No to Prednisolone: Does anybody manage Polymyligia... - PMRGCAuk

PMRGCAuk

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No to Prednisolone

Fitch1
Fitch1

Does anybody manage Polymyligia wIth out taking steroids I do not think steroids agree with me but my doctor is insisting I take them .I am on 15mg and still have pain ,any thoughts on this Linda

64 Replies
oldestnewest

I doubt it but others more knowledgeable will be able to tell you.

How long have you been on 15mg? It can take a few days for it to click in.

As for agreeing with you, I suppose it could be said that steroids don't agree with anybody - they are a necessary evil. And not as bad as some people say.

Thank you for replying, I have been on steroids 3months now, most people say they feel great on them ,but do not my hair is constantly wet from my head sweating my face has gone fat with red blotches feel exhausted all the time have shacking arms and heart racing .does not feel right Linda

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Linda,

This subject is raised quite regularly - latest post previously - healthunlocked.com/pmrgcauk...

However would say, maybe Pred dose is not enough to control your PMR, you haven't given them long enough or you are trying to continue as normal and not allowing them to do their work.

Steroids don't agree with many people, but that doesn't mean they can just be declined, unfortunately they are about the only thing that will control your inflammation/pain.

You might like to read this to understand your illness and treatment a little better -healthunlocked.com/pmrgcauk...

PS. Just read your previous post - are you saying you are still on 15mg after 2 months and still have pain? A bit more detailed information might help.

Fitch1
Fitch1 in reply to DorsetLady

Yes my doctor will not give me a high dose she has said I need to take 15 mg for another 6 weeks then do bloods if no better will send me to a Rumatologist. When I first started steroids the pain went but felt ready ill and as I could not speak with the doctor I refused the steroids to12.5 mg for a week the pain then came back so eventually got to speak with the doctor and she then said 15 mg for 6weeks and is saying that now that the pain is not under control is because I reduced the steroid and Ibshould not have

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Fitch1

Passing the buck to the patients - seems to be a popular pastime! Especially as she doesn’t seem to know what she should be doing.

This is a Topic often discussed, l’ll see if l can locate the latest one for you.

Kind Regards

MrsN

healthunlocked.com/pmrgcauk...

I see Dorset Lady & l have sent you the same information....

PMRpro
PMRproAmbassador

This question was asked just a few days ago:

healthunlocked.com/pmrgcauk...

I think that thread will answer a lot of your questions. I had PMR for 5 years without pred because it wasn't diagnosed - and if you think you feel bad at present, I can tell you 5 years of no pred was absolutely no fun at all! I was working freelance and also supported by a well-earning husband and keeping mobile and relatively functional cost quite a bit. In those 5 years I gained a lot of weight because of immobility, I sweated because that is a consequence of unmanaged inflammation in PMR, and the fatigue is a part of the autoimmune condition, not just pred.

If you are still in pain at 15mg then you probably need to try 20mg, 15mg is often not enough to start with. Unless all the existing stored up inflammation has been cleared out then you are working on a very small margin of error for pain relief. You won't stay at these doses forever but you will only get lower if the inflammation is gone. The other question is have you adjusted your lifestyle to accommodate the PMR? Pred doesn't mean you can go back to your previous levels of activity - do that and you will be sore and exhausted. But that is something you have to look at and adjust to. Do read this link which gives some links about that:

healthunlocked.com/pmrgcauk......

I'm surprised you say "most people say they feel great on them" - some people do, most people struggle too but once you know how most of the adverse effects can be managed and mitigated, in some cases avoided. Diet, pacing, resting - all essentials to a decent life with pred and PMR.

Linny3
Linny3 in reply to PMRpro

You mention that sweating is a consequence of unmanaged inflammation in pmr. Can it also be a side effect of prednisone? I have sweating so bad it effects my daily life. I am on 14&1/2 mg pred and the pain control is pretty good. Haven't been able to get below that amount in four years. Could the inflammation not be under control even though the pain level is ok?

Thanks

PMRpro
PMRproAmbassador in reply to Linny3

It is also part of the underlying autoimmune disorder - and that is chugging along in the background unaffected by the pred which just relieves the inflammation. But pred can also cause sweating on some people.

However - although we have recently been talking about "long PMR" where people struggle to get to lower doses of pred, to never have got below 14 1/2mg pred should be triggering thoughts of investigation for some other cause for the symptoms besides PMR - it is atypical so could be something else. Who made the diagnosis in the first place?

Linny3
Linny3 in reply to PMRpro

My family dr. diagnosed it at first and then I was sent to a rheumatologist who handles the 3 mos. appointments and blood work. Funny you should say it may be something else, cause that is what my rheum. was saying last appointment. So, they now want to try ocentric injections since I wasn;t able to take the actemra . Still waiting on insurance to ok it. At this point I will try anything.

I Had to go to 15mg of pred. this morning to get rid of the stiffness in my hips. Very discouraging.

PMRpro
PMRproAmbassador in reply to Linny3

Ocentric???

Linny3
Linny3 in reply to PMRpro

Brain Fog don't know where I got that

I meant Orencia; used for all types of arthritis

Noosat
Noosat in reply to Linny3

From your post I wonder about expectations. I am down to 3mg of prednisone after 20mg. in almost 2 years. I have stiffness in hips every morning and sometimes discomfit, but that is not "pain." I don't believe in miracles, so don't expect to be without any issues, and so back to "normal." My understanding is that PMR neve completely goes away, just that some symptoms can be controlled enough to make life livable, and prednisone can help preventing flare ups of pain.

Linny3
Linny3 in reply to Noosat

I think because I have back issues, when the stiffness starts in my hips it causes pain in my back. If I let it go without a little more pred. then the pain and stiffness spreads to my upper thighs and groin. If that happens then I can hardly walk due to the pain in my hips. I try to stop that from happening. I am back to 14&1/2 and see how it goes.

Dr. believes I have pmr. , fibromyalgia and wonders if another underlying arthritic condition is there causing more problems.

Noosat
Noosat in reply to Linny3

Very sorry to hear this. I have osteoporosis which causes aching hips and back. I take a large dose of Tylenol, which gives a modicum of relief. I can relate to upper leg pain. It was the unbearable pain in my quads that led to PMR diagnosis.

Viv54
Viv54 in reply to Linny3

Snap !😞

Thank you , I think I am probably doing to much and not taking care of my self I have tried to continue playing golf and swimming , I am giving these ups for a while

PMRpro
PMRproAmbassador in reply to Fitch1

It may not be for very long - but FIRST you have to get things under control. THEN you can explore your personal limits - very carefully ;)

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Fitch1

Naughty, naughty! You didn't read my intro first time around did you? Or if you read it, you didn’t believe it. 😉

MrsNails
MrsNails in reply to Fitch1

Linda

I could barely walk, get up or downstairs, in or out of a chair, dress myself or do my hair......

You need to let the Prednisolone work & that is by resting & as PRMPro says then look at what you can achieve.

Some people need 20mg initially but l responded to 15mg......

Good Luck & take it easy

MrsN

diana1998
diana1998 in reply to Fitch1

I started on 30mg and could do nothing.

Fitch1
Fitch1 in reply to diana1998

How are you now

diana1998
diana1998 in reply to Fitch1

That was 5 years ago at Christmas when I had bad side effects to pred. It impacted on my life hugely. Nosebleeds until 12mg, palpitations, no energy etc. Not too bad now but never the same as my old active life. I am on 6mg, due to drop to 5.5 in Oct. Was there a year ago but did too much and had flares and went away too much etc. I am OK if I pace myself. One thing one day, quiet day the next. Can't walk far as weakened muscles in spite of the gym and exercises and can't go cycling any more or garden😢 My friends and hubby all understand which is lucky. I am a very chirpy person and do things like bread making, cooking etc which I love and see friends alot. One has to make the best of it and adapt. It improves gradually. Take it slowly for success.

I did read it, I think I am just finding it difficult to adjust to not doing much, My husband keep asking me am I better my golf friends also ask am I better I think they think I should be back to normal and I am just not almost getting worse feel very fussy and confused a lot of the time

HeronNS
HeronNS in reply to Fitch1

You know, if you had a broken arm or leg your nearest and dearest who miss your old self would not be asking you if you feel better and can you play golf today. They would be looking after you and insisting you rest so you can heal quickly and well. Just because your disease is invisible doesn't mean it isn't just as real as a broken limb.

Try sharing this story with your friends and family:

butyoudontlooksick.com/arti...

diana1998
diana1998 in reply to HeronNS

I totally agree. Pmr is a serious decease which many folk know nothing about. They need educating.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Fitch1

Ok you did read it, but you didn't understand the implication - not a criticism, most new patients don’t on first read....which is why I say keep it, refer to it a few months in, and then it will begin to make sense.

Explaining to loved ones is difficult - and they will say things, like “you should be better now you’re on the meds” - but unfortunately it’s not as easy as that as we know. If it was, there wouldn’t be a need for this forum.

This might explain (for friends etc) - PMR easy explanation

Your immune system has stopped working correctly so your body is in effect fighting itself.

In your illness, it causes your blood vessels to become inflamed so the blood doesn’t get around to feed your muscles in your shoulders, arms, hips, legs which results in stiffness, pain and fatigue.

The only way to control those symptoms is to take steroids until the illness goes into remission.

You might look fine and normal on the outside, but inside it’s a different matter altogether.

I LOOOOOVE this support group! God bless you all!

Dear Dorsetlady, thank you for the amazing insights 💕

I was golfing 4-5 times a week, usually 18 holes with good friends prior to PMR. Golf ability kept getting worse over the last year or so. Everything from lack of balance, increasing pain and perceived decrease in mental acuity made everything (not just golf) harder. I’m 76 so I blamed old age. Finally got the PMR diagnosis and started Prednisone 40mg - instant relief. Rheumatologist dropped to 15 mg a week later and quite a bit of pain returned. Experimented with dose and settled on 22 1/2 mg and now pain free - however still weak and unable to play more than 9 holes once a week. As others have said modifying diet an physical expectations is helping and I expect to get back to a semblance of normalcy before too long. From what I’ve experienced I don’t expect to get back to where I was but being able to function without pain is worth it. As PMRPro and others have said this is not a curable disease but it is manageable. Your husband and your golf friends need to understand that and help you find the level you can participate now. My friends understand and have driven me back to the clubhouse in as few as 4 holes as I come to understand my current ability and diet and exercise to get better. My very understanding wife has made this bearable for me. I expect to lead a “new normal” (I hate that term by the way!) life for at least 10 or 20 more years. Pain free gives me the will to want to do that and I wasn’t so sure about that a few months ago. Hang in there.

I don't think 15mgs would control pain.Depends what your problem is of course.I have temporal arteritis and it can be only controlled by high dosages from which I am tapering.The side effects are horrible.Its like I'm allergic to it but there is no other drug.I searched because this is second time round for me.The only consolation is that it does get better as you get off the awful drug.!

PMRpro
PMRproAmbassador in reply to Raewynne

15mgs can be quite adequate as a starting dose for patients with PMR - I wasn't 100% pain-free on day 1 but over the following couple of months the pain resolved as the existing inflammation was dealt with. GCA is a very different case and needs more pred at the start - but at some point 15mg will become an adequate dose.

Raewynne
Raewynne in reply to PMRpro

Are you a Doctor.? I wouldn't be wanting to wait 2 months for the pain to dissipate.

PMRpro
PMRproAmbassador in reply to Raewynne

After waiting 5 years for a diagnosis it wasn't a problem - overall I had probably an 80% improvement in symptoms in 6 hours. What took the time was the bursitis and tendonitis in hips, hands and feet. The body often doesn't heal in a week ...

cranberryt
cranberryt in reply to PMRpro

My experience was similar. 85% improvement in under 24 hours but it took about 2 months at 20mg to deal with that remaining 15%. It’s been just over a year and I am down to 5mg. It just takes time!

diana1998
diana1998 in reply to cranberryt

That's quick. Lucky you!

Two things , on the sweating issue ,this is my second flare up so second time on Pred both times as i got off them i had no more sweating , for me it is one of the worst side affects . Dripping from head to foot everyday ! The second issue is when i had this flare my DR told me to start Pred on 20mgs mi thought i knew better and started at 15 , big mistake ended up with many more problems and 40 mgs of pred ! That took a few days to kick in. My point is there very well may be things other than pred to try, but PMR is such an awful illness the quicker you get on tip of it the better ! Im now at last down to 20mgs, pain and sweating getting less everyday ! Hang on in there . Listen to your body and the very best of luck.You willl get there . Best wishes Viv x

Fitch1
Fitch1 in reply to Viv54

Thank you Viv

I started on 15mg and it helped, but not enough. I upped just 1mg to 16 and was a lot better. I dripped with sweat before diagnosis. I stopped dripping (and I mean it pours out, of my head particularly) on 16mg. But as I started to reduce it came back. But I realised this week it’s not due to climate, it may be Pred, but it may be when I do things the disease doesn’t like! I poured with sweat while gardening this week, but not on a slow, but two hour long, hike! I dripped while I sorted & stowed away a large supermarket order. I hate the sweating, but always have a towel handy. I am sweating less on 8mg, I did just sit in a chair & sweat, now I sweat during certain types of exercise...oh, housework is bad, too. Think I may sweat when overdoing it, but this house has to get clean & the 30 plants we bought need planting (hubby helps with all!) just hoping this helps, but, sorry, I wish I knew if it’s the Pred or the disease that’s making me sweat profusely, but I don’t. Good luck to you!

Fitch1
Fitch1 in reply to Pixix

How long were you on 16 mg before slowly reducing

Pixix
Pixix in reply to Fitch1

6 weeks, but that included a very busy Christmas, New Year & three weeks holiday (not stressful, but we were in Florida & it was a very active holiday). Otherwise I would have started reducing after 4 weeks.

Thank you for your reply ,it helps to know that you are not alone in this .

PMR since 2007. My rheumatologist has me on Plaquenil 200mg twice a day. I cannot take steroids as they cause "steroid psychosis". Do have to have an eye exam twice a year instead of once a year. It works for me although some will disagree with the medicine. dovepress.com/polymyalgia-r...

It is my understanding that if you respond to Planquenil, it is not likely PMR. More likely to be RA or seronegative RA.

Posted link for reference.

PMRpro
PMRproAmbassador in reply to sassykitty

The work on Dove Press is often poorly peer-reviewed - and there are a LOT of weak points about that study by Brawer. Not just my opinion but that of top rheumatologists and it has been discussed before.

sassykitty
sassykitty in reply to PMRpro

My Rheumy is one of the top in the USA and I know she would not prescribed for me unnecessarily. I post about Plaquenil as food for thought only and give others an opportunity to discuss with their physician. Having PMR since 2007 I am somewhat of a Pro also! I have worked in the medical field myself since 1965.

ChinaWuntoo
ChinaWuntoo in reply to PMRpro

Quote: However, the widespread use of CS early on in the course of PMR has not adequately allowed for the unfettered observation of disease evolution.

end quote

Well, thank goodness for that!

The article doesn't read to me as proficient as most articles I've read on PMR.

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

I had 5 years of unfettered observation of PMR!! That was plenty ;)

Hello Fitch1

My cousin has been on prednisone for year's can't seemed to wean herself off it - I wrote about it a couple of years ago I called it addictive I know I wasn't too popular at the time.

I just put up with the pain if you keep yourself busy you forget about the pain and also there are pain management workshops and I am sure there would be something on Google about how to go about it. Well that was until I heard about Tumeric best thing that I have done in my life I came down with CFS in 1989 when my husband was suffering from Prostate Cancer. We were helping one another out of the lounge chairs and he started crying one day and said to me don't you get sick too. I could have stayed in bed all day but I made myself get up - the pain was intolerable but the more I moved around the old joints seemed to improve. If you are interested in the Tumeric and would like to know how I take it - let me know and I can send you the address for more Tumeric information as well.

90planetree
90planetree in reply to JMTS

I would like the info on turmeric please. I have been taking turmeric for a couple of years before polymyalgia but didn't know whether to continue with it or not. My last CRP level was 235 & I was diagnosed this year on 7th August. I am on 12.5 pred at the moment.

Thanks.

Hello Everyone. I previously wrote that I had to come off oral Pred which was over about 18 months, from 15 mgs. I had such bad side effects, mostly everything listed - the worst being mental I think. Doctor suggested steroid injection which apparently normally has less side effects. I declined as I was too scared, but after 7 months with nothing I couldn’t put up with the severe pain etc. any longer, so agreed. I had the lowest dose (85 mg I think) and so far it has been mostly good. As he said, the side effects have been minimal and the pain so much better. The first week I wasn’t well at all, but now I can function almost normally. Obviously still painful in some areas and positions but I think it might have been even better if I had had the 125 mg dose offered, but again, too scared! Anyway, I am so much better having had the injection and it is now a month. Doctor said it could last anything from 4 to 12 weeks and I have an appointment to see him after 6 weeks.

Hope this is of interest. Julia

PMRpro
PMRproAmbassador in reply to Juliadixon

There has been considerable discussion about the use of depotmedrone intramuscular injections to manage PMR. tangocharlie and Admiral 06 have detailed posts on the topic. Prof Dasgupta at Southend did a small study which was published in 1990 I think - they used monthly i.m injections and everyone I know who has tried them found them very good.

Juliadixon
Juliadixon in reply to PMRpro

I did print off Prof Dasgupta’s Paper dated 2010 on your recommendation, thank you. I also found a small test done at Guys Hospital in 1991 on 16 patients reported in BMJ.

Perhaps some doctors won’t give the injection though - or perhaps don’t know of it! Julia.

PMRpro
PMRproAmbassador in reply to Juliadixon

Possibly don't know of it - I asked Prof Mackie in Leeds about it and she admitted she didn't know a lot. However - she is using them now.

I very much doubt there is anything nearly as effective as steroids. Yes they come with side effects, but sensible tapering has been the best way for me. (Started 2.5 years ago at 30mg , now alternating daily 7.5/5 mg.)

Obviously you must choose your own path....

I had to stop taking pred because I developed osteoporosis and I'm telling you there is no substitute. But if you are at 15mg and not getting any relief I would question the diagnosis.

Hi, I just felt I HAD to reply to your post. Prednisolone has saved me completely by giving me back some sort of quality of life. (Pred and this website!!!) The massive thing that I have noticed, diagnosed 1 year ago, is diet and there is absolutely no doubt in my mind that avoiding sugar has helped me reduce the steroids. It's well worth thinking about. Good luck, keep well!

Cjcc
Cjcc in reply to Bubble56

I agree, cutting right down on sugar has helped me too. And lots of walking.

Thank you that sounds hopeful

I had multiple negative reactions to Pred. I'm not sure why anyone thinks one solution fits all. My Doc said if I didn't take it he won't treat me. Hmmm! I am on 3.0 LDN [prescribed by GP] which has been a big help. Acupuncture, yoga and manual physical therapy also help. 100% discomfort free is a no but very very do-able.

Hello dear one! Yes, I refused Prednisone and healed myself with food anti inflammatory! I juiced also ! It took me 18 months also I drank 2 liters of water daily!

Fitch1
Fitch1 in reply to health51

Thank you for your reply, what kind of juicing did you do veggie or fruit

PMRpro
PMRproAmbassador in reply to health51

But on the other hand - for about 20-33% the autoimmune part of PMR goes into remission in between 1 and 2 years anyway. It all depends on how much you need to function in the meantime.

Just be sure to take them with dry food - a sandwich, crackers, potatoes, a full meal.

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