Prednisone Taper Companion Drug

[Macadoo]

What is a good companion drug to help taper from prednisone? I’ve been taking Prednisone for over 1 year, currently on 5.5 mg daily and can’t seem to get below.

[TheMoaningViolet]

Hi, given that you started on 50mg, I'd say that you are doing too well to be thinking of any other medication just yet.

[DodiR]

Doucement, langsam, slowly slowly......

I have also been on Pred for just over a year. Finally got down to 5mg about 4 wks. ago. Now my Dr. has recommended I STAY PUT for at least 6 months before even contemplating further tapering.

Yes I understand anyone wishing to get down or come off Pred asp BUT it just doesn't work like that for the majority of people.

For me the moto doucement, langsam, slowly slowly has helped all along on this awful journey with PMR and Pred.

[PMRpro Ambassador]

To have got to 5.5mg in a year is actually well ahead of the curve - the median is just under 18 months with a starting dose of 15-20mg. If it is PMR - what on earth was your doctor doing starting you at 50mg? That really is excessive by any standards unless he suspected GCA.

You are not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms effectively to use long term until the underlying autoimmune cause of the inflammation that gives rise to the symptoms we call PMR burns out and goes into remission. That can take years - the median duration of pred management is just under 6 years - only 1 in 5 patients is off pred in under a year. There is no cure for that - just time and patience and the pred allows a better quality of life in the meantime.

At this stage you are now taking what is called a physiological dose - the same as or less than the equaivalent to the natural corticosteroid your body requires to function and which it produces as cortisol. Taking less pred just means you body must top it up to the level that is required to keep you going. It is considered a relatively safe dose with few adverse effects.

There is no drug that will stop the PMR, except tocilizumab/Actemra which interferes with the production of the inflammatory IL-6 cytokine that causes the inflammation in many patients. It is approved for use in GCA, where it allows about half of patients to get off pred entirely and the rest to get to a much lower dose. In the USA there are doctors who are using it in PMR - I have no idea how they get the funding as it is not approved for use in PMR. It is a biologic so very expensive and also has adverse effects - a few people on the forum can tell you their experiences.

DMARDs may be used alongside pred as so-called steroid sparers - sometimes they work, sometimes they don't and all of them have potential adverse effects. Methotrexate and leflunomide are the most commonly used and there are past clinical studies which aren't terribly convincing and a couple currently ongoing/waiting for funding.

But I would say it really isn;t something to be worrying about at this stage. Being on 5.5mg of pred alone seems preferable to me to adding in another drug together with its potential effects when there is no guarantee that will get you off pred. And there isn't.

Just keep on creeping down until the symptoms reappear - slowly is the key - and maybe it will be under 3mg. A top rheumy says he sometimes keeps patients at 2-3mg indefinitely as it reduces the risk of relapse and returning to higher dose pred.

[autumnlass in reply to PMRpro]

We are all so very fortunate to have you, Sheffield Jane and Dorset Lady by our side, and to the knowledgeable others, to give us such supportive and caring information about this horrid disorder. Thank you 🤗 all so much.

[phebamom in reply to PMRpro]

I have been on pred for 10 years. My stomach has been bleeding since last June. I am receiving my 4th infusion of Actemra later in May. Shots did not work. I have PMR/GCA, 20 years PMR, GCA for 10. diagnosed with biopsy in 2015, verified Mayo clinic 2017. currently on 6mg prednisone, lowest I have been in years, thanks to Actemra. I tried getting down to that dose in the past. All would be fine for a few weeks, I would be singing the praises of prednisone then SED rate would go roaring back up. It is a roller coaster ride I am weary of. It is now imperative that I am completely off of prednisone. Biopsy of stomach tissue confirmed; it is prednisone causing stomach to bleed. I understand the risks of Actemra, but in my case I have no choice. 10mg. of pred kept SED down to 70s or 80s. My SED rate last infusion was 52, so we are gaining on the situation. I am on lower dose of Actemra. If SED is not down at 6 months, rheumatologist plans to go to higher dose. Actemra is having a strange way with me. On the one hand I am able to do more and be more active, on the other hand I tire easily. I know it sounds like a contradiction, but I can feel Actemra working on this disease, even though it causes fatigue. So far, fatigue is the main side-effect. I find I go to bed much earlier in the evening but I can actually sleep now The pain is improved, and the gastric issues are no longer causing my blood pressure to skyrocket at night. My hair is thinning, but it was doing that before. Other than that, and an increase in skin ulcers, I see no side-effects from Actemra. Does anyone else have skin ulcers with this disease. I used to get them on top of head, forearms, and upper back. I no longer get on arms or head, just my upper back. Since starting Actemra there are about 10 of them, tiny round ulcers. They itch and take weeks to heal. I have been told they are stress related. Mayo clinic biopsied them with no result.

the one piece of advice I can give is this: If your physician advises you to take a PPI or H2 blocker with your prednisone, listen! The damage to your intestines with prednisone is insidious. One person told me that the thin skin on the outside is the same thing prednisone is doing to lining of stomach and intestines, it sneaks up on you. I took 10mg. of Pepcid AC since I can't take PPIs. Now am on 80mg of Pepcid AC just to control the damage. take your stomach meds with your prednisone,

[DorsetLady PMRGCAuk volunteer]

I’ve been taking Prednisone for over 1 year, currently on 5.5 mg daily and can’t seem to get below.

Simple answer is because that’s the dose your illness needs at the moment.....doesn’t mean you won’t get below it in time, but not just now.

Having got to 5.5mg in about a year just be thankful you’ve managed to get that low - many people will be very envious.

[Macadoo in reply to DorsetLady]

Thank you to Dorset Lady and all others who replied...very much appreciated!

[SheffieldJane]

As above. It might help if you concentrate on building up your health and fitness, cutting carbs and sugar from your diet and gently building up a muscle strengthening programme. I would also ensure that I saw a well equipped Optician on a regular basis, for thorough eye examinations. Eat a calcium rich diet and take vit D and vit K2. Keep an eye on your blood pressure - invest in your own little machine and have your blood glucose levels measured too. In short, because PMR can drag on stubbornly for years, it is a wise idea to minimise any damage that Prednisalone might do. The last thing you really want is more horrible drugs along with their side effects. Unchecked inflammation can do a lot of harm, so you do need our one and only clever little drug.

Five years on, this is what I would do from the outset, not in the piecemeal, stop start way that I have. It is easier to be the fence around the top of the mountain than the ambulance at the bottom.

[Umufu]

Hi Macadoo, wanted to post a similar question today, have been researching curcumen/turmeric to assist me in tapering from 7.5mg and waking up my adrenal glands. PMR+GCA for 3 years, on steroids for 2 years from 60mg after 1 year of refusing Pred. Has anybody tried Turmeric and lived to tell the tale.? I am 81 years old and have planned for some more. 🐌🤓

[PMRpro Ambassador in reply to Umufu]

You would be much better posting as a new question because people who have already seen the thread are unlikely to look again unless they are following it.

I do know a lot of people who use turmeroc in cooking and are sure it helps. Taking turmeric as a supplement is a bit different - the doses in supplements are high and not without side effects. You should be particularly careful if you require anticoagulant medication of any sort as it is a natural anticoagulant.

[Umufu in reply to PMRpro]

Thank you very much for your reply which was an important reminder to what I learned some years ago but forgot. I am on Apixaban 2.5 bid and would be asking for trouble unless I substitute one for the other....but do not want to risk it.

Thanks again, stay well in lovely Italia. X

[PMRpro Ambassador in reply to Umufu]

The turmeric is definitely not reliable enough - and my husband had problems with apixaban getting to dangerous levels in the blood so switched back to warfarin. I wouldn't want to add to the effect!

[Umufu in reply to PMRpro]

Yes, better to stick to the devil one knows ...I will be alright, have learned patience over the years. . Thank you again.