I am going round in circles trying to decide what do for the best!

[Omanain]

Between 1977 and 1990 I had a lot of surgery on my spine and the resulting nerve damage sometimes causes severe pain, usually in my back and legs. Fortunately these bouts are quite infrequent.

I developed PMR during one on these bouts earlier this year. I thought the pain and stiffness in my hips were new symptoms of my back problem and it was only when it moved into my shoulders and neck that I realised it must be something else.

At the end of June I started on 10mg pred with instructions to decrease 1mg per month starting August 1st. MXT was also suggested which I declined!

I don’t know what my effective starting dose might have been. At first my GP prescribed 30mg pred for 6 days followed by 30mg for 5 days, reducing by 5mg every 5 days which would take me to my first rheumatologist appointment. The rheumatologist then gave me an injection which wore off after 4 weeks. After which I was prescribed 10mg pred.

At first I felt quite well but got a bit over enthusiastic with an exercise and pulled a muscle in my low back. This has taken ages to heal. So often I find it difficult to know which pain is what!

I now have a lot of pain around my middle, in the muscles below my ribs both front and back. I am fairly sure this is nothing to do with my existing back problem but I don’t know if it may be PMR pain.

I am so confused. I don’t know if I should start today’s reduction from 9mg to 8mg as instructed, or stay at 9mg for now, or even go back to 10mg. If I go back to 10mg they may try and insist on MXT which I won’t take but at the moment just don’t feel up to the fight!

I would really appreciate your advise.

Kate

[Berylholley]

Hi Kate I am Beryl from Birmingham I have some similar problems. I am 87 and was diagnosed with PMR and suspected GCA in May this year. Started on 40mg prednisolone reduced to 35mg on 12th day had horrendous lower back spasms in my muscles and around my waist. Had to have paramedics. Since reducing down to 13mg have had another episode. Pain moves from one side to another and upper waist. If I inadvertently stretch it is very painful. Doctor not much help. Any suggestions?

[Omanain in reply to Berylholley]

Hi Beryl, if you read PMRpro's answer to my post you may think you have the same problem. It certainly sound like it to me. I will just take painkillers for now as my existing condition rules out physio and massage which the Mayo clinic suggests as possible remedies. Also heat pads, which may be possible now the weather has cooled down a bit.

I hope you get some relief

Kate x

[Berylholley in reply to Omanain]

Thanks I am going to follow your progress. BTW I am only 84 lol don't know what made me put my husband's age! Must be pred head. I have had some accidents and my MRI scan showed 3 fractures seeing my doctor Monday so am going to ask the details. Xx

[Omanain in reply to Berylholley]

Good luck with your appointment. Keep us posted. Three fractures will account for a lot of pain I should think.

As for pred head. Words seem to just fall out of my head and names.......... so you putting your husband's age instead of your own is minor stuff!

[Dewdrop456 in reply to Berylholley]

Yes good luck with your appointments.

Talking of Pred head I was in the Post office the other day and couldn't remember the year. I started to put 19 !!! then completely panicked and my mind went blank !The post mistress had to help me .Of course the days are often tricky but I can usually fill in the year a bit closer than that.

[PMRpro Ambassador in reply to Dewdrop456]

I nearly did that the other day! Must have been thinking of DOB I think - it was for the bit of paper to prove to the pension people we are still alive...

[Dewdrop456 in reply to PMRpro]

That's funny!

[SheffieldJane]

No wonder you are confused. It is a very muddy picture. I know that I would have suffered with that prescribing pattern. Is there a particular medical reason for your doctor racing you off steroids so quickly and pressing Methotrexate on you? In my experience Methotrexate is brought in when you can’t get off steroids after a long period and it doesn’t always help.You have only been diagnosed with PMR for a few months. The pain around your ribs may well stem from your exercising injury. I have had pain in that area with PMR alone though - possibly one of the inflammatory conditions associated with it perhaps it’s something like Costochontritis.)

I would be reluctant to reduce my dose whilst so symptomatic. Without the complicating factors in your case, I would try 15 mgs and plenty of rest. If that worked I would taper slowly and gently until I reached my optimal dose. PMR can last for years and it needs careful tending.

You are going to have to gird your loins and face your doctor. I can so understand not having the stomach for it. However, some of these dreaded appointments turn out just fine.

[Omanain in reply to SheffieldJane]

Hi Jane, My partner is from Sheffield and a keen Wednesday fan.

Thanks for your reply. The first problem I had after being prescribed such a last starting dose was that all my pain, back pain as well as PMR pain disappeared. Now of course on the lower doses the back pain is there again plus this added pain below my ribs. Trying to work out which pain is what means I am in that wavering state between two possible courses. In this case three possible courses - increase pred, stay on same dose or carry on with the planned DSAS reduction!!

I think the pain is probably myofascial pain as PMRpro suggests so I will treat it as that for the time being. And yes I will try and rest more. I was running a U3A German group until earlier this year and I am constantly trying to keep studying so I don't lose what I know. But I think it is really giving me more stress than pleasure at the moment so maybe I should try and let it go until I am a bit better.

I know 71 is not terribly old these days but the things my friends of a similar age, and some 10 years older do sometimes make me feel a bit of a wooz.

Now, as you say is time to gird my (painful!) loins and stand up for myself.

Thanks again

Kate

[SheffieldJane in reply to Omanain]

Big shout out to your partner! Thanks to PMRPro for correcting my nominal amnesia. I know what you mean in the great health lottery PMR is not so bad - handled right!

[PMRpro Ambassador]

What a bizarre way to go about managing PMR! The evidence-based recommendations for the management of PMR say the starting dose should never be below 12.5mg. The taper you were given rarely works in PMR and if you are going to use injections it makes more sense to use them entirely (included in the recommendations). It's been a rollercoaster with an ADHD touch, rushing backwards and forwards. Your poor body - the injection wearing off let in inflammation and then you weren't given enough pred to clear things out.

Have you any chance of a rheumaotlogist (or GP) who will calm down and apply themselves to the problem of the PMR and pred reduction?

The rib pain could be one of a couple of things. One is the costochondritis SJ mentions - or possibly myofascial pain syndrome that is causing spasmed muscles in your back. It is more common in patients with PMR and the trigger spots it creates, hard knots in muscle groups that are concentrations of the same inflammatory substances that cause PMR when they are systemic, can irritate nearby nerves and that leads to referred pain in the areas the nerve supplies. The trigger spots form in pairs alongside the spine and one pair is about rib level - the referred pain is around the bottm of the ribs.

[Omanain in reply to PMRpro]

Hi PMRpro I wonder if in your capacity as mentor if you would mind looking at the following. As I am worried about my GP and rheumatologist appointments I thought I would put my understanding of the situation to them and see if they agree. The one thing missing are the reasons for my reluctance to take MXT. Do you have any information regarding how useful it is in helping pred reduction. So do you think the following is more or less accurate? -

As I understand it prednisolone is prescribed at the necessary dose to get the pain under control. Once the pain is under control the prednisolone is gradually tapered until it gets to a point where pain returns. This means the PMR hasn’t yet gone into remission so I should return to the previous dose for a couple of weeks before trying again. This could take some time as the average time PMR lasts is 6 years.

The prednisolone only helps with pain, tiredness and other symptoms may still occur while on prednisolone.

Thank you

Kate x

[PMRpro Ambassador in reply to Omanain]

Yes - that's about right. Except I wouldn't agree with the "stay at the previous dose for a couple of weeks and try again". If you get to a dose twice and it "fails" it is your body telling you you have found your "Holy Grail", the dose that manages YOUR PMR for the moment. Wait a couple of months before trying, not just a couple of weeks.

Three studies were done using mtx as a steroid sparer. The results were mixed - basically one said it helped reduce the pred dose, one said it didn't and one didn't know. The conclusion come to by the committee and then recommended in 2015 was that it is something to be tried in agreement in the patient - there are no guarantees.

rheumatology.org/Portals/0/...

Recommendation 7

One of the studies - done in Italy and (I think) the one that came to the conclusion that mtx did help reduce the dose of pred but it took a year to be evident - was followed up 5 years later. And then they came to the conclusion that while it did reduce the total dose of pred, the overall side effects claimed to be due to pred were no different. So given the side effects of mtx I'm against adding it in just willy nilly. IF it causes no problems it may be fair enough - but at least a third of patients who try mtx, whether for PMR or for RA where it is the first line approach, have to stop taking it because of the side effects.

I have discussed the use of "steroid sparers" with a leading immunologist who has concerns about the use of extra immunosuppressant therapy alongside pred - because she believes that this increases the long term risk of further disruption of the immune system which may increase the risk of cancers.

I did try mtx for 4 weeks - a short trial but the side effects I experienced in that time really did not encourage me to want to try it for longer to see if the side effects improved. I had no nausea - but my hair was falling out in chunks and the fatigue was overwhelming to a degree I couldn't have functioned much longer to see if they improved.

[Omanain in reply to PMRpro]

Thank you this is very helpful.

I have had bad reactions to many of the things I have been prescribed this year. Mostly to treat the recurrence of my old back problem or because I had TIA a couple of years ago - horrible leg pains from statins, terrible acid from amytriptiline, The Omeprazole prescribed to deal with the acid caused by the amytriptiline - well, I think it kicked off my PMR, it all started 2 weeks after I started taking it and an article I found on-line from the BMJ cited case studies of people with my symptoms. The difference being that after stopping the Omeprazole for a couple of weeks they got better and I didn't! I think my GP was as confused as I was and was probably quite relived when my hands seized up and my blood showed inflammation! Even the rheumatologist said he had heard things about Omeprazole. He wouldn't go into details though. And lastly I took 2 doses of A.A. and was really ill. I felt sick and faint, had diarrhoea and every time I stood up the room swam, so I'm not prepared to give MXT a go!

It is strange that there is such a difference of opinion between the medics over MXT. Having read the link you gave me it seems really odd that anyone should come to the conclusion, based on current evidence, that prescribing the stuff for PMR is a good idea.

Thank you for all the trouble you go to , reading all the post and giving us the benefit of your knowledge and wisdom. Are you keeping well yourself?

Kate x

[PMRpro Ambassador in reply to Omanain]

I have a theory is that part of it is rheumies who have misdiagnosed patients as having PMR and it isn't, either it is another inflammatory arthritis which probably WOULD respond to mtx or it is one particular form of PMR. I am sure there are at least 4 different varieties, maybe more, all respond to pred but some respond at least partially to other drugs. Then you add to it their terror of pred - which they have been taught is bad and has lots of dangerous side effects. Used properly and with added management the side effects care not half as bad as they think. But quite how you get through to a paternalistic generation of doctors I don't know - both ways, some don't take us seriously and others think they know our bodies better than we do ourselves.

And sometimes I really do despair...

[Omanain in reply to PMRpro]

And sometimes hey treat us as if we are idiots.

A couple of years ago my partner had a really bad cough and was quite unwell. Our downstairs neighbour (we live in flats) was diagnosed with whooping cough and as my partner had identical symptoms he made an appointment with a GP. A different doctor but the same practice. He made the appointment on line and in the box that asked the reason for the appointment he put 'suspected whooping cough' When he walked into the surgery the doctor smirked at him and said 'We don't have whooping cough in the East Riding'. When told the neighbour actually did, he looked up her records. He then, reluctantly decided to have my partner tested. When he tested positive he did at least have the decency to telephone him and let him know, but the damage had been done my partner was very angry which you can do without when you are ill.

I know they are busy but how much time, ours as well as theirs would be saved if only they would listen to what we were saying in the first place.

You must find it doubly annoying as you have obviously carefully researched your stuff.

If you think there are at least four types of PMR as well as all the other things it could be it must be quite hard to arrive at a diagnosis. But surely if they want us to take toxic medication there must be some really good benefit. My sister had bowel cancer 8 years ago and it is thanks to this toxic medication that she is alive and well today, so I am not ungrateful. But in her case her life was at stake. In my case there is no evidence at all that mxt will enhance my life in any way. This probably applies to all of us with PMR.

[PMRpro Ambassador in reply to Omanain]

I'm annoyed on behalf of others, not myself because I am very lucky in my doctors now - but it was a very different matter in the UK. Have I asked - where in the East Riding are you?

[Omanain in reply to PMRpro]

I live near York. I don't want to be more specific on an open forum as I live in quite a small place. York itself is not in the East Riding and I am on the East Riding side of York!

[Omanain]

Thanks for this. Of course I now know it was crazy but at the time I had never heard of PMR!! Now I seem to know a lot more than either the rheumatologist or my GP! My GP is likely to be open to suggestion but I have only met the rheumatologist once and I am not sure about him. However my GP is doing the prescribing so I'm in with a chance. He has put me a repeat prescription for 9mg a day and it will probably stay that way unless I tell him otherwise. No-one has told me I can to a DSNS reduction but I'll cross that bridge at my next rheumatologist appointment on 1st November, when I will, like the last appointment see the specialist rheumatoloy nurse. I prefer her to the rheumatologist.

The pain I have at the moment seems fit the symptoms of myofascial pain quite well so I will treat it as that and take painkillers until I see my GP on Friday and see if he has any better ideas.

Thanks again

Kate

[HeronNS]

I know it's not readily available outside North America but there are a few clinics which provide low intensity light therapy. If you can access it, it might be very helpful to you. I have used it as it helps decrease production of cytokines, but mostly it's used for injuries, including long standing neurological damage.

bioflexlaser.com/

[Omanain in reply to HeronNS]

Hi Heron, I am in the north of England so it is difficult to access any unusal therapys, but I cannot find any clinics offering this. Not even in London. There are though gadgets you can buy on line - expensive but not out of the question. Do you think they are the same thing? I cut and pasted the following. What do you think? ----

Light Therapies

A novel therapy introduced to western medicine over the past 15-20 years is photo-biostimulation, or light therapy. Phototherapy is the application of specific light wavelengths and energies to body tissues that elicits a complex chain of biochemical responses. Most of the focus is on red and near infrared wavelengths. Much of the early work was conducted in the former Soviet Union and its East European satellite countries. The impetus was to improve performance and injury recovery in both military and athletic patients.

The technology currently being used in the U.S. is largely in the form of lasers. More recently, a number of devices have emerged which use Light Emitting Diodes (LEDs). LEDs provide a safer and more affordable technology for delivering light therapy (also referred to as phototherapy). Physiotherapists and sports medicine specialists are treating a wide variety of acute and chronic musculoskeletal injuries and pain with phototherapy. The benefits of light therapy are that they reduce the discomfort of pain and inflammation while promoting blood flow and the body’s own tissue repair mechanisms.

Thanks

Kate x

[HeronNS in reply to Omanain]

If you go to "Find a location" and type in London, England and a radius of 1500 km you will get one place listed, but the map shows a number more and you click on the little green markers to get the address of each. The treatments are generally offered through physiotherapists and chiropractors. I go to a physiotherapist.

[PMRpro Ambassador in reply to Omanain]

Where in the "north"?

[Omanain in reply to PMRpro]

Near York

[HeronNS]

The little gadgets you get on line, handheld devices, are not the same. The device needs to be calibrated for an individual's condition. The treatments I received were about half an hour each time. I know they can be longer for some conditions.

[HeronNS]

I see they've changed the website. it used to be very easy to find locations everywhere and there were several in the UK. I'll work on it and see if I can find more info.

[PMRpro Ambassador in reply to HeronNS]

All the ones I found in the UK were south of about Watford Gap - which to a northerner is almost London...

[Omanain in reply to HeronNS]

Thanks Heron.

[HeronNS in reply to Omanain]

Unfortunately it looks like there's nothing closer than maybe Stoke on Trent.

[Omanain in reply to HeronNS]

I'm afraid that would be too much the way I am at the moment but thanks for trying.

[HeronNS]

I hope you can find something which works for you.