Other Symptoms when Reducing Prednisone - PMRGCAuk

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Other Symptoms when Reducing Prednisone

Heidi_SF
Heidi_SF

Hello Everyone-

In the 9 months since my PMR diagnosis I've reduced from 15mg prednisone to 4.5mg. My symptoms when reducing have not included my initial PMR symptoms of upper arm and upper leg soreness and stiffness, and stiff neck, but I have had increased fatigue and sweating with reductions. Once I got to about 6 or 7 mg I experienced occasional inner-knee burning pain, tennis elbow, stiff/sore hands and feet, back pain, stomach pain, tightness behind knees, generally sore legs.

I'm wondering, when some of you mention symptoms with reducing prednisone, if you're referring to those typical PMR symptoms of upper arm and upper leg soreness and stiffness, or if you're having these other types of symptoms I'm experiencing? The last time I saw my rheumy a couple months ago, when I mentioned behind the knee pain/tightness, all he said was "that's not PMR." I guess I'm just trying to understand this disease. Would you say my symptoms, even though they may not be PMR, are symptoms I should listen to when reducing prednisone as though they were the typical PMR symptoms? Or can PMR include some of these symptoms too? Is it unusual that I'm not having the more typical PMR stiffness when reducing?

Thanks

39 Replies
oldestnewest

I am also having your same symptoms,reducing from 6 to 5 1/2.

I am going to my Pcp on Wednesday. I am also extremely fatigued!

I think it is RA or osteoarthritis.Is it still PMR or another auto immune disease?

Heidi_SF
Heidi_SF in reply to Baileyw06

Yes, I also wonder if these symptoms could be the underlying disease. After all the reading I've done I'm still pretty confused! Is there always an underlying disease with PMR? If so, then why do people seem to recover from PMR? Can the underlying disease also be temporary?

PMRpro
PMRproAmbassador in reply to Heidi_SF

In the case of PMR the underlying disease is an autoimmune one - and it causes the symptoms we call PMR by creating inflammation is various areas of the body. Unlike most a/i disorders it usually goes into remission sooner or later - for 95% of patients. Anything from 2 to 10 years or so, a median of 5.9 years and a bulk at about 4 or 5 years. A few, mainly people who get off quickly first time round, may have a second dollop that will bear little or no resemblance to the first time,

PMRpro
PMRproAmbassador in reply to Baileyw06

Why? Sounds more like you have reduced the pred too far to manage the inflammation,

Baileyw06
Baileyw06 in reply to PMRpro

Thanks.Would that effect the arthritis also ?What should I tell my Doctor.

PMRpro
PMRproAmbassador in reply to Baileyw06

A lot of people find that the pred helps their osteoarthritis pain yes - so when they get lower it comes back. But there is a world of difference between OA and RA - totally different problems with different causes.

PMRpro
PMRproAmbassador

Not really - providing you are still on a high enough dose to manage the inflammation you shouldn't have any PMR-type symptoms except possibly briefly immediately after reducing the dose which should then improve over the following few days. If it is PMR coming back it will take a few days or more to appear and then steadily get worse. You shouldn't feel worse after a reduction than you did before.

The symptoms you describe at 6/7mg - are you still having them? All the time? At the same level as then or worse? If so, I'd say you may well have gone too low with the dose. And from 7mg your adrenal glands are having to play catch-up - that is where the extra fatigue comes from. You have reduced fairly fast - slow down. It isn't a race.

Heidi_SF
Heidi_SF in reply to PMRpro

Hi PMRpro-

Symptoms seem to be shortly after a reduction, not more than a week. If feeling worse I have upped the dose, unless it's only mildly so. Currently my legs are a bit sore, like the way it feels after a long walk. Have burning at inner right knee that comes and goes. Just FYI, I went from 5mg to 4mg in 10 weeks.

When I saw my rheumy 3 months ago I was at 6mg. His advice was to cut by 1mg every 2 to 4 weeks. I have an appointment with him tomorrow, which is part of the reason I posted today, because he'll give me a hard time about reducing, in his opinion, too slowly. He even made a comment about his PMR patients having such a low tolerance for pain, so obviously he thinks it's something to endure. Yeah...

PMRpro
PMRproAmbassador in reply to Heidi_SF

Yeah - wouldn't be MY rheumy by now...

He hasn't had it himself and probably has never even tried taking pred. It is one thing to hold out when it is withdrawal - that will get better, usually over a couple of weeks but for some people it takes longer. If it starts after a week and then gets worse it is a flare and will only continue to get worse. Leave it long enough and you will be back to the start.

The PMR is still there, you are looking for the lowest dose that manages the symptoms as well as the starter dose. If he doesn't understand that very basic point - he has no business looking after PMR patients.

What you are describing is exactly how my current flare started - this isn't due to reduction, it is an increase in the disease activity. That happens too.

Heidi_SF
Heidi_SF in reply to PMRpro

There's one more think I was wondering about. This doctor said that at my age, 62, he'd want me to get off pred quickly because of the risk of stroke. Does that make any sense at all??

I'll need to figure out how to shop around for a new doctor without getting more of the same. I'll see how the appointment goes tomorrow. As long as I can get enough pred I think I know what to do.

SnazzyD
SnazzyD in reply to Heidi_SF

Oh, and chronic inflammation in the arteries isn’t a stroke risk??

PMRpro
PMRproAmbassador in reply to Heidi_SF

None whatsoever - since GCA itself increases the risk of stroke! As Snazzy says too. Then there is the point that "over 50" is the age quoted in the international guideliness - you'd imagine they might be aware? And it does happen in under 50s too, just less often.

To cover both aspects there is this story:

walesonline.co.uk/news/wale...

Male, 37, GCA diagnosis missed, dies of stroke. Found at post mortem. The pathologist said so so it must be true - they know everything but too late.

I think your doctor could do with a bit of bedtime reading. And a reality check...

Omg. He said that???? What a pig. Sorry but to make such an unkind comment is just mean. If he was an obstetrician I would never let him deliver my babies. Low pain threshold??? How dare he. Xxxx. Please don’t take on that rubbish. Xxxx

Hi Daisychain-

LOL! No apology necessary! It was an especially strange comment about stroke because he also said I'm on the young side to have PMR. So what does he say to his 75-year-old patients? Seemed rude, too! He looks fresh out of medical school.

SnazzyD
SnazzyD in reply to Heidi_SF

Have they not heard of adrenal insufficiency? Such a fast reduction at these low levels could push you into trouble if your adrenal function doesn’t catch up at the same rate.

powerwalk
powerwalk in reply to Heidi_SF

Oh wow - low tolerance for pain - how would he even know what it feels like. All I know is - I was in work every day - in a state that NO-ONE around me woud ever have come in to work. Cheek of him. That makes me so MAD!!!! Horrible thing to say to you.

Do other painkillers help the symptoms you are getting? If so they are probably not PMR symptoms. When you reduce you may get an initial steroid reaction which may last a couple of days or so and that should be it. If you find you are having symptoms a week or two after that, it probably means you have reduced too far and should go up again for a bit and get the PMR under control before reducing again.

I get pain behind my knees and tightness which started with pred. I assumed it was PMR and sort of ignored it.

Heidi_SF
Heidi_SF in reply to piglette

I haven't taken pain killers but that's an interesting point. The tightness behind knees for me also began after starting pred

piglette
piglette in reply to Heidi_SF

You could try it as a bit of research!

Slosh
Slosh in reply to piglette

I believe the Pred affects ligaments and so affecting joints. I have definitely had 'loose' joints since starting Pred.

piglette
piglette in reply to Slosh

That is true. Give a painkiller a go for a day or so and see if it makes any difference. Should be interesting.

I don’t have PMR, just GCA but found reductions between 7.5 and about 5mg really painful with pain all over my body and horrible fatigue. They were particularly in the fibromyalgia points particularly the ones near the knee, elbow and shoulders, but no loss of function or stiffness. I had more sweats too. This acute reaction eased after 5mg although it takes me longer to feel better after reductions now so I’m doing 0.5mg about every 6-7 weeks and will probably slow down even more soon.

Heidi_SF
Heidi_SF in reply to SnazzyD

Thanks SnazzyD. Sounds like me, but worse. The head sweats really hit when I got to 5mg. I too am now doing 0.5mg reductions. Couldn't believe how going from 5mg to 4.5mg hit me, so I spent a few weeks alternating between doses before getting down to 4mg.

Top tip. I might try that.

What about stroke risk in women over 62 on pred? Is that a thing PMRpro???? Xxx

I’m interested in that question too. I have both GCA and PMR and I thought it was the disease itself (GCA) that was the risk of stroke given it affects the arteries,not the prednisone treating it.

PMRpro
PMRproAmbassador in reply to Daisychain12

Not sure about pred - I do know there is an increased incidence of stroke and similar events in the first year after diagnosis of GCA.

However - I found this:

webmd.com/asthma/news/20041...

BUT "... the researchers don't say steroids cause cardiovascular disease, since other factors may have been at work. They could not establish whether the disease, for which treatment with steroids was necessary, account for the higher risk of heart disease in this group of individuals.

For instance, the scientists didn't have information on the patients' disease severity, smoking, obesity, exercise, and diet, although they tried to adjust for at least some of those factors."

In other studies, it was found that PMR doesn't increase death risks - again though there is probably no information about whether that was due to the inflammation being managed using pred or just anyway. It is very difficult to set up a study that can eliinate all the confounders. What is said is that unmanaged PMR is 7x more likely to lead to GCA than managed PMR and GCA definitely is associated with some nasty risks as we well know. Which pred combats...

The back of the knee pain could well be bakers cysts. Mamici has just had hers drained. They were really effecting the quality of her life. There are other conditions like bursitis that can come hand in hand with PMR and cause a lot of pain.

You are at a hard reducing stage. Not only do your Adrenals have to get going but the Pred won’ t be masking any arthritic pains you have had in the past anymore. There maybe some muscle weakness showing itself too. I have just flared at 6 mgs and had to try an extra 5 mgs to control things. It had taken me so long to get to 6 mgs.

Slosh
Slosh in reply to SheffieldJane

Eeek!

SheffieldJane
SheffieldJane in reply to Slosh

Hello Slosh! Long time no see. How are you doing?

Slosh
Slosh in reply to SheffieldJane

Hi - not great the last few weeks. Not sure if it's tapering down from 6 to 6/5 alternating . Went well for a bit and then felt like symptoms started. May also have a virus / UTI at present? Don't feel well and tired.

Work is good but demanding. Leave house at 06:30 and do four stations before getting to work. They may let me work from home 2 days a week to start with and then 3.

SheffieldJane
SheffieldJane in reply to Slosh

Commiserations! That dose, this season, your hard working life. Hope it all eases and you have a lovely holiday season. I’ve just taken an emergency 5 mgs to bat away a flare, having got to 6 mgs. I feel like a new woman but I’m disappointed that this happened.

Slosh
Slosh in reply to SheffieldJane

I know that's the problem - you feel better physically but so disappointed.

Is there anything in particular that brings on flats for you?

I am going to sunny SA to see family for two and a bit weeks in Dec.

Xxx

SheffieldJane
SheffieldJane in reply to Slosh

I had a chest infection, then the flu jab before I was better, add family stress and scaffolding back and front of your house and hey presto a flare!

Slosh
Slosh in reply to SheffieldJane

Ooh yes! Goodness can imagine

I have GCA and have been on 5mg two months now, I have stiffness and pain in arms and legs, exhaustion and sweating in the mornings, it gets better as the day goes on. This is my third time down to 5mg and every time I get the same symptoms, I think it is Pred withdrawal. Doctors are non committal and just offer pain relief which I do not take other than paracetamol because it slows me down. I am staying on 5mg for 6 months to see if my body can adjust to it.

PMRpro
PMRproAmbassador in reply to Hellyowl

I doubt it is pred withdrawal - it is your body telling you that you have found your lowest dose that manages the symptoms - not 5mg, probaly 5.5mg. Or maybe 8mg once a week, 5mg the rest of the time. Honestly worth a try,

Hi Heidi, certainly don't get as many symptoms as you but I do suffer from fatigue and pain in nape of neck, sickness (like morning sickness) which doesn't go away. I am having a camera put down in case I have developed ulcers in the stomach (because of the nausia). My GP is very good and has said she will give me anti sickness tabs if necessary. She insists on a slow reduction and leaves it up to me. I am presently on 9mg. By the way I have a high tolerance to pain so do not feel pain like many people.

Heidi_SF
Heidi_SF in reply to Suffererc

Hi Suffererc-

I experienced severe stomach pain with cramping when I reduced to 5mg and again at 4.5mg. It started 3 or 4 days after the reduction and lasted only 3 or 4 days each time. For me it must related to pred reduction. Hope you can get some help! I know how miserable that is.

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