reducing steroids

Faygirl - I knew I'd seen someone ask about chest muscle pain and forgot to answer it!

I had pain radiating around my ribs just below my bra strap level for a long time. Sometimes it would be a sort of ache and sometimes it was sharp pulling pains as if I'd strained a muscle by turning or lifting.

I think it comes from the back muscles which get all out of sorts because you aren't walking or standing properly. I used to visit an osteopath and that helped a lot but the best things I found for me were sessions with a Bowen therapy practitioner and doing Pilates. Bowen is sort of chiropractic for soft tissue and works on a principle of realigning muscles and their attachment to the bones. My Pilates teacher was particularly well trained in rehab so was brilliant about adjusting exercises you found difficult. I also was doing that during the first 5 years of PMR when it was not so bad - I moved about the same time it got bad. I miss the Pilates especially but I know I would be very restricted in what I could manage now - but that is maybe because I don't do it.

Eileen

Eileen

My consultant did not explain that I would require to take the pred alongside MTX. I was under the impression it would be a separate medication! When I was leaving she told the receptionist to give me the MTX leaflet. This leaflet is written for RA patients no mention of PMR. The information on the leaflet was very negative with no research information to back up its effectiveness not for the conditions on the leaflet and certainly not for PMR! I often feel that PMR is a disease that busy healthcare professionals do not have the time or inclination to get to grips with this condition. It is very disappointing.

In relation to my steroid reduction regime. Thanks to this website and the excellent advise and support I gleamed from standing on the sidelines. I followed Radner's (sorry for spelling) method. At one point I did get down to 2.75 mgs I was in real bad pain and my GP persuaded me to go back to 10 mgs. I gave in that was last October 11 and I have been cutting down at 1/4 mg per month titrated over the weeks. I got down to 4.5 mgs in sept 12 but real bad flare up forced me back to 10 mgs. I wasted no time at 10 mgs this time managing to reduce 2 mgs at a time and have arrived at 6 mgs at the moment. I have a lot of pain in the morning but I take painkillers and force myself to walk and move about. It never fails to amaze me of the state I wake up in and how different I can be about 3 hours later as long as I keep on the move.

I have tried acupuncture it did give me relief but only for 3 days at a time but not had structured exercise I have considered yoga perhaps basic moves. The problem I have is that as soon as you mention to exercise coaches muscle pain or steroids they are reluctant to let you join the class. What is needed is a specially designated rehab class for people with functional difficulties. There must be many people with all sorts of inflammatory

conditions that would benefit from the exercise and the social interaction. You just don't know what to do for the best push yourself and pay the price or stay safe and not progress. I just wish I had the answer

Thanks to all

Faygirl

"You just don't know what to do for the best push yourself and pay the price or stay safe and not progress".

Definitely not push yourself and pay the price. It is possible to "stay safe" and still "progress" if only by the simple exercise of daily walking, short distances and slowly in the early days and then gradually building up as stiffness/pain allows. Walking is an excellent weight-bearing exercise so can help our bones against the steroid side effects.

I found Tai Chi to be the best exercise class for me with its gentle movement and stretching exercises, plus of course the controlled breathing which helps with stress levels. Having spent many months of my first undiagnosed year bedbound, my balance was quite badly affected and, once diagnosed and on steroids Tai Chi definitely helped to restore that. At first I often couldn't raise my arms even half way towards my head but gradually as the inflammation reduced, my movement improved.

Later, I joined an 8-week Nordic walking course - another excellent exercise to protect the bones, and the poles of course give added support. I was lucky enough to be accepted on to a free course at the time run by Age UK - I understand courses are still available in many areas, although not free.

"I just wish I had the answer"

Don't we all!

I think your primary problem has been trying to force the reduction. MTX was suggested as a possible adjunct for patients who were not responding to pred or who had 2 or more flares. The medical literature says quite clearly that the main cause of flares is reducing the pred too far or too fast - and that is what happened to you. I really don't understand how it can then be said this is a difficult case of PMR - it wasn't the disease that is causing the problem, it is the way of dealing with it that is at fault. It should have been explained to you that if you are in really bad pain - the pred dose isn't enough for the amount of the underlying disease AT THE PRESENT. It doesn't mean you won't get to a lower dose, just not yet. I repeat: the idea of the reduction is to find the lowest dose that controls/manages your symptoms so you are not in a lot of pain.

A lot of experts suggest going up by 5mg if you have a flare - which is about what you have done. Before you got to 4.5 had you had some symptoms? Once you start to have pain and stiffness as you reduce it really should be taken as a sign you are probably approaching your "maintenance" dose, a lowish dose that you can stay on for some time without the inflammation gaining the upper hand.

I know of noone who advocates the use of MTX on its own in PMR, I have seen NO studies anywhere. It is used together with the pred in the hope of being able to use a lower dose and even that is disputed. If she does use it she must still reduce your pred dose slowly or she is running the risk of you having an adrenal crisis. I wonder if she thinks you may have LORA (late onset RA) - some patients do get diagnosed with it later after an initial PMR diagnosis - does it morph or was it mistaken? Noone knows - they don't know a lot of things in autoimmune disease ;-)

If you want to find more about MTX there is a lot of info on a site called rawarrior run by a young woman in the US called Kelly - google it to find a link - which is reliable and there are a lot of comments from women with RA who take or have taken it and their experiences with it. Yes - almost everything is aimed at the RA patient, there are lots of them, they are often young and still working. We, on the other hand, are older (by definition, over 50) and, until recently at least, not really part of the working population. We're not "sexy" as far as the pharmaceutical industry is concerned. It is likely that until recently most patients with PMR didn't even go to the doctor "it's my rheumatics again" accepted as a natural part of aging. Our generation is different - our expectations are much higher.

As far as the morning stiffness is concerned: an electric blanket switched on BEFORE you get up will ease your muscles into the day to some extent. Setting your alarm very early and taking your pred at stupid o'clock and then going back to sleep until you have to get up also allows the pred to get going - take a yogurt and the tablets to avoid upsetting your stomach. The yog will be fine overnight next to your bed. Then a warm shower with gentle stretching movements in the shower will loosen the joints. Some people find splitting their dose 2/3 in the morning and 1/3 in the evening works for them. It was actually mentioned in one of the German references I read the other day - I've not come across it anywhere else in the literature, I just know several patients who do it and it works for them.

Exercise: walking is as good as anything if you can - I can't, it makes the hip bursitis worse. However, the physios here recommend aqua aerobics. There is a new programme here where you get a refund from the health system if you complete a course of exercise so I had a long discussion with the physio who runs it the other day. In fact he had nothing suitable for me at present but the emphasis was on the pool. You can go to the pool and just walk in the water - and if you can find a friendly class join in the aquacise. They can't see how much you do and you can set your level for yourself in most classes. I found it brilliant - I was a member at Bannatynes near my home in the northeast, they had aqua every day except Sunday. The earlier it was in the day the better a day I had after. I knew exactly what I could do and when to calm down. There was another lady who had chronic fatigue syndrome who did the same classes. We would get out and leave early if we got to tired. Another friend near Middlesborough goes to her local B's and does aqua and uses the PowerPlate which she highly recommends (google that too) - the pool (usually warm) and the plate alone do justify the membership cost plus they have a steam room and sauna - bliss! I have read scientific studies about the vibrating plate technology and it is recommended for use in residential homes as a way of improving balance and strength in the elderly and handicapped. They hadn't had the one at my gym long before I left but I had used it and loved it. I'm trying to find one here - some hopes! I also did Iyengah yoga (postures) which was also good - very good and helpful teacher who appreciated the problems - and Pilates, omitting some things.

Hope this helps!

Eileen

I'm a bit late in to this discussion, but for anyone interested I did take MTX for two years as a steroid sparing agent. I was having real difficulties in reducing the Pred and had some weird side-effects showing, so I weighed it all up and decided to try MTX.

For the first year it worked fine and I was feeling good having reduced to 2.5mg daily. I had only achieved this once before at the beginning (better explain that I have been on steroids for nearly 11 years now and that first reduction was blasted by being diagnosed with late-onset asthma) but then I had the daddy of all GCA flares - the low dose was apparently controlling the PMR but allowed the GCA to slip through the keyhole. Back to 40mgs a day and my language was not printable!

The second time around it became apparent after a few months that the MTX was not doing the job any more and I asked to be taken off it, no problems there. I had a further GCA blip but have now (I'm whispering this quietly) managed to get down to 5/5.5 alternate days and feel better than I have for some time. If the GCA hears me it will come back to bite me!

As far as the MTX itself is concerned, I did have side effects to begin with - nausea and a bit headachy, but they disappeared after a few weeks and for the rest of the time I was fine. However, that is just me - like Pred (and PMR) it's a very individual thing - I don't believe now that anyone can forecast how they will be on it/them, least of all doctors

I so wish we had some of the gyms/centres where I am now living, but this is a retirement area (I should know as I retired here) but it does seem to be peopled with little old ladies (and gents) on their racing mobility scooters; I'm afraid to shout 'exercise'! at them, they might break into little pieces.

Oh, as far as work goes, I was diagnosed at 57 having had the symptoms for some considerable time previous to diagnosis. I worked until I was well over 65 and that includes 18 months on MTX - it was after we had moved here to sunny Sussex that I gave it the push. I was very, very lucky, I had the best team of work colleagues I could wish for and we had a lot of laughs along the way.

Hoping for short PMR journeys for all the new ones -

Catie

Hi Everyone

I was wondering if anyone could help me again. I am now following Eileen's advice about the electric blanket and Mrs O about the yogurt etc. What I was wondering about was has anyone any thoughts on 'pillows' since reducing the pred my neck is sore getting up I then use a wheat bag which helps but I was wondering if a different pillow might help?

Dalzell

Hi Dalzell

I have encountered the same difficulties with neck pain. I have bought a variety of pillows with no effect. My physio advised just one flat pillow. I use this but t also have a small heat pad placed over the pillow the heat seems to be the best to loosen the muscles for me. I got it in Argos. It turns itself off after 90 minutes. Would be glad to here of any other remedies

I had a very sore neck early on after diagnosis, which disappeared completely when I bought a shaped memory foam pillow - it has a raised area at the 'bottom' of the pillow which fits into your neck and so keeps the neck and spine straight. I know they are not for everyone, but I do think they are worth a try.

Catie

Once again thank you for the advice it's great to have everyone out there with experience of these things.

With regards to the memory foam pillow - do you need to sleep on your back?

"With regards to the memory foam pillow - do you need to sleep on your back"

No - if you get the right pillow you will be able to sleep comfortably on your side - that's the idea. There are all sorts of designs but you need to try which fits you best.

A physio recommending one thin pillow must have been hallucinating - I take it they didn't ask about sleeping position? That would be for sleeping on your back, a thin pillow is usually useless if you sleep on your side isn't it! I have two totally different ones - the old one is a relatively cheap solid sort of effort. The other is a memory foam one and although I had tried it before ordering it once I was using it all night it was no use when I was still having the night sweats - it just kept getting flatter and flatter because I was so warm. Now I use a very scrunchy fairly reasonably priced IKEA one and have no real problems but the ergonomic pillows are more use now too. Sometimes you can use a small pillow together with a normal one to get the right shape.

But most neck problems tend to stem from back muscle spasm. If you can afford it try and find a good massage session. Lots of private physios offer it - I bet you have some tightness in your shoulders which is affecting your neck.

Eileen

Ouch! Yes I remember that neck pain. I tried so many different pillows, some cost a fortune, but I didn't find any of them comfortable, even the wedged pillow that Nefret recommends and which a close friend finds great for her. Whether that is because I'm unable to sleep on my back because of a spinal problem, I don't know, plus I've got quite a large protruding bony bit at the middle of my neck at the back. However, at one of my Pain Management classes that I attended, the physio there recommended a medium to softish ordinary pillow and demonstrated how to sort of scrunch it into and around our necks (sorry, brain not in gear today to describe that any better . I do this but with two such pillows and everything is fine. At my worst, I invested in quite a large electric heat pad and used to sit with it around my neck and shoulder area - sounds the same as Faygirl's as I also bought it in Argos. Bought one for my neighbour as well and she swears my it.

I mostly sleep on my side, usually the left one. What I can't do in any position is sleep with my neck and spine out of alignment - I have to be completely straight. Like Mrs O, I did have a problem with it when I was sweating badly and even now I sometimes have to wrap it in a big towel. If I do that, I can dispense with the very thin pillow I use underneath the memory foam one (I put my phone under it just in case there are any calls from NZ in the middle of the night).

I believe the next generation of memory foam pillows are being produced using crumbs of the foam. I intend to try one to see if it is any better although I am satisfied with those I have at the moment.

Catie

Once again thank you very much for all your suggestions - the memory foam crumbs sounds good it sounds more like a normal pillow I'll certainly look out for them. Last night I tried scrunching my pillow under my neck making a wedge shape - it worked really well - nowhere near as much pain this morning. Thank you all I really appreciate it.

Hello, First time I have ever joined a blog but have found all your comments useful but depressing.

I was under the impression this condition blows itself out after 2years. With careful drug management.

My question is, has anyone had adverse reaction in the eyes taking pred.

.GP has just diagnosed PMR and she wanted to treat but I opted for private (so lucky) rheumatologist.

Appointment tomorrow, today at 5.30pm.I cant belive i,m awake at 3.40 am.

Such pain and immobility is unreal, I was playing tennis 4 weeks ago. I fully understand pred. Is the drug given for PMR but I have closed angle glaucoma and am terrified of taking this kind of steroid. A cortisone injection given for trigger finger had huge reaction on eye although eye man refused to link the two.

Would be so grateful to know if anyone has had eye problems while on pred.

Many thanks in anticipation of any answers.

DB

hi i have not had eye problems but i am sure someone will come back with info ,i totally understand your fear of sterroids and most people go through a period of ??can i manage without but apart from very very mild cases and even then risking gca the answer quite frankly is no you cant control pmr without steroids ,reading the info on the other forum will help you understand ,burning itself in two years quoted by many drs etc is a myth this a goal where goal posts move if you are free from pmr in two years great but we are all different and our pmr is unique to us .its a slow long journey but bear in mind once the steriods dampen down the symptoms life improves with some adjustments !!!! eg more rest and gentle exercise .keep coming back it helps to talk to people who have been there and the more i hear of drs etc the more i realise they are not always well informed good luck carolk