Prednisolone Success but now have Leg Pain

Bones, joints and muscles
1

Hi all, I am so glad that I have found this forum!

So firstly, let me introduce myself.

I am a (young looking) 60 year old woman who up untill recently had been leading a very fit and healthy lifestye.

I had been experiencing the odd niggling aches and pains in my muscles and joints for over 18 months, but did not think too much of it as I just thought it was the 'getting older' process that happens to everyone. But in September of last year the pain and stiffness got alot worse and seemed to attack my entire body with vengeance. The pain became unbearable and very debhilitating. I was sometimes so bad I could hardly move at all, and I felt that I had aged 20 years in a matter of weeks.

I eventually got my diagnosis of PMR early in November, having baffled doctors and physios' throughout the month of October with what on earth could be wrong with me.

Once diagnosed, my doctor imediately proscribed a daily 20mg dose of Prednisolone.

Within 24hrs of my first dose my pain went away completely and I felt on top of the world and more my normal self, I felt better than I had felt for years. This drug was a miracle!

After two weeks of being blissfully pain free and feeling remarkably well, my doctor dropped my dose to 15mg. I was still ok, fit and well apart from a slight niggling stiffness in one of my arms and in my neck on waking in the morning. These pains subsided after about half an hour, so I wasn't too bothered.

I told my doctor this and he said that was fine. I had my life back, and as a bonus I seemed to feel great on the steroids, with no side effects at all.

After two more weeks the doctor dropped my dose to 10mg a day (my present dosage) as it seemed I was doing so well.

However all has not been that good over the Christmas and new year period. Just before Christmas I developed pain and stiffness in my back which lasted for just a couple of days. It then went away so I wasn't that concerned, as I knew even on the steroid treatment I was to expect the odd ache and pain.

But sadly things have deteriated further, as for the past two weeks on getting out of bed n the morning I have the most excruciating pain shooting down one of my legs starting in the knee joint and stretching up to the buttock. The pain is so bad I can't put my weight on my leg at all for at least five to ten minutes. As I slowly and painfully get moving, the pain does subside and eventually it almost goes away completely during the day.

However, in periods of inactivity it comes back again, and the whole procedure starts up again, especially in the evenings.

It seems I have to be active and on my feet at all times to keep this pain away, which is not a bad thing I know. But this of course is not always possible.

I have not upped my Prednisolone doseage again so far, as I am waiting for my next doctors appointment to see what he suggests. I am now wondering if the pain is not actually PMR, and could be a side affect of the Prednisolone, as the type of pain I have is slightly different to what I was experiencing before.

Question is, should I wait for my doctors advice, or should I up my dose right now myself?

The pain is really excrutiating and hard to take, even for five to ten minutes. But I don't really want to mess with my doses.

Comments fellow PMR sufferers would be appreciated.

2

Hi gillybee,

Welcome to this forum. Although I'm sure you'd rather not have PMR, but hopefully the members of this forum can help. There is a lot of experience on this forum and members are usually willing to share their experiences and suggestions.

The drop from 20mg to 15mg can usually be tolerated (25% drop), but going from 15 to 10 (33%) is too much of a drop. I'm not surprised that you're feeling sore again. Usually as you get closer to 10, the drop is done more slowly... if possible by only 10% (although my Dr. thinks 20% is usually ok :roll: ) I went from 15 to 12.5 for six weeks with the Dr. telling me if I had any discomfort to call him. He said that some people do have trouble reducing. It was another 12 weeks before I could drop to 10 as my ESR (sed rate) had gone up some.

Not sure if your Dr. is a GP or specialist. A lot of GPs don't have a lot of experience with PMR. You didn't say, but did your Dr. do another blood test (ESR and CRP) before telling you to drop?

I'm sure others will be along soon to offer their support and suggestions. Hang in there, it will get better. :?

3

Hello gillybee

Welcome but so sorry to hear you have been struggling with increased pain, especially over the Christmas period.

I agree with Rick that the latest Prednisolone reduction from 15 to 10mgs daily would appear to have been too great a drop for you.

If you are someone who showed raised ESR and CRP markers in blood tests prior to diagnosis and commencement of treatment, then these should have been checked to ensure that they remained stable prior to each reduction.

My experience was to drop rapidly and successfully from 40mgs a day to 15mgs. My next drop was to 12.5 where I stayed for 2 weeks before dropping to 10 but my rheumatologist repeated the ESR and CRP blood tests to ensure that they remained at normal readings before each reduction. After 2 weeks at 10mgs I was able to continue reducing by 1mg a month until I reached 5mgs but this dose failed to keep the inflammation under control and this seems to be a sticking point for many fellow sufferers. I had a roller coaster time up and down the doses for a while eventually staying on 5mgs for many months until the inflammation remained under control and I have now very very slowly managed to reduce to 1mg.

If you are unable to see your Dr within the next couple of days and are still finding the pain \"excrutiating\", perhaps you should try increasing to 12.5 for a few days to see if that gives you some pain relief. If you let the pain continue for too much longer then you may find that you will have to increase to an even higher dose. If successful at 12.5, and if blood tests are normal, after a couple of weeks you could then try alternating 12.5 and 10 for another couple of weeks.

There is no cure for PMR and the steroids are only controlling the inflammation until the PMR decides to burn itself out but most of us seem to reach a point during our reductions where the dose fails to control that inflammation. So don't worry - this is just a little blip for you and once you go more slowly with the reductions, I am sure you will get back to your comfort zone again and continue towards a successful and straightforward recovery.

MrsO

4

Hello there \"gillybee

My doctor put me from 15 to 10 quite quickly and i have also found that some of the aches and pains return. Not on the scale that they have for you. I know that my doctor plans to reduce me again by the end of jan but i have read all the advice here from these wonderful people and I realize that the doctors do not know everything. I hope it all gets sorted out for you and that the pain eases for you

5

Hallo gillybee and very sorry to be welcoming another sufferer but hope you will find the support here one of the plusses.

Your description of your pre diagnosis pain will be very familiar to all on here as well as the pain and stifness in the morning and after sitting still for a while. It does also seem as though it is very common for the active and busy to struck with PMR and very indignant we feel about it

It will be well worth your while to make time to read through as many as possible of the experiences posted here and google PMR-GCA UK where you will find information and details of the Charity dedicated to our illness, individual stories and some professional information, too.

You will find that, although there are some constants, we are all very different in our reactions and responses so don't be surprised or too worried if you find that some of what you read does not apply to you.

With regard to reduction of prednisolone, there are a variety of regimes and one size definitely does not fit all but it does seem to be generally agreed that we should not force ourselves to hurry and it is better to learn to observe and record carefully what makes us feel better and what does not work and act accordingly. My doctor told me to give it a week or ten days to see if things settle after a reduction to see if it is steroid withdrawal when the pain increases and mostly but not always that does seem to work but not at my last reduction which was from 7 to 6.5. This coincided with the run up to Christmas and the extra work involved at this time took its toll. The bitter weather may have been a factor. So I am staying on 7 for the time being. Extra stress, even enjoyable stress, does seem to be a factor in pain fluctuations.

I find it hard to keep a balance.Rest too much and I feel low in spirits, do too much and my muscles and bones let me know.

If you have a bad day and want to have a grouch we will all understand for we have all done it. Give your folks a break and come here to let off steam.

Are you aware of GCA or temporal arteritis as it is also known? Have you been advised to carry a blue steroid card with an up to date record fo your prednisolone dose. You can get them at Boots if your surgery did not give you one. Sorry to sound like mother hen but better safe than sorry.

Best of luck and keep coming back

6

Hi, and a Happy New Year to you all.

Thanks for your fantastic responses to my PMR experience. Your advice and comments are appreciated, and to what I expected from this very informative site.

The happy news is that I became a proud grandma for the fourth time on the 2nd Jan. Mother and baby very well.

The not so happy news is that I am still in considerable pain in one leg on waking and when my body is unactive.

This morning I have increased my Prednisolone dose back up from 10mg to 12.5mg and will see how I go. I am due to see the doctor within the next few days, but after a rather restless night of discomfort I can't wait till then.

Thanks again for your comments and advice. I will certainly be coming back for more.

Gilly

7

Hello Jilly, I congratulate you on being a grandmother again ! I have read your post and I feel so very sorry that you are suffering so much at present. Hope that your doctors can help you to relieve at least the worst of the pain. The lovely and so kind ladies on this site are a treasure. They have helped me so much. I do not know if I could have managed without all their support. I was getting really desperate. I am not exagerating. I thought my life was over. With their support, I manage now to bear some of the niggling pains that seem to come and go. Steadily try to manage the Preds dose reduction. As they advise, take it steady and slow, and listen to your body. I am 87 year old, looking forward for a better future !...... and so I wish for you and all. Love Granny Moss....much better today !

8

Thanks Mariarita.

Yes, I agree with all you say. I have been reading the posts on this site for a few weeks now, and this is my first post.

Even this far, I have learnt far more from the ladies (and maybe the gentlemen too?) on this site than I have from the medical world.

My thoughts are that PMR needs far more research done. There are many of us out there suffering, and it seems the medical proffession has limited knowledge.

Good luck Mariarita for a painless future.

gilly

9

Hi gillybee and many congratulations, Grandma :bubbly: :magic:

10

Thank you MrsO.

Baby is gorgeous and I am still on a high from her birth! 8)

My pain did not effect that..No way would I let the dreaded PMR interfere with that!

In my pre steroid days I couldn't even pick my grandaughters up, my arms were too painful and weak.

That was a major factor in making sure that I got the right diagnosis and some treatment!

gilly.

11

Hi its gillybe posting this. It seems I cannt list my name on the posting for some reason.

I have upped my dose back up to 15mg of Pred today as I could hardly get out of bed this morning. I upped it from 10 to 12.5 yesterday and it made no difference, so it had to be back up to 15.

I was reluctant to do this as I was doing so well with my reductions untill this horrible leg pain started.

But so far so good, as I have had no pain so far today since taking the increased dose. Will be interesting to see how I am later on tis evening when I sit down and relax. This is when the pains usually kicks in.

So fingers crossed for me ladies!

gilly.

12

Hi gillybee!

I've just posted oven on the other thread as well so please read that too!

I, too, had a similar pain to what you are describing, accompanied by pain deep in the hip joint. I had had PMR for about 5 years prior to diagnosis with this type of pain as well and after several weeks at 15mg it had improved a lot. The other symptoms improved within 24 to 48 hours - really dramatic - but the joint pain and the (apparent) sciatic pain took longer. I suspect, in retrospect, that it was due to bursitis in the joints which took a long time to settle (that can be part of PMR). I have had a resurgence recently and met someone recently with another autoimmune disorder who made some comment that means I need to do a lot of online research as it seems it might be associated! I did - and still do - find sitting difficult, especially on certain types of chair. I much prefer to sit with my feet up and lying, sitting up, is even better. An orthopaedist I saw recently was unconcerned about these sorts of pain - pointing out that as we get older the gap between the bones in the spine narrows and can cause irritation of nerves if you stand or walk too much. The muscular involvement of PMR probably compounds the problem.

Congrats on the baby - it's later they get to be pains so enjoy! My GKs are 11 and 9 - really quite revolting at times! :lol: :roll: They arrive for their skiing holiday in about 4 weeks!

EileenH

13

EileenH

Glad your back and full of get up and go, mine has got up and went and I am looking for it.

Run into a 'ten ton truck again'.

Will keep you informed. And yes 'digging' will be appreciated.

14

Hi all. Just to update the situation.

I increased my Pred back up from 10 to 15mg last week.

There was a slight improvement at first, but now unfortunately I am still getting this really excrutiating leg pain in the morning when I get out of bed.

Its so bad I can't move or put my weight on it at all for about 15 mins. But the pain does fade away after about half an hour.

I also notice that I am still getting the same type of pain (but not so bad) if I rest in a chair for more than half an hour. Makes settling down and watching tv in the evening very problematic.

If I go to bed at night with the pain, then its really worse in the morning.

Thing is, the rest of my body is fine. I have no pain at all anywhere else, and I do feel very well indeed (am I the only person who feels fantastically well on steroids??).

I am wondering now if the pain that I am experiencing is not actually the PMR, as the pain is very sharp and seems to be running down the outside of my leg from my thigh and buttock along the sciatic nerve.

Could it be sciatica? Or could it be a side effect from the Pred??

Am I barking up the wrong tree increasing my Pred dosage? Could it something else other than PMR be causing this awful pain?

Lots of questions here for fellow sufferers. Your opinions appreciated!

gilly.

15

If it is sciatic nerve irritation causing the pain (which seems likely) the steroid dose will reduce the inflammation a bit and improve the pain until the anti-inflammatory effect wears off (between 12 and 36 hours depending on the person) - so once you take the next dose and the blood level goes up it will help the pain. It may be some muscle spasm across your lower back that is causing compression of the nerve and that may well also improve once the blood steroid level rises and the morning muscle stiffness from the PMR loosens up as you get moving. It may be total coincidence or it may be related to the PMR - however, it sounds like something that needs a bit of extra help. My similar pain is worse if I lie in bed after I wake up or if I have had a bad night's sleep - still doesn't encourage me to want to get up though :lol:

Feeling well on steroids - tell us about it! Full of energy and the joys of life: it's one of the manifestations at the higher doses - some people get very \"high\" and do all their housework! And added is the relief of the PMR being dealt with.

BTW - did you do anything like that once the pain went originally? You could well have overdone it and strained your back a bit leading to the sciatica.

hope it's improving,

EileenH

16

Hi Eileen.

Thank you for your reply.

I am seeing my doctor on Wednesday so will see what he says. But to be honest, like most people who have discovered this forum, I would rather take advice from those who have the experience of this condition.

The pain is actually different and more severe than the all over pain and stiffness I had when I was originally diagnosed. Not that I would wnat that back!

It is the 'difference' of the pain that is making me ask the questions.

The steroids 'feel good factor'?..Well yes I have to admit I did go over the top a bit with the housework when I got my life back again, as I hadn't done any for ages!

But I don't think I have done any new damage.

When I am without this morning pain, I can still run up the stairs, and I do when I can, so I think I am still on a bit of a steroid high!

gilly.

17

gilly - run up stairs? You MUST be on a high! Or I need to up my steroid dose! I know what you mean about \"a different sort of pain\" though. Hope the doc comes up with a decent suggestion. Wouldn't hold my breath though!

Eileen

18

Sorry about the leg pain, Gillybee but happy about the baby.

I second what Eileen said about steroid highs. I remember bouncing in to see my doctor after a month on 30 when I had PMR first time, beaming from ear to ear. Slower relief this time starting on 15 as per the current thinking. On the whole I had more satisfactory progress eleven years ago and do wonder why the regime was changed. But then I am eleven years older!

Leg pain, yes but mine is from the groin down the inside thigh. It began very suddenly and fluctuates from crippling to tolerable. Cannot identify any contributary factors and I don't want to know about needing a hip replacement if that is the cause. One thing at a time!.

After three weeks back on 7 from 6.5, tried 6.5 yeasterday and so far all well. New year and better weather should help I hope.

:nurse: Nurse didn't like my BP so we try again in ten days. Took it twice with blood letting in between and it varied by 20 points.When I got off Pred completely in 2002 it went back to117/78 and I'm not a bit keen on more pills to chase the pills so shall resist.

Seeds should arrive today. A big ray of hope.

:goodluck: nearest I could find to a plant

Best to all.

19

:rose: Thought I was being clever Betty then realized I'd never seen a packet of rose seeds!!

Lizzie

20

Hello gillybee

I'm so sorry to hear that although you tried increasing the steriod dose, the leg pain hasn't improved.

I notice you are querying whether it could be sciatica. That is a horrid pain and I have suffered with it for a long time - my pain starts in the buttock on my right side and travels all the way down to my foot. I am reasonably comfortable when walking briskly but strolling and stopping around the shops is a big aggravation. Unfortunately, there isn't much that will help sciatica although my physio has now got a new machine that can confirm the diagnosis and he is also confident that he can relieve the pain. I have only recently had a round of treatment with him for upper arm pain (thought at first it was PMR pain but it turned out to be muscle atrophy caused by the steroids) which has been very successful but I haven't embarked on the sciatic treatment yet. Hopefully, if your Dr can confirm it is something other than PMR inflammation, then you will be able to reduce the steroids again, and perhaps try physio.

Very best wishes,

MrsO