Spine

[Skrtjg]

Any one having problems with not only PMR and GCA but now problems with the spine?

[HeronNS]

What sort of problems do you have? I've had osteoarthritis in my spine for many years, predating PMR diagnosis by decades, but have been helped immensely by physiotherapy, yoga, etc.

[PMRpro Ambassador]

I have back problems that superficially seem to be spinal but they are entirely muscular. Myofascial pain syndrome and piriformis syndrome are both more common in patients with PMR, can cause "spinal" syptoms but are muscular.

More details of what you mean would be helpful though.

[SheffieldJane]

I have cervical Spondylosis in my upper spine and an recent x Ray showed significant wear and tear in my lower spine. I get separate pain from these arthritic conditions, particularly at this time of year, too much computer work or too much standing. Is that what you mean?

I am more aware of it now I am down to 7 mgs of Pred.

[Marilyn1959]

I have had problems with spine. DX scan showed osteopenia and MRI scan showed vertebrae pressing into surrounding tissue. Based on my experience, it is worth investigating rather than assuming pain is associated with PMR / GCA.

[Skrtjg]

Thanks for the replies. The last time he went to the doctor the doctor said the prednisone was causing his spine to be affected. Will find out more when he goes to the doctor again.

[HeronNS in reply to Skrtjg]

There is always a chance that prednisone has caused some bone thinning. Apparently this is most likely in the first three months of treatment. Ways to combat this effect include taking prescribed supplements of calcium and D3, plus a few additional things which will make the calcium supplement effective (K2 possibly magnesium). and getting some weight-bearing exercise. Physiotherapists can also prescribe some appropriate exercises to strengthen muscles which support the spine, and if the spine is not in great shape they can also recommend ways to protect the spine through modifying one's movements.

[PMRpro Ambassador in reply to Skrtjg]

And exactly what evidence does the doctor have for making such a sweeping statement? Did he examine him properly? A dexascan might show something - but if it is muscular x-rays show nothing. My GP prods and identifies the very hard muscles - no messing about with her!

[GCA1947]

Dear Skrtjg

I've only got GCA-I was born with an undiagnosed condition called Klinefelters Syndrome which only affects men and boys and gave me osteoporosis when I was fourteen and a curved spine. Osteoporosis is a side effect of not making enough of my own testosterone and thus all my bones are subject to fractures. I was lucky!!! in that my first seven fractures came in my ribs in the ten years before I was diagnosed in 1996 and a metatarsal fracture in my left foot shortly after that.

The Testosterone Replacement Therapy started in 1996 and four years later I'd dropped from Osteoporosis to Osteopenia. GCA started in December 2013 and because few G.P.'s know anything about the condition my steroids weren't reduced quickly enough and I redeveloped Osteoporosis in 2015 when disc L1 fractured in my lower spine on 21st March 2016. The pain has to be believed and I've been on painkillers for the past 18 months, and they all have side effects as well. The best one is Morphine Sulphate but even that has side effects as Janet's description of my zombie like state will attest.

The forum must be getting fed up with my saga of Klinefelters Syndrome but it affects so many aspects of my skeleton so I hope you'll bear with me who knows I might have the answer to your problems but only if you're male.

I hope you feel better soon

Colin

[Skrtjg in reply to GCA1947]

Thanks. Doctor said it is osteoporosis and is crushing lower spinal cord. Wants to reduces prednisone from 20 to 17 1/2 . Every time we get him down to 10 he ends in a flare.

[Marilyn1959 in reply to GCA1947]

Of course we will bear with you Colin. Never feel the need to apologise. Kleinefelters sounds horrendous! I didn't realise Osteoporosis could be reversed to Osteopenia? What happened to make this happen?

[GCA1947 in reply to GCA1947]

Dear Skrtjg

The Testosterone Replacement Therapy stopped the Osteoporosis in 2000, well it strengthened my bones so they weren't as weak for which I was eternally grateful. I still get a DexaScan every 2 years and until 2016 an Echocardiogram as well, because one of my G.P.'s found out that I'd got a mild heart murmur and wanted to check that it wasn't getting any worse. In 2016 the Cardiology Doctor who looked at the result couldn't find the murmur so the consultant who looks after the Klinefelters decided that we needn't Echo in future. Eight previous doctors' could find it but several said it was very mild.

So imagine my horror when my GP kept putting up the prednisolone with the rising CRP and I developed Osteoporosis again, and have still got it.

O.k. I've had my moan, I'm sorry I don't mean to go on about Osteoporosis I thought once was enough and have now probably got it for ever.

Regards

Colin

[GCA1947]

Dear Skrtjg

Try stopping at 12mgs for a couple of months. 10mgs is obviously too low. You could try some .5mgs Pred like I've got. Well actually I've got some 2.5mg tabs and I'm making up my current 8.5mgs dose with 1 x 5, 1 x 1 and 1 x 2.5

I was luckier. My first GCA flare happened at 3.5mgs Prednisolone but that was after 3 years of GCA and it felt awful. It took me 5 months to get back to normal and by that time I'd risen to 15mgs a day. Needless to say my Rheumatologist was not at all pleased. He wants to get me off Pred. completely but I don't think that's ever going to happen. Rheumy and I have agreed to reduce by .5mgs a month dependent on CRP readings.

I'm not going down to 3.5mgs again I shall hover at 7.5mgs and try to keep there for 2-3 months so that I am sure that it is controlling the inflammation, and then ease down very slowly. Slowly is the answer but all Doctors want us off as soon as possible.

Regards

Colin

[Mitziecat]

Hi. I have had low back pain intermittenty before diagnosis. This is possibly due to age, general wear and tear, computer work and bad posture. Now on 6 mgs pregnisolone,due soon to reduce to 5. I have been getting intermittent pain on the right side of my back & presume it is muscular. Mentioned it at my routine check up and had an Xray but no result yet. Also got a CT scan booked for January. Best to eliminate all causes.

Gentle back exercises on a regular basis is recommended and pilates is very good. I find heat pads are also good.

[PMRpro Ambassador in reply to Mitziecat]

I was told mine was due to "wear and tear" too - by an orthopaedic doctor. In fact it was entirely muscular in origin as shown by the hospital orthopods and the pain clinic specialist. They sorted out the myofascial pain syndrome - result, pain almost entirely gone although it does recur for reasons that can't be altered.

It had improved a lot at higher pred doses and then returned in force once I got down to trying to go lower than about 9mg. They sorted it with drugs until I reacted badly to i.v. valium and then used manual fascial release techniques to finish the job. I still need a top-up every couple of years - but when sorted. no pain. Myofascial pain syndrome is very common alongside PMR - it is caused by the same inflammatory substances except they are localised in the fascia and in trigger points in large muscle groups. Which coincide with the trigger points so beloved of doctors who make a fibromyalgia diagnosis instead of PMR.