Update on Rheumatology appointment

[Katkin1]

Thought I'd just do a quick update. I saw a very nice Consultant this time. He said that he thought I no longer had PMR but that I had something called Steroid Myopathy where the muscles. ligaments and tendons become weak and lose strength (having checked I have been on steroids since March 2020) and that the steroids themselves are causing muscle pain and weakness. This is certainly the case in my legs as I cannot walk far or stand for very long, although I also have osteoarthritis in my knees, but there is a definite feeling of weakness and a lot of stiffness. He said the pain would improve once I decrease the steroids (currently on 13mg) and exercise to strengthen my legs (which I have been doing for over a year now). He also said that the pain in my back (osteoarthritis) would improve when I get my muscles stronger. I do hope he's right!

The Rheumatologist did say that I mustn't rush my Pred reduction and go slowly at 1mg a month, and to allow a week for pain to subside after a reduction but to increase again if it didn't. When I asked when I would see him again, he said he would be in touch in a year but I could use the helpline (didn't know there was one!).

I'm really not sure how right this Consultant is. Has anyone else had problems with Steroid Myopathy and then shown improvement when reducing steroids and exercising?

[PMRpro Ambassador]

I had quite severe steroid myopathy when I was switched to methyl prednisolone - lot of other pred-effects too that I never have had a problem with with prednisolone or prednisone. Once I stopped the methyl pred and switched to prednisone it resolved with just walking.

How does he know the PMR is gone? You are on far too high a dose to know that - though even 1mg can be enough to manage PMR inflammation. If it is because it is 2 years since diagnosis - the 2 year duration of PMR is a myth, there are different sorts of PMR and while maybe 1 in 3 patients are able to get off pred in a couple of years, the majority take longer. 4 to 5 years is a really common duration. A few of us took/take even longer.

I currently can't walk far or stand for long - but despite 13 years on pred it isn't pred myopathy = it is the effect of a massive flare and resultant loss of fitness due to inactivity. If I have a flare of PMR it has always started with a "thunderclap" event associated with myofascial pain syndrome where my entire back goes into spasm. Even when the acute phase is done, the effects last for some time. It includes sacroiliac and piriformis problems and trochanteric bursitis - and they really impact on walking. I have achilles tendonitis on top!

[Katkin1 in reply to PMRpro]

Thanks PMRpro. I too have sacroiliac problems (due to badly sprained ankle) as I mentioned in a previous post, but the weakness has been with me for some time, and of course has got worse due to inactivity, as you say. When I increased the Pred to 20mg when I had Covid, I still had the stiffness and weakness in my legs. I am on enteric coated Prednisolone tablets.

He said the PMR was no longer there because of the usual - bloods normal, PET scan didn't show inflammation (I did reiterated that I was on 10mg of Pred at the time of the scan but he ignored it).

I really don't know where to go from here. Any suggestions would be gratefully received!

[PMRpro Ambassador in reply to Katkin1]

I'm surprised at him - if the patient is on pred - you cannot know. And the nuclear medicine guys are concerned about 10mg and they did actually do a study! probably not published where clinicians would read it ...

[SheffieldJane in reply to Katkin1]

You clearly know a lot about managing your condition and that is probably why you posted, because some of what this consultant advised didn’t sit right.I repeat, symptoms rule, never reduce more than 10% of your dose, have a read of FAQs on here. Inflammation doesn’t show up in blood tests or scans when it is suppressed by Pred. Invest in a good pill cutter for half mg reductions. Do gentle muscle strengthening exercise- water is a good medium, Pilates with a teacher who knows about PMR is also good. I am afraid that in my experience osteoarthritis pain worsens without steroids, but paced gentle exercise and omega 3 will help.

I fear your kindly consultant is encouraging you to comply with these pleasant myths - I wish. The way you carry yourself and move will impact on pain hence the Pilates recommendation. Tai Chi is wonderful too.

Plough your own furrow steadily, always towards the optimum dose for pain and stiffness relief. The tortoise wins in the end. The hare enters a world of pain and has to start again. My opinion is based on my experience and that of others and my excellent Rheumatologist ( leader in the field), who is patient centred. My own muscle weakness improved and went like many other symptoms did but never ignore a worsening symptom. Good luck! You will be the first to know when your disease leaves you.

[Katkin1 in reply to SheffieldJane]

Thank you SheffieldJane. Really good adivice. So do I just 'go it alone' now? If I increase, I'm not sure by how much because I can't remember the last time I didn't have any pain and stiffness?

[jinasc]

l also have osteoarthritis in the knees".

I have nothing to add to PMRpro's reply and it won't come as not surprise to you on that score.

However I have had osteo in the knees for many years now. Arthritis Research developed 'Flexiseq', which works like WD40. (that is the only way I can explain it).

Without that I would be in agony. It is not cheap (but better price on 'A') and well worth buying one tube and following the directions and see if it works for you.

I have told others on this site and most of them found it helped.

[Katkin1 in reply to jinasc]

Thank you. I will get some and give it a go!

[Katkin1 in reply to jinasc]

Actually jinasc, I had a 'lighbulb moment' and suddenly realised I had purchased some Flexiseq last year and hadn't even opened it (bit put off by 10 mins wait to dry I now remember). However, I've just tried it, following the instructions, and it most definitely has improved the pain in my knee! I shall be using it on both knees and possibly my back from now on! Thank you!

[jinasc in reply to Katkin1]

A jog to a memory is a good thing, especially if it means something helps with pain.

I sit on the edge of the bed with a cuppa and a book 10 mins flashes by.... also rub into into your hands, don't wash it off. Its amazing my fingers are now as flexible as they were when I was much younger and boy had my typing slowed down. 👍

Best thing I like about Flexiseq, NO SIDE EFFECTS....... bio-mechanical.............

[Katkin1 in reply to jinasc]

Fantastic, thank you! Good idea about hands!

[RoomsonFire in reply to jinasc]

The Ingredients in Flexiseq ? What magic makes it work I wonder ? I sometimes use Tiger Balm for my Headaches- Does it do any Inflammation reduction ? Or block Pain signals ? Did you ask the Pharmacist ? Best of Luck with it anyway 🙏

[PMRpro Ambassador in reply to RoomsonFire]

WD40 for human joints! The nanoparticles lubricate the joint somehow

flexiseq.com/pages/faqs#:~:....

answers all the FAQs about it including ingredients.

[RoomsonFire in reply to PMRpro]

Thank you 🙏 x Worth a Try when your Limbs are on Angry Fire I think I’ll get some ❤️ 😊

[PMRpro Ambassador in reply to RoomsonFire]

It isn't cheap - but there are no interactions and if it does work for whatever your problem is that trial tube is worth it.

[jinasc in reply to RoomsonFire]

Try this instead of your Tiger Balm.

Spread you fingers throuhg your hair and tug gently all over your head. The gently tug relaxes the little muscles at the root of your hair. Bit like Shiatsu.

[jinasc in reply to RoomsonFire]

No, at the time Arthritis UK were the only organisation which supplied two small leaflets on PMR & GCA. They supplied them to us free of charge, so some of us joined.

Then they produced Flexiseq in conjucntion with a German Pharmaceutical company.

At that time is was £33 pound a tube and of that price £5 went direct to the research section of Arthritis UK and only available direct from ARC. Then Lloyds came on board - sales went up and the price went down.

[SusanEleven in reply to jinasc]

Sadly it did nothing for me. Our bodies are so individual in their responses. But I always figure if others have found something helpful it’s worth a try.

[DorsetLady PMRGCAuk volunteer in reply to SusanEleven]

Didn’t work on my knee -but that was bone on bone when I tried it..but it works very well on my right shoulder which is just beginning to complain -but that because there is still cartilage for it to work on.

You need to start using using at the beginning…too late and it probably won’t help.

[agingfeminist]

I had severe muscle myopathy on mega doses of prednisone (60mg). Now (almost 3 years later on 3.5 mg (third attempt) and at last having some return of muscle strength. Walked 200 meters today rather than my usual struggle with 50 meters. I tried simple exercises everyday throughout...useless... it is only now that I have slight improvement. And of course no problem having muscle myopathy and PMR. Take everyone's advice and reduce slowly. Good luck.

[Katkin1 in reply to agingfeminist]

Thank you. If exercises didn't help, what has made you able to walk again please? I'm doing exercises and have done for months but they are not making much difference.

[agingfeminist]

I just kept on with gentle exercises every day...and suddenly they seem to help. You do them as an act of faith...because one day they will help. I almost gave up after 2 and a half years of no improvement...but suddenly there is slight improvement. It is a long and tortuous journey...we must just keep plodding along...

[Katkin1 in reply to agingfeminist]

Thank you agingfeminist.

[Yorksman]

Your post is really helpful, particularly about leg strengthening exercises. Can you tell me where you got the exercise information from please. I think it could be useful for me.

[Katkin1 in reply to Yorksman]

Hi Yorksman. I got mine from my physio.

[Yorksman in reply to Katkin1]

Thanks, can you give me a brief outline of what the exercises are please? My GP has referred me to a physio and am wondering what to expect.