Severe rib cage pain, sternum swelling accompanied by reddened skin on neck and chest

[1957tuibird]

Hi there.

I was diagnosed with PMR last June and put on 20 mgs prednisone. Advised my GP to taper down slowly I have tried to reduce to 10 mgs but each time I reach 10mgs, after a day or two, experience severe rib cage pain and a painful and swollen sternum plus the usual stiff neck, shoulder pain and some sciatica in my left leg, making walking difficult. The rib cage pain is always there but on the higher doses of prednisone is more of a discomfort rather than severe pain. Every time I taper down to around 10 mgs the pain gets so severe I have to up the prednisone again to around 13 to 15 mgs. I have seen a Rheumatology Registrar as my GP feels a little out of his depth and had a good work up last Novemeber with differential diagnoses of ? Spondyloarthritis, ? Sero Negative inflammatory arthritis ?Enterpathic RA or PMR. The Registrar ( under guidance from the Rheumatologist) placed me on 20 mgs of Methotrexate weekly and folate daily ( to help stop hair loss - not much luck there ). I don't think the methotrexate is doing anything except making my hair fall out ( been on it for 4 months now) but realise it can take upto 6 months to work. When the prednisone is taped down my CRP rises somewhere between 15 and 30) but all other blood tests normal. I will 'eventually' see a Rheumatologist on 11 April and my current thinking, if supported by the Specialist, is to taper off the prednisone completely and try one of the mono clonal TNF meds like Humera. What do people think about this idea? My main interest in writing is to ascertain if other people with PMR have sternum swelling, reddened skin over the chest area and very sore ribs like the pain of severe bruising right around the entire rib cage area, but often more severe in particular areas. Like all the posts I read it has been an up and down journey over the past 8 months, and a longer journey to go, no doubt. I very much appreciate reading everyones posts and learning more about PMR and associated conditions.

[PMRpro Ambassador]

Hi and welcome!

It took me over 4 years to get below 10mg/day without a return of symptoms. If I go too low on pred I get discomfort in low back and around my ribs - which we are pretty sure is due to myofascial pain syndrome affecting back muscles and making them tight, spasming at worst. The prescence of the trigger points in large muscles is a primary problem - and they can also irritate nearby nerves on their way from the spine to the region they supply. As I say, the area that bothers me most is around the ribs and also in the low back near the S/I joints - and I also admit I'm beginning to wonder if there is something else or if it is just the lack of access to the Pain Clinic during Covid. It had been stable for a few years until then.

As for a biologic - if it is an option then it might be worth trying. They do need to be fairly confident it isn't PMR since Humira hasn't done well in PMR, different mechanism usually to the one Humira works on and biologics are very specific in action.

[1957tuibird in reply to PMRpro]

Hi PMR pro

Thank you for your response. Well it is heartening and dis-spiriting at the same time to learn that is has taken you 4 years to get your pred dose less than 10mgs. At this stage I'm wondering if I can ever get it less than 13mgs. While I am experiencing most of the usual side effects of the pred the most bothersome is its effects on my sleep routine. I used to sleep a good 7-8 hours pretty much undisturbed but now I'm lucky to get 3-4 hours. I've experimented with altering the time I take the pred and take it as early as possible in the day, but doesn't seem to help much. Good to learn that what I am most likely experiencing is myofascial pain syndrome - I definately respond well to a good therapeutic massage weekly and look forward to this. Wonder whether the pain is intensified due to how fit I was prior to coming down with this condition 8 months ago. I was running 3 times per week and had pretty good core and back muscle strength. I wonder whether the good muscle tone and strength is now a disadvantage in terms of pain? I understand that Humera is not very effective for PMR but given my obvious high degree of inflamation, in theory if the inflamation is stopped, then in theory the pain should too?? Best wishes in your journey.

[PMRpro Ambassador in reply to 1957tuibird]

Hate for it to sound even worse - that was at the start. I've been on pred for well over 12 years.Humira does not work on the mechanism for PMR pain - it is an anti-TNF biologic and while sometimes that may be involved, most of PMR and GCA inflammation is due to the IL-6 cytokine. Biologics are very specific andthe 2015 Recommendations for themanagement of PMR actually mention anti-TNFs specifically and say they are not recommended as they do not have a good risk-benefit profile - aren't effective and may cause problems.

Don't know about the fitness aspect - I was at the gym regularly when my PMR started and for 5 years kept upright by doing aquafit, Pilates and Iyengha yoga but have never run and while I had decent core strength it wasn't fantastic. But Pilates helped a lot.

[1957tuibird in reply to PMRpro]

Hi PMR pro

I appreciate you sharing your experience with me. Gosh- 12 years on pred. It makes my 8 months sound rather insignificant. Yes, I had come to the conclusion that Humira was not the drug for me, only after having researched almost everything there is to know about RA, PMR and reactive arthritis. I personally don't think I have RA ( I do not have the anti bodies which 80% of people with RA have and I have no small joint invovelment). The GP has just discovered I have a UTI with heavy growth of E Coli but strangely enough no pain ( only frequency). Now on anti biotics for that. Wonder how long I've had that. Thought the frequency was part and parcel of 8 months on steroids affecting my bladder. Re diagnosis I think I have either PMR or a reactive arthritis ( the cause yet to be found). What is your view on the drug Actemra? I understand from my reading that this drug acts on the IL-6 cytocine. My pain level this moring on rising was about a 9/10 - on 15 mgs Pred. Neck so sore and stiff I couldn't move it for an hour and usual rib cage pain pretty high too. I'm almost back to where I started 8 months ago having been on 20 mgs pred ( 40 mgs with my first flare up). Surely I don't have to go back to 40 mgs again to feel confortable enought to work. I continue to work as my work ( I'm a counsellor) is meaningful for me and certainly increases the empathy when it comes to supporting people in pain! I hope your journey is a confortable one in regards to progress and pain now after all those years.

[PMRpro Ambassador in reply to 1957tuibird]

If you are needing 40mg to manage the symptoms then they do need to be thinking as that is atypical for PMR. It could however be GCA or LVV (large vessel vasculitis). Actemra isn't a given - depends on your country's regulations. In the UK it is only available for a year for resistant cases of GCA. Not for PMR at all. Australia seems to be similar, not sure about NZ. It works well for about half of patients with GCA - getting off pred altogether. The other half only get to a lower dose because there are 3 mechanisms involved in GCA inflammation - only the IL-6 responds to Actemra.

UTIs with no symptoms except frequency are not uncommon in patients with PMR on pred.

How have you reduced the dose? How big steps? It is possible that splitting the dose might work better for you in dealing with the morning symptoms. What time do you take your pred?

[1957tuibird in reply to PMRpro]

While I have had some strange lower skull symptoms that the registrar didn't quite get I have had no signs/symptoms of GCA. Early on my GP ordered a CT scan of my head ( with my persistance) and it was normal, however not sure it would show signs of GCA anyway. I had wondered about large vessel vasculitis, although haven't really researched this one. Next project 😀. Wasn't aware that UTI's with no symptoms are not uncommon in people wiht PMR- thanks for that piece of info. Re the tapering- have been reducing from 20-10 in 2mgs steps for 4 weeks each, then trying to get to 8 mgs, 1 mg steps for 4 weeks. Start experiencing rib discomfort at 13 mgs but taking panadol to cope with pain. Keeping the tapering going, its like the leaking tap scenario. Can be at 11mgs for a few days then it all starts getting unbearable again. This time it has been very painful- feel like I did before being prescribed prednisone.Is it normal for us to have to manage this ourselves? I really haven't had much guidance re how much to 'up' the prednisone by my GP as he just encourages me to keep lowering the dose. He doesn't know I'm back to 15mgs. Trying to see him will be a 2-3 week wait. Re splitting the dose- yes, I've gone down that route taking 3/4 of pred in morning when I have breakfast as early as possible to help deal with the pain, then taking remainder in the afternoon around 3-4pm. Any later and I have touble sleeping, which is my next biggest challenge..............

[123-go]

Hi. I'm so sorry you're having such a hard time.Regarding your sternum pain, costochondritis springs to mind as this has been discussed recently. I've been searching for posts but with no luck. You may wish to read the following link to see if anything relates to your symptoms: it is not intended to worry you.

ruh.nhs.uk/patients/patient...

Personally, I would be pushing for the referral to be brought forward if at all possible.

I hope your problems are resolved soon.

[1957tuibird in reply to 123-go]

Hi 123-go

Yes, I think costochondritis is definately what I'm experiencing, but I think its due to inflammation and not physical injury as I haven't stressed my chest wall at all. The article was worth reading, however. Thank you for the link. Trying to get access to a Rheumatologist in NZ in 2-3 months is nigh on impossible ( usual waiting time is around 6-8 months where I'm living). My GP has sent two urgent referrals to the closest public hospital and one to a private specialist. Long waiting lists. Presume you have to be crippled before you're classified as urgent.

[123-go in reply to 1957tuibird]

The waiting is a trial. We have similar problems here exacerbated by effects on the health service of the pandemic.It's come to mind that a friend sustained a bruised sternum in a car accident some years ago and found that sleeping on her back with a pillow beneath each arm helped.

Please let us know how you get on when you eventually see a specialist.

[1957tuibird in reply to 123-go]

Yes, sleeping on my back helps with the pain. Hadn't thought about a pillow under my arms. I'll try that out 😀

[PMRpro Ambassador in reply to 1957tuibird]

In the UK at least, urgent just means sooner than routine - and the difference may only be a few weeks. The word to use for immediate referral is emergency. Unfortunately, GPs seem unaware of the difference.

But I don't think there is a lot that can be done to improve it more quickly other than pain relief and patience.

[MrsNails in reply to PMRpro]

The GP’s have a Chart they complete to see what category you fall into (if there’s any doubt)

[PMRpro Ambassador in reply to MrsNails]

It's more the duration of the wait I meant - even GPs think that urgent means being seen very soon. But some places urgent is within 12 weeks and routine stuff may be seen in 18 weeks - and the definition of urgen is "less than the routine wait"

[1957tuibird in reply to PMRpro]

I wonder what constitutes an 'emergency referral'......being so crippled you can't walk?

[PMRpro Ambassador in reply to 1957tuibird]

A medical emergency - like GCA. Which is effectively a stroke affecting just the optic nerve. That requires immediate referral, preferably with a letter via the ED for further tests under the direction of a rheumy. Being unable to walk or the level of pain probably doesn't unless life or limb is at risk.

[Amkoffee]

Your rib cage pain maybe costochondritis that get some relief because of the anti-inflammatory properties of the prednisone you're taking. When I had to stop prednisone my rheumatologist and I tried Humira, Enbrel and methotrexate to see if I could get any relief from my PMR pain and I did not.

[1957tuibird in reply to Amkoffee]

Thanks for this Amkoffee. It is certainly good to hear what works and hasn't worked for other people with the same experience/symptoms. PMR pro has also advised against Humira for costochondritis. I will discuss with my Specialist ( when I see them) about continuing on with methotrexate, as I don't think it is making any difference in tapering off the prednisone...except I am losing hair which distresses me somewhat!

[PMRpro Ambassador in reply to 1957tuibird]

It was PMR I was saying Humira wouldn't do much for - and as far as I know, it will do nothing for costochonditis at all.

[Amkoffee in reply to 1957tuibird]

I have alopecia areata and frequently have bald patches so I do understand the stress that goes with losing hair. I hope your hair grows back soon.