PMR for 4 years now and still struggling

Thank you eileenh and tired lady too i will try the pred early instead of paracetamol -just need to know also if you have to take painkillers as well as pred or do you just struggle on when you get a really bad day.i seem to have recovered from the bad shoulder pain unless i do something my muscles cant cope with but  i 'cant walk too far before im in trouble with hips and legs but thn when i sit down im sitting on buttocks pain all th time.also can you tell me should we only try to reduce pred if free of pain -because  i haver never been free of pain but the rhuemy still  suggets i try to reduce . Iam 69 yrs old and was very active before this hit me  -so im taking it hard to accept and so is my family as i was always their for them helping and now i cant -i dont think they realise as i look ok  - as we all know you cant see pain.

It is the experience of most people that paracetamol does little for PMR pain. No - you DON'T struggle on when you have a really bad day, you rest! If you have buttock pain and leg pain on walking it could be myofascial pain syndrome that is making the piriformis muscle (across the lower back) go into spasm and pinch the sciatic nerve - a lot of people with PMR have problems with it. A good physio or sport massage therapist or Bowen therapy are excellent options for dealing with that. Doctors will hand out pain killers but that doesn't deal with the root cause of the problem.

If you have pain that is obviously PMR pain then it is a sign that the dose you are at is slightly too low. When reducing you are actually looking for the lowest dose that controls the symptoms - it isn't a relentless reduction to zero whatever doctors often seem to think. If the underlying autoimmune cause of PMR is still active - you need a low dose of pred. But what you describe may not be PMR, it does sound like something else that is better at higher pred doses but lower doses won't cover it. I know that private physio/massage/Bowen isn't cheap but those of us who have used it have found that once this problem is dealt with the pred reduction is far less of a problem.

I've no doubt the doctors are fussing that you have had it for 4 years and are still on pred - I've had PMR for 10 years, 5 of them on pred. I haven't fallen apart yet! Doctors here don't seem to worry about length of time - they just want it to work for you. There was a bit of concern from non-rheumatologists that I was on too high a dose a couple of years ago - but that was actually because the sort of pred I was on simply didn't work for me, I got bad side-effects with no benefit. A different brand made the difference. Now it is "don't rush things"!

I'm still struggling to come to terms with my diagnosis last Oct.  I am doing the reduction plan offered from this site but feel I'm about to hit another wall at 7.5mg.  My GP has me worried sick saying I am on too high a dose, and my consultant just doesn't seem to have enough info on symptoms of steroid reduction problems to help much.  I'm getting side effects from being on steroids so long , I get palpitations and my arms and legs feel shaky.  I left the hospital on Mon and couldnt stop crying all evening.  I need to hold down a full time job I can't see a light at the end of the tunnel, not sure if this depression is steroid related ! Sorry for the rant but its a very tough road to walk as I'm sure you know.

Eva Annie I really feel for you.  Personally I don't think your dosage is too high.  I am sure Eileen and Mrs O will have some good feedback for you.  I was diagnosed 21/2 years ago, managed to get down to 5 mg, but am now on the way up, presently on the same dose as you and will probably be increasing judging by how I feel.  I very often feel 'hard done by' as I can't live how I used to live.  However, I try to get back on a positive note and look at what I am able to do.  It must be difficult with you having a full time job though.  Regarding your shaky arms and legs, I can recognise that, in fact I am in that position right now.  I also get palpitations, especially if I get the slightest bit stressed, either mentally or physically.  My Gp is the opposite of yours, and her advice is to take whatever I need to be relatively pain free. And, rant as much as you like, we are all here to listen.  Best wishes.

Eva, if your GP had any real experience of PMR, he would certainly not be telling you that you were on too high a dose at 7.5mg.  This dose is roughly equivalent to what our bodies produce in natural steroid (cortisol) when well but which has been suppressed by the long term artificial steroid.  At around this dose, our adrenal glands will be trying to get up to speed again with their own natural production and whilst that is happening we can have a shortfall in our bodies and in times of stress there won't be sufficient cortisol to cope with any increasing inflammation and it can then be a slower road to recovery.

It's true that steroids can cause depression and your GP should be able to help you with treatment for this, but it could also be due to you being overtired and in need of some TLC.

Palpitations are also quite common, as is the shakiness you mention.  I often used to feel as though my whole body was trembling inside and I lost count of the amount of broken crockery as a result.

Never apologise for ranting - it's far better to get it off your chest and at least you know that we of all people understand.  Yes, it is a "tough road" but there is definitely an end to the tunnel - I know, it took me 6 1/2 years with both PMR and GCA and a very high steroid starting dose to protect my eyesight, but I exited that tunnel two years ago.  However, I didn't have to work and was able to rest as and when necessary.  You are not yet a year into your journey, and many people would envy you being on 7.5mg in that time - PMR will go into remission when it is ready and not when the GP wants it to. 

Those of us who have retired at the time PMR strikes, often wonder how on earth anyone can work with this condition.  We have come across many people still in employment who have had to take sick leave until they feel better and then often return to work on a part-time basis at first.  If you continue to work through this illness, it will, no doubt, take longer to get and keep the inflammation under control.

Do try and stay positive and remember although this is a very painful and frustrating illness, at least it is one from which you will recover unlike some other really nasty conditions out there.  

If you need to hold down a job then you will need more pred than if you were retired and able to rest.

You have not yet had PMR for a year. Being at 7.5mg in less than a year is exceptionally good - and your GP is talking through the top of his head. If you need pred to function, you need pred. The alternative is immobility - and that also brings side effects of obesity, osteoporosis and raised blood pressure! Some people take higher dose sof pred than that for life - if they need it there is no option. I have been on pred for over 5 years now, most of it at 10mg or higher, I haven't crumbled yet and am now on 3mg because my body is ready.

Find a GP who is going to talk some sense and support you instead of scaring you to death. 7.5mg is a physiological dose - about the same as your body would produce anyway. The drepression could pred-related - butyou say you haven't come to terms with the diagnosis so that could be contributing too. When you accept it it isn't giving in - but leaves a lot of energy to devote to coping with the PMR. However - I would suggest you get the palpitaions checked out to make sure there isn't another cause,

I have only recently been diagnosed with this condition, it was such a shock as I thought the doctor would just send me for some physio as I thought that initially my muscles hurt due to lifting very heavy objects, but then I got worse and began to feel quite ill, thinking that was due to being in contact with two little girls with chicken pox. After numerous blood tests I was put on 15mg of Pred but continued to feel very shakey, all over and very weak and also exhausted. I saw another doctor who then doubled my dose. More blood tests later it was found I had a serious liver infection. More blood taken and infection showed to be coming down.Just had a scan on my liver on Friday, looking ok!

Asked if I could reduce Pred, now taking 20mg. Still get the shakes in the muscles and a little weak but not so bad. At its worse I too thought it was hunger as it feels like very low blood sugar all the time. I get palpitations as well as you and also work, its a physical job so really have to push myself.

Waiting on results of scan and more blood tests taken last week. I also get emotional for no apparent reason.

Sorry to ask this but does anyone else have strong colour in their wee. My doctor says its normal but I know its not as I have tried drinking water all day and it still comes out a strong colour?

The  most likely cause of your dark urine is the liver problem, depending on what it is and how dark it is. On that basis your doctor mightbe right it is normal for that situation, but I don't think it is normal normal if you see what I mean!

As long as your stools don't become very pale in colour there probably isn't much to worry about since they are monitoring the liver problem. you say you have tried drinking water - I assume you mean rather than drinking tea and coffee? It really doesn't matter what as long as it is enough - a couple of litres maybe, 4 pints, 8 -10 large glasses/mugs a day.

The shakes should improve as the pred dose comes down.

I hope you also agree that "kicked bottom" needs a bit of extra TLC! ;-)  The same applies as I suggested to Jean - and I forgot to mention that Bowen therapy is also a gentle alternative if a bit slower. You may feel worse for a day or two after any of the therapies - the longer term resultis worth it though.

After a really grotty week, I was only discussing with my husband about seeing a physio.  We have an excellent one in the village, so, that's the next step!  Hopefully I will have a new lease of life, and a better bottom!!

Thank you  tiredlady -l am  really glad you mentioned  the 'kicked by horse' comment so do you too have pain in buttocks -no matter how many cushions i sit on and i have to take a cushion with me disguised in a carrier  bag when i go out in case i have to sit down.i sent a lengthy reply to eileenh -so could you tap into that so i dont have to bore you by repeating it all .

Tiredlady, it's important to remember that the usual manual techniques used by physios are contraindicated when suffering from PMR.  Only gente massage and heat treatment is advisable.  When in trouble at the very low doses I was lucky to come across a physio who understood the need for care in PMR and I had a few massage and heat treatments which I found hugely helpful.

Jean b, I also carried a cushion around with me everywhere!  With regard to taking paracetamol alongside steroids, I had found them useless prior to diagnosis so didn't consider it worth adding them as a painkiller during treatment.  Instead I preferred to slightly up my steroid dose to cope with any returning pain that lasted for more than a few days following a reduction.  If it was just the odd painful few days that occured because I knew I'd overdone things then I just rested up for the following few days.  Hope it helps taking the steroids earlier in the day.

Hi Eileen

You seem very well imformed on this condiiton so just wanted to ask if you or anyone else has got severe muscle weekness and a shakey feeling all day, a lot like having low blood sugar symptoms?

I am on Pred 20mg which has just been reduced from 30mg, I have only been recently disgnosed, but have also got a liver function problem and am waiting on a scan on Friday, the liver infection at last blood test showed the infection was decreasing, My doctor says its the liver that is causing the weakness, but I am not totally convinced as I wondered if it could be the steroids.

I too like tired lady feel totally exhausted at times and feel has though I have a temperature at times, come over very hot. I also feel constantly hungry.

A reply would be very much appreciated. April

Hi pebbles - I've had PMR for over 10 years now and have been on pred for over 5 years. I have a medical background and have read anything and everything available about PMR. I'm also involved in a research group as well as the support groups and forums - that's why I know a bit about PMR.

The total exhaustion is part of the PMR: it is an autoimmune disorder which makes your immune system attack your body by mistake because it doesn't recognise your body as "self". Fatigue is part of almost all autoimmune diseases.  So is the feeling of having a fever and the hot sweats - all perfectly "normal" in PMR. Try to rest as much as possible for the moment. It will help you get through this.

Is the "liver problem" a raised alkaline phosphatase level in your blood? If so that is also part of PMR, it is a very common finding but most doctors don't appear to know that. Once the pred starts to work on the inflammation the blood level starts to fall. Long long before PMR I had a strange viral illness where my liver enzymes were raised - and it was very similar to the PMR when that started, I'm sure they were related. 

Quite a few people find that the higher doses of pred make them feel shaky and weak. 30mg is quite high, 15-20mg is the usual starting dose but it used to be higher - new recommendations all the time. As it reduces you will feel better, you will also feel better as the entire inflammation in your whole body reduces. It may take some months so  you will have to be patient.

I hope you doctor doesn't try to continue to reduce in 10mg steps from now on. No reduction should be more than 10% of the current dose - and the smaller the step the better. Big reductions often cause something called "steroid withdrawal" where the pain resembles the pain of the original illness you were given the pred for. You can't tell if it is a flare - but reducing in small steps helps avoid that. 

Things will improve - but only if you play your part in management and don't overdo it. Now you have found us do keep in touch and if you have any questions - just ask!

Hi Eileen

Thank you so much for your reply, it is good to know that I have someone I can talk to about this awful illness, I have always been so active and still try to do too much, my part time job is physical and I still try to carry on as before but realise that there are consequences. I guess I should try and take better care of myself and slow down if I am to get the better of this.

Follow this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

and you will find a link to another forum at forumup - this is a forum that functions as a virtual support group for people who can't get to one locally and we chat and whinge and ask questions just like at a coffee morning! There is also a link to the northeast of England support site which has a lot of info which is reliable and medically approved. Including a lot of stories from people who have been where you are now.

You can't carry on as before - you have a chronic illness that must be managed. One day you will get back to where you were - but not just yet. Once it is under control you will have more options but it is a steep learning curve. 

Thank you Eileen, I will check them out.

I have PMR and have exactly the same shaky feeling. At first I thought it was because I was hungry.  I have no liver problems so I think its related to steroid reduction.  It's a relief to hear this is common to other PMR sufferes.

I am reductin g from 8mg to 7.5 but finding it tough, shaky obviously not confined to higher doses.