Pain in all the finger joints

Gill what kind of scarring is left by PMR? I havent heard of that.

Thanks - I'll bear that in mind if it doesn't go away

David

Hi Barb

Yes - earlier I used to take acetaminophen and ibuprofin when I was having a bad time, but I realized that all I was doing was covering up the condition and I didn't know where I was with the pred/MXT in relation to my PMR aches and pain. So I decided to put up with "it" and try to let the messed up adrenal system tell me what was going on relative to the medication.

I'll keep trying until I get down to zero pred but if things don't work I guess I'll get back to the over-the-counter 'pain-killers'.

David

Hi Dan

Have you researched or been informed that PMR has an influence on synovial fluid loss in the hand joints ?

What I have researched is that most info regarding synovial fluid irregularities is from patients with joint disease related to knee effusions and most medical research is largely limited to findings in the knee joint.

Regarding MTX - my rheumatologist started MTX with pred after my first 'flare' and appart from this hand issue, I seem to be 'tapering' the pred quite well from 20mg to currently 4mg without any major issues. But who knows ??!!

Hopefully I'll be able to give you a defined answer when I get to ZERO pred by the beging of 2016.

David

hmm... interesting - I do eat quite a lot of carbs as a percentage of my intake. if things don't improve, maybe I'll adjust my diet - reducing carbs - for a week or so and see what happens.

Thanks

David

A lot of people have found a benefit from cutting carbs - not least in avoiding the pred weight gain or being able to lose weight while still on pred. 

Research in the north of England established last year that the hands and feet CAN be involved in PMR but whether it is synovial fluid loss I don't know. There isn't the same joint damage found in rheumatoid arthritis - and LORA remains an option as there is usually far less joint damage with it than with juvenile onset RA.

Remember that osteoarthritis pain is also helped by pred and many people find that appears when they get to low doses of pred.

Hi Eileen

Is late-onset RA something that can occur in the 'late' stages of PMR (ie when pred is at low taper levels) and does it relate to the 'hand' pains that I have been going through ?

Is there something that my rheumatologist should be investigating beyond regular PMR treatment related to these other items you mention ?

Thanks as always

​David

They don't know whether it is a case of PMR morphing into LORA or whether it is simply a case of mistaken identity in the first place. LORA would probably also respond to the higher doses of pred if it weren't too bad but pred doesn't have a disease modifying effect so the LORA would progress in the meantime. Some of us on the forums think that when methotrexate works it may be a case that it wasn't "just" PMR but there was an element of LORA there too. You can have it without having any blood evidence - called sero-negative - and then it is next to impossible to distinguish from PMR. And of course - I have no doubt you can have both!

As I say - PMR can manifest in hands and feet too, it did for me and was the most disabling part of PMR pre-pred. It eventually faded but took a good 6 months and has never come back but I have had 2 major flares - or was the last one a real relapse? It has felt different in some way for the last 3 years. I can't explain it though.

Hi Eileen,

You mention that for you it was the 'most disabling'. That is what is happening to me - I'm at 4mg, reducing in 0.5 mg or slightly less mg each month (trying to keep at 5-10% reduction depending on how small I can 'chop up' my pills) and the 'Hand thing' is really becoming an issue.

Did you make dose changes - like staying at the same mg. for a longer time or making a slight increase in mg. and holding that for a while ? Or did you just put up with the pain and keep on with your taper regimen ?

David

As I said, I wasn't on pred at the time - I had 5 years of PMR with no pred. I could barely walk and even typing was painful. One rheumy said very dismissively "OA - I can feel it in your knees..." - funny how no-one else can.

Consider hard what you are doing: the aim when tapering is to find the LOWEST DOSE THAT MANAGES YOUR SYMPTOMS - it is NOT to head relentlessly to zero come what may. As long as the PMR is active, you will need some pred. All that happens when you try to come off pred before the PMR has burnt out is that you will trigger a relapse and be back to the start, on a higher dose again. If you have a relapse, the second attempt can be very different from the first.

If tendonitis is part of your PMR then you need enough pred to get it to reasonable pain levels and then find the dose that maintains that state. It took me several months at above 10mg to get the hand and foot pain under control. It hasn't come back with reducing - thank goodness.

Of course - if you are unlucky enough to really have OA in your hands, a low dose of pred will also help that. We were discussing this on another forum recently - since my PMR has hand symptoms I'll take that as the cause of any returning pain. My GP is perfectly happy with me at 4 or 5mg long term.

Hi Eileen,

During my short 69 year life ( ! ), I’ve had many medical things happen and there was always a specific “fix” for whatever the problem was and the relevant doctor always seem to know how to fix it and giving me a sense that they were professionally capable. And these things happened with doctors in the UK, Canada and the US where I have lived during my life.

PMR is the first thing I’ve had that I am always concerned that the GP and the rheumatological specialists don’t seem to have a really good sense of what is going on; they don’t seem to realize that it is the patient that knows what is ‘working’ and the medical professional’s intent is only to stop taking prednisone as soon as possible. This is not just one doctor but several second and third opinions.

I mention this as when I was at 10 mg my rheumatologist considered that the taper was too slow and wanted me to have Enbrel – this was not acceptable to my urologist due to prior bladder cancer tumor surgery during the recent years.

Then later last year my rheumatologist came up with the topic of Rituxan infusions as a way to reduce prednisone – I tried to get second opinions from doctors at two other major US medical centers that deal with PMR, but I could not get a positive reason for Retuxan related to PMR – so I refused to do other than follow the slow taper that you and the Forums advised. Have you heard any positive comments regarding Enbrel and Retuxan ? (I’m not sure what the UK/EU name for these products is).

As I mentioned before, I think that I have been doing quite well with the slow taper that is down to 4 mg but as I am now getting a slight ‘all over’ pain/ache increase and the major hand pain, I am considering 0.5 mg prednisone increases to get back up to the level where things seem to be working well. If I do this, how long do you do you think that each ‘slight’ increase will take to work to allow me to recognize improvement – is it typically several weeks, a month ??

As always – thanks for your assistance.

David

If you were good at 5mg - why not get back there? It is a low dose, most doctors wouldn't turn a hair at you being on that for a long time - and there are many patients who are on 5mg of pred for life for other illnesses.

Let me be a bit harsh - at 69 it is unlikely that you will be on pred for 20 years, possible but unlikely. There is some bone density loss in some patients at 5mg - I have been on way above that for most of 6 years, I haven't crumbled yet. There are drugs to combat that - very likely with fewer side effects than pred plus Enbrel or whatever.

Rituximab and etanercept have not been used in studies alongside pred for PMR that I am aaware of - and I personally do not want to be part of a doctor experimenting on me without the very strict protocols of a proper study. They are used on various arthritides - most of which are far nastier than PMR and don't respond well to other drugs.

There is not yet any real evidence that anything will get you off pred if you have PMR/GCA - most of them may reduce the dose a bit but don't usually replace it. Toxcilizumab does appear to be promising - but it is also only at the clinical study stage. But are the side-effects any less than those of a very low dose of pred - which 5mg is - which you have already achieved?

Thanks as always for your 'sound' information and assessments.

Couple of quick questions - if it is considered necessary to increase due to pain/ache increases, typically does one increase pred dose at the same rate as the downward taper (5-10%) or can one do a 20% or greater jump - in my case 1 mg ?

Also - when the increase dose creates a stable, bearable pain/ache level, how long should one stay at that level before re-commencing the downward taper ?

David

No - it is usually fine to just go to the necessary dose, the slow taper is to try to avoid the withdrawal discomforts - which will always be "cured" by adding a bit more pred - or to identify the long term dose more accurately: for example, you are fine at 10mg, you are not at 7.5mg. Unless you go slowly you can't know if it is 9.5mg or 8mg that is the stopping point. Many doctors suggest adding 5mg to the current dose to deal with a flare - but if 1mg does the job, why bother going up so far?

I'm not sure you have "heard" what I'm saying: it is more than possible that you have identified your long term maintenance dose which is what you were aiming for. You may not get to zero - if the PMR is still active you will need some pred to manage it. But you are at a low dose, using MTX or anything else is very unlikely to reduce it much further. The literature is fairly clear that the "steroid sparers" are only to be used for patients who cannot reduce adequately - and that is generally into single figures. Few doctors are concerned about a dose that is below 7.5mg, the so-called physiological dose and the equivalent of what the body makes naturally.

What I'm saying is that this dose is where you may need to stay for months. Not weeks. When you do try a reduction it should be 1/2mg and stay there for a month or so to be sure it is still enough.