PMR and Tendonitis

[josvanloo]

I am 54yr old, live in Lancashire and was diagnosed with PMR in March 15. At the end of October, I had to have an operation on my ankle due to a 30yr old fracture (removal of “debris and inflamed tissue- bone shaving).The operation went well, my feet recovered fully but there was a period of 10 days that I had to use crutches. My PMR is mainly in the upper arms and the crutches really hurt me. This pain was reduced first, but then returned when I started swimming again after the wound closed. The symptoms match the Tendonitis description in the book by Dr Kate Gilbert. I thought that maybe the PMR had finished because the morning stiffness was gone, but when I tapered down from 2.5mg to zero (probably too fast) it came back – the symptoms might have been be hidden by the Tendonitis pain. This is all self-diagnosis, so I might be completely wrong – I see my GP on Tuesday. However is there anybody on this forum with Tendonitis / PMR and how can you set the right dose of steroids in this case? What is the best painkiller so I can sleep at night ? Thank you for your help – Jos

[piglette]

Josvanloo are you saying you have reduced to zero pred in nine months with PMR? With having an operation as well that must be some kind of record. Going from 2.5mg to zero so quickly is also pretty amazing. I hope things go well with your GP.

[Celtic PMRGCAuk volunteer]

Jos, as piglette has said in her reply, that is a very fast taper from whatever your steroid starting dose to zero. Although I have come across a few very lucky people who have managed to recover and get off steroids in a year or so, I haven't come across anyone in the past for whom a definitive diagnosis of PMR has gone into remission in just 9 months.

Relapses can be more common in those who manage to get off steroids very quickly, and it sounds as though your fast steroid reduction programme, together with the trauma of your surgery, has caused returning inflammation.

You have admitted you may have tapered down too quickly from 2.5mg - certainly the lower you get on the dose, the higher the percentage drop, so you need to both reduce by smaller decrements and over a longer period whilst your body adapts to the withdrawal.

To answer your question as to the best painkiller to help with your sleep, if it was me I would get back on whatever dose of steroids is needed to deal with your present inflammation that is most certainly the cause of your returning morning stiffness and upper arm pain, although the crutches obviously aren't helping with the latter. Good luck!

[polkadotcom]

If you really have dropped from 15mg to zero in nine months, then it is amazing - but it was far too fast so I am not surprised that you are having problems now.

None of us want to be on steroids, but if you have to take them then it would make more sense to take the dose which is hitting the inflammation hard. If you keep it at 'not quite' the level necessary then you are getting all the downsides without any benefit. As soon as you reduce, the inflammation will break through again and there you are on a carousel dose - otherwise known as yo-yoing up and down the doses for months.

Most medics accept that it is a minimum of two years at the very least to bring in remission, some lucky ones can do it in that time, some of us require a lot longer. Some require a great deal longer!

I have severe Achilles tendonitis, but whether that is due to the PMR, the Pred, or my hobby (in another life) of dancing, well who can say. Whatever the cause it is painful! Stretching exercises do help, so does a very gentle massage and I have had ultrasound treatments also which were really good.

Nevertheless, you do need to find out what your (yours alone - no one else can tell you what is right for you) current comfortable dose is and I would think that the best way would be to go to a dose where you are comfortable and relatively pain-free (I always opted for a 70% reduction in pain) and where you have some quality of life.

Ask any questions here - there is always someone around.

[MollyBloom]

Hi,

I am 53 and have had PMR & GCA since Aug 2015. PMR & GCA. 5 years ago I had to have a hip replacement due to avascular necrosis and thereafter had tendonitis from the hip to the knee for ages. Then after a lot of manipulation from a physio I was given stretching exercises to do which eventually sorted it. Eventually I stopped doing them and the tendonitis returned so you have to keep them up! Then when I was put on 60mg steroids when diagnosed with GCA the tendonitis disappeared (currently on 45mg). You must get a diagnosis first as it could be bursitis or something else, and then a referral to physio. The exercises are painful at first but worth bearing with.

It is horribly painful and limiting so good luck with it, I hope you get it sorted.

[PMRpro Ambassador]

It is quite common for PMR to feel better when you have other problems. Some people find it is better when taking antibiotics.

I spent 9 months on crutches because of achilles tendonitis - if the achilles tendon is inflamed then there is a great risk of it being damaged if you trip or turn an ankle over on a kerb for example. The crutches were to help avoid falls. Mine was due to being given a quinolone antibiotic while also taking Medrol - it is a side-effect. As polkadotcom says, you need it properly diagnosed to see if it is just tightness which can be helped with exercises or whether it is at the acute stage where you may even need to immobilise it. Or if it is even a delayed infection.

You say "This pain was reduced..." - what pain? PMR or the achilles pain?

Although 2.5mg may sound a very low dose it may have been enough to manage your PMR - you would be by no means the first to think they were fine at 2.5mg so they'd tapered off it only for the PMR to return within weeks. The best pain killer for PMR? Pred, at the correct dose to manage the symptoms, nothing else really works in PMR - NSAIDs are said by some doctors to help but I have yet to meet a PMR patient for whole they worked effectively. And they have side-effects too - some of which are worse than pred.

[josvanloo]

I appreciate all the replies and comments - I can now go better prepared to my GP ( I live in a small town where there is a shortage of GPs - have a 2 week wait for an appointment - first option was not Ok for me - so ended up having to wait 3 weeks) . That's why I have so many unanswered questions.

As an example - lifting four 2 liter bottles of water - or 8kg . Early PMR this was not a problem - now it is after the 10 day crutches period. If you have pulled something, or stretched a muscle - do the preds actually help in a case like that to heal/reduce pain ? Sorry but I really don't know.

Took paracetamol at night last week - to avoid fever due to a cold - and slept really well. It appears to help me more than the preds . Can this be real or is this an illusion ?

Read somewhere that a reaction to "foreign bodies" could cause the problems with your immune system. During the operation on my ankle "crystals" were removed - some 30 year old debris had crystallized due to high energy - very rare said the surgeon. That's why I tried tapering off to see if there was a link (probably just wishful thinking from my side ) anybody on the forum longterm seeing a similar post or remark ?

Was only off preds 2 days - back to 3mg and had a pleasant day today hill walking.

Thanks to everybody for their help and support - Jos

[PMRpro Ambassador in reply to josvanloo]

Apparently some people find ordinary pain killers help in PMR - but it is very unusual. If 3mg pred does it for you it probably has fewer side effects than long term paracetamol - honestly! It has also now been decided that paracetamol won't help a fever - I don't find it helps anything but maybe I'm simply too sceptical. If 3mg got you back to hill walking and you had been OK at 2.5mg then maybe 2mg will be enough - and then you will meet doctors telling you it is purely placebo effect. It isn't - but you will have to convince them of that.

Lifting 4 x 2 litre bottles? Dear lord - I can barely lift one! Even now! I really struggle to grip a 2 litre bottle - two hands only.

No - all pred does is relieve inflammation. If you have overdone it and stretched/torn a muscle it may help any pain which is due to inflammation but it won't help the healing process - in fact, it may delay it if you are taking a high dose. I've never found it slows healing down though.

[josvanloo in reply to PMRpro]

Thank you PMRpro - I also read some of your older posts and especially the one on the "half time" of the steroids and the 12-36 hour potential difference seems to apply to me and I knew nothing about it. I also used to split my dose morning / evening in the beginning until I reached 5mg and only had 5mg tablets. I am 90% OK during the day - but getting a good night sleep is still an issue. So I think I am going to split my dose again and try that .

Scanning my body last night I get the impression that flying Ryanair - saving money on checked luggage - but carrying a 7kg daypack on your shoulders for 2 days is another bad idea when you have PMR

[PMRpro Ambassador in reply to josvanloo]

I think that is a fair deduction! Ryanair is fine as a bus service - but that's about it!

Can you not get 1mg tablets? You will find it difficult to reduce below 5mg without them. 2.5mg by cutting your 5's will be not much better.

[josvanloo in reply to PMRpro]

Went from 10 to 5mg w/out 1mg tablets - got them only when I got below 5mg - and then I continued to take them all together in the morning . Now i will try again 1/2 or 2/1 or 1/1 - see what works best

[Lafontainepam1]

I also have tendinitis, it is in my left wrist. My pain 41/2 yrs ago started in my left shoulder. The tendinitis started this last Feb., when I have my PMR flare ups and are to low of a dosage of my Prenisone it hurts pretty bad. Best advice, go up in your Prednisone to maybe 5mg. I'm sure you will be pretty pain free! Good luck!

[josvanloo in reply to Lafontainepam1]

Thank you . My wife rubbed some Tiger Balm on my shoulders / arms last night and I slept well . Not sure if this is a permanent solution though. No pain during the day.