No rhyme or reason

[aladymo]

I’m stumped. I’m feeling lousy. Diagnosed and on prednisone for 6 weeks. Was feeling 70% better. Have not done anything out of the ordinary ( I think). Last two days so sore ( different than original PMR pain). Burning in calf, shin heels. Hip pain and tired. Is this considered a flare? Can it come from nowhere?

[SheffieldJane]

What dose are you on? It may not have been enough from the start. PMR start dose is anything from 25 mgs to 15 mgs. 15 would not have been enough for me.

We can’t do normal activities. Everything has to be scaled down and paced. You may have overdone it if you resumed your normal level of activity. Then you do suffer muscle pain for days.

[aladymo in reply to SheffieldJane]

I started 10 mg. ( he didn’t want to start high and taper , felt 10 was enough). I felt about 70% better in a couple of days. But this “flare” I have now is not like original pain. I’ll wait a few days and see if it subsides. Thank you for you input. Appreciate it.

[Rimmy in reply to aladymo]

Agree with SJ probably not enough Pred to start on and ultimately 'tapering' IS the name of the game whether your doctor thinks so or not. Also if you overdo things you can get delayed onset muscle strain - you need to pace yourself physically and also even 'mentally' or there will be consequences.

Best wishes

Rimmy

[aladymo in reply to Rimmy]

Thank you. I could try 12.5 on my own for a week or two , but I’m scared

[Rimmy in reply to aladymo]

I would do that myself but obviously I can't advise you as a medical professional.

12.5mg is still a bit less than a standard starting dose for PMR of 15mg-25mg as is often referred to on this forum. People have varying levels of absorption as well so some may initially need more than others to produce a similar outcome. 10mg is certainly on the low side and given your symptoms it is very likely you do need a higher dose. It's up to you but 12.5mg is not generally anything to be 'scared' of in terms of potential side effects which are now thought not to be as bad as once thought - to be mainly manageable and/or temporary.

There are some 'experts' on this forum that will soon come to offer their support - when you read all the info I think you should feel more confident about going back to your doctor (who seems unaware of the current standard starting dose) and asking for a higher dose.

[Hidden in reply to aladymo]

I am sure it is scary. If your Dr had read guidelines s/he would know that 15mg is considered the lowest dose to start. 10mg might have give you relief and started depleting inflammation so you felt better but may not be enough to fully dampened it. I was on 15mg and the first month was great. Then I reduced to 14mg and for 4 to 5 months followed the 1mg a month and flared and ended up back at 15mg. On the pmrgcauk website I believe you can download and print the guidelines. There are also tapering plans devised by people who have actually tapered slowly based on the principle that slower is better. Some research/medical profs believe you should sit at 10mg for 12 months as it is less likely for a flare to occur. I will put a link to a range of articles etc that insight329 kindly collated.

The main advice. I can give is slow taper and pace yourself.

[Hidden]

You may have seen this before but it's useful and I have taken some copies to my GP. Don't know if she read it but she DX on first visit with symptoms and said minimum time taking pred would be 12months maybe longer. After 6 months referred to rheumy. But was too fast a reduction. Compared to some it's been a reasonably positive interactio@!

healthunlocked.com/pmrgcauk...

[Hidden]

Ohhhhh aladymo, I believe I know this well!!!!! I felt SUPER after I started on Pred... until I felt like CRAP!

Have you started reducing yet?

I had all kinds of weird signs, symptoms and side effects that made me feel WORSE than the GCA/PMR ever did! And when I started to taper, I had horrible withdrawal side effects! Still do! They last from 3-5 days and I feel like hell!

Everyone on this site (and it was confirmed by my Rheumy) said it was not a flare but Pred side effects, and withdrawal symptoms... I hope yours is the same. You can get through it!

[Celtic PMRGCAuk volunteer]

Aladymo, as Jane has said, it sounds as though either you aren’t on a sufficient steroid dose to control the inflammation or you have been overdoing things rather than taking things easy in these early days of treatment. The lowest recommended starting dose for ‘just’ PMR is 15mg and increasing to that dose for a few days should give you the answer - if your pain improves, you will have confirmation that 10mg was not enough to control all the inflammation and keep it there. I can understand you feel “scared” about taking steroids, but it might help to allay your fears about increasing the dose if we tell you that some of us with the sister condition GCA had starting doses of 40mg and even double that, and nothing happened to us - we are still here to tell the tale!

However, one query arises in my mind from you saying that “it is different from original PMR pain“. If the calf pain involves just one leg, do get it checked to ensure there is no sign of a clot developing. And do speak to your GP about increasing the dose.

[aladymo in reply to Celtic]

Have a referral in for a vascular dr. Hopefully won’t wait too long. Not afraid of taking steroids , afraid of medicating myself ( as dr told me 10 was enough if there was pain reduction) 😱

[aladymo in reply to Celtic]

Went to vascular dr. There is a blockage in right leg ( artery in thigh). As of now they will do nothing , but follow me closely. Exercise is the best medicine. I feel a bit relieved to know as of now it’s not life threatening. Likely PAD or vasculitis . He feels it’s all related to PMR , but Says the rheumatologist is more qualified to answer.

[PMRpro Ambassador in reply to aladymo]

Hmm - I wouldn't be as sure as he appears to be!!!!!!

[Celtic PMRGCAuk volunteer in reply to aladymo]

It must be a relief to at least have an answer to your leg pain - not everything is always down to PMR as I hinted at in my previous reply. However, I’m not too sure that I would be happy about being diagnosed with a blockage and being told they will do nothing for now. I would push to at least see the rheumatologist as soon as possible..... and hope that he is someone more proactive! Good luck!

[aladymo in reply to Celtic]

The vascular surgeon said there was things they could do , but might do more harm than good. He will keep close watch and monitor me ! Yes I will definitely discuss with rheumatologist. It’s scary yes 😱

[Celtic PMRGCAuk volunteer in reply to aladymo]

Well at least when you see the rheumatologist you will have a second opinion. As there is a risk of PAD in patients with PMR, wIth any luck the rheumy will have come across it before and speak from experience. Good luck!

[aladymo in reply to Celtic]

Thank you

[PMRpro Ambassador in reply to Celtic]

Celtic - There often is no point doing anything to start with other than exercising to improve the collateral circulation to see if that improves the pain. If the blood flow is stopped completely then they might do a bypass operation - but it all depends on how much is blocked and how it is blocked. OH worked with a top vascular surgeon - that was how he went about it. There aren't always things you can do with drugs or surgery. And a rheumy won't have any more answers than the vascular surgeon. PAD happens without having had PMR - the problems are the same and it is very common.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Ouch! Let’s hope that exercise does “improve the pain” for aladymo - if it does, will that mean the blockage can also resolve?

[aladymo in reply to Celtic]

As far as I know the blockage will not go away. But PMRpro explains it perfectly. Fingers crossed the circulation improves. It’s very slow gong. I used to walk 10000 steps a day , now I am 2 minutes on the teadmill - on my way ✔️

[Celtic PMRGCAuk volunteer in reply to aladymo]

Good luck, and know that we’re rooting for you all the way!

[PMRpro Ambassador in reply to Celtic]

Unlikely - it is just bypassed. There is probably some blood getting through the narrowed artery - if there weren't aladymo would be complaining of what is called "rest pain" which tends to happen at night or when just sitting. As it is, it is only when the muscle is asked to do extra that there is inadequate blood supply and lack of nutrients/oxygen which then leads to the pain due to lack of oxygen. If the body is encouraged to create new blood vessels by making the demand for oxygen it can often do it very well and enough blood gets through to reduce the pain.

[aladymo in reply to PMRpro]

Hope so ! Thank you very much for this positive approach as I’m not feeling very good at the moment (Emotionally). Just one thing after another😭

[PMRpro Ambassador in reply to aladymo]

You should have seen me 5 years ago! It was my GP who did the positive bit - I was a crumbling heap all summer!

[aladymo in reply to PMRpro]

I tell you, you’ve been my saviour 👍

[Celtic PMRGCAuk volunteer in reply to PMRpro]

That's interesting stuff you've educated me about today! Somewhat reassuring for aladymo, to hear too, I'm sure.

[aladymo in reply to Celtic]

You bet ! Going to gynecologist tomorrow, better not be any out of the ordinary diagnosis! A year ago I only had her as my Dr. Now I have rheumatologist , neurologist , GP, and vascular surgeon. Might soon be in the market for a psychiatrist 🤣

[Celtic PMRGCAuk volunteer in reply to aladymo]

I know the feeling! Between us, hubby and I are under seven consultants. No psychiatrist....yet!🤣. Keep smiling and good luck tomorrow,

[aladymo]

Thank you again for all your replies. Just printed out posts “spoon theory” , “gorilla in your house”. I’m a work in progress 👍