I see my dr. tomorrow and I'm concerned he will want to add MTX to my Prednisone because in the last 2 month ago my CRP was its lowest ever at 1.3 and now has gone to 7.3 and 7.6 on a test two days ago. I have been on 9 mg of Pred for over a month but I admittedly dropped from 12 to 9mg over another 2 months. My CRP readings coincide with increased morning stiffness and the duration it lasts. From what I've read here with the 'dead slow' approach it appears I've dropped too fast and 9 mg is too low for me. I expect tomorrow my family dr. will push for me to introduce Methotrexate but I want to ask for another chance to introduce the 'dead slow' approach. I'm concerned he'll say we've tried this 3 or 4 times already and the Pred is not working. I'm hoping the approach Eileen and Mrs. O have outlined will work for me and will try to get my dr. to go along with this, after all he's the one I need to keep writing the prescriptions! I would start by going to 10 mg for a few days and see how I feel and if there's no improvement go to 11 and slowly increase until I'm comfortable then get another CRP. Even when my CRP was at 1.3 a few months ago I wasn't totally pain free but certainly doing better than I am now. Might any of you have advice for me as I go into tomorrow's meeting?
Leonard, you haven't tried the very slow tapering regime from one dose to the next yet. That regime can take about 7 weeks to reduce just half a mg, whereas you have reduced from 12 to 9 in just 8 weeks... a whole 3mgs! You could increase to 11mg in the first instance, then get a repeat blood test done a couple of weeks later. If the result shows an improvement together with an improvement in the early morning stiffness, you can then start on the new routine. This is an option well worth trying before embarking on MTX. Those of us already on zero Pred, and those who have struggled until adopting the slowly slowly routine, have proved that it works.
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🌸
Explain your concerns about the MTX and ask for a reason why Prednisolone is not sufficient (as it has managed the illness for you in the recent past and you are on an extremely low dose). Doctors usually use a very quick reduction programme which often causes the illness to recur. I had 3 flares in the first 12 months! Now I've been on 7mg for 6 months, I am hoping my body has had a chance to heal itself.
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