Weight Gain

Are you trying to reduce in too big steps? Or too fast? Slow down - it isn't a race and it isn't slow when it works!

No, I'm only decreasing by 1-2 mg. every few weeks. I am so swollen with water weight and it's very obvious with bulges on the front of my neck area, as well as my back and shoulders.  I need to get on a lower dose, but will take my time. Since I started at 60 mg, I guess I should be thankful I'm now at 18 mg. It's just an awful drug to be on for so long.

I was at 20 mg March 12th reduced 1 mg at a time staying at the dose till I felt I could drop another mg. By May 16th dropped to 18mg. By Aug 1st went back to 20 because I was feeling so lousy and agreed to start Plaquenil to see if it would aid in the reduction. It hasn't as I've tried again the same kind of reduction and I'm now back to 20 once again as each day my symptoms were increasing where I felt I was headed backwards to where I started with PMR. I am quite down and discouraged over it right now. The Plaquenil obviously isn't doing anything. I have more symptoms at my current 20 mg than when I originally started a 20 mg dose. The only way I feel somewhat better is to use a pain med during the day which usually can relieve my symptoms by the afternoon. I am changing to a low carb diet hoping that will not only help me lose this weight but improve my overall health. I don't really expect it to alleviate the PMR symptoms I'm having but who knows. I wonder if I need more Prednisone which I really don't want but I never feel good anymore. I've been on it since July 2015, was started at 15mg which totally turned me around but after the Dr controlling my reduction and doing too quickly I then ended up at 20 to achieve the results that the 15 achieved before. Ugh! I know you have exceptional knowledge about this disease and your own first hand experience to enforce that knowledge so I would value your input. The next step would be trying MX and I haven't wanted to do that thus far. 

If pain meds are helping the symptoms and 20mg pred doesn't then the question must be asked whether it really is PMR. PMR rarely responds well to pain meds. There are a few forms of arthritis which will present with polymyalgic symptoms and the true nature of the problem only becomes obvious later. In that case, mtx may help although some people with RA don't respond to it. Plaquenil isn't used much for PMR and pred reduction - there is certainly no study evidence showing it works there. Obviously there are rheumies who think it does.

At my first visit with the RA she put me on 15 mg of pred and told me it was the one way to diagnose PMR as I would have great improvement within a week.  That was exactly what happened and I felt like myself again.  The problems have come when trying to reduce. What starts to come back is the same muscle pain as before in all the same places.  She suggested the Plaquenil as an alternative to MX since I was reluctant to try it.  If I have something else I guess it will get diagnosed someday too.....my RA Dr hasn't even mentioned there could be something else going on since the Prednisone turned me around initially but I see her again next month so I will bring it up to her.  Thank you for your replies Eileen.

As I said - there are other things that can present as PMR and also respond well to pred initially. It is when the patient can't reduce that the questions arise.

"she put me on 15 mg of pred and told me it was the one way to diagnose PMR" - it's been a criterion yes, but it is now being said by the top experts that ?it isn't as reliable as many people believe. Who knows - what we NEED is a definitive test!

But I will stick with what i said about pain meds helping - they rarely are of any use in PMR and that alone suggests to me that, while you may well have PMR, you also have something else going on.

I've just been able to borrow the new book published by Oxford on PMR and GCA and noted that exactly this is mentioned when they discuss how hard it is to pin down an accurate PMR diagnosis.  It really sounds, provided people are not reducing too soon and too quickly, that if the pain is no longer held in check when appropriate tapering is begun then it's not too soon to be considering other possibilities, rather than letting the patient continue to struggle and almost scattershot trying different meds in case they'll work.  

Perhaps there can never be a real test for PMR because "PMR" is a catchall phrase for a whole basket of different ailments.  I'm feeling more and more thankful that (so far, I'm touching wood here) my experience of PMR has been a classic testbook case.

What page? It's months since I read it!!!!!

I think you are right Anhaga - there is a serious problem amongst a lot of doctors though. Faced with PMR-type symptoms, especially when it is presenting together with myofascial pain syndrome, they are very likely to first of all plump for fibromyalgia. What the trial of pred can do is rule THAT out. Then, if you taper as we make such a fuss about, when patients can't taper even at that pace - then you must ask is it REALLY PMR? But identifying what it might be is a minefield!

That said - I have managed to taper to 5mg twice. Once right at the beginning and then allowed to flare badly. The second time was after a short high dose and then using the DSANS approach. But there is more to mine than "just" PMR. I was stuck at 10mg a couple of months ago - needling for sore back muscles immediately let me get to 8mg. I was nearly at 7mg until the cold appeared - there'sa flare but it isn't, if you see what I mean.

Will look up later, just on way out, but if I remember correctly they were referring to patients who had trouble reducing at all, even though often their symptoms had been well controlled at 15 or 20.  I noticed this because several people on the forum, and that acquaintance in my "real" life, have been talking about this very problem lately.

No hurry. It certainly happens a fair bit where doctors start patients on a high dose - saying they like to "hit it hard". Give someone 40mg (I've seem higher) and not only does it work for all sorts of things but it is a load more to reduce. 

Pages 134-5 especially box 16.2.  I was a bit creative in my interpretation of what's in the book.

 

Hi Tammy, I hope you are not just going direct from 20mg to 15mg. My rheumie did that to me and it was disastrous. If I were you I would do a slower taper. Although you may be tougher than me and have no problem! 

ptolemy is right - if you have any problems tell him it was too much and you'd like to try 2.5mg (at worst) and 1mg (at best). 1mg every 10 days is 3mg in a month - and a lot easier on the body (and the PMR)!

Oh Eileen, this does worry me that the rheumie is making me reduce 1mg every week to 5mg in 5 weeks.(from 10mg) ...so he can test my adrenals.....can it actually be dangerous?, as I have a pretty good idea what I`m in for!....he said unpleasant and painful.....(started yesterday).....am I being a wimp?

No - it's "fine" you are being reduced fast - it is so they can see you without a higher dose of pred but it is only to 5mg, you have the buffer dose that replaces the natural stuff. It isn't dangerous when you know what is going on - you will feel rubbish but it is for a good reason. Someone with a diagnosis of PMR should reduce slowly to find the right dose - and to feel as well as possible. If you did it slowly you would take months - before you can get the right diagnosis. Which may turn out to be PMR but you seem to have a couple of doctors who are sceptical.It is a different scenario.

Thank you for that....

Yes , Ptolemy my Dr lowered my dose to 15 from 20 so far so good the only thing different is my heart is pounding a lot , I feel speeded up , right now it's 2:43 am and yes I'm awake my heart pounding... is this normal?

Normal for pred at this sort of dose yes!

I do hope though that from now on your doctor will use smaller reductions - you've been fairly lucky with that one but you won't have been on pred long, I managed 5mg after 2 weeks originally - never happened again after he stopped the pred and I had a major flare of all symptoms!

Thank you...it seems to be working for now . She said she would lower in Feb .. I have not tried to work out yet because I'm afraid.. I do t want to mess up my healing process...

Thank you for your advice..

You need to do some light gentle exercise - you don't need to "work out", walking is ideal. But there is no healing process at present - the disease is still active and attacking your muscles and it will continue to do so as long as it wants. The pred is just managing your symptoms to allow you a decent quality of life and to be able to move - and you will find walking helps you move even better as well as being good for avoiding weight gain and osteoporosis.

Wow your response really hit home for me .. this is all new and I'm trying to learn ...its starting to sink in...I have this faulse since of feeling healed but really I'm not .. the pain is just masked .. kinda scary!! I know this is just the beginning.. thank you for telling things to me straight!! I'm a little scared tho

Easy for me to say perhaps - but what is there to be scared about? PMR is probably the best autoimmune disorder to develop - it doesn't kill or main and for 75% of patients will burn out and go into remission in 2 to 6 years. Few autoimmune disorders do that!

Yes, many people think the pred has "cured" the PMR - there is no cure, just as there is no cure yet for Type 1 diabetes (also autoimmune) but they can be managed pretty well so you can have a decent lifestyle. We do always emphasise - exercise but don't go mad. You won't manage what you did before - but if you start low and slow at first you will be able to build up what you do over time. By that I mean perhaps 5 mins the first day and see how your muscles respond - they take much longer to recover. Gentle exercise one day, rest a day, exercise again. Although walking every day is good - just don't try to climb mountains or walk miles and miles straight off!

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

will provide you with lots of information about PMR and pacing which is as important as pred in managing PMR.

When I was diagnosed with pmr in 2013, my doctor told me it was not considered an autoimmune disease.  However, when I was diagnosed with GCA early in 2016, I was told that "that" IS autoimmune. So, is pmr considered autoimmune or not? My pmr symptoms went away totally after four months on Prednisone; however, maybe I had "different" symptoms that I was unaware, only to then be diagnosed with GCA. It's all very confusing.

I have my bicycle on a static frame andwhen I was first diagnosed the PMR physio said only start with 1.3 minutes in gear 1 for 30 seconds. Sounds nothing.   Then rest the next day.  Then build up gradually every 4 weeks to 15 minutes.  Very important not to overdo any exercise with the Pred hiding the PMR pain.

GCA and PMR are accepted by the top bods as being at different points on the spectra of the same illness - an autoimmune vasculitis. I've had PMR for over 12 years, identified as such for over 7 years and the top experts were taking it as that even then so in 2013 it was definitely perceived as an autoimmune vasculitis.

I would suspect that you actually had GCA in 2013 but were only displaying the PMR symptoms at the time which then faded enough for you to manage without pred before rekindling in 2016.MrsO had PMR first for a some months, really badly, and then it resolved only to return as GCA. The second time she was under a very good rheumy who recognised it.

Brilliant! The only way to do it - whatever the sort of exercise.

Eileen, please can you remind me where I can order a blue steroid record card for the purse.  No luck with all the chemists in town who just looked blank or my surgery who don't hold them.  My first one came from the hospital.  Many thanks.  I have looked on line but still no satisfaction.

 

I believe the northeast of England support group have their special one but I don't know if they are available for non-members - look on their site. The link is in the usual place:

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

I appreciate that.  Many thanks.

Thank you, I will go to the website you advised.. and thank you soooo much for your input .. I need all the advice I can get .. you are Awesome!!!

Ok .. I just ordered my bike !! I will take it slow and easy ... thanks soooo much !!

Great stuff.... and good for the circulation!

Thanks, Eileen! I did look at their website, but was not able to find a link for the card or bracelet.  Do you or anyone else on this site have or wear a bracelet?

On the site click on Support Us and Our little shop.

The steroid card is the first item. £1 plus postage.

Don't think they have a link for bracelets.

I bought a bracelet.  There is more than one company which provides medical bracelets.  The one I have, for the one time cost of the bracelet I have a lifetime online account, accessible to medical first responders, etc., through a PIN on the bracelet, where I can keep updated all my contact and medical information, dosages, etc.  The other company charges a fee every month and might be better for short term conditions. 

I have a MedicAlert bracelet, but they are not cheap if the details on the bracelet disc need changing often.  They do have a very good website so you can check them out.

I wear a bracelet although no one makes you. I just felt that if I were in a traffic accident or something at least they would be aware hopefully. Some people put the information on their mobile phones. You can also get necklaces. You can always print out your own card and put it in your handbag. I had the bracelet in case I was separated from my handbag! 

One reason the other one is maybe better for chronic conditions? Medical ID.

 

I wear a rubber bracelet which I ordered on line.  It was under a fiver and you can get them in different colours. It says Medical Alert Steroid Dependent.   Then if you carry a card in your wallet with your current usage this is good in case of necessity.  I also always carry a spare packet of Pred in my handbag in case of being out or away. That covers all eventualities.  My PMR friend went to her son's for New Years Day and forgot to take her Pred and didn't remember till she was back home late evening.  She really suffered the next day and her routine was all out of place.

I did the same as your friend forgetting to take my pred and swore I would never do it again, it was horrible. Mind you I did do it again, but that was definitely the last time!

It's a hard and painful lesson.

I ordered wrist band off a site called Reminderbands.  You design your own and choose the color, font and print. I'll feel better wearing something that alerts someone, as you said, if I were ever in an accident. Maybe it really wasn't necessary...I don't know.