PMR Symptoms, out of the ordinary?

Hi Cilla and welcome although I'm sure you'd prefer not to have had to find us!

Your question as to whether PMR can be brought on by a trauma rings bells with me as just a couple of months before all my pain started, I fell off a train (strange station platform, abnormally steep drop from the train and it was dark - platform has now been raised I hear!) As I have a slipped vertebrae at the base of my spine (spondylolisthesis), it can be quite easily injured and at first I believed that was the cause of my pain. Over the years since, I have remained convinced that my PMR resulted from that injury. I also know of a couple of people who have been diagnosed with PMR following surgery. Some people think a dose of flu may have been the trigger whilst others blame statins. So I don't think we'll ever get a clear cut answer, certainly at present there is no known cause or cure.

It sounds as though you're experiencing good care from your GP in the UK and I hope you feel better again now that you have increased back to 10mg. Once the blood tests have returned to normal and you start reducing again, you might find more success by reducing in very small amounts - some of us find it easier to reduce by just half a mg, but bearing in mind that only the non-coated Prednisolone can be cut, not the enteric coated.

It must be lovely sharing your time between Italy and the UK. I wonder if you live anywhere near Eileen in Italy - I'm sure she join in soon.

Hi Cilla and welcome!

I'm sorry about your experience with your Italian doctor - particularly surprising since there are two very big and active research groups here in Italy! Yup, that's right - I live in Italy too, at the northern end of the Dolomites in Pustertal/Val Pusteria! Where are you?

I was diagnosed before moving here and continued using my UK doctors - the GP not a consultant, the one I saw was useless! Then our trips to the UK got increasingly infrequent and I decided to use the system here. I had no trouble with the diagnosis side of things - but was switched from prednisolone (not available here) to methyl prednisolone, supposedly better. I didn't like it from the outset and after a very interesting summer now am on Lodotra, a prednisone used in rheumatoid athritis, which I find excellent thus far (all that's another story though).

I think it is unlikely that the PMR was brought on by either event you mention: I think it is much more likely that it was already present and they brought them to your attention. There is a much larger community on the other PMR/GCA forum (the link is to be found in the pinned post second from the top of the list of threads on the Polymyalgia rheumatica forum and several of us have realised that we have had low back problems and sciatica/hip problems for some considerable time, prior to diagnosis with PMR, and which tend to crop up if we have a flare or when our dose is reduced too far or too quickly - and it sounds as if that might be the case for you. The reduction to 7.5mg was too much - what sort of steps were you being encouraged to go down by? After 10mg you should stick to "never more than 10% of your current dose" for each reduction and - frankly - to be down to 7.5mg between March and now is pretty optimistic.

We have had a lot of discussion on the forums about the speed of reductions in the past and we encourage people to take it very slowly. Some rheumatologists are beginning to come round to our ideas, which are particularly associated with below 10mg and then again below 5mg - both of which tend to be sticking points. My own GP here in Italy, who is also a rheumatologist in fact, is also very for a slow reduction - although her version is more connected with remaining on a given dose for a decent period of time before the next reduction than making the steps very small to get the downward curve as smooth as possible. I've recently come across more info from experts about the reduction and timings which supports our concept but also introduces another aspect which I find very interesting. But slow and steady is the watchword however you do it.

I would be inclined to think that your hypertension is possibly associated with your PMR, as is the back problem and thigh pain but without knowing a bit more I wouldn't commit myself to any other suggestions. Can you not get a decent rheumatologist here? Or are you too far into deepest Italy? It has to be said, the medical services here in Alto Adige are very good still - Rome hasn't interfered with it yet despite trying rather hard. As an autonomous region though we can be very stubborn!

Looking forward to hearing from you again - don't run away now you've found us and do come over to the other forum where we have a laugh and mess about a bit as well as being serious a lot of the time, which makes it more like a real face-to-face support group.

Eileen

Thank you MrsO and Eileen for your prompt replies and very helpful advice.

I live in Italy most of the time - in Abruzzo which is on the Adriatic coast straight across Italy from Rome. It is very rural here and very much 'old traditional' Italy. My local doctor has only just got a computer to use in his 'surgery' so if you need repeat prescriptions you have to take the box in so he knows what he has given you in the past! He has never come across PMR before and is very sceptical when I try and discuss the condition with him. I also have a problem with the language here as the locals speak dialect and I only have a limited knowledge of Italian! So it's not easy!!!

So far I am still pretty immobile although I have increased the dosage to 12.5gm for the last two days. I do hope the pains will cease soon as we run a rental business and we are expecting guests over the Festive period and I have SO much work to do preparing the Villa for them. Things always happen at the wrong time don't they!

Thank you again for your help - it is so comforting to hear others have the same problem and how they manage it.

Cilla

Cilla

My remedy when my spine rebels is to don a support girdle - the last time was about two weeks ago and I had relief from my pain within a couple of days. Perhaps worth a try? If neither that nor the increase to 12.5 helps, then you may need to consider going back to the 15mg starting dose for a few weeks. You may then find you can reduce fairly quickly back down to the previous dose at which you felt comfortable. If that was at 10mg, then stay there for a month or more and try just a 0.5 reduction from there, to test the water so to speak, as it seems that somewhere between 10 and 7.5 was the stumbling block for you. Do let us know how you get on.

Hello

I am in my early days of treatment started at 20mg felt amazing and after five weeks dropped to 15mg and over the past four weeks have struggle with the reduction to feeling 80/90% as good. Saw rheumy today and his approach is interesting and for me feels right he has put me up to 20mg again saying that unless you get a really good handle on the inflammation at the beginning then you end up seesawing and ultimately take more steroids for longer. I was struggling to grasp how good I could/should expect to feel ie should I be prepared to put up with lowgrade ongoing pain in order to reduce the dose quicker but he was adamant that the target should be symtom free and then gradually reduce 20/15/12.5 then 1 at a time to 7.5 when they seem to worry less about the impact of pred on the system and then slowly does it. I do feel relieved that he isnt pushing the reduction too fast although a bit disappointed that I didnt make even step one reduction successfully. My markers are low to insignificant so the focus is on how I feel which is actually rather nice "I am not a number". Wish I didnt have this though.

Hi Angiebabie and welcome to the clan - even if you WOULD far rather not be here. We know that feeling very well!

You are so lucky - you have one of the good ones by the sound of things! I don't want a name (not the done thing) - but where is your rheumy based? It might come in useful.

He is expressing something we have thought for a long time - too many want to stick to a fixed reduction plan that then doesn't fit the patient. The pred doesn't cure anything as such so reducing more quickly by accepting some pain doesn't work - all it does is allow the inflammation to get away again. I likened it to a bush fire: you can damp down the fire or cover it with sand to exclude the oxygen, but as soon as it dries out a bit or you scrape away the sand if there are any glowing embers they will merely break out into flames again and you have to start all over again. And so you go up and down - and each time you seem to need a bit more to put the fire out. You are looking to find a dose that will control the symptoms to the best that is manageable - some people are never totally pain-free for some reason, others are.

I have to say I would disagree about 5mg reductions, 2.5mg at a time seems a better option to me because although some Do manage 5mg at a time, others are very sensitive to the jump in dose. Most tope people suggest not more than 10% of the current dose at a time - and many say that for below 10mg, 1mg at a time then as your guy is suggesting. But we have seen quite a few people who find even 2.5mg at a time hard work, and even at 20mg. We are all different - and at least your rheumy seems to understand that argument. Many of us find that 2 weeks is long enough to get the idea of whether a drop has worked - if the pain starts quickly and then improves it is probably your body adjusting to the new dose of steroid. If the pain takes a few days to appear but then gets worse it is too low a dose. That said, if you are sort of on the current borderline of what your body can accept it may take longer for the pain of too low a dose to appear. When you creep down the doses you are less likely to miss the point where your body is at the moment - you might be fine at 20, not at 15 but if you had dropped 1 mg at a time every 2 or 3 weeks you might have got to 16mg and been fine. If 15 wasn't, you could go straight back up 1mg and be fine. It doesn't mean you won't get lower later, just not yet. Don't feel you have "failed" - it isn't your fault in any way, it is just the disease process underlying the symptoms is still too active.

And a question - when you felt so good did you go back to normal activities? And then try to carry on when you reduced the dose? The pred allows you to manage your illness - as I said, it isn't a cure. It is very common to feel so great on pred, especially at the slightly higher doses, that you rush around trying to catch up. That isn't the idea. Part of managing the illness is to pace yourself - the fatigue will hit if you don't play your part. One very important aspect of autoimmune disease, where your immune system is not working properly, is rest and sleep - your immune system regenerates whilst you are asleep and if you abuse it it cannot do that.

When you are trying to reduce the dose, shelve anything that is unnecessary. No spring cleaning, no dinner parties, no running a marathon, literally or metaphorically. Dust is patient, if your friends won't wait, they weren't worth it, you have to learn to know when you have to say "No". It isn't for ever, it is for the week or two you are reducing - once you are down successfully you can have a bit of fun. Don't complete one reduction and start immediately with the next - have a week or two at a stable state. This is especially the case when there is something a bit stressful you can't avoid - like Christmas! Or visitors. And never feel guilty about buying ready-prepared ingredients, even ready prepared meals - although making your diet the best quality you can, with no highly refined carbohydrates full of empty calories and lots of vegetables and fish rather than meat, will help you feel better and help the healing process. Adding anti-inflammatory foods is also beneficial.

Do tell us how you get on - and do please let us know what region you live in. There may be a real-life support group near you.

Eileen

Angiebabie

What a shame that after a good start at 20mg and feeling "amazing", you were then advised to reduce to 15mg, whereas a smaller drop to 17.5mg would in all probability have proved successful.

At least your rheumy has wisely increased you back to 20mg which should again get control of the inflammation. However, if it was me I would not repeat that planned reduction again to 15 but just to 17.5 and only when you have been feeling "amazing" again for a few weeks!

Don't beat yourself up about not making the first reduction successfully - it happens to many of us. Better luck next time.

Well mrs O I guess the very first reduction is always a bit blind 17.5 could have gone either way and then we would think if only it had been 1mg...my instinct is that things needed to settle for a bit longer before any reduction but until you try ... I find his approach encouraging and have some confidence that I am being listened to for myself and my needs so long may that prevail. Did i read somewhere that the suggested protocul follows that path?

Eileen I live in east sussex

The biggest learning curve for me is pacing myself and I am consciously trying to rest but life has a habit of getting in the way! My friends are great and my lads are stepping up so I do less but it is very much a balancing act. The antiinflammatory diet was stage one and so far is working well all that goodness! I saw a lovely homeopath who is combining this with meditation to help with sleeping and stress but that is ongoing. I was already seeing a cranial osteopath who is gradually what i call untwisting me from the months prior to dx dexa scan tomorrow. Who knew being ill was so time consuming?

Thanks ladies for your advice

Angiebabie

You live in East Sussex, there is a support group in West Sussex, the nearest one to you.

If you scroll back you will see on this thread a posting by Nefret, she runs the West Sussex Group.

If you go to the sticky on the pmr thread you will see a website address for pmr-gca-northeast.org.uk and on that site under Support Groups are the details of how to make contact.

Hello y'all....been a bit since I updated here. See the new additions to the group, glad you also found this site.

I found the discussion about trauma or surgery bringing on PMR interesting. As it happens I had my tonsils out in June 2011, had just gotten back on my feet when the PMR symptoms hit me in August of 2011. Prior to that, I had never had any body pain issues ever. I am a certified fitness instructor, taught classes for a few years, worked out 3 times a week right up to my surgery and had begun back when this came on and the shoulder pain became too excruciating.

It was also interesting to hear of someone else who's markers were not high either. I was lucky that several reports and studies had been out and the original doctor I saw had read up on them. Some go by numbers only, and I think my Rheumatologist was one.

I had gone to see my Rheumatologist a few weeks ago who came up with the idea I had fibromyalgia, not PMR after having her boss poke me a few times. She was only interested in getting me off of prednisone, not in my comfort or quality of life, she made that clear. She then put my prednisone back to 15 mg for a week, then I was supposed to take 10 for a week, then 5 and stay there. I was also supposed to take Cymbalta 30mg. to assist. To prove a point while I was awaiting an appt. with my primary doctor, I first took the prednisone, which of course made everything all better. I attempted to take 12.5 every other day to no avail. I had to go back to 15. I then began the Cymbalta which made me extremely nauseaus (I already had no appetite) and put my mind "in a box", making me very unhappy. I tried 12.5 again and it was ok. The pain was there but seemed dulled. I then went to 10 mg and was ok. Still I was extremely nauseaus. I still had pain in the background. Very uncomfortable mind feeling though. By the time I got to the primary, I had lost a lot of weight (a week and half went by). I told her what had happened with the attempts of going from 2.5 to 2.0 and how the prednisone taking the prednisone takes all the pain away and she said "of course it does, you have PMR". She then mapped out a plan where I stay on a dosage for a month at a time, then once I get to the 2.5 mg point, I will take 2.0 mg once a month, then twice a month. If that is unsuccessful she will try having me take 1 mg twice a day. She states the fact that I am so sensitive to the change in dosage is yet another pointer to the diagnosis. Course she also is weaning me off the Cymbalta that I clearly am not tolerating well. I lose my appetite whenever I have a relapse, and this time it hasn't cleared - so the added nausea is not good. The primary said that she needs to monitory kidney, liver and bones, and has it set to do that on a regular basis. I told her I could just hug her!

Its exhausting having to fight for yourself at every turn! And having to find and start up again with different doctors. I am newer to Florida, this is a newer to me primary. I've been through 2 that weren't good at all for other issues. Glad I finally can rest that I have one that seems to support me all around. I wish the same for everyone.

Becky

Well done you for finding a doctor with knowledge. It strikes me that it really shouldnt be this hard for any of us to get proper treatment - particulary when you feel ill. There is a little voice in my head screaming "read the b...y internet sites you have a duty to be well informed"!

I do know that feeling of relief when the pmr responded to the pred I was so happy i felt like crying

Hope it is feeling warmer in Florida than the UK

Angiebabe - I see MrsK has posted - and it's been captured for approval! I imagine she has told you where there is a support group near you and given you a website address. Which is almost certainly the one I pointed you to in the pinned forum - if you scroll up this page to the top you will see a red line with Discussions forums - conditions - polymyalgia. Click on the polymyalgia bit and it will give you a full list of headings. Look at the second one!

One group in the south east meets in Chertsy and is run by MrsO on here. Nefret organises the other I think (Not that I really know, I live in Italy and we are mostly all virtual friends ).

"There is a little voice in my head screaming "read the b...y internet sites you have a duty to be well informed"" - absolutely! But too many of them are resting on the laurels they earned a long time ago relatively speaking. Some embrace the internet, far too many sneer at "Dr Google" and forget there are now many empowered patients who also went to Uni and are perfectly capable of reading and understanding the real medical articles which are often to them as well. And we require sensible answers - not "I'm the doctor dear, you don't need to worry your little head about this..." Sometimes I wonder if the reason men seem often to do better becauase they are not patronised in the same way as women with muscle pain tend to be "It's all in your head", "It's your age". Grrrrr!

Becky - hang onto that PCP! If you have a sensible one who recognises the difference between fibro and PMR and they are happy to provide the pred and keep an eye on you you're winning!

Eileen

Oh - forgot to say Becky - in case you didn't know, Cymbalta is a drug used for fibromyalgia specifically in this context, it is also an antidepressant but does have an effect on fibro pain. It won't have any effect on reducing a pred dose in any way. Except if the pain is fibro which it appears NOT to be since the pain goes with pred.

I don't know - it's hardly rocket science! There are loads of things where the symptoms overlap and that is difficult - but of someone reacts as well as you did to pred it is rather more clear cut.

I too have had flares after reducing by half a mg - at that point I think you have to accept that you have reached your maintenance dose and it's will be slow from here on in. On 2.5mg after 15 months sounds excellent to me - I'm on 9mg after 3 years!

Eileen

Hello all.

Its been a year since I've posted an update, and am at a trying moment right now. My primary doctor has taken over my care and she is very lenient as far as how and when the prednisone level is reduced. We agreed to try to go from the current 5 mg I had been taking since the last relapse I had almost 10 months ago. (I was never able to go down to 2.5 mg again after the 2.0 mg forced attempt).

So I started one week taking 4 mg one day, the next week two days and the third week 3 days or every other day. On the afternoon of the 3rd day (fateful time each reduction day) I remember being fine at 11:30 am and then having a hard time getting up off the couch by 1 pm. This time the severity of the pain was located first in the hips, as if I pulled my sciatic nerve. Not thinking I tried one of those Icy Hot patches (for some reason it didn't dawn on me right off it was a relapse coming on) and a vicodin I had leftover from a dental visit. Of course these things did no good. By that evening it was obvious that it was a relapse as my shoulders, midback and many other usual parts were uncomfortable as well. By morning I could hardly get out of bed then off the toilet.

I ended up getting a shot at the Care Clinic and the doctor there has me taking 15mg for 2 days, then 10mg for 2, then back to 5. Problem is, the shot helped but did not clear, now after 2 days of 15 not all discomfort is gone. My hips and back are still pretty uncomfortable. I called my doctor and she is squeezing me in tomorrow.

My previous attacks always came on with the shoulder being the first to "go bad" with the range of motion being affected, I also never had the stiffness in the morning previously. So now it seems I've got some of the "text book" symptoms added.

Another symptom that keeps coming up for me is bothersome lymph nodes, neck and under mostly my left arm. I have had them checked, scanned and came back benign but they seem to get very sore when the PMR symptoms are active. I also get fatigued and lose my appetite. Fortunately I had managed to get some weight back over the last couple months because after the last relapse I lost my appetite for a long time. Now here it is gone again.

I'm thinking it's going to be awhile before I try this reduction plan again. I read through some of the thread posts here tonight and see some people have had PMR and taken prednisone for 5 years or so....I was getting discouraged that it has been since August 2011 for me. But, it seems my body doesn't want to give up that prednisone....and the way I felt the other day when I had to have someone drive me to the Care Clinic because I couldn't walk, or even lay or sit without pain, seeming pain going up my hips or back to my skull even giving me a headache at the base of my spine...I'll take the prednisone and risk the effects I guess.

Hope everyone has a great holiday season and is feeling joyful. It is set to be 80 degrees and sunny all week here.

Best in health,

Becky

Hi I am new. I was looking for others with experiences like mine hoping I could pick up some help tips, info to share with my family doctor who really works with me with my illness. My experience is so much like BeckyL's I had to try seeing if I might learn some things. I have never had a spontaneous remission and it has been almost 9 years. I was in 3 serious car accidents and my doctor believes the trauma from these or perhaps a bout of Mononucleosis in 1983 may have been my trigger. When he checked my sed rates, the fact that I have persistent anemia, have had intractable migraine since puberty- all of these things together gave him my Dx of PMR/Fibromyalgia. He put me on 10 mg of Prednisone and I was a new woman. Since the original Dx I have had shingles once and have developed Lichen Sclerosis. I use Percocet and Flexeril for pain and stiffness and only usually at night and I hate taking these as I don't like chemicals but gave into them out of desperation. I tried Lyrica,Neurontin...quite a few drugs and have preferred just the Percocet- one or 2 at night and occasionally the Flexeril when really miserable, more than the daily pain. So many activities have been curtailed and I am 58-just- In January, (the 31rst). I care for my 2 grandchildren (ages 7 and 3) very often, since birth and it usually requires a couple days to recover after seeing them but I wouldn't refuse for the world. I have found heat (heating pad, hot baths, showers)my best friend- often more effective than drugs for relief. I also find light massage helpful- too deep and I am in agony. I still try to be active- walking, occasional bike riding, dancing, occasional lifting very light weights ( I find it near inpossible to rebuild any muscle mass- but the endorphins from exercise help me feel better). I was in school to be a Medical Assistant/Phlebotomist and though I completed and had a license to work I never got a job which is a mixed blessing because physically I doubt I could handle it.

Does anyone have pruritis(full body itching, sometimes intense, especially at night- wonder if its a side effect -drug related?

I have needle like pains frequently all over and warm tender spots throughout which I understand is inflammation.

I got shingles about 6 months ago and had some recurring nerve pain afterward.

I have been experimenting with some natural therapies like Pain Rx by High Tech Pharmaceuticals and Zyflamend with little effect.

I take Tumeric, fish oil etc to help with inflammation. Right now I am down with flu and it's been pretty ugly- been sick for 18 days now with a side of pink eye,tonsillitis as secondary infections.

I welcome advice and any further ideas for Tx. I am glad for this forum to read there are others who are successfully battling the ugliness of disease with me- helps with the loneliness of looking ok but suffering underneath and in an odd way it gives me hope.