Increased pain when reducing steroid dosage

Davblo - oh well, I still think your English is good!!! I remain amazed that you say your Prednisolone tablets are very small but still manage to cut them in half or even into four. Even the pharmacist here has refused to try and do so!

I expect you've noticed on this site that we have a Professor doing research into PMR/GCA and, who knows, one day there may be a cause and a cure, if not for us then hopefully for the next generation. Meanwhile, we all have to keep positive and keep taking the tablets!!!

Mrs O.

I have also been taking Pred for 2 years and have come right down to 1 mg. When I saw the doctor before Christmas he said that the ESR was normal and that I could go down to 1 mg (I was taking 2 mg then). He asked me how I felt and I said I was ok apart from this really dreadful pain in the tops of my legs. He told me that the pain I had was nothing to do with PMR!! He said that I should reduce to 1 mg for about 2 to 3 weeks and then stop taking them. I have 2 more tablets left to achieve this but I am having more and more pain..the same pain that he insists is not part of it.

To say that I am now confused would be an understatment. I'm only wondering if once I finish with the steroids will I be able to find an alternative out there which may help!! What I don't know but perhaps it's time to do some research!!

Mrs P

I'm not surprised that you are feeling confused. My rheumatologist actually commented on pain which returns at the top of the legs and down the front of the thighs, and that is exactly where my pain has worsened in the last two weeks since reducing from 4 to 3mgs. Also, when I got below 5mgs my rheumatologist is leaving me on each reduced dose for 3 months. Is it possible that if your pain is still worsening that you could have another blood test to see if it now shows an elevated ESR (I also have a CRP blood test which elevates when my symptoms worsen)? If you do continue reducing and you are still in pain, would it be better to reduce on alternate days rather than daily? If you read Ragnar's entries on this page,you will see that he very slowly reduced by very tiny doses (cutting the tablets in half) which enabled him to finally come off the steroids. Good luck with whatever you decide to do and I do hope that symptoms improve for you.

I've just joined this forum, I'm 59 and have had PMR for about 9 months. I was prescribed 35mgs of Pred for the 1st month but I had some terrible side effects - weight gain, mood swings, bad temper (!!) heightened BP, palpitations - the last 2 required other meds fhs! So the dosage was reduced to 20mgs and I have been reducing every 10 days since then.

A month ago I had another blood test and my GP told me that the ESR levels had gone almost back to normal - whoopeee, I thought I'd get the meds down even quicker. MISTAKE!!! At 3mgs, I started to feel really bad again

My pain is mostly in my neck, shoulders, arms and ribcage.

But what I wanted to ask is if any of you feel nauseous as well?

I do and it's almost as bad as the pain. It's really difficult to actually describe how I feel - just washed out, tired, major headaches every day. My poor DH is getting a bit fed up hearing about it and tbh, I'm getting fed up telling him - it's now getting rather boring feeling so damned unwell all the time!

Beethoven

So sorry to hear of yet another new person to the site who is suffering from PMR.

You ask if anyone has felt nauseous with PMR - you may get other replies that may help; however, in my experience I suffered nausea and sickness just before being diagnosed in March 2007 with both PMR and GCA (Giant Cell Arteritis which is linked to PMR) the nausea being caused by the GCA. I was put on 40mgs of Prednisolone.

Also, I note you mention you are suffering from terrible headaches - these also were a major symptom of my GCA diagnosis.

From my experience, it seems as though you have come down very quickly from 35mgs to 3mgs in only 9 months, hence the flare up. I feel sure you will be advised to increase back up - in my case I have increased up and down between 10 and 5 a couple of times in the second year, but this time have been advised once below 5 to keep on each dose for 3 months.

Hope this may be of some help and hopefully others will have some useful tips from their experiences. It's no fun but does get easier. Good luck.

I must agree that your reduction in doesage seems very rapid When I had PMR before I took over 2 years to get from 20mg to nothing and in that time had no flare ups This time I started on 20mg in October and am now down to 7.5 I did have a few hot flushes palpitations on 20mg I am also now feeling more tired since the reduction in doseage and if I have any poor nights sleep I do ache a bit so I am now trying to rest more I am having monthly blood tests and check ups with my Doctor and feel grateful that I have a Doctor who is so switched on and caring

Hi again, (and talking of doctors...)

I’ve been meaning to get around to sharing my experience of visiting the doctor on Monday (16th Feb) after a whole year’s absence. Here is a list of the things I asked and/or learnt.

(a) Despite thinking ahead and making a list of questions, I found it wasn’t easy to keep the session under control and get the answers I wanted. The doctor had his own way of running the session and his use of the computer was a distraction. I had to struggle to ask my questions and got the feeling I’d need to meet him several times to get more practice.

(b) Details of another medicine I’d been prescribed by another doctor (Alenat/Aledronet, from over a year ago when they tested my bones and said there was slight osteoporosis due to the Prednisolone) were not visible on this doctor’s computer system. This he said was due to their “privacy/secrecy” obligation when treating patients. He assured me it was the same in England; (remember I’m in Sweden). It meant that full details of my treatment are not collected into one place, which I found really odd not to mention inconvenient.

(c) Why hadn’t they called me for a whole year to check how I was getting on? They don’t do that, they rely on people calling in and asking for advice, blood tests etc. He even commented that it would be too much extra work sending out reminders to thousands of patients. He recommended that I call for an ESR once a month from now on, and if it looks ok then drop back to every 2nd month.

(d) They took 2 blood samples there and then, one for ESR and one for Calcium (I think). I haven’t heard any result yet.

(e) Advice on how to adjust my dose? I showed him a graph I had prepared showing my day by day dose for the past 20 months, and how I had reduced from 25mg to about 5mg with several ups and downs on the way. He said I had done well and should continue in he same manner. Ie. Nothing new!

(f) Tablets. After a while searching he found that there are some 1mg Prednisolone tablets available here but their price was much much higher than the higher dose ones. He prescribed be some 2.5mg instead to go with the 10mg and 5mg I already have. They all cost about £5 for 100 tablets; and having already paid over £160 this current year I only get charged about 20%. (The Alenat, is really expensive though at about £26 for 12 tablets, of which I only pay about £5 .

(g) I mentioned the risk for osteoporosis and he booked for a bone check (this time an x-ray of the heel) for some time in the future when the equipment comes on its rounds to this neck of the woods.

(h) Next an awkward subject; I’d always been confused by what I read about Prednisolone. On the one hand it is said to dampen down the immune response (hence reduce inflammation) and so unfortunately increase the risk of getting an infection. But then I also read that if you get an infection you need more cortisone in the body so you need to temporarily increase the dose. He didn’t even seem to understand why I saw that as contradiction so failed to explain it away. The only part that makes sense is that when you take Prednisolone the body’s own production shuts off; so when you do need more (eg when you have an infection) the body doesn’t create the extra. Then it’s necessary to increase your dose temporarily until the infection is over.

(i) I’ve been struggling with this infection question for about 3 weeks now (before seeing the doctor); having had a cold/flu and finding that although the cold seems to have cleared up I’m still left shivering a lot of the time. To test out what I’d read I gave up my attempts at living with between 5mg and 2.5mg and went back up to 7.5mg. The PMR symptoms (neck and shoulders) responded quickly by disappearing; and after 6 days I think the shivering is easing off gradually, so I’ll give it another week at least.

(j) Another question concerning the fact that the body’s production of Cortisol (via adrenal glands I th

Your medical care seems to be DIY compared to mine !!! I would have monthly blood tests if these dont cost you anything as you see a much better trend on your blood results comparing them with how you feel I think The other blood test you had would have been CRP which is someting like Creativ Protein I cant remember !! I have that every month and the first time I had PMR this was the most elevated of my blood results all the time and my Dr montiored my doesage in accordance with that result I did read on old posts that in Canada they are doing research in to this as possibly being the most important result as an indicator as how your illness is going Good Luck and keep investigating !!

Now I’ve learnt something new. Thanks Mrs G.

From a quick search on the web for CRP…

- “C-reactive protein (CRP) is a protein found in the blood in response to inflammation”

- “CRP rises up to 50,000-fold in acute inflammation, such as infection”

- “Measuring and charting C-reactive protein values can prove useful in determining disease progress or the effectiveness of treatments”

Now why couldn’t the doctor explain that?

I’ll be sure to check whether they did that test and ask for it in future.

All the best; davblo

Hello Davblo

I have similar experiences with my doctor when it comes to computers. I too go armed with a list of questions, but there always seems to be some problem with the machine that distracts the doctor and constantly interupts my flow.

I'm also on my own with the reduction of my Pred dose and monitoring of my condition - I get no regular blood tests. I happened to see my doc about something unrelated recently and he asked how I was managing the PMR and seemed happy that I was alright, but it was just a passing interest.

I read somewhere quite recently that the body starts producing corticosteroid once the dose of pred gets down to 4mg. That's why so many people find it such a difficult step.

Jak

Thanks Jak; glad I'm not the only one struggling with control during visits to the doctor.

Interesting you read another view concerning the dose level at which the body's production of cortisol should try to resume.

I tried searching on google and with key words \"long term corticosteroid withdrawal\" I found a response in \"Google Answers\" where some kind person lists a large number of links to reports and discussions on that subject. I intend to follow them up when I get the time and try to learn a bit more.

All the best; davblo

I just wanted to add quickly that those leads I mentioned are over 5 years old and so many links don't work any more. Also caution is needed when following links, to be wary of \"nasty\" sites which try to mislead or take over your internet browser. At any hint of danger I close the browser as quickly as I can.

Anyway, there does seem to be a whole subject of corticosteroid withdrawal. So as well as dealing with unwanted PMR symptoms during final tapering down, we also seem to be stuck in a withdrawal struggle with the very drug which has been helping us.

One report claimed that full recover of our natural production of cortisol can take a long time; even many months after stopping the dose completely. So any infections or \"stress\" during that period can require that we help the body by taking (a little) prednisolone again; which of course drags out the recover period even longer.

If I'd known this at the start I'd definitely have kept my dose lower and put up with more stiff necks.

All the best; davblo

I have been following this thread with interest.

If you Google - Tayside website, then follow the link for pmrfighters - we can email you some information from a leading Professor who is researching PMR aand GCA.

A National Organisation PMR-GCA UK is in the process of being set-up and is seeking charity status. This organisation aims are Support, Self-Help and Research.

I have been given to understand that it can take up to six months for the adrenal glands to go into full production - that is why it is recommended that dropping down from 5 mg to nil - should be a 1 mg drop every three months and then stop after the 1mg three month drop.

CRP is a better measure than ESR - but both should be taken and read in conjunction. GCA patients need CRP at least three monthly, preferably monthly. GCA is not to be messed around with, it can lead to loss or partial loss of sight.

mrs k

Hi,

I have been reducing my steriods gradually and it seems as soon as I get down to 3 and 4 mg. my pain comes back again. Last week I decided to go back to 5 mg which has helped a little. I also take 1 Ibuprofen Tablet 400 mg. most mornings and by mid afternoon I'm almost running around with no pain at all. Like you I have been a suffer for just over 2 years. When I was first diagnosed I was on a very high dose of steriods (40 mg) so am quite pleased that I have got down as low as 5mg. I am due to see my Consultant next week so lets hope my ESR rate is still coming down.

Hi ritahart & all,

That's interesting, I’ve seen Ibuprofen mentioned several times in posts and it finally brought back something I’d forgotten. When I first began to suffer from PMR symptoms I had tried some “over the counter” Ibuprofen and found it helped a lot. I had tablets from UK first which then ran out, so I bought a packet here in Sweden. After a few days I read the fine print and it says “For short term use, maximum 5 days in succession. Higher doses can involve serious risks”. I had been taking them for 10 days already so I stopped immediately. I then ended up in casualty after a few days with total PMR back.

Since then I’d never considered taking Ibuprofen again, especially as the Prednisolone notes say that - taking non-steroid anti-inflammatory (NSAID like Ibuprofen) in combination with Prednisolone significantly increase the possibility of stomach problems.

So now I’m wondering; is long term use of Ibuprofen considered ok?

Is it ok to mix the drugs or better to stick to one of the other?

All the best; davblo