)

3 day new, 4 days old - (not three in a row)

4 day new, 3 days old

5 day new, 2 days old

6 day new, 1 days old

Wonderful advice Christina!  It's hard to find an understanding ear, my wife is sympathetic but can't totally relate to my experience here.  This forum is a great comfort!

Hi oregonjohn, I am totally lost! Anything to do with figures is not my strong point anyway but I took my revised regime straight from Eileen's reduction plan, so I don't understand were I've gone wrong! Also, I don't understand, (not two/three in a row) comment! Please, please explain and write the plan out in full for me please. Sorry but my dumbo alarm bells are ringing. Regards, christina 

Christina, no need for "alarm bells" - you have quoted the correct reducing routine that Eileen follows.  However, Oregonjophn is also correct in that his is a slightly different version.  It's very similar to the one I followed to zero Pred which was a few years ago now, having read about a Swedish gentleman (Ragnar) who like me was having great difficulty getting below 5mg until he tried putting in a 4mg dose every third day of the first week or two.   Since then different people have tried different variations.  Eileen prefers to do her reductions so that there are no two consecutive days at the new dose whilst slowly tapering, whereas I built up consecutive days at the new dose whilst reducing the number of days at the old dose, for instance when reducing from 5 to 4.5, taking 6 weeks to reduce by half a mg,  I did:

1 day new dose, 6 days old dose

2 days new dose, 5 days old dose

3 days new dose, 4 days old dose

4 days new dose, 3 days old dose

5 days new dose, 2 days old dose

6 days new dose, 1 day old dose

7 days new dose

It's just a case of finding whatever works for you, and as long as it is a slowly slowly tapering regime, it does work.

 

Hello Mrs O, one side effect of preds I have never suffered from is this so called brain fog. When oregonjohn posted his thread I sat looking at my iPad screen for absolutely ages. Bob said "you're looking puzzled" and I replied, "you know what Bob, I think I have brain fog, I just don't get this". Bob just laughed!! 

Phew! At least that's sorted. I was sort of right and I don't have Brian fog!  I hope you're well. Regards, christina 

Oh, maybe I do have brain fog, or maybe I have Brian fog! Predictive texting will get me into trouble one day. Christina 

Sorry to confuse you Christina.  In the first week it's just one day at the new lower dose, second week it's two days but not consecutive, third week every other day new dose.  It's a means of reducing very slowly without a sudden shock to the adrenal gland and possible flare.

Got it! Thanks oregonjohn. Regards, christina 

I'm confused by this discussion! In my reduction the important thing - as MrsO mentioned - is that you don't have two consecutive days at the new, lower dose for as long as possible and it is a regular pattern you are using for marking it on your calendar. You give your body a taste of the new lower dose and then comfort it by going back to the dose it knows and loves. The days of new low dose get closer together until you are on alternate days. Then you introduce the other day of new lower dose equally slowly by increasing the number of days at the new dose.

It is all to do with YOUR body's response to steroid reduction - you aren't asking it to go cold turkey which can cause "steroid reduction rheumatism". 

Hi Eileen,

You know, I'm feeling pretty stupid because I totally missed that you don't take the new dose two days in a row😋.  I'm wondering now if that's why my attempt to go from 4mg to 3 1/2mg didn't work???  Until that point I was decreasing every week by 1/2 mg but new dose on consecutive days and it had worked till that point.  Gives me hope that I'll have success getting to a lower dose. I'm currently at 9/10 alternating days.

Thanks and hugs,

Diana🌸