Downdate !

[fren]

On New Year's Eve I bought myself a walking stick.

My oh 'so full of myself' achievement of 2mg Pred per day in mid December had flared into agonizing carpel tunnel syndrome and bursitis in my left knee.

It was then that I met you wonderful fellow sufferers and your forum, so armed with developing self confidence and lots of knowledge aquired here I set about taking control of my viscious little monster.

Within a few days my rheumy injected cortisone into the offending knee and doubled my pred to 4mg. Within a two weeks the stick developed a new use.... accessing items on the top shelf in the supermarket, and now lives in a dusty corner of my sitting room.

Meanwhile I stuck (in agony) with the 4mg dose until the nerve conduction tests were done then followed PMRpro's advice to add 5mg to the dose at which I flared (7mg). This kept me comfortable until surgery on 19th Feb. That day and the two following I took 8mg then reduced quickly 71/2 4 days then 7 1 week then 61/2 two weeks, then 6mg. My surgeon had suggested I get down to 5mg as soon as possible and stay there for three months. A miserable week on 6mg and my daughter was begging me to go back up to 61/2, which is where I am now.

At my 2 week post op wrist check with GP I requested a bone density scan as I had been on pred for over a year. I had this done on Thursday and found that I have Osteopenia in my left hip, rest of me fine. They also found three degenerated discs in my lumber spine and signs of Facet joint osteoarthritis. Could this explain why I can't walk far ?

To crown this, yesterday I had my routine blood test prior to a control visit with my GP on Tuesday and find that my CRP has shot up higher than when I was first diagnosed (CRP 25) and I am still taking 61/2mg pred daily.

So me and the Pred medicated dog (now on 20mg daily, and tramadol 100mg after having ears cleaned and examined under anaesthetic, and enjoying an elimination diet of fish and potatoes) plan to hunker down behind the sofa until the Joyeuse Fete de Paques has passed and the PMR treadmill resumes.

....If I already feel utterly rough an easter egg can't harm,... or a drop of wine, ...some oysters ....café Leigeoise.... etc ......etc .....

Wishing everyone a peaceful, painfree and contented Easter.

[SheffieldJane]

Happy Easter to you fren. Enjoy that egg you’ve earned it,🌷

[PMRpro Ambassador]

Pfft - bit more pred required and a nice glass of something...

Joyeux Paques...

[fren in reply to PMRpro]

Hi PMRpro I feel in need of wise counsel.

I'm not too sure what to do with pred. The wrist surgery is still a little red and sore six weeks on, but does not look infected. The fingers vary between tingly fingertips and almost completely numb, but I know from last time that the sensation takes months to recover. The knee is fine. The surgeon was concerned that the pred would delay healing so wanted me to keep it low, yet the numbness indicates inflamation, which needs extra pred.

At the point of my flare in january with unresolved inflamation in hand and knee my CRP only rose to 5.2, why has it suddenly shot to 25 and I feel exhausted.

I had thought of sitting it out until Tuesday and having a thorough discussion with GP I worry that if I up the pred I will forget what I feel like today. Sounds a bit stupid?

[PMRpro Ambassador in reply to fren]

No, doesn't sound stupid at all. I know the feeling - it is so difficult to explain to them anyway and staggering in looking like death does help sometimes!

I did twitch a bit at the surgeon's "get to 5mg asap" - and I think I was right. You've had the stress of surgery, that with the physical destruction of tissue that is inevitable in surgery may be contributing to the raised CRP but I'd say it is far more likely to have caused a flare. You need what you need - and ignoring symptoms leads to a flare.

My alleged spinal degeneration that was causing me to be unable to stand for more than a few minutes without pain or walk for more than 10mins was proven to be not entirely true: manual mobilisation of the MPS trigger points and some steroid shots have removed almost all of the pain from that suspected source. It is worth TRYING at least.

[fren in reply to PMRpro]

The Xrays taken at time of bone scan and reported there by the radiographer has shown three collapsed discs and signs of osteoarthritis in the facet joints. The problem is very visible on the Xrays (which I look after and will take to GP then Rheumy).

Like for you standing is a nightmare and walking doesn't happen except strangely I can push a supermarket trolley for miles. It must be the angle of my back. Can't see me being brave enough to head round town with one, supermarket security in tow.

I am planning to push for full investigation and whatever treatment is possible when I see GP Tuesday. What are the MPS trigger points? I can bring this up in discussion.

I just want to walk my dog and tend my garden again.

thanks Fren

[PMRpro Ambassador in reply to fren]

MPS causes trigger points to form in pairs on either side of the spine, in the shoulder muscles, about rib level and in the low back, about where the baby's dimples are. They are knots of inflamed and hardened/spasmed muscle fibres which themselves hurt if you press on htem but also can irritate nearby nerves and cause referred pain in the relevant regions - neck and arms, ribs and low back/upper thighs. But the fascia can also be affected (the transparent skin you'll know from joints of meat/poultry) and that makes the entire muscle tender - especially the piriformis but also others.

The tight and inflamed muscles spasm - and pull all the joints closer together and that makes them even more painful. Relieving even just some of that should help the other pain. It is horrendous I know.

The pushing a shopping trolley helping is because the position you adopt is the one that hurts least and the shopping trolley supports you so you don't fall over forwards - it is a common finding apparently!

[fren in reply to PMRpro]

That sounds so sensible, particularly the muscle spasm which on about the tenth step feels like a steel corset.

Your advice is so much appreciated.

Enjoy Easter, hoping for a warm blue-skied day tomorrow and wishing the same to everyone.

Fren.

[Hidden]

Ohhhh Fern.... have the egg, and the wine! As Sheffield Jane said, you've earned it! Happy Easter! 🐣

[Soraya_PMR]

I had extruded lumbar spinal discs and many years ago had facet joint injections. From an x-ray a year ago they now clump this whole sorry mess into ‘arthritis of lumbar spine’. In the acute agonising stages I was unable to move at all, but in the chronic stages I could walk, standing still (in a queue for example) is what I couldn’t and still can’t do. It was my chiro who kept me going, without her I don’t think I’d have kept walking.

“My surgeon had suggested I get down to 5mg as soon as possible” Exactly! ASAP. But that doesn’t sound as if it’s this week. Or next. I think with so much going on you need to keep yourself comfortable, that way you can be as active as possible, which you need to keep your bones as strong as poss.

I get what you mean about keeping your pred at the same level until you see the doc. I’m doing the same, and have been on the edge of increasing several times during my 19 day wait to see GP. I don’t know why I bother really, because I’m not expecting him to say anything remotely sensible

Hope the fish and potatoes help the ear problems. Always worth an elimination when they have repeated bad ears. My doglet has just had her latest blood results back (Cushings) and after 7 months of tablet adjustments, they’re just about perfect plus I’ve weaned her down from tramadol 100mg twice daily, to occasional 25mg as needed. As her cortisol levels dropped she became lame in her hind quarters, presumably arthritis masked by high cortisol levels. Seems to be a familiar tale here.

[fren in reply to Soraya_PMR]

Happy Easter Soroya and thank you for your kind response.

Delighted to hear that doglet is doing well, can they do anything for the lameness? How old is she?

Cayman is doing well on his fish and potato diet and by tomorrow evening he will be completely off the croquettes with no ill effects

. The vet has sent swabs for culture and sensitivity, should have results at visit on Thursday. He started with tramadol 150mg bd but is now just having 100mg at night. Pred at 20mg od. No scratching and very little head shaking. A very happy Easter Bunny.

As for me, I only asked for the bone scan because so many on this forum had had them and I have not been precribed any supplements, but have been taking multivits, cod liver oil and prunes as selfcare. The lumbar problem was a shock but not a surprise if you see what I mean. Been unable to bend or walk far for over two years.

My report states that it is the Facet joints which are arthrosed. Did you get relief from the injections, and how is it done? I presume I will be going back to my Rheumy 'toute suite'.

Thanks again, Fren.

[Soraya_PMR in reply to fren]

Happy Easter fren

Doli Doglet is 11. Her lameness is much improved, and only really bothers her when she’s done ‘mad ball chasing’ in the park. As she’s ball obsessed (typical terrier) I try to keep her moderated, but no stopping her if she sees another dog’s ball! She’s grossly overweight, so we’re trying very hard to diet her, no carbs, just raw meat and bones. But due to high cortisol her thyroid hormones fell under threshold, back up in very low area now. If I could get her weight off I think her hips would be better.

Bit of an oversight (negligence?) on your doc’s part not giving you calcium and VitD supplements wasn’t it? Have you added them now?

Facet joint injections did seem to offer a bit more movement and less pain, but they were done ages after the acute phase (NHS grinding slowly). In fact I paid privately to see an orthopaedic consultant and for an MRI as I was unable to work and the waiting list was forever! He gave me exercises to do hourly (!) simple stuff, but effective. So hard to know if it was the injections or the exercises. I still do those exercises now if I feel my back muscles are unhappy. As for the actual injections, I was laid face down and high on Midazolam! Can’t recall much at all, except registering that someone somewhere was in severe pain (me!) but it didn’t register as MY pain. Then felt drunk afterwards! Had a day off work, then back to ‘normal’.

[Hidden]

I would say you and the hound deserve a treat. Perhaps not an shared Easter egg😁 . Hope things start on the upwards trend.

[Jackoh]

"I worry that if I up the Pred I won't remember what I felt like today" Perhaps keep a detailed diary of how you feel each day , with dose details and perhaps a mark out of 10 for how you have felt for that day. I have been doing something similar for my PMR/GCA journey and it has been invaluable for GP and Consuktant visits. Hope you have peaceful and restful Easter

[fren in reply to Jackoh]

Hi Jackoh,

This I will do. I have always kept a record of my pred doses and a note of anything specific that I want to bring up at my next control. I know I am guilty of underplaying symptoms as if I have possibly imagined them or have caused the problems myself.

My daughter says this is a woman thing and we always visit the Quack together, for each other, like we need to verify each other's problems, however kind and caring our GP is we don't always feel we are taken seriously. hence my being sent off for a colonoscopy 3 years ago when strugling with low back pain...ugh! and her being told to lose weight to cure a bone spur in her knee. Since treated by our nice shared Rheumy and she is back to normal and losing weight with exercise and diet.

I digress. I have already started my description of today and will do the same tomorrow, then GP Tues afternoon.

Thank you for an excellent idea.

Have a contented Easter. Fren

[Jackoh]

Yes agree Fren a lot of us underplay symptoms because we don't want to appear a nuisance or a hypochondriac xx

[Grants148]

Happy Easter Fren,l hope things will soon get better for you.l am on 3mgs of preds and l am supposed to lower down to 2mgs but am very reluctant to do this as l am still not free of PMR and l am sure it will all flare up again.l hope you are enjoying Easter in spite of all your pain and l wish you all the best,please keep us posted as we do all care about you xx

[fren in reply to Grants148]

Thank you Grants148 for your kind wishes.

I am no expert, simply a sufferer, but when I was at your level last December I reduced only by 1/2mg during a month and even that was too much. If I was back there now I would not attempt to reduce until I was absolutely comfortable on the 3mg does and then reduce by 1/2mg using Dorset Lady's dead slow method, taking as long as I needed.

I hope you too have a relaxing and painfree Easter.

[Grants148]

Thankyou fren xx