Polymyalgia rheumatica (PMR) - Searching Existing Threads

[Coalacre]

New to the site and have joined to learn more about Polymyalgia rheumatica (PMR) I have tried search posts and communities with the initials but found nothing - bit bizarre - it may be user error but I wanted to address how to navigate the forum before asking questions as there may already be a thread containing the answer to my question?

[DorsetLady PMRGCAuk volunteer]

If you can’t find any posts by typing something in the search box like “fatigue”, “pain in hips”, “how should I taper” or similar - then raise your own question. You will get plenty of answers, but give a bit of info about yourself - when diagnosed, how diagnosed what dose started, what on now, etc

In meantime have a look at this -

healthunlocked.com/pmrgcauk...

[Coalacre in reply to DorsetLady]

thank you DorestLady, I have read your very informative post and it has helped tremendously.. the more reading I do I fear that I have the answer to my burning question.. thank you for the help you provide to so many on this site, much appreciated!

[DorsetLady PMRGCAuk volunteer in reply to Coalacre]

As others have said, just ask away. The forum increases day by day so even if the same question is posed every day, there will always be slightly different answers.

[Coalacre in reply to DorsetLady]

Thank you DorsetLady..

Q) My relative has been with PMR for sometime and unable to take corticosteroids due to a heart condition, they have other debilitating conditions that seem palled into insignificance by the pain of the diagnosed PMR.

I was rather hoping to establish alternative medicines/medication other than Chinese Medicine or light therapy which has been identified through this site.

I visited a local help group recently and they were lovely but the common theme seemed around prednisolone?

This is great for those that benefit from its administration as we would not want anyone to suffer.

[DorsetLady PMRGCAuk volunteer in reply to Coalacre]

Hi again,

There are a few contributors who are going down the alternative therapies route, so it might be worth asking the question. Not sure how successful they are, and obviously the “normal” way is with steroids, in fact it’s the only true and tested way.

If your relative cannot take Prednisolone have the medical profession given any indication of how they intend to treat their PMR. It does need to be addressed, because if left untreated it will surely cause more problems as well as the possibility of progressing to an associated illness - GCA.

[Coalacre in reply to DorsetLady]

Thank you, I realise that I should have included some more detail around medication as my relative is taking Methotrexate, which kind of `contradicts my posts somewhat as this is an alternative...

On reflection I might have been better asking if their is anything alternative as good as prednisolone as others seem to have had success with this more than other medications.. the Methotrexate for my relative does not seem to be doing the trick :0(

Thanks in anticipation of your patience!

[DorsetLady PMRGCAuk volunteer in reply to Coalacre]

MTX is not an alternative for steroids, but it is regarded as a steroid sparer. That in essence means it can be given alongside the steroids, so the steroids can be reduced more quickly. But, as far as I know it doesn’t replace the prednisolone per se.

If you’re in the UK then you may be aware that Actemera has recently been approved for patients with GCA (only for a year initially) but not for PMR.

[Coalacre in reply to DorsetLady]

Thank you DorsetLady.. I am learning rapidly and appreciate the support.. we are in the UK.. but was not aware of the availability of Actemra..

I have read a little now about Actemra.. the information below for others benefit and was obtained from the Actemra website..

"ACTEMRA is:

Available by medical prescription only

For adults with moderately to severely active rheumatoid arthritis (RA) who have used one or more disease modifying antirheumatic drugs (DMARDs), such as methotrexate, that did not provide enough relief

For adults with giant cell arteritis (GCA)

For people with active PJIA ages 2 and above

For people with active SJIA ages 2 and above"

Interesting that they state:

"For adults with moderately to severely active rheumatoid arthritis (RA) who have used one or more disease modifying antirheumatic drugs (DMARDs), such as methotrexate, that did not provide enough relief"

I hear what you say around its approval for GCA - certainly looks worthy of a conversation with the medical profession?

I don't feel so bad about asking the potentially previously asked question now and I am genuinely grateful..

[DorsetLady PMRGCAuk volunteer in reply to Coalacre]

No harm in discussing, but think it’s only approved by NICE for GCA, and as I said for only a period of one year.

But as the saying goes - if you don’t ask, you don’t get!

[Coalacre in reply to DorsetLady]

DorsetLady, You are right.. there must be several reasons for the limitation of use.. apart from cost of course.. does tell me something though.. variations of medication or new ones are out their.. ever hopeful for my loved one ;0)

[DorsetLady PMRGCAuk volunteer in reply to Coalacre]

Trouble is Pred works for PMR and GCA and is cheap to produce so little incentive for huge pharmacy companies to invest in research.

[PMRpro Ambassador in reply to Coalacre]

No - whatever they may have been told mtx is NOT an alternative when it comes to PMR

[Berylholley in reply to DorsetLady]

Hi can you tell me how to get to the vasculitis forum please I am wanting to find out how low a dose you can go down to that will still protect your eye site. I don't think there is one for Temporal Artritis and GCA doesn't quite fit as my Rheumatologist says I haven't got GCA and I definitely have Temporal problems. I am currently on 7.5mg prednisolone. Beryl. I did try to put this in the right order but when I pressed reply it reorganised it, sorry.

[PMRpro Ambassador in reply to Berylholley]

GCA is the modern name for temporal arteritis - it was formerly believed that the temporal artery was always involved and not much else. In fact it is the other way round: the inflammation leads to the formation of large cells with several nuclei in the walls of arteries in various parts of the body and that is what causes the swelling and symptoms. The only artery easily accessible to do a biopsy is the temporal artery - it is near the surface and you can manage without it so it is used as a so-called "gold standard" test. If it is positive you have 100% certainty you have GCA. If it is negative all it means is they didn't find what they were looking for - these giant cells. It does not mean you don't have GCA. There are a lot of reasons ranging from it not having reached the temporal artery to something called "skip lesions" where the bits affected are not evenly spread along the entire length of the artery and the bit of artery taken in the biopsy is not affect or the bits the slides are made of weren't involved. GCA affects arteries in the chest and head - there isn't a difference except where is involved. Nor is there any dose at which you can say "sight is protected", it will vary from person to person and case to case.

There are also far more knowledgable people e GCA here - the vasculitis forum has relatively few contributors and they tend to have other forms of vasculitis.

If you have problems with your forehead area I think you need to speak to your GP - your rheumatologist obviously feels they aren't GCA. Whether that is the case of not, I couldn't say.

[Berylholley in reply to PMRpro]

Thank you very much for that full explanation. I think, hope, that my symptoms are quite mild.

Though I am not sure. The shooting bruits go up the artery and I have had them before getting PMR but they have recently travelled up into my scalp, only one artery. I am not going and it is too late for a biopsy so I am hoping I shall be OK. What's puzzling me is it doesn't seem to be camouflaged by the prednisolone as does the PMR but as it's not painful I will try not to worry.

[Berylholley in reply to PMRpro]

Yesterday I woke up and my muscle problem had moved from my right hip (which I had blamed on the physio) to my left buttox. So I had a strategy to try and find out what it was causing me not to be able to walk on my left leg. I took 2.5mg

pred coated at 3.10am and the other 5mg of my dose at 7am with my Breakfast. No improvement so I massaged the painful area of left buttox with Ibuprofen gel. No improvement. Tried heat pad and a massager. No improvement. Have now taken a strong co-codamal(Solpadol) 30mg/500mg. If this doesn't work could it mean it is PMR inflammation? I am trying to find out if it is vasculitis of some kind.

[PMRpro Ambassador in reply to Berylholley]

I really don't think it is vasculitis as I said before. Sounds much more muscle-related. Speak to your GP.

[DorsetLady PMRGCAuk volunteer in reply to Berylholley]

This is the vasculitus link, but as PMR pro says you’ll get more info on here regarding your GCA(?), Temporal Arteritis (misnomer really). My Temporal artery was never affected, nor is it the one that endangeres sight- but it is close to skin and so easily seen and to conduct a biopsy on. The artery that affects sight is the ophthalmic artery, too deep to be biopsied.

healthunlocked.com/vasculit...

As stated GCA comes in various forms, and no there isn’t a “safe” level of Pred as such. They only safe level is enough to control the inflammation, or rather the lack of inflammation in your ophthalmic artery, and as PMRpro says that varies from person to person, and probably on the amount built up pre diagnosis and starting level and duration of initial dose.

Sorry, no easy answer!

[Berylholley in reply to DorsetLady]

Thanks for reply. So interested to hear that your Temporal artery was not affected. Sometime ago I had a fluttering in mine and thought "what was that, was it anything to worry about?" So I seem to have had this tendency all along. I will let you know what Rhumy says, his secretary told me he will be sending for me soon. I have realised I did happen on the vasculitis forum and there wasn't anything helpful but I will have a look at the link. Thanks again. It was very helpful. Beryl

[DorsetLady PMRGCAuk volunteer in reply to Berylholley]

As I said it’s was (is) called temporal arthritis because that is the artery that can easily be biopsied and obviously it can be seen if it’s enlarged. But it can and does affect many or just some arteries or just different parts of the artery not the entire length in the head. That’s what makes it difficult to get a definitive diagnosis sometime.

Please keep us informed.

[piglette]

I am so sorry you have been diagnosed with PMR. Don’t worry too much if you have questions, just ask them. Over the years hundreds of questions have asked probably repeating themselves, but people change and other things such as medications may change too. It is always great to welcome someone to the group.

[Coalacre in reply to piglette]

Thank you Piglett, great name by the way.. I have joined on behalf of a relative who is struggling chronically.. appreciate your timely response and supportive comments.

[PMRpro Ambassador]

That is very kind of you - but I promise you might search for a week or five!! I find using google more productive - and it will also bring up the other PMRGCA site if there is info there.

But ask away - everyone's questions are a bit different and here you get a tailored response

[Coalacre]

PMRpro.. your forum reputation proceeds you.. I met someone today that sign posted me to this site and mentioned your supportive posts and here you are within an hour of me posting attempting help - thank you!!

[Coalacre]

Q) My relative has been with PMR for sometime and unable to take corticosteroids due to a heart condition, they have other debilitating conditions that seem palled into insignificance by the pain of the diagnosed PMR.

I was rather hoping to establish alternative medicines/medication other than Chinese Medicine or light therapy which has been identified through this site.

I visited a local help group recently and they were lovely but the common theme seemed around prednisolone?

This is great for those that benefit from its administration as we would not want anyone to suffer.

[PMRpro Ambassador in reply to Coalacre]

No - whatever they may have been told mtx is NOT an alternative when it comes to PMR.

Actemra is a heavy duty biologic and costs IRO £12K per year - so cost really is the primary limitation when it comes to GCA.

But what is the cardiac problem/ why can't pred be used? Actemra can cause arythmias - I have atrial fibrillation so it isn't an option for me but the pred actually helps the a/f.

And where are they? What hospital are they under?

[Coalacre in reply to PMRpro]

Morning PMRpro,

Thank you for the insight it is welcomed..

We are Midlands based so under Heartlands Hospital if you are familiar with the area?

My relative had a stent fitted after a mild heart attack sometime back and it was one if the first Rheumatoid consultants that stated he would prefer them to not be on Steroids which caused a mild consternation for their GP as she had prescribed Pred.

Thank you for showing an interest.. hope you have a peaceful weekend.

[PMRpro Ambassador in reply to Coalacre]

Strange - an Italian group found using steroids improved results at 1 year:

ncbi.nlm.nih.gov/pubmed/215...

Not that I'm an expert - but my preferred approach would be to discuss it with a cardiac surgeon. Not a rheumatologist. Maybe the cardiology expert might agree - but OTOH, they might say it is fine to go ahead, especially since there is no alternative and the inflammation is more likely to progress to GCA if unmanaged and is probably causing damage to the arteries in the meantime.

I'd be insisting on a discussion with the GP about urgent/emergency referral to cardiology...

[Coalacre]

Hi PMRpro,

Thank you once again, I have considered the hyperlink that you shared and it is very interesting..

You have inspired me to firmly but fairly challenge the consultants direction, with this as an insight.. appropriately of course - not to criticise, but to seek the rational for recommending no Pred.

We place our trust in the medical profession but they can't all know everything around each other's field of medicine or expertise..

I do respect the fact there could be more to it than I know.. I will post back on this topic but it might be a while whilst waiting for the next appointment.