What is a FLARE? and when is a Flare not a Flare ????

[Golf-1]

Having been on this PMR road for almost 3 years, I have spent lots of time reading all of the helpful posts on this Forum and have received and taken some very useful advice.

Initially, I thought I might be the lucky one to say goodbye to my "friends" on here after 2 years, not so!!!! and I will not be surprised if I am still here for another 3 years.

I have had permanent pain in my right hand from the start, and in spite a lot of investigation by GP and Rheumy, the pain persists, I have assumed this is not a Flare?

Interestingly, whilst recently in Australia, I asked a Pharmacist if he had anything he could give me to ease the pain, he suggested mixing Deep Heat and Voltarol together and rubbing that into the hand, although it has not stopped the pain completely, it has reduced the area of pain to the region of my thumb - worth a try fellow hand pain sufferers.

I wake up most days with pain in the left side of my neck that goes away after a couple of hours activity - is this a Flare?

I often wake up with pain in my left hip that similarly goes away after some exercise - is this a Flare?

When I have these pains in neck and hip that go away within a few hours but keeps recurring daily, does it warrant increasing my Pred dose, currently 4mg, or do I just stick with it as I am inclined to do?

I have a worry/feeling that if I increased my Pred dose every time I get some pain I will be back to where I started 3 years ago, 20mg per day, and I really do not want to do that.

Hence my question

[DorsetLady PMRGCAuk volunteer]

When is a flare not a flare … good question …😳.

My view is a flare [if not treated ] generally increases as the days/weeks go by. Yours sounds as if it’s your PMR grumbling until your Pred gets into the system and settles it down. .. or just the normal morning aches of life.

As for hand, if that doesn’t seem to alter no matter what dose of Pred you are on, I’d say not PMR as such.. has carpel tunnel syndrome [CTS] been considered, and dismissed?

Just for record what time to you take your Pred?

[Golf-1 in reply to DorsetLady]

Thank you DL, Carpel Tunnel Syndrome ruled out by Rheumy after Xray and Ultra Scan.

The technician that did the Ultra Scan said he could see what was causing the pain but would not tell me what it was, I was watching his screen and could see red areas showing between the bones just below the first knuckle of the fingers. He took screenshots of it to send to Rheumy.

I have always taken Pred with breakfast at about 8 o'clock

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Fingers... arthritis maybe? especially if gel helped a little.

Maybe try taking Pred earlier if you wake for comfort break, then back to sleep whilst it gets to work... might be worth trying for a week to see if any difference.

[Golf-1 in reply to DorsetLady]

Thanks DL, I have often read of people waking in the middle of the night to take their Pred. I do rather enjoy my sleep so have been reluctant to try it myself. Perhaps I should give it a go for a week and see if it helps.

I normally take Pred, Amlodipine & Omeprazole at the same time every day, plus Alendronic Acid on Sundays, Folic Acid on Tuesdays and Thursdays plus Methotrexate on Wednesday, all at the same time with breakfast each day.

If I try Pred at say 4 o'clock 🥱, is it ok to take the rest with Breakfast?

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

In my view - yes.

If you take Pred with spoonful of yogurt or plain cracker shouldn't wake you up too much... 😴

[Golf-1 in reply to DorsetLady]

Will let you know how I get on😴🛌💤🥱

[howtotaperdown in reply to Golf-1]

Did the Methotrexate help you to reduce près dose ? I was invited to do the trial. In Leeds, on efficiency of metho to reduce prèd dose.

[Golf-1 in reply to howtotaperdown]

That is the theory; there is really no way of me being sure that MTX does help reduce Pred for me, particularly at the low dose of 4mg that I have tapered down to about 4 times now and have been on since December.

Due to Flares, I have had to go back up to around 10mg and taper down again.

My original Rheumatologist started me on 15mg of MTX, after a year he increased it to 17.5mg last August and then immediately retired !! my new Rheumy raised my MTX to 20mg last October, I had blood tests yesterday and a follow up appointment with him in a few weeks' time to check my progress.

I would say that I have had no apparent side effects from taking MTX.

[howtotaperdown in reply to Golf-1]

Thanks. But I suppose that the MTX might have helped you get down to 4 mg?

[Golf-1 in reply to howtotaperdown]

Possibly, I really don't know.

My view has been - if it might help and it does not hurt give it a go

[PMRnewbie2017 in reply to Golf-1]

I'm interested in your drugs, I'm a retired Pharmacist.

I think you should take your Pred as early as you can manage without setting alarms and disrupting your sleep pattern which in older folk can be a problem.

Omeprazole and other PPI's are on a list of drugs not recommended to be taken with MTX on along term basis. Do you need it?

I am curious as to why you take folic acid the day before the MTX as well as the day after? Folic acid decreases the effectiveness of MTX which is why it isn't given on the same day. There is a theory that if given 48 hours before MTX it can reduce gastro-intestinal side effects. The usual NHS guidelines are 1mg Folic acid daily or 5mg once a week and in both cases avoiding the day of MTX dosing. I'd be really interested to learn more.

You can take the Amlodipine in the morning or at night. Latest studies show it makes no difference to your BP control.

I'm now on 15mg MTX because I can't reduce below 2.5mg Pred and despite resisting it for 7 years, I have to say i feel great on it! Time will tell.

[PMRpro Ambassador in reply to PMRnewbie2017]

I'm blowed if I would take MTX if I was happily on 2.5mg pred!! But if you feel OK on it it may be worth the try I suppose.

What I found interesting recently at a research seminar was queries from non-UK based rheumies as to why a trial was using oral MTX to assess whether it really made a difference in PMR as they all said that injectable MTX was far superior to oral administration. Maybe that is the problem in the UK ...

A lot of patients actually need 6x5mg folic acid to reduce the adverse effects - so are taking it the day before and the day after the MTX. Even 6x5mg didn't stop me developing overwhelming fatigue - I could barely put one foot in front of the other.

[PMRnewbie2017 in reply to PMRpro]

But I can never stay happy at 2.5mg and if I'm honest I've always been on the fringes of being under-dosed from 4.5mg downwards. I've been under so much pressure from 3 different Rheumies over the past 7 years to "try" MTX, after yet another failure I thought "what the hell", it might even help my OA. I've not been taking MTX for 2 weeks as I have a nasty virus infection and my hands are so sore, yet had improved. Side effects from drugs are always a problem for some patients and it does present challenges. It's often a balancing act between finding a dose that works yet minimises side effects. The use of Folic acid with MTX is "off-label" and I have seen some very weird and wonderful regimes over the years and eventually stopped querying the scripts!

[PMRpro Ambassador in reply to PMRnewbie2017]

Ah - but even so, I personally would prefer 1x5mg pred to less pred and MTX on top. Even with TCZ, I can't get under 7mg pred and MTX has no guarantees either.

[DorsetLady PMRGCAuk volunteer in reply to PMRnewbie2017]

But I can never stay happy at 2.5mg

Why? because it’s not enough to control PMR?

TBH, I think I’d prefer 4.5mg or 5mg of Pred rather than add in MTX - but I guess you can but try - you may be one of the fortunate patients where it works - hope so.

Even if it doesn’t, then at least you will have tried, and have the proof for all to see.

[PMRnewbie2017 in reply to DorsetLady]

Exactly!! Plus, I wouldn't be surprised if I'm a PMR lifer. My Dad was. As I'm still only 66 and have been on Pred since I was 59, and worse case scenario, I may be on it for another 15 years plus (God willing) that amounts to over 20 years of Pred. Currently my Dexa results are good but my cataracts are worsening. I also get tired of arguing and being labelled as a difficult patient! Time will tell and since I was deriving benefits what have I got to lose.......................

[DorsetLady PMRGCAuk volunteer in reply to PMRnewbie2017]

Agreed… and even though it might be 20 years of Pred, most of it will be below 5mg.. and QOL is important - at any age.

Not awkward patient, knowledgeable - and that what some don’t like😊

[tangocharlie in reply to PMRnewbie2017]

I'm a similar long-termer, dx at 51 so now going into my 13th year of PMR. It has been a struggle to get treatment over the years, often I've known more about the disease than the doctors and ither HCPs treating me. In the early years anyway; I have a wonderful rheumie now but had to fight to get where I am. re the DEXA scans, if you see my posts, I was assured I was OK but yet still had spinal fractures and that's put the cat amongst the pidgeons even with the specialists because it seems DEXA scans are actually pretty useless at looking at bone quality, they only vaguely measure quantity and then compare that figure to that of a younger person. I'm proud to be seen as a 'difficult patient', it excites me to be part of the change we so badly need to see. I wonder if we are all 'lifers'? Maybe PMR and GCA never fully go away, it's just like putting out a fire but then you constantly have to monitor the smouldering embers from bursting back to life if caught by a breeze? Who knows. I've started following you as I learn things from your posts, thanks

[PMRpro Ambassador in reply to tangocharlie]

"Maybe PMR and GCA never fully go away,"

That is pretty much accepted by the brighter experts and has been said for ages - that is why we talk of remission not recovery. The propensity for it to wake up again remains lifelong.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes.. that’s my thought as well..which is why I’m always at pains to say “my GCA is in remission”..

I hope it always will be, but no guarantees of course. Which makes me wonder why some people [medics as well] seem so surprised when either raise their ugly heads again.

[PMRpro Ambassador in reply to DorsetLady]

Me too - but some do seem a bit dense about PMR/GCA at times!!

[tangocharlie in reply to PMRpro]

Which is presumably why some people like Prof Dasgupta recommend not getting off steroids entirely but staying on a low dose of say 2mg?

[PMRpro Ambassador in reply to tangocharlie]

I don't know he does it for ever but I think it is his tacit admission that PMR DOES often last very much longer than he will admit in public.

[Golf-1 in reply to PMRnewbie2017]

Thank you for your interest.

I have no medical training whatsoever and therefore tend to do as I am told by the "Professionals" I have a good relationship with my GP and Rheumatologist and am prepared to believe that they prescribe the medicines for me that I need.

At the outset of my PMR diagnosis March 2022, my GP prescribed Omeprazole alongside the Pred, as I understand it, to protect my stomach. At that time, I was not taking MTX, this was prescribed by my Rheumatologist 1 year later in March 2023, that was 15mg one day per week with 5mg Folic Acid 24 hours later.

I have been taking Prednisolone, Omeprazole and Alendronic Acid for 3 years and MTX for 2 years, does that constitute a "long term"? I am not sure which one you are referring too when you say, "do I need it", but either way I am afraid my answer is, I do not know.

Having had no side effects after 12 months of 15mg MTX with 5mg Folic Acid the day after, my Rheumatologist upped MTX to 17.5mg in August 2024, with 5mg Folic Acid the day before and the day after, I do not know why, I was on 7mg of Pred at the time.

In November 2024 I saw a new Rheumatologist and was on 5mg Pred. Again, as I had no side effects to 17.5mg, he suggested I go to 20mg of MTX and keep 5mg of Folic Acid the day before and day after.

I understand the purpose of the MTX is to help reduce my Prednisolone more quickly, I am currently stuck on 4mg (since December) and intend to stay at this level until the niggles in my neck and hip have gone away.

I have a Rheumatology appointment in a few weeks so will be interesting to see what is suggested for me next !!!! I will raise the question about conflict of MTX and Omeprazole

[PMRpro Ambassador in reply to Golf-1]

"I understand the purpose of the MTX is to help reduce my Prednisolone more quickly, I am currently stuck on 4mg (since December) and intend to stay at this level until the niggles in my neck and hip have gone away."

It MAY help reduce the pred - and it MAY be more quickly. But there are no guarantees. Sometimes all it does is reduce the likelihood of flares somehow but sometimes it does nothing.

[Gala123 in reply to PMRnewbie2017]

I was initially prescribed 5 mg folic acid for 6 days (every day except MTX day), I then had too much folic acid in my blood and now take 5 mg 3 times a week. Have not taken the blood test yet to see it the levels are normal. But the good thing is that I have no side-effects from MTX. I am on 20 mg. I also take omeprazole and was told that it is OK.

[PMRnewbie2017 in reply to Gala123]

I don't want to cause alarm but I have double checked the British National Formulary for interactions between MTX and PPI's (Omeprazole,Esomeprazole,Lanzoprazole etc). This is what it says:

"Concomitant use of methotrexate (primarily high doses) and proton pump inhibitors (pantoprazole, omeprazole, or esomeprazole) may cause delayed elimination of methotrexate, increased methotrexate and/or hydroxymethotrexate concentrations, and subsequent methotrexate toxicity."

"Primarily high doses" is the governing factor but what constitutes a high dose is not clarified. In pharmacological terms high would be 25mg and above. Providing you are having regular blood tests (monthly) then any issues will be detected quickly.

[Gala123 in reply to PMRnewbie2017]

Thank you, I am aware of this and checked both with a pharmacist and my doctors, they are satisfied with me taking PPIs considering all factors. I believe high dose in this context refers to chemotherapy protocol in cancer which is much higher that the rheumatology doses. It does not mean I am fully comfortable to be taking it and yes, I do have regular blood tests. I will revisit it with my doctors.

[Gala123 in reply to PMRnewbie2017]

Here want I found:

uptodate.com/contents/thera...

"Most clinicians reserve the term high-dose MTX (HDMTX) for doses ≥500 mg/m2, as are used for central nervous system (CNS) prophylaxis in patients with leukemia and high-risk lymphoma, and for the treatment of leptomeningeal metastases, primary CNS lymphoma, and osteosarcoma".

[PMRpro Ambassador in reply to PMRnewbie2017]

It is the doses used in oncology - which are absolutely massive compared with the maximum 25mg per week used in rheumatology. Many patients in rheumatology are only on 15 or 20mg which still allows some leeway if the PPI does increase blood levels and it isn't the end of the world if they do reduce the dose to reduce adverse effects.

[Golf-1 in reply to Golf-1]

A follow up question - I have been told to take the Alendronic Acid, that I take on Sundays; on its own at least 30 minutes before food or other medicines.

Any suggestions how I manage that if I am waking at 4 o'clock to take Pred?

[PMRpro Ambassador in reply to Golf-1]

It is only one day a week - take the pred later that day. You must take the AA on an empty stomach and remain upright for 30 mins so it is a bit difficult to get round that.

[Golf-1 in reply to PMRpro]

Thank you, PMRpro & DL - I had not been told about standing upright, only the 30 minutes bit - SOOoooo much to learn even after 3 years

[PMRpro Ambassador in reply to Golf-1]

REMAIN upright - sitting is OK, not necessarily standing but not bending over is very important.

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

As PMRpro says you don't need to stand .. I always sat and read emails for 30mins...

medicines.org.uk/emc/files/...

see para 3 of PIL -😊

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Ditto to PMRpro’s reply.. 😊

[Gala123 in reply to Golf-1]

I get up an hour earlier to take AA, then breakfast and pred at usual time.

[Golf-1 in reply to Gala123]

Having now taken Pred before bed, I have left the AA until I wake up on Sunday mornings then Omeprazole and Amlodipine with breakfast 30 minutes later

[Sophiestree in reply to Golf-1]

Surely there's a report of the ultra sound you can request a copy of? I always ask for copies of any scans after one of the many consultants I saw pre diagnosis early on when they were responding to many blood anomalies suggested I got a folder and requested them. Not so easy if you are not in the hospital though as GPs seem to find them harder to access. No idea why.

[Golf-1 in reply to Sophiestree]

There is a report that I have seen, it hints at tendonitis, but no suggestion as to how to deal with the pain. The mix of Voltarol and Deep Heat has relieved it a bit, I will see what the rheumatologist suggests at next appointment.

[arvine in reply to Golf-1]

All of those symptons I have experienced and more, sounds like arthritis to me, have yo had all the tests, exrays, MRI, catscans, initial symptonsvof PMR I understood to be stiffness, pain shoulders, girdle, hips on both sides of body, at least thatvs what my initial diagnosis over 8!yrs ago, so am skeptical when I read comments about pain in wrists, ankles, fingers etc still beingbPMR causing these symptons

[PMRpro Ambassador in reply to arvine]

Peripheral arthritis can be identified in PMR.

[arvine in reply to Golf-1]

And to ad, my rhuemy had told me of course more pred will mask and reduce pain, it s a painkiller, which of course we know it s for inflammation, which in turn does reduce pain in many cases, I have chronic pain in all the areas you mention, and more, been on 4 mgs since past April, and suffering with pain, tests have shown severe osteoarthritis, now headed for hip replacement on Feb 20th, so just thinking you maybvery well have some form of arthritis, but that diagnosis would come from rhuematologist

[PMRpro Ambassador]

"does it warrant increasing my Pred dose"

Only you can answer that - if 1mg more made a great difference to your QOL, then I would do it.

I'd say the persistent hand pain isn't a flare - and not impressed by the technician's diva act. The other stuff - maybe, maybe not. Sounds like something that hasn't been fully cleared out but you are on enough pred to stop it worsening.

[Golf-1 in reply to PMRpro]

Thank you PMRpro, I am going to try DL's suggestion of waking up to take Pred in the middle of the night, I guess that may be marginally better that the early morning pains -, I do like my sleep.

As for the hand, I do not think GP or Rheumy know what the problem really is, I think they are hoping it will just go away. I guess the only other option would be to cut it open and have a look - I will not be agreeing to that, so carrying on with the Voltarol/Deep Heat concoction.

[PMRpro Ambassador in reply to Golf-1]

If it works why not.

[readingbooks in reply to Golf-1]

There is another possibility other than waking up in the middle of the night to take pred. I too like my sleep after so many years of sleep disturbance in the earlier days and this method has been mentioned on the forum. I put my pred in an empty gastric resisitant capsule and take it when I go to bed. It is then absorbed past the stomach and in the gut so is in the blood at the time it is needed. Worth a try ?

[Golf-1 in reply to readingbooks]

Thank you, where do I get empty gastric resistant capsules?

[readingbooks in reply to Golf-1]

I get mine from Amazon. Enteric empty gelatin capsules, white, size 0. x100. XPRS Nutra, but there are other brands. Hope this helps.

[Golf-1 in reply to readingbooks]

Thank you, can you fit 1mg & 2.5mg Pred tablets into them?

[readingbooks in reply to Golf-1]

1 mg definitely. We don't have 2.5 tabs here in Canada so I don't know. But If 2.5 don't fit you could cut them in half first.

[Golf-1 in reply to readingbooks]

Thanks, I will give it a try

[readingbooks in reply to Golf-1]

I mean to add that there are different size capsules available if you prefer a larger one,

[Golf-1 in reply to readingbooks]

I could not get your particular brand over here in UK, so have ordered size 0 from UK supplier, I measured a 1mg Pred tablet and it should fit inside,🤞🤞🤞🤞

[readingbooks in reply to Golf-1]

That will fit 1 mg without a problem. There are other brands and sizes available. I ordered mine from Amazon.

[Golf-1 in reply to readingbooks]

I have obtained some Enteric empty Gelatine Capsules, so all set to try taking Pred when I go to bed, do you still have something with them like yoghurt or a cracker, or is that not necessary? I intend to take the other pills as normal with breakfast the following morning.

[readingbooks in reply to Golf-1]

No, there is no need as they will not be absorbed in the stomach.

[Golf-1 in reply to Golf-1]

Update on Pred before Bed - It seems to work.

For the past week I have taken 4mg Pred in a slow-release capsule with a glass of water at about 10 0'clock as I get into bed.

From the first night of trying, I no longer wake up with neck/shoulder pain, and according to my watch, I am actually getting a better night sleep.

Thank you all for the advice given on this, for those who suffer similar neck/shoulder pains in the morning it might be worth a try.

[PMRpro Ambassador in reply to Golf-1]

Good to hear that - all sorts of things are worth a try!

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Good…

[Musiclady18]

As I read your story it sounded a lot like me! I have had PMR for 7 years and just recently started with pain in my thumb, right shoulder and hip that comes and goes. Just went to the Rheumatologist yesterday as my CPR readings were up. After checking me and she felt it might be some Osteoarthritis, she recommended putting Voltaren on my thumb, exercises and swimming and/or warm baths? I will try and see if that works. I do not usually take anything for the pain. Good luck with your journey. I am on Methotrexate.

[Golf-1 in reply to Musiclady18]

Just a comment about swimming to relieve the pain.

I have just returned from visiting my son and daughter- in- law in Australia. Being their summer, I agreed to join them at 6.30 on several mornings, for a swim in the open-air sea water beach baths. Should be good for me and a healthy thing to do, I thought !!!

Firstly, the water was cold brrrr, secondly, it hurt my hand so not sure that swimming helps pain in hands

[PMRpro Ambassador in reply to Golf-1]

I find aquafit makes my hands and wrists very sore.

[Golf-1]

Update on Hand Pain

Since my original post I have been trying the combination of Voltarol and Deep Heat, it gets a bit messy on the hand at first as the Deep Heat is white and remains on the hand for an hour or so.

However- on a scale of 1 - 10 where 10 is; it made no difference and 1 is; no pain at all, I would say after a couple of weeks my pain is around 3 - 4 much much much better.

I really wish I had tried this 3 years ago and would suggest anyone else who suffers from permanent severe hand pain - give it a try.

I put about 1cm (1/2 inch) of each on the back of my hand first thing in the morning (after washing) mix them together and rub it in.

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Good to hear you’ve found something that helps….

[PMRpro Ambassador in reply to Golf-1]

What about before bed and wearing gloves??

[Golf-1 in reply to PMRpro]

I had not thought of trying that, my only concern would be that unless they are Latex gloves they might absorb some of the cream/gel. Not sure I would want to wear Latex gloves in bed

[PMRpro Ambassador in reply to Golf-1]

Cotton is what is usually recommended for such an action - the cream/gel is still in contact with the skin but doesn;t get everywhere.

[Golf-1 in reply to PMRpro]

If it becomes a problem I will give it a try - thank you.

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

From that well known online retailer !

Gloves

[Golf-1 in reply to DorsetLady]

Thanks DL, I know them well.!

[PMRpro Ambassador in reply to DorsetLady]

Anyone would think you get a bonus ... 😂

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ha ha..if only!

[PMRpro Ambassador in reply to DorsetLady]

Indeed!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

But then I wouldn't be allowed to mention it on here would I!

[PMRpro Ambassador in reply to DorsetLady]

I wouldn't tell ...