The million dollar question - how long does PMR last?

I have only been precribed ABs once for stings and, as Eileen says and so did the doctor, that was in case it was a dirty sting ( bee in boot ). Once we found Zirtek worked for me I just make sure I have some ni the fridge and treat myself. If the redness and swelling goes in a couple of days I assume I'm ok. Last time I bought some in Boots I was offered \"something new\". Can't remember the name but while Zirtek works I'll stick with it.

Interesting thought, hyperactive imune system. I've often jokingly said that mine must be on red alert; I've had nothing but the childhood illnesses and 'flu once until PMR and used to say I was the lucky one in the family as mother and both sisters suffer (ed ) with hay fever and I do not. That will teach me to boast!

Seem to remember reading somewhere that not getting any childhood illnesses is not necessarily good news. Can't remember what it was connected with. Would that perhaps indicate an overly well and early developed Immune system? Only know one such person well and until she became diabetic in her eighties was the original strong as a horse type.

I think the idea it is good to get childhood illnesses is that the immune system needs the practice! Most babies who are breast fed don't get things their mothers are immune to as long as they are being fed enough and the antibodies are being obtained through the milk. That is the biggest plus breast milk has over the bottle. Once that stops the child starts to get colds and things as their immune system gets the hang of what it is meant to do on its own. Naturally acquired immunity is supposedly no different from the immunity developed from jabs but it is a fair question as to whether giving 3 different types of disease at the same time in a jab can be equated to having the same 3 diseases at different times as you would naturally.

Francesca didn't get chickenpox at 3 when Natalie had it and they were in close contact when Nat was at her most infectious (24 hours before the the pock appears) but did get it a few years later when in contact with her cousin who was well past that stage. Difference? She was breast fed first time round. You also need a fairly stiff dose of most things to develop the antibodies so a very mild dose is also not necessarily good news.

I think I had everything except mumps and scarlet fever but have very little since.

BTW Betty - was the \"new\" stuff more expensive? I find Boots' pricing policy positively disgusting! Their \"own label\" acyclovir is almost as much as Zovirax :roll: so I go to a small independent chemist on principle :wink:

Greetings from a picture postcard winter!

Eileen

Meant to ask - re \"dirty\" and \"bee in boot\". Bee in car boot or footwear type boot? Was he suggesting you had dirty feet? :shock: :D

Eileen

Clean feet; filthy boot. Who knows about the bee?

My aunt has had PMR for 15 years and it comes and goes. I do not believe it acts the same in all patients.

Hi all,

I think the allergy to stings is relevant. I have always had very severe reactions to bites and stings , in the past I have had steroid injections to stop the swelling !! and this weekend I have had the most pain for 2 years !!! and yes I have 3 nasty bites on my legs !!, any one else noticed this ???

wow i go away for a weekend and all this happens will take me a while to take it in ,what cat do i fall in no idea maybe the fall flat on my face cat at the moment will absorb all this after a nice cuppa carolk

I was diagnosed with PMR at age 49. My doctor said I was the first in his clinic to ever be diagnosed under the age of 60.

I have been on prednisone for 2 years and 2 months. I have just tapered off this month and I am now of off prednisone. Its a happy day for me.

I have had some mild pain in my shoulders but it seems to go away if I take a Ibuprophen or some over the counter pain med.

I have a lot of sympothy for those who have had this type of pain that can be devestating in the mornings.

I hope they find a alternate drug other than predisone someday.

Greg

Greg

Well done and congratulations! I bet that's the best Christmas present! It's good to hear this sort of news and will especially reassure those who have recently been diagnosed that there is light at the end of the tunnel! Stay well.

Hi All

Firstly well done Greg, what an achievement.

I too, was looking forward to being clear of steroids - until I had some routine surgery in October. I was on 4mg, and remained ok for several weeks after surgery, However, I had problems with the wound, and am still attending hospital twice weekly for dressing changes. Since being on anti-biotics for 6 weeks, I have found my steroids less effective and am currently on 7mg and still in lots of pain which doesn't ease until late afternoon. In their wisdom, my GPs reduced my supply to force me down to 3mg, and I am currently waiting for blood test results (CRP, ESR). Can't see my GP till 9th January though, and really feel that I need to go up to 8 or 9mg to allow my hands to function.

Has anyone else had this reaction after surgery? Does anyone have any advice? I am really cross with my GPs, they seem to think I am a mathematical equation rather than a person with other things going on!

Hi Mugwump!

It used to be advised that patients on corticosteroids who required surgery should be given a higher dose of steroid to cover them for the stress of the procedure - and then some doctors decided that wasn't necessary, monitoring was all that was required. Far be it from me to criticise - but if you take that route, surely you have to monitor and be ready to do something when the recovery seems compromised?

I was ill in May and spent 3 weeks in hospital. I was switched from prednisolone to methyl prednisolone last November and, apart from some unpleasant side effects which I won't go into here, I was fine in terms of PMR until March when I was given a quinolone antibiotic. They can cause achilles tendon problems on their own, in combination with Medrol the risk is much higher. I drew the short straw and have been on crutches until very recently. However - the medrol didn't seem to be as effective after that - and after my 3 weeks in hospital I realised that it was being increasingly useless, I had to increase the dose to get anywhere (I had been given antibiotics during the stay in hospital). I was given another week's worth of a different antibiotic in early July and eventually I ended up on 20mg to get any real relief. Taking it in the morning meant no relief until early to mid afternoon, so I tried taking it at night. That worked but isn't advisable and my GP has put me onto a special form of pred which is designed to be taken at night and have its maximum effect first thing in the morning. I was immediately able to cut the pred dose to 15mg and have decreased the dose steadily to 9mg which is about what I had been on prior to the first antibiotic and have never been able to get below that.

I have no idea at all whether this is all coincidence or whether the antibiotics have also played a role. What I do know is that your GP is obviously not very knowledgeable about PMR - you can have a flare simply because of them making you reduce the pred dose and to combine that with the stress of surgery is rather short-sighted on their part. How long have you had PMR? What sort of reduction scheme were you on? Many experts recommend remaining on 5mg for six months or even more before continuing on the reduction to zero. Others recommend spending a very long period at a higher dose and say this reduces the rate of flares from 60% to 20%.

As for being made to wait until the 9th of January to see your doctor, that is a piece of nonsense and - holiday period or not - I would be standing in their surgery at the earliest possible opportunity demanding an appointment. If you can't move, that is an emergency if they have been daft enough to limit the medication that keeps you mobile. Yes, reduce the pred dose steadily, but the reduction should be based on your clinical status - the ESR and CRP are only guides and the clinical picture is the important criterion. It is not uncommon for them to be normal and the PMR symptoms to be present, even if the ESR and CRP were elevated originally. That isn't me saying it - it is experts in the rheumatology field in their publications.

Good luck!

Eileen

Hi Eileen

You're such a mine of information, thanks so much! The surgeons knew of my steroids before surgery, and no mention was made of needing to take an increased dose. if I had been warned of the probable side effects, I would have delayed this surgery as there was no need to have it done now.

I was on Clarythramycin, Clindamycin and tetracycline. (excuse the spelling if incorrect!)

I've had PMR since 2009, starting on 40mg of prednisilone. the first rheumy I saw denied it could be PMR at all since I wasn't 55 (I was over 53!). She took me off pred and gave me amytryptilline and ibuprofen which I struggled with for three weeks before begging my GP to go back to pred. Now I read on this forum that the break could have caused subsequent flares.

I will certainly ask about the night-time form of pred when I return to the GP - which looks like it will be earlier than planned because I am so so tired of feeling rough, exhausted and in pain.

Thanks again.

Mugwump

Ah well - that rheumy needs to go and read the latest guidelines where they have finally said it must be considered in over 50s. What on earth makes anyone thing that 18 months is significant - and actually the same thing applies for the ESR where some will say 38 is fine but 42 is above normal but I won't get into THAT here! She obviously decided it was fibromyalgia if she gave you amitryptilline. They do overlap in terms of some symptoms - but if the patient responds to pred it ISN'T fibro, pred doesn't touch that.

Unfortunately I doubt you will be given the night time form at the moment - it was developed for use in rheumatoid arthritis to help with the morning stiffness so there is a great logic in using it for PMR but it isn't yet approved for it. There is currently a trial being done with it in PMR so eventually this will be a battle to be fought. However - 1 tub of 30x5mg tablets costs about £25 8) and the 2mg and 1mg tablets are about the same - it is the cost of making them I presume, you take them at 10pm within 3 hours of having eaten and the coating is designed to disintegrate after 4 hours. It had been found that the optimum time to take your pred is at 2am so the blood level is at its highest at about 4am which is just before the cytokines that cause the inflammation are released in the body. There is no proof it is the same substances that cause the swelling in RA and PMR - but it works for me. I can have it because I don't live in the UK, my GP who was a rheumatologist in her previous life doesn't have to beg and prostate herself to choose which drug - YET! It will come. I was perfectly happy on ordinary prednisolone but it isn't available here, just the Medrol which is supposed to be better. Well - it grows a good beard and makes you even fatter :[

If not, some people take their pred in split doses, 2/3 in the morning and 1/3 at night and that seems to help the morning problems for them - it is worth trying. I doubt that that hitch with being taken off pred and then going back on it made much difference if you had managed to get below 5mg before the op. You have probably gone into a flare because of the stress - of the op and then the upset of not healing well and 6 weeks of antibiotics would make most people's bodies protest. I think a lot of docs - even rheumatologists - underestimate the sensitivity of our bodies when we have PMR. Given how awful you may feel just after a day when you did far too much, Christmas or a bereavement an insult like an op is a biggish event. And personally - a change in the weather leaves me hardly able to move in the afternoon after sitting! In the meantime - take it easy, lots of TLC. Have you tried using an electric blanket in the MORNING before getting out of bed? Some people find that helps. Then have a warm shower and do some gentle stretchesto get moving. It sounds cruel advice - but it does help!

Eileen

Hi Mugwump

I, too, had a major flare in my symptoms along with increasing ESR and CRP markers at around a similar level to you (3mgs for me) which coincided with quite major dental surgery necessitating antibiotics. To be fair, I had noticed slightly worsening symptoms at the 5mg dose but I believe the surgery further aggravated things.

Like you, I also started on 40mgs but I was also diagosed with GCA and I'm wondering why you were started on such a high dose for PMR. You obviously did well in getting down from 40 to as low as 4mgs and perhaps you might have fared better if the dose had been increased for a few days around the surgery. However, some medics seem to feel that at this low dose an increase isn't necessary, without giving thought to the fact that your adrenal glands were probably not back up to speed, having been suppressed by the high dose steroids, and not making sufficient adrenaline to cope with the extra stress of surgery on the body, not to mention all those antibiotics!

Following my flare at 3mgs, my rheumy increased me to 10mgs, tapering fairly quickly back down to 5mgs, and then kept me at that dose for almost 6 months before embarking on reductions again which I then did at a snail's pace and in half mg doses. Happily it worked and I'm now in what those of us over on the other forum call our "Club Zero" (you'll find a link to that forum when you enter this one).

Depressing as it may sound, you might need to go back up to a higher dose to get relief but the good news is that you will probably find it easier to get back down to the last dose that controlled the inflammation more quickly second time around.

Can you perhaps ask for referral to another rheumatologist? That is what I had to do following my first year of suffering and under a rheumatologist who failed to diagnose me in spite of attending my appointments by wheelchair and ambulance. Because of this lack of diagnosis, the uncontrolled inflammation of what we now know was PMR let GCA in the back door!

All the best.

I have found your email very useful EileenH, thank you.   I have been dealing with this condition since May 2014 (it is now nearly November).   Having been distracted by a physiotherapist's view that my global pain and stiffness was definitely NOT fibromyalgia, I went to see a consultant rheumatologist who said it most likely WAS and, after some discussion, I agreed to two large steriod injections in my shoulders.   

It was like magic - all the pain and stiffness disappeared overnight, which he said might happen and then it probably took about 6 to 8 weeks for the symptoms to gradually return - which he also said might happen.

I am not keen on going onto tablet steriods and noticed the comment about poor adrenal function.  My brother had Addisons Disease and died in his early 50s and I have hyperaldosteroidism which is a malfunction in the adrenal glands which pushed up my blood pressure. Seems like a clear genetic link to me. However, despite my mentioning it to GPs on a regular basis, this was not found out for many years - only eventually by a Professor at Ninewells Hospital in Dundee who was also a biochemist as well as a physician.  Once diagnosed and given spironolactone to rebalance the potassium/sodium balance in the adrenal glands, my blood pressure almost immediately reduced to normal after many years of medication which did nothing.   Too late for my poor heart though, as I had a heart attack six years ago.   

I have always looked after myself, kept a healthy weight, have a good diet and plenty of regular exercise so I am fortunate to be so well despite my heart being permanently damaged with scar tissue as GP missed the heart attack and told me to take Omeprazol for chest pain (women especially look out for this, we are often missed for heart problems).

  

But now I have this debilitating fibromyalgia rheumatica and wonder if this too could be linked to the adrenal gland problem and is this something rheumatologists can check for us and treat/rectify the cause rather than medicate the symptoms.

Junelizzie