Which proprietary drugs/creams do others use?

Oh yes I forgot to mention that the Consultant has put me on Amitriptylineas well. No relief.

Hello michael, I'm so sorry to hear of your current state. Wait for the more clinically qualified of the forum users to give their advice but simply as a fellow sufferer the course of treatment just doesn't sound right to me. 

Most gps and consultants prescribe prednisone as their first course of treatment for PMR. And the dose should be high enough to control the pain or to at the very least reduce the pain considerably. 15 mgs for 6 weeks, 12.5 for 6 weeks, 10 mgs for, well I was on that dose for 6 months. And on each of those doses the pain had almost gone completely. Yes I do hear of sufferers being given methotrexate but according to all the research papers that drug is not recommended unless there is also an issue with rheumatoid arthritis or the prednisone is not working for what ever reason. 

I know that ESR and CRP blood tests are not always 100% accurate but so far what have your tests revealed. 

How long have you had PMR for? Have you been back to your GP and told them that the course of treatment prescribed by the rheumatologist isn't making an impact. Have you looked up the PMR Bristol plan and gone into the surgery and asked why you are not being treated in line with suggested, recommended, treatment plans.

a couple of months ago one of the contributors of this site wrote on the forum that They had read in an article that patients that make the loudest noise receive the best treatment, so make your concerns known louder and challenge the treatment plan. 

Now to your wife and son, I'm most disappointed in reading what you have written. PMR is a condition that although not terminal is excruciatingly painful and therefore impacts on your everyday life. Before I was diagnosed my GP said that she simply had no idea what could be wrong with me and told me to just take more pain killers although I told her they had no impact. I went from keep fit, tennis playing, running, horse rider to a cripple overcome in unbelievable pain within 3 months and I honestly thought I was going to die. My husband supported Me throughout this time and still does now. PMR is a very emotional condition because its recovery does not fit into any text books and sometimes when we experience flare ups etc we do worry our selves needlessly so that is were our loved ones help is needest the most, so sorry for this, but I say shame on them, especially your son who as a professional should know better. To be ill and not have anyone yo share your fears with is very sad. Now you have found this site, keep using it, because you will always get support from all of us. Good luck michael. Regards, christina 

Christine what a briliant reply to Deantwerpen ... Evry thing you say is soooo true . Deantwerpen you need to go back to your GP and explain exactly how you feel ,wishing you a pain free new year x

Pain relief in PMR is entirely down to the correct use of pred to combat the inflammation which leads to the pain. PMR is not the disease, it is the name given to the symptoms which are due to an underlying autoimmune disorder which causes the body's immune system to not recognise body as "self" and attacks it as "foreign".

The drugs for PMR are pred, pred and pred. Some doctors believe using methotrexate, which is a rheumatoid arthritis drug, enables you to achieve pain control with a lower dose of pred by altering the way your body metabolises pred. There are only about 3 studies looking at this and one says it helps, one says it doesn't and one doesn't know. The most recent guidelines say that methotrexate should not generally be part of PMR therapy. Some people have used methotrexate alongside pred, a few achieved good results initially but then flared badly, one even developed GCA, and were back to high doses of pred again. Some of them believe it was due to being on too low a dose of pred.

The usualy starting dose for pred is 15 to 20mg pred per day, taken in one dose early in the morning to achieve the maximum antiinflammatory effect. That should achieve an improvement in symptoms overall of about 70% within a few days. If it doesn't then there have to be questions about whether it is PMR - only PMR responds like this to pred and for some doctors this provides a confirmation it is PMR.

Amitryptiline is a substance used for nerve pain and is commonly used in fibromyalgia - it does not have any effect in PMR. 

I would humbly suggest your rheumatologist doesn't have the foggiest idea what he is doing. He has told you you have PMR but isn't using best practice therapy: he is using a mix of medications that covers fibromyalgia, inflammatory arthritis, PMR and ggeneral pain. If it is PMR then 3 of the 4 are redundant because they don't work. Only an adequate dose of pred will achieve decent pain relief for you in PMR. First the inflammation must be brought under control using a higher dose of pred (15-20mg) over a period of at least 6 weeks and then the dose is reduced very slowly to find the lowest dose that controls the symptoms to take longer term until the underlying autoimmune disorder burns out and goes into remission. Taking a load of different drugs at lower doses won't achieve much at all. PMR needs a high enough dose of pred, other inflammatory arthritises take a while to respond the correct dose of the best medication for them.

If you follow this link

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

it will take you to a thread where the first post that contains other links to sites and forums where you will find much more information. The final link in that first post is to a paper written by rheumatologists from the Bristol rheumatology group in the UK. It is written for GPs to help them diagnose and manage PMR themselves without rheumatological specialist input - that is quite common in the UK unless there are problems or it is very atypical. You could try taking it to your GP and asking if he will discuss the problems with you. You may be able to read and understand it yourself.

Were you significantly better while taking the "8 steroids per day"? I assume by that you mean a dose of 40mg/day. If you weren't then you need to find a rheumatologist who will take what you have seriously and investigate properly because if you weren't reasonably pain-free on that dose after a week then it probably isn't PMR.

Flexiseq is for osteoarthritis - nothing to do with an autoimmune inflammatory disorder. 

And all I can say is your wife isn't being very sympathetic but if she ever develops an arthritis, especially PMR, she'll get what you are complaining about. Your son sounds like the usual medical field social worker - maybe you do have emotional issues (I'm not going to ask where they might be) but you have been to a doctor who says it is PMR. The first question is "Is it PMR?", then it needs treating properly, if it isn't then someone needs to put their thinking cap on. Even if an "emotional issue" is at the root of the PMR, and stress is a major factor in triggering PMR by the way, then adequate pred will help dramatically with the pain and stiffness.

There are other things that are very similar to PMR and they should have been tested for. Two blood tests are raised in 80% of patients and they indicate inflammation - other than that it is a diagnosis based on the symptoms and rulling out the other things.

Hi Michael - I can add very little to what Eileen and Christina have already said, and the links in her reply.  Looking at the Forum name you picked - are you based in Belgium?  The Antwerpen is a good clue?   Questions - how long since you were diagnosed as having PMR?  When and for how long were you on steroids?  Did they stop you suddenly or taper you off over a period?  Did they give you relief from muscular pain?

Sorry to hear of the lack of empathy from your family

its really hard to get it across to your loved ones, the amount of pain this causes. i am very fortunate that my husband is compassionate about my pain, aT the same time hes frustrated with doctors and physios passing me from one to another.  You do feel like youre moaning sometimes, but thats because the pain gets you down. I am at my worst in the morning, then by bedtime its back to square one. I havnt tried predisolone, as i am on medication for high blood pressure as well. the pain you feel continually sends blood pressure up, in my opinion. its a vicious circle.

For both Deantwerpen and pep:

The northeast of England support group have made a DVD called "You are not alone" which explains how PMR and pred affect us physically, mentally and emotionally. It includes contributions from doctors, patients, physios and others. It was made to bring home to families and friends what pMR means for us - and even doctors have been grateful for the info they have gained.

It is available for the members of the support group at a small charge. You will find a link to their website in the first post of this thread:

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

 

This is all very good advise and I am so sorry you are going through this.  It is har for other who do not have this to understand, maybe it would help to let them read some of these messages to see what many go through.  I have done that and it seems to help family understand.  EillenH is a good source and has trueloy helped me to under so much more then the Dr. has told me.  I wish you well and a Merry Christmas.

Not very nice of your Son, he probable doesn't know much about PMR its just awful the pain is a nightmare is that  8mg a day if so you need to go a lot higher I am back on 15mg  a day as mine has flared up again I have had it 14years now and go up and down  with the prednisoilone and Co-Codamol I am not on the  Methotrexate going to try it in the new year. Nobody knows the amount of pain we go through I know people get fed up with us moaning but when in constant pain its hard not to moan Its a dreadful disease.