Update on recent flare and house move

Many thanks for your quick reply Christina. I was in so much pain when the flare took hold, such that I couldn't even dress properly and really affected my quality of life. It is not so bad now, although I still have a slight problem lifting my right shoulder. GP has referred me to physio but 1st appt not until 24th Mch. In the meantime I have joined a local gym which offers pilates classes and has a pool with spa area (the jacuzzi is bliss!). I am back down to the beginners class but that's fine as I don't wish to overdo things. A session - be it gentle swim or pilates - knocks me out for the rest of the day but am beginning to sleep better for it!

Kay

Kay, I got down to 9mgs last October and then I attempted to reduce to 8mgs and all hell let loose. A flare up! After 2 weeks I upped my dose back up to 9 mgs and all seemed ok. I saw the rheumatologist and after reading the forums go slow and almost stop regime asked my rheumatologist if I could reduce by a half of 1 instead of 1mgs. He agreed so I went home and the following day attempted my new reduction 9mgs one day followed by 8 mgs the next and so on and so forth. But I was very very silly. I had only been on the upped dose of 9 mgs for 2 weeks before I attempted the new reduction and guess what I only experienced flare number 2. After about a week I simply upped my dose to 10 mgs so that the prednisone could really take charge. I stayed on that dose for 6 weeks and then I reduced my dose to 9.5. I've been on that dose for  3 weeks now and will stay on it for a further week then reduce to 9. I'm going to reduce by .5 all the time and if I can get away with it reduce by the current dose one day followed by the new .5 dose the next day. Now that really is slow! I'll stay on each new dose for at least 4-6 weeks. I definately do not want another flare.

i went and played tennis on Friday for the first time since PMR symptoms, (sep2013).i could barely  run and I had no power and I couldn't serve but I just loved it. I suffered for the following 2 days but I took things very easy and I'm sort of feeling back to my normal PMR self! I also am doing plenty of walking and exercise at home and as you say I do feel very old doing all these exercises on half power (I'm only 53) but I realise this whole recovery process will not happen over night and any little exercise is better than no exercise. All the best, christina 

Hi Kay i am new to this group and ondered what you did to help yourPMR when you moved as we are moving in about 7 weeks time o a bungalow.The last time i moved i nearly split up with my husband because i did too much and got really niggly and moaning, followed by a big flare up straight after. i tried to pace myself but things have to be done as and when on moving day.so any tips will be useful. i am actually diagnosed with fibromyalgia but prednisolone takes the pain away, i am  having blood tests tommorow to check my imflamation levels perhaps i have PMR it seems to be very similar.

Having done a couple of moves with PMR the best advice I can offer is get the removals firm to do as much as possible and someone else to do the rest. Make sure your bed is erected and ready to sleep in and that you have a basket with tea pot, kettle, tea bags sugar and milk (or whatever your poison is) and mugs handy in the car so it doesn't get lost. And a box with plates, cutlery and other basics in the boot. If possible, book a couple of nights at a B&B/hotel/motel for the first couple of nights. And don't panic about unpacking everything asap - if it takes a few weeks, so be it. It won't rot in the meantime. Label every box so you can see where things are. Breakfast and lunch are relatively easy - get ready meals or eat out for dinner.

It's all cheaper than a divorce.

Liz, I understand patients can have PMR and fibromyalgia at the same time. You mentioned blood tests and inflamation which sounds very PMR ish. Fibromyalgia does not involve inflamation and cannot be diagnosed by inflamation levels, and therefore does not respond to prednisone. So any response to your pain with prednisolone will be PMR pain. Please correct me anyone if I'm wrong. All the best with your move. Christina 

Thanks Christina - I knew there was something else I meant to say!

Fibromyalgia doesn't respond to pred, PMR does. And Christina is absolutely right, if you are really unlucky you can have both. One at a time is bad enough - having both is just greedy!!!!

Hi I am on 19 mg was on 40mg have been coming down 1mg every 2 weeks which has been fine butbi have been getting symptoms back over the last 10 days due to go down again by 1 mg on sun bur don't think I should go down until things settle also is it safe to take co-codymol while taking pres

Mo

Michele, I know you addressed your comment to Eileen and she will reply soon. But I just wanted to pop in a comment that I hope Eileen will agree with. You are reducing far to fast and by too great a dose drop. The very first dose we take is probably one of the most important doses we will ever take. Most of us will have had PMR for months undiagnosed and the inflamation that causes the pain and stiffness we experience  will have been able to burn away very happily unchecked. Therefore that very first dose has a lot of work to do. It has to not only bring all the existing inflamation under control but it has to also keep it under control. That is why it is important to stay on that high dose for at least 4-6 weeks and following that it is only prudent yo reduce if all the PMR pain and stiffness has cleared because that's telling you that the PMR inflamation has been brought under control and is being kept under control.

the fact that you are experiencing a return of PMR symptoms tells me that not all the inflamation is yet under control nor is it being kept under control. So instead of thinking about reducing a dose perhaps you should be thinking about upping the dose. Then when all the PMR symptoms are gone reduce further.

also you really want to be staying on each dose for at least 4-6 weeks so that the dose can really do its work. Currently you are reducing so quickly that it will now be hard to tell which dose was the correct dose for that given level of inflamation.

i say up your dose and stay on it for a good 4-6 weeks, then only reduce if all the PMR symptoms are clear. Then reduce by a small reduction and stay on each reduction for 4-6 weeks. 

Cocodymol won't really help with the pain as it is not an anti inflammatory and also if you have each dose correct you should not really need additional relief from pain unless of course we are talking about relief from pain derived from another pain source.

regards, christina 

Are you on pred for GCA, if so for how long? Wht symptoms are returning?

A 40mg dose is the starting dose for GCA rather than PMR and if your doctor thought it is GCA you need to stick at higher doses (above 20mg) for 6 months at least.

If he thought you have PMR why did he start you at 40mg? That is much higher than what is recommended. PMR is alone in responding so well to a lower dose - 15-20mg maximum. Other things will improve if you use high dose pred but will return as you lower the dose to the realms of PMR dosing.

It is safe to take cocodamol for a few days  - but that isn't the answer. Apart from the fact it isn't anti-inflammatory it isn't going to do much for the real causes of PMR/GCA. But without knowing a lot more about dose/times/original diagnosis none of us can make any real suggestions.

Hi Eileen no I do not have GCA but my Dr did not know much about the condition and played safe which has put me in a difficult position with a high dose to try and come down from I have seen a rheumi and I was on 22 mg when I saw him he told me to go to 20mg straight away and then after a month go to 17.5 and reduce 2.5 every month untill 10 mg then 1mg a month and would see me in 6 months I did this but had symptoms back so went back up to 21mg and have been coming down from there I was ok on 23mg. What would you suggest going back up to thanks for your help

I don't think I would suggest going back up - where did you develop symptoms, was that at 23mg? I suspect a lot of your problem now could be steroid withdrawal pain - because your doctor started you at such a high dose your body is experiencing much more discomfort on reducing than many of us do. 

IF it is steroid withdrawal pain then it should improve after a couple of weeks - but it sounds as if your rheumy hasn't left you any room to maneouvre. But I do wonder if he thinks it isn't PMR - because if it is PMR then the symptoms should be OK at 23mg and they aren't. In your place I would call the rheumy's secretary and ask if the appointment could be brought forward, explaining your pain problem, so you can discuss things with him.

A few ladies have had similar problems because the diagnosis of PMR wasn't the right one - but before they can consider anything else the rheumy has to get the patient off pred, or at least to a much lower dose. And that, I'm afraid, often mean a few months of a lot of pain and discomfort. Does co-codamol help the pain you have? How much pain do you have? What sort of pain and where?

I do wish doctors who aren't sure would google polymyalgia rheumatica to find the best treatment. If he'd had you on 20mg and it didn't work the rheumy (and you) might have had fewer problems now.

Hi Eileen I was fine on 23 have had pain on 19 its flue like symptoms and tiredness and shoulders ache its 2weeks on sun that I have been on 19 also all of my bloods and x rays have come back normal with the gp and the rheumi I have rang my gp to bring my rheuml appt forward and will try his sec too

There are so many things it could be but you can't look while you are on pred. I've just been reading an article on Arthritis Research UK by the group in the UK I would trust most to look after me with PMR and they say there has to be a question about the diagnosis in anyone who needs more than 20mg for comfort because other things will respond initially to higher doses but then the effect fades.

I think you really need to discuss it properly with an expert - and I do hope he will explain what he's thinking to you. The pain and disability is very unpleasant - but if you feel your doctor has a plan at the end of it then it is much easier to bear for a few months.

Good luck - and do come and tell us what happens.

Thankyou so much I think I am in for a long journey and its been made worse by a very high dose to start I am going to stay on 19and see how I go and see if I can bring my appt forward

Hi Liz

I am afraid that I can't offer any words of wisdom regarding moving house. Although I enlisted the help of as many available friends to help me pack as possible! It was my first house move techinically, as the house in question was the old family home. This has caused a problem with one of my brothers who no longer talks to me. I have been told that it could be a form of jealousy, which fits, as he is the youngest and most spoilt of the family. However, my stress overload was primariliy caused by an inept solicitor. I won't elaborate as I am currently going through a dispute with them, but good friends are invaluable to turn to in times of crisis or just even if you need a little support/advice. Other than that I still suffered big time. So I am the last person to ask for advice. Lol Just try not to control things too much. You can't possibly succeed so accept it. Best wishes with your move. Kay

My (new) gp suggested I take paractemol every 4 hours to keep pain in check whislt ereducing, desipte me telling him that neither it nor ibubrophen had much effect. I suggested he google PMR and/or go to patient.info to find out more on treating PMR. However, I think it went in one ear and out the other.Lol!

Hi Kay, you know this really will not do. As a Dr they should know that the only drug that works for PMR is prednisolone. Paracetamol will do nothing for PMR pain and if you feel that when taking it some pain is reduced it cannot be pmr pain that is being reduced. As a Dr they should also know that ibuprofen and prednisolone do not go well together and it is recommended that the drugs are never taken together. And that doesn't mean prednisolone at am and ibuprofen at noon, what I mean is if you are taking prednisolone you should not take ibuprofen at all. Also although Ibuprofen is an anti inflammatory drug but it simply is not strong enough to deal with the PMR symptoms. Your Dr is ignorant and an ignorant Dr has no respect for their patients because in my opinion if a Dr doesn't know something about an illness, they should look it up and learn abit about it. I'm not saying become a specialist in it but how can they give their patients an acceptable level of duty of care if they are treating patients without knowledge. Kay, keep a watch out for your recovery plan because your Dr isn't. Also is it you who has never had a blood test? Before your next reduction ask for one. Also good on you, do not reduce further until all pain has gone from this reduction. Good luck, christina 

A lady on another forum (though she does occasionally post on here) was told by her GP to use paracetamol regularly at up to the maximum dose to deal with the osteoarthritis pain that resurfaced as the pred went down - the pred controlled it quite well at 4mg but he wanted her even lower. A couple of months later he did blood tests - and panic stations: her liver values were up and he sent her off for an emergency liver scan. Which was fine. It was the paracetamol. I wonder if he will be in such a hurry to insist it is perfectly safe again.

Hi Eileen I have managed to get an appointment on Monday at the hospital with my rheumatologist so will ask lots of questions I have written everything down and have a diary of symptoms and doses I have just come down with a sctatchy throat and a cough and also my tounge feels like I have burnt it like when you drink a hot drink .maybe I was coming down with a cold thats why I had the flu like symptoms.the burnt tounge feeling I have had for a week so will mention that too thanks for all your support

Hi Michele, yes, that is a good idea to take along your diary and armed with lots of questions. If you have a blood test I will warn you that your SED level may come back abit on the high side as that indicates inflamation, any inflamation and because you seem to have a cold/cough that will influence the results. One thing o always remember - never reduce if you are feeling even the slightest bit unwell. The prednisolone has a very fine balancing act to perform and an additional thing to cope with ie, a cold, rash etc tips the balance over the edge. So therefore wait for all niggles of additional illnesses to clear up before ever reducing further. Good luck, regards christina 

Hi Christina yes I am staying on 19mg the flu symptoms seem better now that my cough has broken and is not so dry I think it has been in my system and is now working its way out my rheumi has put on my notes suspected pmr so I am going to speak to him in depth about it on Mon problem is I have to get down on the pred for him to investigate further and as my GP started me on 40mg she has made it even harder as reading this forum I can see that really I should have only really started on 20mg max as pmr reacts well on 20mg but hey ho I will stick to my guns on slow reducing as I am sensetive and will only get withdrawral symtoms which can be just as bad thanks for your help

Yes, the so called experts make the mistakes and the patients who are in enough pain, turmoil and anxiousness bare the brunt. There May be a situation whereby the rheumatologist will want you to taper to zero very very quickly in order to achieve a more correct diagnosis. If you do agree to this just be sure that there are appointments already made and that this process of diagnostic tapering is dealt with in haste and without delay. The last thing you want to do is agree to this request and then wait months for another appointment and in the meantime you are left suffering in considerable pain. You are also quite right in relation to colds etc. I am the same as you, suffer like mad when the cold or cough is getting to grips then when it explodes I feel considerably better, yet because I'm now sneezing away and blowing my nose everyone thinks that I must be feeling really bad when infact it was the previous week when I actually felt bad! All the best, christina 

hi christina you say that prednisolone and ibuprofen should not be taken together, im on both, what happens if you do take them so i can see the dr and query it.Also i have had a blood test this week and i asked what they were and they said it was a crp test  which i think will not show up to be PMR, any ideas

Hi Liz, please remember I am not medically qualified, but I definately know both ibuprofen and preds should not be taken together. If you actually read the info provided with ibuprofen it actually states that the drug should not even be taken for longer than 4 days! Ibuprofen is terrible on our livers and can cause false liver test results as a result.

please look up on line ibuprofen and it will clearly say that it should not be taken with preds. Likewise when you look up preds online the info will tell you that you should not take ibuprofen alongside preds. You should not even be using ibuprofen gel, because that is absorbed into the body.

you say that you take both, why? If you are taking a large enough dose of prednisolone to cover the current inflamation then you should not need additional anti inflammatory drugs. And if you have additional medical conditions that require pain control, if they are also conditions that cause pain because of inflamation, then again the prednisolone should also be keeping that in check, hence, it's only when we begin to taper that sometimes other conditions are revealed because upon reduction the dose of pred is unable to control inflamation caused by a condition that requires a higher dose of preds. Also your Dr should know that both preds and ibuprofen should not be taken together. 

I am afraid that I am no expert when it comes to blood tests but I think a CRP test is performed when I have a test. But also remember our blood tests should always be good whilst we are on preds. Because the preds control the inflamation so effectively our test should reveal no inflamation and so should be normal. Also PMR does not appear in a blood test, it is only inflamation that shows up in a test and that inflamation could be any inflamation. It is the sudden improvement of PMR symptoms when we take our first couple of pred medication that indicates to a Dr that the inflamation that appeared in the test was due to PMR. Any experts out there please correct me if any of this is wrong. All the best Liz, regards christina 

hi chrsitina i have been on both pred and ibuprofen since december when i saw a consultant about my osteo arthritis in my knees, i suffered a massive reaction when i had a cortisone injection in nov 14. he said the reaction was due to my fibromyalgia the pain was considerable and i could not put my foot to the ground. he had no other ideas to help the pain in my knees so referred me to my gp to try steroids.I was put on 15mg a day reduced to 10mg for 4 weeks and now 2 weeks into 4 weeks at 5mg, they originally worked on my knees and other pain i had due to fibro and the pain is now almost unbearable, hence i am here on my laptop at 4/5 in the morning. i had blood tests on tues and the results were back by wednesday which seemed very qiuick.  i have to see the gp in a routine appt but the 1st appt is over 2 weeks away so i dont know what they have shown i know 1 was for crp levels.  I dont know if to increase the pred myself to get some releif or try and wait the 2 weeks, which feels so long to suffer, plus i have the added problem of taking the 2 together. its a nightmare isnt it. do you think writing to my gp who is very nice and very thorough but i dont want to make waves as he is my gp for only another 6 weeks or so because then i am moving and will have to register at the local surgery and probably will have to start all over again depending on the individuals beliefs, things could get better or worse if that is possible. sorry to go on many thanks for all your advice.

Hi Liz, oh you are in a pickle. Remember I have no medical training. But are you saying that you do not have PMR/GCA. And you are using prednisolone for your osteoarthritis? It may be that preds are used for osteoarthritis, I'm simply ignorant to such things but I do know that if you also have fibromyalgia, as some PMR patients do, preds will do nothing for fibromyalgia pain and neither will ibuprofen and it could be this pain that U.S. currently causing you so much trouble because as I say the drugs you are currently taking are of no help for this condition.

the preds tapering regime that you are under is also a very quick one if you are also now on 5mgs. I am wondering if your GP put you on this course as a one off course, like a friend of mine has when her RA flares up. I just don't know. But the original good results you experienced could have been due to the preds working well to contain any inflamation caused by by your osteoarthritis and now you have reduced, the inflamation simply has not enough preds to contain the inflamation any more, maybe that's a suggestion. Again I simply don't know. Instead of writing to your Dr, could you not book an emergency appointment thereby bringing forward your appointment. No patient should be left in such pain and in my opinion extreme pain is justifiable as an emergency appointment, and you could ask him if it's ok to increase your dose of preds. Also, do you know what his long term treatment plan was for you. I ask because he has prescribed preds, you are now down to 5mgs, then what? If he was going to take you off them altogether soon, what was he going to offer as medication in their place?

as for changing surgeries, prior to my diagnosis I was at a rubbish surgery and I won't go into how I was treated but quite clearly my GP had never heard of PMR because she didn't recognise a single sympton. When I was diagnosed by a rheumatologist I immediately changed surgeries as there was no way I was going to stay at the old one. The surgery I'm at is fantastic and every Dr and surgery nurse knows all about my condition in depth. so hopefully you will also strike it lucky when you move. It's 8.20am, I'd ring up the surgery and get an emergency appointment for today. Regards, christina 

CRP is one of the two commonly used indicators of inflammation. They are both very non-specific, many things will make them rise. One in five patients with PMR or GCA never have raised levels of these two tests so thay can't be taken as gospel - if the symptoms are there then clinical judgement must be used. But having normal levels does NOT rule out PMR - whatever the doctor tries to tell you.

Both pred and all NSAIDs (non-steroidal antiinflammatory drugs of which ibuprofen is one) can irritate the stomach and cause bleeding. Used together the risk is increased. One lady ended up on hospital with a gastric bleed after 3 doses of ibuprofen - without pred at that point! 

Christina - ibuprofen doesn't go for the liver, that's paracetamol, but ibuprofen isn't very good for the kidneys.

 

That is not the way to use pred in PMR - it is a longterm course of pred that is needed over at least a couple of years. Did you have a good response of the ?PMR pain to the pred at 15mg? If so, a more conventional and correct dose scheme is 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before trying a taper any further - this is recommended in 2 reviews published in the last couple of years from some of the top PMR experts in the UK. 

But in this time frame to be at 5mg having reduced in 5mg steps is far too low, too fast. That is how pred is used in other illnesses where it combats the inflammation abd then you stop taking it. The inflammation in PMR is ongoing in response to an underlying autoimmune issue - as long as that is happening you need some pred, enough to manage the symptoms acceptably. At this stage yoou should be on at least 10mg, possibly still 12.5mg. Then you wouldn't need the ibuprofen - not that that helps most of us. Pred acts as the pain-killer in PMR.

Hi Eileen saw a rhemi today different one actually a consultant she was lovely and with all my symptoms and history we went through it all she has ruled out pmr and was disappointed in my GP for starting me on high dose of pred she Said 15 mg would have been ample and enough to keep pmr at bay and like you said I should not be getting symptoms at 20mg she seems to think it is Ankylosing spondylitis and has arranged for mri scan ,cat scan blood test for the HLA B27 gene and a glucose blood test so she said now I hato come off pred but the symptoms will be withdrawal not pmr and should ease after about 2weeks and have to stay on my new reducing dose 4to6weeks and so on so I really feel I have got somewhere today and I will stick with it and see what my test come back with thanks again don't k ow whai would have done without this site

Michele, I'm am happy that you at last appear to have a resolution to your pain. I've been online and looked up AS. Your consultant really appears to be being very thorough what with all the tests she has ordered. I wish you all the best. Regards christina 

 

That sounds like a rheumy to hang on to! Hope she tells the GP not to start patients on massive doses of pred again. Even if  you have to go through a few weeks of pain and discomfort it will be worth it to have a proper answer. Look after yourself in the meantime - I'm not sure, but ordinary painkillers may help with withdrawal pain. Another lady in a similar pickle (except her first rheumy was a prat "It isn't PMR, stop pred, and go away because I don't deal with pain...") has now started to feel the benefit of the stopping pred and trying another drug. It has been a hard few months but it is now paying off. Of course, had she rested instead of running around behind her family ...  

Hi EileenH thank you for your help, i dont think i can wait until the end of next week to see the dr, the results are back and i am in an awful lot of pain, so might ring and see if i can talk to the dr on the phone.my problem is that my normalGP retired in december and i have found another good one in  the practice and i am moving in about 6 weeks so will have to find another practice anyway.Hopefully this dr will sort things out before i move.thanks for your good advice