PMR flare or something else?

[wendyanne49]

Hi. As a quick update I have been on steroids for PMR since Jan 2012. Up and down like a yo-yo over that time with flares, possible GCA which took me to the staggering heights of 60mgs Pred over 18months ago. Referred last year to rheumatologist who advised Methotrexate so I can reduce Pred and eventually come off it. In September 2017 I began to have serious lower back and hip pain along with the now familiar buttock and thigh stiffness. These symptoms had always been treated by my GP as a flare. Steroids would be increased, my symptoms would abate and back on the reduction etc etc. When I last saw my consultant she observed my stiffness and difficulty with mobility but was adamant that as my blood tests showed no increase in inflammation levels that my pain wasn’t related to PMR and I quote “ PMR doesn’t usually affect the lower back. It’s mainly neck and shoulders”.

I had x-rays to eliminate spinal fractures or other damage and apart from wear and tear(I am 68) nothing seriously wrong. Was advised to carry on with Methotrexate (15mg weekly) and to reduce steroids slowly until I was on 5mgs and to stay there until next appt.

My body aches. Walking, sitting, getting out of chairs etc etc is very painful. Thighs ache. But a new symptom. Painful joints in my hands and sometimes quite swollen. The pain in my back often feels like it is burning and the discomfort spreads up to my shoulders. Particularly when I am sitting at a slight bent angle while doing craft work like sewing.

I am waiting for an appt with the rheumatologist to report on my progress (ha!) and have got an appt with my GP in 10 days time ( earliest I could get).

So. If this is not PMR related what could it be. Codeine doesn’t have any effect on the pain nor do paracetamol.

Do these symptoms sound familiar to anyone? Any advice would be really welcome as I admit to having the odd cry now and then. Both in frustration and pain.

Many thanks for reading this 😘

[Hidden]

Hi wendyanne,

Is your pain worse in the second half of the night? Does exercise make it better? Have you ever shown anyone your painful hand joints, do the fingers swell and look like sausages?

Any personal or family history of Psoriasis?

Sorry, lots of questions!

[wendyanne49 in reply to Hidden]

Hi. Pain lasts during the night but not worse in second half. Exercise doesn’t make it better. Not seen medical person re hands. Not like sausages. Just tight and show fluid retention. No history of Psoriasis. . Rheumatologist did say that there was slight OA in hands when she saw me in September. Thanks for your interest and help.

[PMRpro Ambassador]

I think you could do with a new rheumy who lives in the real world. If it isn't PMR - it is something and it is time she did something! You need someone who looks at the patient not the lab results.

First of all - Keyes has started the questions. More details would be helpful to generate ideas about other things. Even if you don't think it is relevant. And where are you? (just generally, not your address!) Though I imagine it is the UK? And would private be an option?

I have low back pain. I only have PMR. There is a lot of low back pain that can be associated with PMR. It is very common to find both myofascial pain syndrome and piriformis syndrome alongside PMR and they cause low back pain. Low back pain can also be caused by sacroiliacitis - and that is worsened by leaning forwards. Myofascial pain syndrome is caused by the same inflammatory substances as PMR except instead of being systemic (all through the body) they are found concentrated in trigger points which can form in the shoulders, about rib level and in the lower back, where the baby's dimples are. It will improve at higher doses and then return as the dose falls. Direct treatment of the local problem works far better.

I'm not surprised you are reduced to tears - I am too at times and I KNOW what my problems are and have doctors who take them seriously!

[wendyanne49 in reply to PMRpro]

I am in Suffolk. Your observations are so helpful. I’m reticent to go back to a higher dose of steroids. But is there another option? What other info do you need? Am v grateful for your help.

[PMRpro Ambassador in reply to wendyanne49]

There is no alternative to steroids in the UK if what you have is PMR/GCA.

Does this

medpagetoday.com/rheumatolo...

make you feel any better about pred? I've been on pred for over 8 years - I have no side effects, no suggestion of diabetes, I gained weight, I lost the weight, my bone density is stable without taking alendronic acid, no cataracts, no raised eye pressures. Below about 8mg or so the side effects are minimal - or you might have developed the problem anyway.

If a small increase in dose helps a lot - do it.

Which hospital in Suffolk are you under? And is private an option?

[wendyanne49 in reply to PMRpro]

Thanks for that link. I’ve already had both my lenses replaced due to high eye pressures and glaucoma since developing PMR. Apart from my eyes and weight gain, no problems with diabetes or depression. I have osteoporosis in my spine according to my last bone scan so I do take Alendronic acid weekly.

If I have to increase the steroids back to a level where a lot of my current problems weren’t obvious ( GP has suggested 15mgs) I see little point in taking Methotrexate as well.

My gut instinct is to increase, monitor the results which if all this is PMR related should show improvement within days, but I suspect the extreme back pain may still be there.

So. Do I go ahead with this or wait till I see my GP in 10days and discuss with her. She has been very good all the way with me. Perhaps tells me “ to listen to what your body says” a little too often. I would prefer the advice or direction to come from her a little more.

Thanks for your advice. I’m going to consider it carefully.

[Hidden in reply to wendyanne49]

You mention you get increased pain when doing your crafts. Can you find a different position?

One of the things with pain killers is that you have to get to a level in your system that helps a bit at least. If I detox from codeine etc and then start taking it again it does take a few doses to get pain back under control to any degree. Probably telling gma to suck eggs but try taking pain killers regularly if you havent and you will know better if they work.A t least you will know if flare . Hope you get some relief soon. 🌻