Advice needed

[Marilyn1959]

I have Rheumy appointment Tuesday and need some advice.

Diagnosed PMR June this year. 15mgs miracle. Tapering has been a problem. Since diagnosis Osteoporosis -2.5 T score on one vertebrae in spine, Osteoarthritis in knees, borderline diabetes type 2.

Rheumy wanted me to go on Alendronic acid I refused, until they looked at previous DX scan results. They have sent me leaflet for injections every six months but this mentions Osteocronosis of jaw. Four years ago I had two operations on jaw as it was crumbling. Shards of jaw bone sticking out of gums (like sharp fish bones!). Don't know the official name for this, so have again asked for them to get hold of previous records.

Problems with eyes have been resolved with second opinion via different optician, new glasses brilliant, old ones prescription too strong!!!!

By changing to night time meds have managed taper to 13.5mgs successfully (a month) so am now trying 12.5mgs. Think any symptoms are withdrawal related not PMR related, so sticking with it though once again sleep patterns awry!!! Also low mood - hence suggested withdrawal???

I am concerned that Rheumy will try to put more meds into the mix because of problems tapering from relatively low starting point. Whilst I have looked through posts I am very confused about options and am concerned re contraindications of any meds that they might suggest.

So in prep for my appointment do you have any suggestions as to Osteoporosis med alternatives that have worked for you?

What meds might be considered to go alongside pred or replace pred when tapering and what impact might they have?

In your opinion is my taper particularly slow????

Thanks.

[HeronNS]

Addressing the osteoporosis concern. Your t-score indicates you are just on the border between osteopenia (low bone mass) and osteoporosis, a level rather arbitrarily set some years ago by the WHO. My t-score was -2, which is not considered osteoporosis but nevertheless my doctor wanted to put me on AA and was even more insistent after she attended an OP workshop! I refused and started a regimen which included taking a supplement designed for strengthening bones which included calcium hydroxyapatite which I've read is better absorbed than other forms of calcium by people on pred. I take a Vitamin K2 supplement as K2 is lacking in the average Western diet. I also upped my game with nutrition, eating lots more leafy greens, prunes, adding fermented foods, like kefir, various fermented veggies. Kefir, yoghurt and some cheeses are the best forms of dairy for those struggling to improve bone health. Liquid milk alone has not been shown to be especially useful. Weight bearing exercise, as much as you can manage, is important. Some people can only do pool exercises and even this is helpful because stronger muscles will exert more pull on the bones and help strengthen the bones. I walk a lot, have taken up Nordic walking and tai chi, and wear a weighted walking vest (when I remember). All these will work to strengthen bones as well as improving balance. As falling is the greatest risk for fracture, not bone density, improving and maintaining a good sense of balance throughout life is a good idea. In one year my t-score improved to -1.6. I will not be eligible for another scan for a few years. But I realize this is now the way I have to manage my bones for the rest of my life.

My sleep improved after I started taking one of my calcium supplements about half an hour before bedtime with a small snack.

After you've achieved 12.5 reduction I suggest you not taper by more than 1 mg at a time, and consider using one of the slow taper plans. Nothing currently availble to us works except the corticosteroids. As you have been successfully tapering so far I doubt you will need any of the so-called steroid sparing drugs as they may do nothing more than add a layer of side effects. It's recently been shown that long term low dose steroid therapy is not nearly as damaging as had been thought, and some of the alternatives doctors offer us seem to be more damaging.

In conclusion, I have to say, considering your medical history it's shocking that mention of AA would even cross the lips of any of your doctors.

All the best!

[Marilyn1959 in reply to HeronNS]

Hi Heron. Thank you for your response. With your words in mind and past and current t scores compared at last, Rheumy agreed that AA was not currently needed, nor any substitute. He was not, however pleased with taper and at one point said he needs to take me off pred!!!! I argued the toss and discussed taper plan. I wouldn't mind but he said I needed to be in control of my treatment, then had to battle. However only feel strong enough to do so thanks to members on this site. So no steroid spares or AA - thanks for your help.

[HeronNS in reply to Marilyn1959]

I know PMRpro will be along with her take on the tapering scheme proposed by your doctor and some of his/her other statements. I admit I find the thought of toggling back and forth between 12.5 and 10 daunting. No reduction should be more than 10%. Although some people have successfully used the method of alternating doses in this case the difference between the two doses is, in my opinion, too large. It really shouldn't be more than 1 mg. I think following the dead slow taper suggested by PMRpro would be a lot easier on your body and much more likely to be successful, leading in the end to a lower total dose of pred. Again, from personal experience, I tried an alternating scheme at a much lower dose, only by .5 per day, and found it seemed to confuse my body and in the end I gave up the idea. It definitely didn't speed things up at the time, the reverse in fact.

Just how long was your doctor expecting you to toggle back and forth, and afterwards how long were you to stay at 10?

[Marilyn1959 in reply to HeronNS]

A month back and forth, a month at 10mgs, then 1mg from there. In case I am successful and hit the wall I have bloods form and access to Rhemys secretary for back up. Have next appointment in March so have three months. So I am staying at 12.5mgs morning meds over Christmas. Then in January, instead of alternating I think I will try to go down to 12,11 then 10. Have ordered more 1mg tabs in prep! Unless there is a medical advantage in what Rheumy advocates I can't see the problem in my way as opposed his way can you? When I questioned he even said there was no difference, same end result but he wanted me to try his way, yet also wanted me to take control????? Have to say though, despite the fact he was running late, I was with him for a good 30 - 40 mins as he looked at info and discussed my case.

[PMRpro Ambassador]

That isn't really a relatively low starting point - it has been the starting point for most people really. And many people struggle a bit - especially if they are trying more than 1mg at time or not using a slow approach.

This is the one I used and is being used in a clinical study in PMR patients in Leeds:

healthunlocked.com/pmrgcauk...

You can choose the speed - starting with 1 day new dose, 4 days old dose seems to work for most people, it takes about a month to reduce but your body has a chance to get used to the new dose by being challenged with it 1 day at a time at first. This reduces the withdrawal symptoms and makes life more comfortable.

A quite usual taper would be 6 weeks at the starting dose and then 1mg per month thereafter.

The -2.5 is a spinal reading - what is your hip figure? Spinal readings are often slightly less good than hip ones.

Like Heron I'm a bit taken aback at the insistence on bisphosphonates in someone with pre-existing jaw problems. I would want real expert advice there - not from a rheumy or GP.

And a final note - you can reduce your Hba1c levels (reflects the average BS level over the last 3 months) by cutting carbs in your diet drastically. One lady has reduced her Hba1c level from 6.5% (cut off for diagnosing diabetes) to 6.1% just by doing that.

You haven't really been at tapering long enough to say you can't - so myself I would not be keen to add in a so-called steroid sparer with a potential set of their own side effects. They don't replace pred, nothing does, and don't necessarily help reduce the dose any better than slow careful reduction. With my first "easy" 6 weeks course of pred and stop, I was fine on 5mg but back as bad as before 6 hours after missing the first 5mg tablet. It took me a long time to get below 10mg again - some people do.

[Marilyn1959 in reply to PMRpro]

Thanks for your response PRMPRO. Outcome no AA, since they finally looked and compared results going back six years. And yes one vertebrae slightly increased t score but not significant. Rest unchanged in six years. They are still waiting for other hospital to send jaw info. No steroid sparers either, though Rheumy not happy re tapering. Have agreed on next steps - time will tell. It includes 12.5mgs 10mgs alternate days. The alternate days haven't worked for me before but he is still insistent I try this approach rather than a shorter two step approach. I didn't ask him why? Any ideas?

I had changed timing of meds to night time. This was a definite no no in Rheumy's book, despite my seemingly improved status. His argument is that it will further suppress Adrenals kicking in at later stage, so am back today taking them in mornings. Already knees are swelling again on day 1! However this now attributed to osteoarthritis rather than PMR, so presumably pred makes a difference to osteoarthritis as well?

You mentioned consulting with an expert, not Rheumy or Dr. What would be your suggestion of title of professional?

You are quite right - I need to help myself via diet!

Many thanks for your remarkable support

[PMRpro Ambassador in reply to Marilyn1959]

Blinkers probably. Why would a patient have a better way than a doctor? There is a definition of madness: repeating the same procedure and expecting a different result...

The "expert" was for the AA - and that seems to have resolved itself.

I wouldn't tell him when I was taking my pred. At the present time it makes no difference, there will be adrenal suppression anyway after more than a couple of months at above 10mg. It won't really matter until you are well below 10mg. The taking pred in the morning applies for patients on short-term pred - so that when they stop the adrenals just take up the slack without a hiccup or needing a long slow reduction.

I had knee problems - and it is often a part of PMR. A rheumy assured me I had OA in hands and knees, she could "feel it". What she did was miss PMR. After a few months on pred the "OA" pain had gone - and there has been no evidence that anyone else has noticed. Knee pain hasn't returned when I got to low doses.