Think I’m having a flare

[Julesster84]

I have been dealing with my doctor thinks pmr at least my second doctor thinks it might be that. I got diagnosed in 2017 so dealing with my second year of pain and not feeling myself. The first doctor started me on 10 mg of Prednisone and 4 a week of methotrexate. Most times I just feel pain in my right shoulder, and I have been weaning myself for a year and a half. I am now down to 3 mg but the pain in my shoulder now is excruciating. I can live with some of the pain but today or rather this week it’s been almost unbearable. I am guessing it’s a flare up and maybe I should up my steroid. I just did a blood draw last week and they came back great. But I don’t feel so great and it’s almost deflating. I am also trying CBD oil, gummy‘s, TylenolWhen I feel pain. But I can tell you it hurts like hell. I am a 58-year-old woman that when I get up in the morning I feel 85. Any insight or help or guidance I would so appreciate it.

[teesher]

Hi Julesster, I'm four years down the line with pmr and only got to 2.5mg in the last few months. Other experts will be along soon but it sounds like you need to up your dose to a level that controls your pain. The strong mantra on this forum is slow and steady. I felt exactly like you - about 85 (and I'm just a kid of 61 but today I walked thirty minutes home from the shops with two bags of shopping. That would have been impossible just a couple of years ago. You will get there. Stay with this forum - it is a fantastic source of information and support.

[Julesster84 in reply to teesher]

I’m I wrong to want to get away from steroid I’m I going to fast?

[Hidden]

Hi julesster84. I just wonder if you had just dropped and by how much? It reminded me of my shoulder pain that seems to be my sign of steroid withdrawal. Within a day of two of dropping by even 0.5mg i get terrible pain in my right shoulder. The first few times i got it i didnt realise it was SW and thought it was a flare so upped the pred. The last few drops i have taken co-codamol for a few days.

Of course if not near a drop please ignore me!😂

[Julesster84 in reply to Hidden]

What is that

[Julesster84 in reply to Julesster84]

I’ve dropped around a month ago, my Rheumatologist suggest 1 mg a month

[Hidden in reply to Julesster84]

Its most likely not steroid withdrawal then as that occurs about 1 to 4 days after you do a drop. Then it goes as your body stops protesting about the missing pred. If the pain starts about 1 to 2 weeks into the new dose then most likely a "flare". For me the sign i was flaring was burning painful thighs.

Tbe dr/rheumy narrative always seems to be 1mg but the mantra here is symptoms rule. If you cant do a 1mg because symptoms return. Go back to the dose where you last felt ok. Let it calm down for a while (i did 2 weeks at higher dose), then try a 0.5mg drop or do one if the dead slow methods

[Julesster84 in reply to Hidden]

When is the best time to take dosage in ur opinion

[Hidden in reply to Julesster84]

It depends on the person and whther you have coated (coloured) or uncoated (white). I understand the latter disperse in your stomach so work in 1 to 2 hours (white). The coated pass through the tummy and disperse in 4plus hours. For pmr some take them on a night, some in a morning and others split the dose. Its a case of trial and error.

I dont know if you know that your body basically dumps the gunk that causes inflammation 4amish. Some people take their coated pred at night so it kicks in about the time gunk is dumped (technical term). Others at 2am for tbe same reason. I take mine when i wake and that usually works for me. I probably havent explained it very well. You can Google cykotines...the gunk...to see what tbe process is.🤔

[Julesster84 in reply to Hidden]

Great words!! Thank u

[SheffieldJane]

It seems to me that your drug regime never really got on top of the PMR inflammation. 10 mgs is a really low start dose for Prednisalone with PMR and if arthritis is not present the Methotrexate won’t do much. Start doses are more like 15 mgs to 25 mgs. Mind you, if you’ve coped and got down to 4 mgs then hats off to you.

Has the awful pain in your shoulder been investigated separately? PMR can trail other treatable conditions that can effect joints separately. That is perhaps an avenue that you could explore with your doctor. The other Course of action is more Pred ( depressingly). PMR can last for years and you can’t carry on in so much pain. Sorry not to be of much help to you.

[Julesster84 in reply to SheffieldJane]

Trying to figure out dose and when to take?

[SheffieldJane]

The advice for a flare seems to be an extra 5 mgs to see if that settles it. What does your doctor suggest? You don’t seem to have experienced the dramatic relief that I did, starting at 20 mgs.

[Marymon]

Maybe the shoulder is OA, I was down to 7mg after 12 months, ok except for shoulder and hip pain, X-ray s showed severe arthritis in both. About to have a hip replacement, and injections in shoulder. Pain from other sources can be masked by Pred.

[Telian]

Hi Julesster,

If you do have PMR the starting dose your doctor put you on is low - usually 15mg minimum up to 25mg for some. The idea is for you to take enough pred to treat your level of inflammation and being pain free. Have you ever been pain free? Only then do you start to reduce the pred gradually. See DL's DSNS taper as a guide remembering we are all different and you adjust to what works for you.

You might get steroid withdrawal pain/discomfort on the day you reduce which should go after a few days. Take paracetomol to help deaden the pain. If they don’t go you’re not on enough pred to treat your level of inflammation. It is an individual thing as to how much you take.

I would also question what is wrong with your shoulder and ask for an x-ray to rule out arthritis. I would also ask for a referral to see a Rheumatologist if only to get a correct diagnosis then your GP can manage you. It doesn’t seem you’re current management has been that effective being in pain for the last two years.

I would take an extra 5 mg and see if it helps your pain - increasing to a max of 15mg - if your pain goes you know it’s PMR. Staying on that dose until all symptoms have settled before reducing again slowly. If it doesn’t work you can come back down and see a doctor soon for further investigation. Is there another doctor in your practice for second opinion?

Let us know how you get on.

[Thelmarina]

So difficult to think straight when in pain and feeling uncertain! We’ve all been there! Others will chip in but my feel is that your dosage isn’t high enough and that the pain in your shoulder should be investigated in case it’s symptomatic of something else. In either case you may need more Pred to cope. Why not try increasing the dosage to see if that helps. Start with an extra 5mgs. You can always reduce again. Good luck!

[nuigini]

Have you had the shoulder pain investigated for causes other than PMR?

Personally, I only consider bi-lateral pain as PMR. I occasionally get pain in a shoulder or hip which I treat as bursitis of myofascial pain.

[daworm]

Has bursitis of your shoulder or a rotator cuff injury been ruled out?? Especially if it stays localized to one shoulder?? I’ve always had some shoulder problems along with OA of the knees...far differant than PMR and that’s how I knew I had something other than just worn out old age stuff...a spreading across the upper body and arms of pain & stiffness plus a general feeling of being lethargic...that’s when I knew it was something differant...

[Julesster84]

Update

I contacted my Rheumotogist and she is wanted to MRI my shoulder, would be nice not to have PMR but have been dealing with this a while. I up the dosage to 5mg, Im a chicken to up it by 5mg, so only upped it by 2mg. Its insane that this just go away or feel different. My morning routine is rubbed with biofreeze, hot shower, 3 tylenols and now 2 CBD gummies. At night I take 5mg of prednisone before I go to bed. I know I can not do this forever......

[Hidden in reply to Julesster84]

Not if 10mg for a week would zap those pains. It's hard to do but I used it as a lifeline. If the blast worked after 2 days I waited 4 weeks then dropped.

I was reading this this morning. The take away message is that if the initial dose is too high, or the taper not slow enough then relapses occur more frequently. Not slow enough.

ncbi.nlm.nih.gov/m/pubmed/1...

[PMRpro Ambassador in reply to Julesster84]

I'd rather take the right dose of pred than mess about with Tylenol. Safer - and it works.

Pred isn't forever for most people, PMR is a chronic but usually self-limiting problem which resolves in a median time of just under 6 years, often sooner. Using the right dose of pred properly means that overall you end up having less pred and fewer problems. Most adverse effects can be managed or minimised when you know how and are disciplined. But all chronic illness requires disipline - no getting away from that I fear.