PMR Relapses

[SandraLinks]

I was diagnosed with PMR in October of 2019 and keep having relapses when I try to descend on my methylprednisolone. I started out at 20 mg. and am now at 8 mg., but every time I try to go down to less than 8mg., I have painful, debilitating relapses after about 3 weeks. I’m so depressed about staying on this medication because of all the side affects, but I can’t stand not being able to move. Has anyone experienced something similar?

[suzy1959]

These are the joys of this condition!What a lot of us have to learn the hard way is that our bodies won't let us reduce the steroids too quickly or too far.

We are not cured yet, and so we are trying to find the lowest steroid dose that our bodies need. It looks like 8mgs might be yours. In nearly 9 years of PMR, I have not got below 9 mgs at all! There are a number of reasons for that but I am just letting you know that there are many and varied experiences on this forum as we are all different!

[SandraLinks in reply to suzy1959]

Thank you for your response. I’m hoping to be able to descend, but I do realize that it may take years, if at all. My doctor wants me to take methotrexate along with the methylprednisolone, but I’m worried of more meds.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are looking for the lowest dose that gives the same relief from PMR symptoms as the starting dose did. It sounds as if you have reached your destination for now at 8mg. It doesn't mean you won't get lower - just not yet. You will get off the corticosteroids when the underlying autoimmune part of PMR burns out and goes into remission - not before.

You don't say on your profile where you are - it is quite unusual to use methyl pred in the UK so do I assume you are in the USA? I started on prednisolone in the UK and had no real problems. I lived in Italy art of the time at one point and ran out of the prednisolone so was switched to Medrol/methyl pred which is what they usually use in this region. Within weeks I felt "different" and not as well. Over time I needed more and more Medrol to manage the symptoms and eventually needed 20mg to get any relief and even then it took until the afternoon. I had horrendous adverse effects and became extremely Cushingoid as well as having skin and hair problems. I had a beautiful black beard!! Eventually my GP suggesed I switch to prednisone - in the form of Lodotra (Europe)/Rayos(USA). The first day I took 15mg and got the same miracle response as I had had originally. That is a much lower dose than 20mg Medrol. I lost the weight with a low carb diet and all the other adverse effects also resolved and I was able to reduce the dose over time.

I have never had any problems with either prednisolone pr prednisone - apart from not being able to reduce the dose very easily! But it works well, I have no sign of diabetes, my weight is stable, no sign of osteopororis (almost no change in bone density over 11 years) or any other adverse effects.

Could you ask your doctor if you can switch to either prednisolone or prednisone, whichever is available to you and see if your adverse effects improve? Alternatively - what are your adverse effects? Most can be mitigated or avoided altogether when you know how - maybe we can help.

[SandraLinks in reply to PMRpro]

Thank you for your response. These responses are tremendously helpful. I am in the US. When first diagnosed, I was given Medrol for about a week and had a wonderful response, very quickly, so my Rheumatologist switched me to prednisone, because it is easier to reduce due to mg. availability, but it wouldn’t do the job, so I had to go back on methylprednisolone.

I have a few side effects such as thinning hair and skin and rounded face. I haven’t had any weight gain, but seem to have some water bloating, which could be due to my diet. I’m just grateful for this sight to be able to talk to others and I am extremely grateful for the advice.

[PMRpro Ambassador in reply to SandraLinks]

We don't just suggest cutting carbs but also salt - and cutting processed carbs achieves both together. Defiitely helps fluid retention - if I eat out 2 or 3 days in a row my feet go up like footballs!