Sx worse, what on earth do I do

[August7]

PMRpro and DorsetLady in particular may I bend your ears yet again..sorry.

I think I said the Rheum back in November was querying PMR with Psoriatic Arthritis. I’m supposed to start Methotrexate injections in March when ‘I’m shown’ to ‘get my pred dose down.

I had a 45 min MRI last night, long drive there and back and exhausted to be fair.

I could hardly get up this morning. Worse yet. I am hobbling around with pain alternating in both sacro iliac areas, shoulder (particularly R) so painful, elbow too. Neck stiffness joining in, ribs on inspiration. I managed to get in the car to drive my son to his app but I could not get out of the car at the other end.

I called the surgery 48 hours ago, spoke to a perfectly pleasant Gp and described increasing pain etc and that I had got down to 9 mg Pred, he advised increase by 1 mg and if that didn’t work it probably wasn’t the PMR…

I am struggling with the fact that I was walking ok up to 4 weeks ago which helped me mentally see off the other pains. Walking with my dog has always been my calming centring thing. Now that’s gone I feel out of control. I am having to haul myself about, cannot bend. What should I do? Is it inflammation plus plus that simply has not been dampened down by too low a dose Pred and medics insistence I need to reduce down due to s/e, is it the arthritis. I recognise from the many brilliant posts that stress is a causative factor but there is nothing I can do to reduce that currently, it is as it is. But I am truly scared the way this is going. I have the option of ringing the specialist nurse rheumatology line but fear that will be wasted as I do not think they can titrate meds.

I have tried taking some old Dihydrocodeine out of desperation but it did nothing, the Gp wanted me to try Pregabalin but I was put on that initially a year ago, gave me nasty palpitations and I weaned myself off that quickly.

Any advice gratefully received. I’m sorry yet again this is a long winded post. Thank you

[PMRpro Ambassador]

"he advised increase by 1 mg and if that didn’t work it probably wasn’t the PMR"

I REALLY don't think 1mg will deal with a good going PMR flare so I wouldn't take THAT as diagnostic! As for it taking 4 months to get you started on MTX injections - what a piece of nonsense.

I have had very similar experiences - it is the PMR combined with myofascial pain syndrome causing back muscle spasm and sacroiliitis. I have a great rheumy who actually deals with it at source.

What I have done in an emergency is to take a flooding dose of 800mg ibuprofen - careful along with pred, take with food and preferably a PPI as well. If you aren't already on one, you can get them OTC. I then sit upright on a chair with cushions and pillows to support me with a hot water bottle over the spasmed muscles. Not an instant cure but in a couple of days you should be able to move better.

But decreasing pred with no replacement option was always going to lead you here.

[August7 in reply to PMRpro]

You are a tonic! I’ve had the dratted pain alternating on the (I think) sacro ileac joints for a month off and on. R. Side presentation as if someone stabbing me ..out of the blue and to the extent it makes me yelp and feels like the bone is grinding, started to resolve and I (probably stupidly) went up a steep pathway with my dog as I was overjoyed to get out and try something I’d done daily for years, sufficient to say next day was payback. Then it switched to the other side and now they are twins, no stabbing but very painful. Your rheum sounds like heaven, I’ve no idea when I shall get my follow up although it’s due.

What you say tho about the analgesia flooding (I will do), and myofascial pain rings a bell. I saw a Consultant a year ago who specialised in pain and he thought I had myofascial pain, this was prior to any introduction of PMR. He then handed me over to the Rheum dept.

Should I leave the Pred at 10 or up that as well. I doubt the GPs would even bother. None of them seem to go with PMR or think that if you don’t have an instant result you haven’t got it, however the rheum thinks I have and poss PsA. (I did ask the Gp if I should have some bloods done but he didn’t see the point) . The MRI was to see if I had any disc protrusion ordered by one of the gps I actually saw, although they all put down the sacro ileac pain to ‘sciatica’, but I had no pain travelling down my leg etc, no red flags.

Off to source some ibuprofen. I’ve had Omeprazole this morning of 20 mg, is that ok or should I take another dose. Many many thanks💐

[PMRpro Ambassador in reply to August7]

Well I would try more pred to see if it helps in the absence of any sense ... And I would look for some GPs who have a clue - yours don't appear to have much!! Sciatica is one thing, sacroiliitis another. At least you have had the MRI to rule discs in or out as the cause - negative results are just as valuable as positive ones!

modernpainhouston.com/sciat...

lanermc.org/community/lane-....

I had had MPS most of my life but it came and went. With PMR it was more came, never went ... I also have a scoliosis which doesn't help as it makes the muscles protest even more.

Do try to avoid the triggers - stairs and steep paths ... They say it gets worse with sitting - I don't find that the case providing I am well supported. But anything moving legs can be excruciating. And getting from bed to standing in the morning - don't even go there. Once I even had to call an ambulance because I simply could not do anything! The orthopod in the ED gave an infusion of tramadol - barely touched it. Luckily I had an appointment with my rheumy later that morning and they took me round to him. He continued the neural therapy he'd started - high dose infusion of an NSAID and a needling technique which aims to relax the spasmed muscles. By the time he'd finished I could walk and by next morning I caught the train to get there for the next session.

It is a technique used a lot in Germanic medicine and it really does work well. The pain clinic here uses a version but the doctor there is always very reticent about using it for me as I'm on anticoagulants. The rheumy has no such qualms!

bamklinik.com/neural-therapy

The omeprazole should be OK.

[DorsetLady PMRGCAuk volunteer]

PMR-has replied, so do try her suggestion re flooding dose of ibuprofen. Hopefully that will sort things. But your recent exertion may well have the knock on effect of creating a flare- so if it does then usual advice is within this link -

healthunlocked.com/pmrgcauk...

[August7 in reply to DorsetLady]

Thanks as well Dorset Lady, that makes good sense !😊

[Gala123]

Just wanted to wish you to find something that helps. It sounds hard. I was also diagnosed with inflammatory arthritis (possibly PsA) and PMR. It all happened at the same time. It's a bummer. I am on pred and methotrexate.

[August7 in reply to Gala123]

That’s kind of you. It’s not great is it….i hope you’re getting good support and some relief with the addition of methotrexate. 🤞Thank goodness for this website and all the knowledgeable and lovely souls who post.

[Gala123]

Forgot to say that the nurses on the helpline can actually adjust your meds and if it is beyond their competency they could pass your query to the consultant, so it is worth calling them. Another option is emailing or calling your consultant's secretary. You can get their details from the rheumatology department or find it in one of the letters that you got from your consultant.

[August7 in reply to Gala123]

That’s useful thanks. I wasn’t aware you could do that.

[Barnaby2]

I was originally diagnosed with PMR but after an MRI they decided it was discs in my spine trapping nerves and I also have scoliosis which I have had all my life. They took me off the prednisolone as the rheumatologist wanted to see me without it . Then I had a few weeks of feeling better and the rheumatologist decided I didnt need to see them. Since then I have had several visits to A and E with excruciating pain and been put on Oramorph. After I managed to get off that they put me on Naproxen and pregabilin. I was on it for over a year when suddenly I had a really bad acid reflux where I felt like I had swallowed bleach! The GP at hospital took me straight off the Naproxen so now I am in pain. The consultant that saw me for my hip and knee sent me to spine consultant who sent me to physio! I feel like nobody really knows what is wrong and it just goes on and on.

[PMRpro Ambassador in reply to Barnaby2]

Nor apparently the effects of longterm use of those medications! Out of interest - did pred work? Did it all worsen when you stopped it>