Hope you are experiencing cooler climes! Pennsylvania is finally getting rain and it's much cooler.
Thank goodness you are here. I have three questions… sorry to dump them all at once. Hope they make sense. AND Dorset Lady… I updated my profile!!!
I had my first appointment with the Rheumatologists at the teaching hospital in Philadelphia. I made sure my DEXAscan was read prior to the visit and I have severe osteoporosis (lowest T score is -4.1, the rest of the scores are rather grim).
So… before discussing a plan for the osteoporosis the doctors want to opt for a glucocorticoid-sparing agent such as methotrexate or tocilizumab. My miracle drug prednisone is now a big NO, NO. Will either methotrexate OR tocilizumab give me the relief from pain, stiffness and exhaustion that prednisone does? The plan of care is: Given that tocilizumab can confound the interpretation of inflammatory marker testing, and given that methotrexate has been shown to demonstrate some efficacy, we would initially opt for a trial of methotrexate. In the interim, rapidly decrease glucocorticoids as tolerated.
Question 1: Which is the right drug to try first? Methotrexate OR Tocilizumab. Or is it a crap shoot? Will either drug give me the relief that prednisone does? Methotrexate shows some efficacy? What I’ve read here says that there is little evidence of its efficacy. Tocilizumab confounds interpretation of inflammatory marker setting and that’s a reason not to try it?
Question 2: What’s the safest way to decrease from 30mg (now 25mg dose)? I stayed on 30 mg for 45 days, and nine days ago dropped to 25mg. I had no problems with the drop, and in fact, since 8/1/22 feel like myself again! I’m not tired and have no pain. The doc wants me to drop another 5mg to 20mg on September 1 and I don’t want to because I’m having a tooth extracted and am worried about “dry socket” or some other monstrous dental outcome (I don’t have great luck with my mouth and had two infections leading into shingles and then PMR). How many days do I wait after the tooth extraction to decrease my dose? Should I go for a 5mg drop or a 2.5mg and then sit on it for how many days?
Question 3: My osteoporosis is not from Prednisone. My PTH is actually slightly elevated. Do I assume that with severe osteoporosis that Prednisone will nail my bones? If not, how do I “prove” it? Prednisone has been a godsend for me. I don’t want to go back to the hell of PMR and it will stop me from walking which I need to do for my osteoporosis. I finally have the energy to walk!
I will, of course, ask my Rheumy these questions, but his perspective has a doctor’s agenda and I’m looking for the patient perspective as one who has lived or lives with PMR. Thanks from the bottom of my heart.❤️
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Chicama
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Thanks for updating profile -gold star on its way ⭐️
Q1.. never taken either, but would probably opt for TCZ if I had too… others who have been on both will advise-but it’s not as easy as swop either for Pred
Q2… smaller tapers for sure 2 @ 2.5mg rather than 1@ 5mg -and allow tooth extraction to fully recover first.
Q3..Pred will not necessarily “nail your bones”… hopefully HeronNS will be along with good advice soon…snd yes keep walking.
Well HE might think that MTX has "shown some efficacy" - for a small cohort of patients it works brilliantly. For the rest, not so much. There is about to be a study but they take time. And it takes quite a time to find out whether MTX works for you, it can be months.
So TCZ can confound inflammatory marker testing - what's that got to do with the price of butter? About a fifth of us never had raised markers anyway - in that case you go by symptoms which are more accurate anyway since you can have raised ESR and CRP for a host of reasons besides PMR, chesty colds can send CRP to dizzy heights! I understand at least one reumy in Germany is using calprotectin as the marker for inflammation in GCA patients on TCZ.
There has recently been a study in Europe using TCZ in newly diagnosed PMR and another, larger, study is underway in France for longterm PMR patients. It hasn't yet reported but is said to be looking good.
My rheumy is one of the authors on the paper - and he started me on TCZ just over 4 months ago as I have been stuck at well over 15mg for more than 2 years. with repeated major flares in that time. I've been on pred for 13 years altogether. It isn't an instant answer - Christian said to expect not much difference for at least 2 months and to reduce pred very slowly when I did try. I have managed to reduce the dose without feeling any worse which is a good start I suppose and there has been a definite change in how I feel the last couple of weeks. The last flare 6 months ago was a nasty one and has taken a lot of more targeted treatments to even let me walk more than into the village and back. I did the injection yesterday and today I feel much freer in terms of movement - I'll see how long it lasts. But compared with my experience of MTX it is like night and day - after 4 weeks of MTX I could barely put one foot in front of the other because of overwhelming fatigue, my hair was falling out in chunks and I felt worse than with untreated PMR! I hurt, I ached, I was hungry and gaining weight! Never happened with pred alone.
Dropping your dose - 30mg was a very high starting dose and you were at it for quite a while, if the symptoms are under control I see no reason why you shouldn't drop to 20mg as he wants - it is still a high starting dose and if it doesn't work you can go back. I'm not quite clear why you ask about "safest" - the only risk is the PMR symptoms surface and they will do that however you reduce once you get to "that" dose. There isn't an adrenal risk for most people until you get down to about 10mg.
As DL says, pred doesn't always nail the bones - my t-scores had barely changed in 11 years on pred, most of them at above 10mg, If yours is a PTH problem, sorting that and putting you on Prolia or the newer bone building drug (name escapes me, sorry) will sort those t-scores. Obviously they are gong to be happier with you on something other than pred, but as you so rightly say, you need your pred for mobility at present. Neither of them will get you off pred overnight - but I'd say there was a better chance of getting off pred with TCZ. If PMR turns out to be like GCA, it is 50/50 you would get off pred altogether but it will definitely get you to a much lower dose of pred in about 6 months or so.
1. I may have misunderstood but is there a consideration to use methotrexate rather than pred/TCZ? It is just that methotrexate is to help you reduce the dose of pred not to be the primary drug. 2. Personally I would not reduce the dose if I were having dental work done. I would wait until I felt better.
3. Steroids will not necessarily ‘nail your bones’! My score has not changed and is well up in the positive range. I do take vitamin D with calcium though.
It has all been said, but you might like to try Flexiseq, for relief from the pain of osteo. It is a bio-logical ointment ( not a drug) so no side effects just relief. The tiny microscope balls, get between the two bones and the disappears.
Have you ever had a fracture? Apparently the highest risk for fracture is if you have already had one (kind of weird reasoning to me, but there you go). There is no point taking any bone meds until the parathyroid issue is dealt with. People can find their bone thinning begins to reverse after the parathyroid imbalance (whatever the cause ) has been treated, even without medication. For some other ideas about things you can do to help improve your bone density have a look at the account I wrote a few years ago (link below).
As for whether you should take a medication to improve your bone density, that is of course something only you can decide. I do caution you against the newer types, like Prolia and Evenity as they come wih serious risks, not least of which is rebound osteoporosis if you have to stop taking the medication. It is probably wise to find out if you can tolerate an older med first as you may end up having to take one of them anyway. However the dental problems need to be dealt with prior to starting any bone medication.
Prednisone is not going to help, but I have read that the most serious effects occur in the first three months of taking pred, so most of whatever was going to happen may already have occurred, and if you are able to safely taper to a low dose then that side effect becomes negligible. I know you want to reduce as fast as possible, but too fast and you'll be flaring and needing more, which is counterproductive. Advice about introducing a reduced dose more slowly is always good! If something like TCZ is offered and you can take it, that could be helpful. It seems to have worked to help some people reduce their pred dose quite handily, but I don't know how successful it is in allowing patients to get off pred completely.
As PMRpro says, MTX seems to be very hit or miss, and the only way to find out if you are going to repond favourably is to try.
In GCA TCZ will get half of patients off pred altogether, the other half get to a very much lower dose. Much more reliable than any other potential options - TCZ works to a greater or lesser extent for everyone unless they can't take it.
Hi. I think people have given great replies here so just wanted to tell you what happened to me. I too have osteoporosis, not as bad as you, my last scan pre-pred was -3.9 T score. I am on pred and TCZ the latter which I started 3 months in from diagnosis. Pre diagnosis i had very high calcium and PTH levels and so had scans Inc nuclear on my parathyroid. It turns out I have an adenoma on one and am due to have it removed. Because I started the pred the calcium levels immediately dropped and so there was no urgency with the hospital. I was told that normally I would have had the op within 2 weeks of the results, I am now 2 years down that line. The reason I say this is that it could, she says crossing her fingers, improve the bone health once removed. Just a thought.I started (after a 3 gram methylprednisolone iv) with 40mg of pred in Oct 2020. I did weekly injections of tcz from Jan 2021 until now where my Rheumatologist wants me to do fortnightly due to the funding expiring. I am at present on 4.5mg of pred. She seems to want me off pred by the time my tcz runs out.. who knows if that will happen, I'll take my own pace on that regardless of what she thinks. I will then have another dexa scan. I have had two zalendronic iv's and due my final one this December. Prior to that I was not medicated for the osteoporosis as I got lost in the system many years ago about the same time as my husband died and it just wasn't in my head at the time.
So a long post to perhaps ask them to check your parathyroid. Good luck. I'd be very interested I what happens next for you.
I was diagnosed with PMR 6 years ago and GCA-LVV almost 3 years ago. I was on pred alone, but experiencing regular 'relapses', so my Rheunatologist started me on TCZ, which I used for 2 years until the NHS funding ran out. TCZ enabled me to reduce the pred to zero in the time that I was on it. My Rheumatologist is reluctant for me to be on no medication at all, for fear that the 2 conditions are not yet in remission, so I am now on MTX! The plan is to stay on MTX for a year and then review the situation - I am 4 months in, so far.
So I am on MTX without pred, but that is after 6 years of pred, so a different scenario to yours.
I felt well on TCZ and would have stayed on it longer if funding had not been an issue. I have been fortunate to tolerate both TCZ and MTX fairly well with no major side-effects.
I am due to have a tooth extraction soon and may be advised to take some pred on the day. You should dicuss with your dentist and Rheumatologist. I had dental surgery when I was on 15mg pred and was advised to take an extra 5mg on the day. I also have osteoporosis, so will be followed up closely to check for healing after the extraction.
Are you taking a Bisphosphonate? My wife is having Prolia (spelling?) injections every 6 months having been diagnosed with osteoporosis post menopause (she’s not suffering fro PMR).
After I was told I had severe osteoporosis I too was taking off prednisone. We tried Methotrexate and it did nothing. We also tried a variety of other medications none of which worked like prednisone did. She did allow me to stay on 5 mg prednisone but I did not find much relief with this dose and finally decided to stop the prednisone and I stopped trying other drugs. I have a lot of other chronic painful diseases and PMR was just one of many. My PMR did eventually go into remission but when I got covid in June it flared back up. She allowed me to start back up on 20 mg of prednisone and slowly taper off. But the tapering schedule was much faster than what you normally would do for PMR. There is really nothing but steroids to treat PMR. I wish there were!
I will address Question #1 as am currently taking weekly injections of Actemra, along with prednisone, and was on Methotrexate until this past May. I decided to take myself off the Methotrexate after information and answers from this forum addressed the question of efficacy of Methotrexate in treating GCA. I do not believe the Methotrexate helped me, and actually felt better after about 5 weeks of being off of it. Who knows?But…in your situation, I think I would try the Actemra first. Was it suggested to take both Actemra and Methotrexate-that is what I was doing along with prednisone. My doctor felt the methotrexate was an added protection from flares. I am currently doing slow taper of 7 to 6.5 of prednisone but am having jaw pain, so might have to go back to 7.0 for a few more days. I wish you well! And hope whatever medicine you start on work’s well for you!
Coming late to this one but just my 5 cents worth on Q1 ... TCZ first! Comments on here over time suggest that Methotrexate is the one more likely to have side-effects. I haven't read one negative report on here about side-effects from TCZ. Personally, I "suffer" from mild neutropenia so jabs went from weekly, to fortnightly to 3 weekly, and the stuff still works. I had a flare at 0.5mgs pred, but that was brought quickly under control by a couple of days at 4mgs and then a return to 2mgs. I had stretched the TCZ dose to 3.5 weekly so unsure if the flare was due to lack of pred or TCZ. I'm back to 3 weekly jabs and currently on 1mg pred, and so I'm biased towards TCZ. All the best!
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Actemra???
Tocilizumab
Advice?
Update after a very long week
Tapering prednisone and PMR
