Are there other medications to take for PMR other than prednisone ?

[Paperroses]

Im currently taking 8 mg of prednisone and doing nicely at that level . My blood work showed my glucous levels are a bit high. My rhumi suggested in an email about using other means to get me off steroids faster. Any suggestions ? Im a bit concerned about the procedures for starting something else when still on prednisone.

[SnazzyD]

Not really other than steroid sparers that are used to reduce the dose rather then replace Pred. They are not guaranteed and are not totally benign either. You would still have to reduce quite slowly anyway from 8mg, to avoid adrenal insufficiency problems which the sparers don’t help with. Since you are doing nicely, it would be a shame to change things now.

So, have you cut out carbs drastically? By that I mean no pasta, rice, potato, flours, sugar etc. It’s a tried and tested way of keeping those sugars down when the Pred is forcing your liver to produce more on top of your dietary input. I started on 60mg and didn’t put on any weight and others have lost weight while on Pred. No idea why docs don’t tell people this. My docs were surprised when I told them which is a bit depressing really.

[Paperroses in reply to SnazzyD]

I had blood work 2 weeks ago and since then have cut carbs and sugar way back. I was starting to feel sick after eating sweets. I really don't want to start other meds that may have bad side effects. Had enough with prednisone and just starting to feel normal again.

[SnazzyD in reply to Paperroses]

Sadly some of us have to cut it to almost nothing. You could ask the doc if you can it and see what your HbA1c is after three months.

[PMRpro Ambassador]

I think any doctor who suggests adding anything for a patient who has got to 8mg or so needs to think long and hard. This is what is called a physiological dose - about the same amount of corticosteroid the body needs to function and which it produces naturally in the form of cortisol. From here on the reduction isn't just about managing the PMR - it is also about the adrenal function returning to normal and that only happens as a result of reducing the pred dose slowly.

The usual first option would be methotrexate - but it doesn't replace the pred, it MIGHT allow you to get to a slightly lower dose of pred but there are no guarantees. Like all drugs, it has its own adverse effects. They were too much for me, I lasted a month on it! It does work for some people but it isn't a speedy result - it can still take months.

You say prednisone - I looked at your profile but it doesn't say where you are, are you in the USA? If so your rheumi may be suggesting Actemra/tocilizumab. It has been discussed quite a lot on the forum. It can be used for PMR in the USA but not the UK or Australia. It will allow about half of patients to get off pred - but half still require a low dose of pred, often about the dose you are on.

If I were on 8mg after 15 months I think I would be reluctant to try adding something else. I would want to try a slow taper first. And with regard to the blood sugar - I'm sure you have seen we go on a lot about cutting carbs drastically. If it is your Hba1c that is high - lots of people on the forum have brought their levels down to normal just by changing how they eat.

[Paperroses in reply to PMRpro]

I have fallen into a pit with doctors. The first 2 I saw moved away, the current one I have seen once in January and will have phone meeting Thursday because of Covid. Just got blood work 2 weeks ago and after seeing blood sugar was up have adjusted diet. I was getting sick feeling if I ate sweets so now I see why and have begun to watch diet carefully. I really don't want any other medication at this point. Ive learned how to manage life etc through this forum and I feel great at 8mg. A little stiff in the morning and by afternoon almost normal. I was thinking its almost time to taper again. Ive had lots of side effects but they seem to have mostly cleared up. I would rather have a blood test in a month to see if sugar level came down than start something new which may have its own side effects. This doctor had suggested luflonimide at January meeting and I said no after seeing it probably wouldn't help and had its own issues. So thanks to all the advice I read here Im doing my best.

Im in the USA.

[PMRpro Ambassador in reply to Paperroses]

It will take more than a month for the Hba1c to show much movement - it reflects the average of the previous 3 months blood sugar levels. But it will move down. Do you know what the figures are?

Yes, leflunomide is the other option before you get to Actemra. It does work for some. But so does slow and careful tapering as you will know if you read much here.

[Paperroses in reply to PMRpro]

A1c 6.0

[PMRpro Ambassador in reply to Paperroses]

webmd.com/diabetes/guide/gl...

You are at a level that a diabetic would think great - and you can get back to normal. This is just a warning.

[Paperroses in reply to PMRpro]

aaaahhh. thank you. I will be watching diet .

[tangocharlie]

Steroid injections are another option - monthly injections of depo medrone - that is available but rarerly offered, you have to ask for them, I have them. If the problem is with raised blood sugar levels you need to switch to a low-carb diet to get it back under control - there have been many posts about it if you do a search. There are things called steroid sparers like methotrexate but if you're down to 8 Pred already that sounds like a drastic switch.

[SheffieldJane]

Methotrexate and its like are often suggested at this point. Doesn’t work for all PMR cases. Correcting blood sugars is a good idea though. I am very interested in Dr Josh Axe’s KETO. I already feel different.