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[GucciPaddy]

I'm over 70 and have been recently diagnosed with having (likely, but not yet 100% certain) Polymyaglia. I'm currently on Steroids - 4x5mg as one dose per day for 4 weeks (now in my second week). They have proved to be very effective allowing me to do most body tasks, driving, light work etc. It was suggested by my GP that I should reduce the dosage gradually to see what effect it has. I'm obviously concerned that when I come off the Steroids that I'll revert to the muscle pain. I believe that my GP will be prescribing new meds to counter this problem. GP did say that this condition frequently disappears after awhile with most people - depending on the individual. Is this realistic? Are there side effects coming off Steroids? What are they?

[piglette]

If you have been taking steroids for over four weeks you will need to taper down rather than just stopping, which you could if you were only taking them for a week or so. The steroids have the effect of taking over from the adrenal glands so the adrenal glands can go to sleep, so they have to be woken up again. If you do have PMR other painkillers really do not work. Your doctor may give you a DMARD product such as Methotrexate which is supposed to help you reduce the steroids. They work for some and not for others. Some people can have nasty side effects with them too. PMR normally lasts for at least two years and on average 5.9 years. It normally goes into remission, although very occasionally it can flare up again.

[GucciPaddy in reply to piglette]

Appreciate your response re Steroids but concerned that you feel that any post meds don't appear to produce a "cure". Also the other info you gave me re possible other meds which may (or indeed, may not!) provide possible aids re reducing the dosage of Steriods, Many thanks

[piglette in reply to GucciPaddy]

Basically there is NO cure for PMR. Oh that there were. It just goes into remission when it fancies.

If you look up DMARD on Google you can get some names of possible ones you may be offered, the favourite for PMR by doctors seems to be Methotrexate. You can check the side effects.

[GucciPaddy in reply to piglette]

Thanks, appreciate your tips.

[DorsetLady PMRGCAuk volunteer]

So 20mg a day - yes?

Have you been given a tapering plan as it's not 100% certain you have PMR.

Steroids are given for short term uses for some illness, and so long as you haven't been on them for more than 3 weeks you can come off them without problem, but in your case you have been on them for longer than that and at a higher dose than your body would produce normally (circa 7.5mg) so your adrenal glands will have probably stopped working by now. That means that to avoid problems you need to reduce slowly.

The Pred addresses the inflammation which your underlying PMR produces - and that's what causes the pain you have - I'm not sure what other medication the GP is thinking of giving you, but if it is PMR then Pred is the only thing.

However Pred does not address the underlying PMR, so please don't think you are cured - you are not! PMR is a self limiting disease, lasting anything from 2 years, very often much longer.

All the time you have PMR you need to take enough Pred to control your pain. You are given a high dose to start with to mop up the accumulated inflammation, and then you reduce slowly to find the level that still controls things.

So from 20mg, the recommended taper is usually 17.5 to 15 to 12.5 to 10mg, at 3 or 4 weekly intervals provided no symptoms return, and then 1mg a month to zero.

But, and its a very big but, that is not always possible, it fact for most people it is not possible!

I would suggest you try the first, and maybe second taper and see how things go, but you may well need to go back to GP. Its not as straightforward as he thinks.

Might be an idea to read this - for your information -

healthunlocked.com/pmrgcauk...

[GucciPaddy in reply to DorsetLady]

Very much appreciate your advice and comments - particularly re Steroids. Many thanks.

[PMRpro Ambassador]

"I'm obviously concerned that when I come off the Steroids that I'll revert to the muscle pain. I believe that my GP will be prescribing new meds to counter this problem."

Well, for a start the point is you DON'T come off the steroids just like that: you are not reducing to zero, you are reducing (tapering) to find the lowest dose that manages the symptoms as well as the starting dose does. That is a very different thing.

And good luck to a GP who can find a new med to counteract the return of the muscle pain because there aren't any realistic substitutes for pred in PMR.

The median duration of management of PMR with low-moderate dose pred is 5.9 years - about 1 in 5 patients is able to stop pred after up to 2 years, the rest of us take longer.

[GucciPaddy in reply to PMRpro]

Very much appreciate your advice and need to absorb your comments which gives me mixed feelings!! But still welcome what you say, thanks

[Hidden]

If you have PMR and judging what you have said it most likely is, you will be on steroids until the underlying condition decides to leave your body. Most of us have found that the duration of PMR is unknown. For me my doctor said I will be on steroids for 18 months. Little did he know, l am 74 and have been on steroids for nearly 5 years. I am currently down to 1.5mg/day and still don't know if I can get to zero. Good luck on you journey, if it is PMR, the possibility is that the steroids will keep you pain free and eventually you will recover from PMR and be on zero steroids, but it takes time, which when we start is unknown.

[GucciPaddy in reply to Hidden]

Somewhat heartened by your comments at the same time feeling a little concerned. But either way I welcome your advice, thank you.

[PMRCanada]

Welcome GucciPaddy. Others have provided great information. Some folks, and most Drs, fear the side effect of pred and try to have patients taper down too quickly with a textbook taper that simply doesn’t work for everyone. I started at 20mg of pred a day a year ago. I’m now at 9mg but ran into some trouble lowering from 9 to 8.5. Many struggle tapering the lower they reduce as you can experience pred withdrawal, a flare (because you’ve dropped to a dose that is not enough to contend with the inflammation, and we can also experience DOMS (delayed onset muscle soreness) from overdoing activity.

I will say I am able to manage this condition better one year in by listening to my body and symptoms. I’ve accepted I’ll be dealing with this for years, not months, and have made some lifestyle adjustments accordingly. My pred side effects are manageable thus far, due in part to adopting a low carb/sugar/salt eating plan.

Stick with us, there’s s wealth of knowledge on here, and plenty of support and compassion as we “get it”.

[GucciPaddy in reply to PMRCanada]

Really very much appreciate your comments, advice and encouragement despite having mixed feelings on the challenges of having this condition. Nonetheless I thank you for the time you took to send me a response. Your advice re managing it resonates very much with me. Thank you.

[Thelmarina]

It does come as a shock. However remember that Pred is preferable to the level of pain you were experiencing, limiting your daily activity. Give yourself time to adjust, take it easy when you can and come back to the Forum whenever you feel puzzled or low. It’s a treasure house of information and support! You are most definitely not on your own 🙂

[GucciPaddy in reply to Thelmarina]

Thelmarina,

Very much appreciate your response and encouragement. Intend, as you advise, to keep in regular touch with the forum. Other sufferer's experience, advice, suggestions etc. can only be good. Many thanks

[Schurch]

Some, possibly the minority, get over this quickly. I am working on my 4th year. Down to 7 & 1/2 mil of prednisone, but cannot seem to get past that without the pain coming back. Hopefully you will be one who gets over it quickly. Since I have been on this support group, I know I am not unusual. Funny but it is actually comforting to know that. Before I thought there must be something else wrong with me. My doctor led me to believe it was about a two year timeline. Also now know why when you feel so tired coming off the steroids it is because your body is not creating the cortisol because the prednisone was giving your body the cortisol you need. Doctor did not tell me that either. So again, if not for this support group, I would again, thought something else was wrong. So any questions you have, someone on here can give you answers. Unfortunately more than going to the doctor.

[GucciPaddy in reply to Schurch]

Your comments gives me some comfort as well as sound advice. I'll certainly take on board your perspective - particularly GP v Forum, thanks and the best of luck.

[Noosat]

Good Morning, I sympathize. Stated taking 20mg and am now down to 2.5, but may have to increase dosage. I have found diet, including anti-inflammation herbs and spices very helpful in decreasing pain. Remember, not all your aches and pains are going to be caused by PMR. This morning I awoke with stiffness and discomfit in my body, especially legs. However, yesterday I decided to re-arrange all furniture in the large living space in my house. Did it without help, 10 lashes for being stubborn. It was such a help and relief when I found this site and could read the good advice given.

[GucciPaddy in reply to Noosat]

Thank you Noosat, your input very interesting - I'll certainly take note.