still no answers

[Bennijax]

I wrote in a week or so ago about rib pain and protruding left rib cage. Since then I've been to see a private rhematologist, then the practice nurse at my local NH surgery, and lastly took myself to A&E locally on Sunday.

The rolling spasm I feel on and off just under the left ribs is the upper stomach in spasm.

This shouldn't have been a surprise as I had a diagnosis of GERD 12 years ago. I got myself better without taking PPIs by changing diet and the way I ate, plus lots of rest. I've not suffered GERD acid reflux since. But she is partially correct - the rib pain is not due to any fracture, could be a pulled muscle or soft tissue, but the stomach spasm just under the lower left ribs is probably the cause of the rib discomfort. No one who has examined me thought the protrusion of the lower left rib cage was serious or concerning.

I'm eating much less and less often, drinking more water but I am in deep fatigue, I am sleeping several hours in the day, my legs are weak and shakey. Oh, and for some reason my old lumbar stenosis (last active in 2012 has acted up again so there is sharp pain in the region of 4 and 5 lumber spine disc.

I am so tired and sleepy I can do very little and because of that am tearful too. I feel stressed and depressed.

On a 'dead slow' tapering since January I'm now half way through the current taper to 9mg from 9.5mg.

I have a question not connected to the above - is anyone on Actemra? does it work better with fewer side effects to Methotrexate? I so want to taper to 5mg. And the doctors are all saying I must start alendronic acid. Soon.

Thank you for your interest, I live alone and with no close friends nearby. Maybe because I'm depressed, I'm feeling terribly sad. I know that will pass, just got to start to feel stronger and get out and about.

[PMRpro Ambassador]

I am on Actemra for PMR having been stuck at nearly 20mg after 14 years of pred. It is infinitely preferable to MTX in my view but it isn't magic and after well over a year I am still at 5mg. But the main point is that you won't get it for PMR in the UK - it is only approved for relapsing GCA and for a year. I'm not in the UK and nor are any others on it for PMR.

[Bennijax in reply to PMRpro]

even privately?

[PMRpro Ambassador in reply to Bennijax]

If you are rich - Actemra still costs about £12,000 plus a year. It is possible it may come down in price now it is out of patent, Humira has and according to my rheumy its about 800 euros a year now - and it was a similar price to Actemra before. But we aren't there yet.

[suzy1959 in reply to PMRpro]

I think I would be willing to pay that price! Could I do that in the UK?

[PMRpro Ambassador in reply to suzy1959]

£12K???? Through a private rheumy probably. Only one way to find out.

[suzy1959 in reply to PMRpro]

I am desperate!!The steroids are causing me so much trouble and, as you know, I have never been able to get below 11mgs. in 11.5 years. This would cost less than each of the joint replacements I have had!

[PMRpro Ambassador in reply to suzy1959]

Ask Rod Hughes - are you still seeing him?

[suzy1959 in reply to PMRpro]

Funnily enough I have just sent an e mail to his secretary- due to see him I'm August but no appointment has been sent yet 🤞

[PMRpro Ambassador in reply to suzy1959]

Just occurred to me - in the clinical trials for GCA there were 2 arms of the trial, one with weekly jabs and one with jabs every 2 weeks. There was a difference between the two but really not massive.

When you get TCZ on the NHS it is funded for a calendar year - doesn't matter if you spread the injections and do them 2 weekly or want to taper them in the same way  LemonZest11 has while seeing how little she can manage on. After a year that is it.

If you are paying yourself, you could try and see if the 2-weekly regimen is enough for you to still reduce the pred. And that would reduce the cost a lot, £6K a year brings it into the real world ...

[suzy1959 in reply to PMRpro]

Thank you for that idea!

[PMRpro Ambassador in reply to suzy1959]

Do tell me if it works out - I've been on it for over a year and got from 19 to 5mg. Christian said to wait a couple of months before tapering, I got stuck the first time I tried 6 and went back to 9 and went down again. 5mg was wobbly for a week or so but it's fine now. That was all he expected originally - think he's doubtful of adrenal function returning after 14 years of highish doses. But 5mg is rather better than nearly 20mg and it looked as if the dose I needed was increasing. I never had problems with prednisone though, of any sort.

[suzy1959 in reply to PMRpro]

Your success has inspired me!

[PMRpro Ambassador in reply to suzy1959]

Trouble is, I can't even think of returning to the UK permanently - not that I particularly want to, generally the weather is better here although yesterday made that a bit questionable for a few minutes with 27 roofs having been blown off in town! But realism forces me to concede that someday I may have to face it. Honesty also forces me to concede that, having bought myself a campervan last week with the accumulated savings of the last few years since just before Covid, I could finance TCZ if it is allowed. I decided that it was in the bank, losing worth, and if I need to go in a carehome they will take it away anyway so before I get to that stage I shall enjoy it for all I'm worth, even if it is just a few years

[Merryfield in reply to PMRpro]

Way to go, Pro! Drive on!

[SheffieldJane]

I am sorry that you are depressed. It is a horrible and isolating feeling that makes everything grey and joyless. It certainly won’t help that you have an unusual, painful symptom that you feel convinced is something serious and sinister and nobody appears to be taking you seriously. In the U.K. we are increasingly coming up against this because doctor’s are starved of resource. I have been oddly fortunate in that I have had every test known to man to discover the cause of my lower abdominal pain. They come back clear but the pain and digestive issues remain. IBS, diverticulitis have been mooted. I have also severely restricted my diet. My theory is that Actemra has damaged my gut and there maybe a tear or an ulcer that colonoscopies have not found. Like you, this is on top of PMR symptoms from GCA/LVV.

I had severe pain at the base of my ribs when I was a young mother. They were on the point of removing my gall bladder when tests came back clear. It was never explained. Upon reflection I think that it was carrying very heavy shopping home having no transport and I had injured myself. I had to sleep sitting up, the pain was so severe. Another of life’s unsolved mysteries, that went without my ever discovering what it was. I was alone with a small child and you do tend to brood. I hope that a solution is found for you, or that the symptom just melts away. 🌼

[Bennijax in reply to SheffieldJane]

Thank you so much. It is the unexplained and the mind thus filling in potential scenarios causing further worries because of being alone, the questions mount up - how will I manage, how long can I keep my agency over my life.

[Baner in reply to Bennijax]

Hi Sorry to hear your story. If you need someone to talk to the Wren Project might be able to help. Have a look at their website for further info wrenproject.org

I saw a poster about them when I was having a blood test at hospital. Haven’t needed them myself but wouldn’t hesitate if I needed someone to talk to.

Hope you’re feeling better soon

[Bennijax in reply to Baner]

Baner, I have signed up to receive their emails. I hadn't heard of it previously, so Thank you very much.

[alangg]

Hi Bennijax,

When my PMR was at its worst, I developed a small 'lump' on the left side of my sternum, at my top rib. It was painful , especially at night when trying to get comfortable in bed and if I sneezed or coughed, it was excruciating!

My GP sent me for x-rays, scans, etc but there was no definite diagnosis and so I was referred to a Physio. Although she couldn't identify any issues, she explained that because my PMR was affecting my shoulders, I was probably, although subconsciously, using my intercostal muscles to do things that they were not designed to do and so they were becoming inflamed along with the bones that they were attached to (or something like that!).

She gave me exercises to flex and strengthen them but it was a few months before the pain subsided and the lump disappeared and that, of course, could have been due to the PMR being not so prevalent.

This might not be the same for you but I thought I should 'throw it in there'! Hope you are feeling better soon.

[Bennijax in reply to alangg]

I am slowly coming around to the concept that these aches and pains do not always have a diagnosis, may not be phantoms but impossible for current medicine protocols to deal with.

[Bigbaldgit67]

on he subject of the rib problem…… a few weeks after my own PMR diagnosis I developed a largish lump on the left side lower rib cage. It was sore and uncomfortable and as with any lump, worrying me somewhat. After I called the NHS helpline I was told to attend an urgent care appointment at the local hospital where the “lump” was diagnosed as a herniated intercostal muscle (big relief). Basically a muscle that belongs within the rib cage had popped through between two ribs, hence the lump and the pain. The doctor said it would take up to 12 weeks to recover and go back to where it belongs and suggested ibuprofen for the pain/swelling. It appears he was right and it has recovered.

[Bennijax in reply to Bigbaldgit67]

I'm checking for such a lump but none can be found. I have looked at the possibility of a hernia; in my case currently it is the stomach in rolling spasms under the bottom left rib.

[SheffieldJane in reply to Bigbaldgit67]

Your Avatar gave me my first smile of the day, thank you 😉